The Road Less Traveled

A Season in Pictures

2012-01-17T12:41:00.000-08:00

Philadelphia

2012-01-12T05:55:00.000-08:00

First, thank you all for your thoughts, prayers, and encouragements concerning William and this trip ! Many of you know how apprehensive I was and how much planning it took to make it happen. So thank you so much for your support !!

Wayne, William, and I arrived home last night after our three day trip to Children's Hospital of Philadelphia. Honestly, I am having a difficult time writing any kind of reflection on the trip. Our main goal in meeting with a top Neurologist at CHOP was to get a second opinion on how to achieve seizure control. We also had Genetics at Strong send all William's records. It was a full day for William at CHOP. He had an EEG to monitor brain activity and seizures followed by a four hour appointment with Dr. Bergqvist! Overall the visit was definitely worthwhile and productive but also emotionally exhausting. The doctor was visibly surprised by the lack of white matter in the MRI of William's brain. (It was her first time viewing his MRI with us) She admitted that it was rare but she had seen an MRI just like his recently. Unfortunately the child had just passed away. This was incredibly hard to hear and didn't start the appointment off on the best note. I refrained from asking how old the child had been as Dr. B proceeded to tell us that children with William's condition usually do not live a long life and asked if we had a palliative care team set up. This was NOT a complete shock to us but still very difficult to hear from another neurologist. She explained that given William's lack of almost all white matter in the brain it is unlikely that he will progress past an infant like stage. My understanding is that the white matter in the brain transmits signals to the the rest of the body on how to move, see, etc. The doctor also feels that seizure control is not likely to be completely achieved yet gave us several ideas for new medications/ combinations to try. She encouraged us to consider the Ketogenic diet again with better reflux management and a g-tube. We expressed that so far William loves to eat and still has the ability to; so we are not ready to proceed with a g-tube . If/ when he does require a g-tube to feed we may revisit the Keto diet with her assistance. She also recommended a repeat MRI as he is now older and that we continue to pursue genetic testing. In the upcoming months she offered to share his MRI and records with both Genetics and Radiology at CHOP to get more opinions on causes for the malformation and future treatments. She may also send his information to Dr. Dobyns in Chicago; who I believe specializes in lissencephaly and other brain conditions. Meanwhile we will have another appointment with Dr. Mink (Strong Neurology) to discuss the meds she recommended and talk about a repeat MRI. I am very grateful that she is willing to help us gather more information/opinions and try to figure out what the best choices should be for our sweet William. At home we will continue to challenge him to achieve new things- regardless. It is very difficult for me to make choices about quality of life for my Will Man. Some things are obvious; he is part of a loving family that cherishes him as he is. He loves all kinds of music and being with Ella. He smiles when he hears other children and loves a bright sunny warm day. Yet there are difficult decisions. Is it better quality of life for him to be seizing multiple times daily or to be over medicated and sleepy? To be able to enjoy food by mouth while he is able or should a diet to control seizures be the first priority? It is hard to know what the best choice is... and what worked best for Will a year ago is failing now. It good to know that we have excellent doctors working with us; top minds from different Hospitals working to give William the best life possible.

As an end note: we all got some nasty cold germ that seemed to appear last night. The whole family is sick on the couch.... so I hope this post is put together somewhat well and makes sense!! :-)

My New Mantra

2012-01-06T18:56:00.000-08:00

Ella has taken to crying in the morning and William has taken to being floppy/resistant. Not sure if this is normal "back to school after Christmas break" behavior but nevertheless it has caused some serious white knuckled driving. Their "twin take down momma" moments have given me a new Mantra... actually my first. Yep, if you saw me today in my green Honda CRV racing down Winton my lips were sure to be moving. Repeating to myself , " I am doing the best I can"... my new Mantra. The key is to straighten up the spine, sit a little taller, grit your teeth, think happy thoughts (two beautiful children who don't always cry whom I love) and repeat, " I am doing the BEST I can". ;-p

Early Monday Wayne, William, and I leave for Children's Hospital of Philadelphia in pursuit of second opinions on seizure control. The plans have been in the making for months; CHOP has had William's neurological records for a good length of time. This morning I ran around like a mad woman filling the holes in my personal records. An hour later I was alone parked at William's school with a THICK manila envelope containing hospital records, three radiology Cd's, a bag of seizure medications, and a grande Jamaican-me-crazy coffee. (And short three dollars; didn't beat the parking fee in the hospital garage. 0-30 minutes no fee... apparently I am not that fast)... ;-)

After picking up William; speaking with his nurse and teacher I was 20 minutes late picking up Ella! Repeat Mantra...

Once home the kids are happy; bellies full of pb&j and milk and content to play or nap. I pulled out the radiology cd's and dug in. It's a strange thing seeing your baby via CT scans and x-ray images. There he was tiny Will man; just one day old. The images show all his tiny and fragile bones; his tiny legs, arms and baby parts. I found myself upset remembering the day of the twins birth. Although I know William struggled at birth and needed oxygen it still hurts to think how they whisked him away. The birth was long. Ella came first and was lodged in such a way that she took many hours to push out. After William's birth I was hemorrhaging and required oxygen so all my memories are slightly hazy. I remember the general panic in the OR room and how I was jabbed in both legs with needles; something to stop the bleeding. Yet despite all the birth drama what upsets me the most when looking back was not being able to hold my son. I was not able to see William until the next day. Doctors preformed a CT scan and abdominal x-ray before reuniting him with me; poor baby.

Four years later pouring over his tiny bones, brain, and tummy on these x-ray images I am overwhelmed with love for my now not so tiny guy. After studying the MRI scans of his brain I am anything but at peace. Of course I have seen these particular images before but time or frequency does not ease the shock. Where brain tissue should be there is black (how fluid reflects on images). Only a thin ridge of tissue surrounds the fluid filled middle; with slight folds in the frontal lobes and smooth on the back. Why? all I can say is how? and why? I feel tremendous love but not peace. I wonder if I will ever find peace amid the anger and questioning? I do feel grateful though for his life and his tenacity. For his beautiful smiles and strength.

The cd's are now packed with all the other records and ready for travel. I am willing myself to put them from my mind and simply hold my son. My flesh and blood super amazing son that the images can not come close to representing. At four he still loves to snuggle and falls asleep in my lap. He is beautiful and for him I will keep searching for answers; to achieve seizure control and give him the best life possible. To know that my Mantra is a true one.

P.S

Happy New Year!! No really... I probably should have started off the new blogging year with something more cheerful. Our family is actually doing well... on good days and after 9 a.m ;-p Picture and more updates to follow soon.

Twins Turn 4!!

2011-08-06T10:53:00.000-07:00

William working hard using core muscles to lean over the couch....
Big four year old trying new skills.... still working on lifting the head though..
Ella with her "broken leg" wearing William's brace... a popular topic of pretend play in this house given that her twin does not walk.
Ella with her backpacks ready for her second year of preschool in a month!!
Cake time!! Yes, we let the kids go a little wild with their birthday cake !! Luckily they left most of the cake for mommy and daddy ... ;-)

Mid- Summer in Pictures

2011-07-30T04:24:00.000-07:00

Precious shared moments
Ella and our new neighbors daughter sharing cake

Adirondack Family trip; Lake placid/Keene Valley
The twins first gondola ride up White Face mountain

Cow kisses at a farm in Vermont
A creature at the Wild Center - Tupper lake Adirondacks..

William and mommy taking a scenic breather

Curl love.....

Stinker!

Mid Summer update in words to follow....

Probably TMI; but this proud mommy can't help herself ;-)

2011-06-06T12:43:00.000-07:00

Yes, William went poop on the potty and I am proud enough to shout it out on my blog. Although he can't walk to the potty or sit himself; if he eventually associates bowel movements with the potty there is equipment to help make it a possibility for him. As of right now; he does not communicate when he needs to "go" but there are always indications I pick up on as a mother. So, I thought, why not put him on the toilet so he will have minimal skin contact and discomfort. You may think what is the point of picking him up and putting him on the toilet; but I must say he was very proud of himself. Will this work long term? It is too early to tell... We do own a bath/potty chair that will position him but it is a little too bulky for our current bathroom. (The bathroom pictured is my mothers). In a few years though we hope to have a more handicap accessible home with a larger bathroom..... then maybe we will be rid of diapers (at least while he is at home :-)) I love this picture; with the light shining behind William and I ... even though I had just worked out... so don't zoom in too close :-O My mom snapped the shot after being completely shocked at seeing me rush to put Will on the potty!

In conclusion a side note about an associated but much more pleasant topic is William's eating accomplishments. Since going off the Ketogenic diet he has made some great progress with eating different textured whole foods. Chewing still takes a good deal of energy for him and he panics when he feels a larger chunk of food in his mouth; yet I have stopped pureeing most foods except meats!!! We are still working on self feeding as well and have a long way to go. As I write this I am feeding him tiny pastas (Acini de pepe) with very soft shreds of turkey, chunks of avocado and fork smashed black beans!! Hooray for whole foods!!!

Memorial Weekend in Pictures (with a Few Updates)

2011-05-31T14:52:00.000-07:00

Playtime with Daddy on a lovely warm and sunny Memorial day. William is using his special Childrite chair to practice sitting!!
My big boy sitting tall in his chair.
Our newly planted Garden with a pathway for the dogs (currently training them to use it ;-) because they like to run right through the flowers to our side door. The white fence is a work in progress but coming along nicely. Before our new neighbors arrival; their Realtor informed us of their "deathly fear" of dogs. We had been planning a privacy fence for some time but this was the true motivator to begin building. As it turns out the new neighbor and her four year old daughter are wonderful and actually tolerating the dogs. Over the weekend Ella played at their house for the first time; I was thrilled ;-) The woman was born in India, she moved to the United States 10 years ago, she cooks delicious smelling traditional Indian food, and has traveled extensively... which I find fascinating. For as long as I can remember I have owned a wall size world map and have always dreamed of visiting exotic lands and cultures. India is one of those places, among many, that I have yet to see.

Ella giving William a little push in his Pony gait trainer... "Go William GO"...
Modeling mommy's glasses in her new summer pajamas.
There was a frosted cupcake on the plate in front of William!; he's very happy to be eating a variety of foods again since stopping the Ketogenic diet. Unfortunately, he is once again having multiple seizures every day. Last week he had an EEG (two dozen wires glued to his head for over an hour) which was very stressful for us both and the technician. He cried and fought nearly the entire time; very difficult to watch. ( I think that will be the last one for a long while). Today we had a follow up appointment at Strong hospital with the Neurologist. Our Neurologist is a kind man and extremely intelligent but not very aggressive with treating William's seizures. He maintains an outlook that because of the severity of Will's brain malformation seizures will be a constant during his life and that it won't harm him to let the seizures happen (to some degree). I of course keep asking if the seizures can elicit more "seizure pathways" and interfere with potential development; and if so shouldn't we be proactive to gain control. He insists that the seizures will not do further damage to the brain and should not hinder development. I fear that he does not have great expectations for William's potential development based on his MRI. I do not want to limit my son's capabilities and am also very aware that seizures are uncomfortable and upsetting for my son. I can imagine they are not a pleasant experience to be having daily. Yet at the same time anti-epileptic medications can be highly sedative and have side effects; so it is a balancing act from hell. In conclusion and ending the appointment the Neurologist tells me that, " watching William have seizures daily must be very difficult so I will be as aggressive in treatment as you would like." Which means that he is willing to work with us but throwing the ball back into my court so to speak. So here we go changing medications and increasing doses again at my request... wish us luck....

Bits and Pieces from May

2011-05-24T15:55:00.000-07:00

The twins and I love visiting Grandma and Grandpa's house; especially during hot Spring and Summer days. Grandma's gardens are looking lovely and sumptuous already in May.......
One of my favorites plants; my mothers bleeding hearts are looking much better than my own. My flower gardens are finally planted... pictures to come soon. I don't especially relish digging in the dirt but love splashes of color throughout my yard and watching the beautiful plants bloom. I planted some red tubular plants in hope that hummingbirds will visit this year.

A few months ago I pulled a muscle in my back lifting William; nothing serious but enough to make further lifting difficult for many days. At that point I decided I was a little too plumpy and out of shape. So my personal vision is to be strong and toned to feel great but also because it is simply what my lifestyle demands. William depends on me for all movements; everyday, and he is not a small kid anymore. Yet, not only are the workouts great for strength but I find them incredibly stress relieving. My parents well equipped home gym allows me the chance to workout while still watching the kids. They allow a few bins of toys to be stashed under the stairs and have a t.v equipped with netflix via the Wii near the workout area; great distractions for the twins so I can focus on running or lifting weights.

The picture above is one of the most challenging exercises (for my busted abs anyway). The goal is to hang from the ceiling with the black arm straps/slings and do crunches without swinging. Your body naturally wants to swing so it is a workout in and of itself just to keep still before drawing the legs up. Core strength is key though for lifting.

Last week Ella ended her first year of preschool with a class trip to the Seneca Park Zoo. Her favorite part of the trip was a giant log carved into a bench. In the picture above she is in a contemplative mood; watching the crowds of people trying to entice the tiger out of his cool hiding spot. I can't blame the tiger; personally I would hide too with all those people waving cameras and shouting at me......

William styling the 3 E love wear..... 3E Love is a disability awareness clothing line and marketing company founded in 2007 by siblings Annie and Stevie Hopkins and their family & friends. The mission of the company is simple; to create and market products and services that embrace living life no matter the obstacles, and by doing so, educate society and empower those with disabilities to love life (taken from their website). The wheelchair heart is their fabulous symbol shown along with the 3 E's; Embrace. Educate. Empower. Embrace diversity, Educate your community, and Empower each other. Learn more or purchase products to spread the cause at this website 3E Love Store — ABOUT 3E LOVE and like on facebook!!!

My kids and I often get quick glances or even stares while out in the community. Before my pregnancy and the twins I was just an average person in a crowd; obscure and not used to attention. Which suited me fine since I was the timid wall flower type. So it was a shock during my late 2nd and 3rd trimester of pregnancy to receive attention and even comments practically everywhere I went. When grocery shopping during my 3rd trimester strangers would let me go ahead of them in line... people would nervously ask how far I was past my due date; as if they feared I would go into labour in the middle of the store. When the kids were babies people used to stop us and exclaim, "twins, oh how cute... " and so forth. Now we mostly get stares or comments because my handsome boy is so big (he and Ella are still the same size; weight and height) and not walking or talking. More often than you would think; strangers will stop us and ask questions. Just last week at the zoo a woman asked how old William was and if he was in a special stroller. SO..... since we seem to get this attention; I love the idea of expressive tees, bags, and yes even a bumper sticker to spread the message of love and acceptance for all people regardless of varying abilities. Spread the 3 E love!!!!

Some Random pictures from the month of May and Memorial Day weekend.....

Oh how we love delicious Avocados....
Ella during her dance recital this past week!! She is the blond in pink smack in the middle of the princesses.
A modest selection of flowers Ella and I planted this weekend.
Love birds.... and finally the men in the "family".....

Until We have our boats.....

2011-04-06T09:33:00.000-07:00

Today someone very special is on my mind; as April is her birth month. My cousin Christy was born three months before me; was my first playmate and still is my closest friend. Many of my early childhood memories iclude Christy; playing at our Grandma's "farm", camp circle C, summers spent swimming in her pool, sleepovers.... years of time spent together. Christy and her family moved to Coronado, California when we were 15. She then became my bleach blond, water polo playing, California Cousin. It was always an adventure and sometimes a retreat (after a broken engagement) going to visit her on the west coast. She was/is more outgoing then myself, a little more wild ( ;-p !), and a lot more athletic..... so we never had a dull moment in CA. Driving along the scenic coast, sunbathing on beautiful beaches, partying in L.A., locking the keys in our car in Compton (LOL), night clubs on Las Feliz blvd, camping in the mountains, concerts in the sun, my crush on the Star of India, Christy always leaving her house without shoes ;-) Losing my flip flops at a concert and leaving with a broken toe; enough said ..... so many lasting memories.
Now we are both mothers; Christy has three boys and lives in Iowa while her husband is in medical school. Since becoming mothers (within nine months of each other) we have reconnected and talk on the phone nearly every day. We have supported each other through some difficult times; holding nothing back. This kind of friendship is rare and very special; so I thank you Christy for being you..... for our friendship that is nearly 32 years in the making!!! Especially thank you for helping me to dream again after some trying times when I seemed to stop. Cheers to our dreams big and small... to retiring on our boats; docked next to each other.....in true minimalist style and with sails raised for adventures......
I can't imagine life without you; the past, present or the future.... Love to you... always my " California Cousin"

I am letting Go

2011-03-18T12:39:00.000-07:00

The sun was shining in Rochester New York! The Beyers twins and I headed to one of our favorite "old school" playgrounds made of wood with tunnels and tire swings. Blond curls and blond pony tails blowing in the breeze and reflecting sunlight; what a beautiful sight. My children captivate me. I put William in his sepcial tomato chair in the jogging stroller and pushed him to a sunny spot. Normally playgrounds and too many children make me tense. Most do not offer much for William to do; and he is too heavy to carry around. So usually I push him in the jogger and we chase Ella yet the whole time I end up feeling stressed and guilty that he is not able to do what the handfuls of other children are doing around him. Today I let go of the guilt and the stress; do you want to know why??
I opened my eyes and saw how truly happy William was just to be in the sunshine; to hear the children laughing all around him. He was smiling and cooing and I don't think he gives a damn whether or not he is doing exactly what the other children are. It has been MY sadness and MY burden that he is not "typical".... but really it's all about quality of life. Both his quality of life and mine; life is far too short....

So I am letting go of these feelings I carry around like lead weights; like I have to be A Super Mom. Sometimes mothers of children with severe disabilities can be viewed or projected as martyrs; chosen because God gives us strentgh or because we can somehow handle these challenges. Well, for me its simply NOT true. I don't have any God given strength or visions... I push on day by day; through depression and fear. I am letting go... of all those expectations; my own and those I feel from others. I am done with them. I want my life back. To face challenges with courage yet to smile, enjoy sunshine without guilt, and to feel ALIVE.

and for my closing note....one more thing I am letting go of...

this unrealistic (for William) and godforsaken (my feelings ;-)) Ketogenic diet..... William and I will not miss it one bit

A place of much needed quiet and solitude: The Woods

2011-03-01T19:26:00.001-08:00

So grateful to the special lady in this picture; my Grandmother!! She and my Grandfather moved to the "country" in the 60's. They purchased acres of farm land; beautiful fields and woodland. They knew how to work hard and play hard! My Grandparents built a beautiful home for their five children and a spacious barn. My Grandpa was the Master of the Hounds. I can remember the hounds all barking and riding my favorite horse; Alamo. They also planted dozens of beautiful evergreens; which I LOVE..... When I was twelve my parents built a house across the woods from them; it was magical :-) Literally " over the river and through the woods to grandmothers house we go"...... and since then; the Woods have become like home.....

February Struggles...

2011-02-26T20:24:00.000-08:00

After my last post William and I spent three days at Strong Memorial Hospital. William needed fluids to rehydrate via IV and also some blow by oxygen. He had a chest x-ray which showed broncholitis and continued to vomit in the emergency department; so we were admitted. Although I do not like bringing William to the hospital I must say that the nurses and doctors we have worked with have been wonderful. I will not hesitate to bring William back to Strong if I think it is in his best interest. Would I rather keep him at home? of course! but I don't have oxygen, IV fluids, or nursing care available at our home.

I have to say that since being discharged we have had a very difficult several weeks. William has still been vomiting far to often, still seems congested, borderline dehydrated (according to the urine chem strips); often refuses fluids and has had some awful seizures. I am so sleep deprived that my ears ring and I have no idea if I am spelling correctly!!! William, I am sure, is feeling even worse; poor guy....

We have been working with the Ketogenic dietician weekly to fine tune this diet and try to control the seemingly worse seizures. I am prepared to continue with the diet for another couple months. We will see what changes Spring brings....

On a positive note; I am taking William to be evaluated for aquatic therapy with a physical therapist at CP Rochester on Monday! I am excited about giving him some new opportunities for growth and of course to be in the water. Lets just hope he does not have a seizure and vomit in the pool!!

William and I are also starting another round of visiting preschools for next Fall. I would really love for William to be part of a preschool program and receive services outside of the home next year. Our PT recently told us that he feels William has not made any progress in the past six months and that if I choose to keep him home in the Fall he is only recommending consult PT visits once a month!!!!!! This said when my son does not roll, sit, stand or walk..... I am a little angry....... I have had time to process this and have some thoughts to share with this PT on Monday. Not only has it been winter time when many medically fragile children struggle with health alone but William has also had a very difficult time adjusting to the Ketogenic diet. To say that he has made no progress is harsh. William is a fighter and is always making small gains.... large motor is just very difficult for him given the area of his brain malformation. He is grasping much better with his fingers and making more consistent eye contact. He smiles more despite having such a rough winter and pays more attention to books and toys.... He also seems to be gaining a little more strength in his trunk.

So keep tuned.... Let see how March goes!! Hopefully Spring is just around the corner....

Cheers for Me; Thoughts on Willie

2011-02-08T18:01:00.000-08:00

I recently had some personal good news; the lump, duct, and other tissue from my biopsy came back benign! Great news and such a relief!! During my last appointment with the surgeon he said the incision looks good but the entire area (especially deeper tissue) will take up to a full year to heal completely. Even my follow up mammogram was pushed back until a years time!! The fact that I am constantly lifting my 40 pound son certainly is not helping the healing process but serves as a reminder that I need to stay physically strong.
Speaking of my big boy; he has been very sick these past few days. Thoughts and prayers are much needed. The whole family has been fighting a very bad cold but the difference with William is that instead of blowing out/ or coughing up mucus he vomits. I mean Vomits with a capital V.... he has not kept down any food or liquids for two days now. The main concerns for a child with William's lack of mobility and core strength are aspirating on the vomit and dehydration. It is very hard for me as a mother to watch him vomit so forcefully and not eat. The poor boy is so wiped out that he sleeps most of the time he is not vomiting. I have stopped trying to get full Keto meals into him... just applesauce, whipped cream, and liquids. Feeding is slow going and nerve wrecking. He has remained in Ketosis though and has had very few seizures.
I find during these times that I am high strung with nervous energy. Everyone senses my mood and reacts.... even the dogs are acting out. So I try to watch clips of movies that soothe me or listen to relaxing music; anything to tame the mommy beast. I mean I can't have Ella looking back on her childhood and thinking she had a mother who was a raving lunatic.....

2011-02-07T12:13:00.000-08:00

2011-02-07T11:47:00.000-08:00

Poems and Paper

2011-01-25T10:21:00.001-08:00

As always I feel the need to mix things up a bit; blogging on the computer and the old fashioned writing on paper... reading on my Nook followed by a paper book....

Whatever method you choose; if you still crave the feel of paper here is some I have a passion for...

http://www.greenroomeco.com/

About Sasquatch Paper Products - Made from Recycled Materials

I love the office supply section in stores. I take my time (when I can) and admire all the new styles of notebooks and journals. I even enjoy just a thick brand new legal pad....ohhh lala paper; it gets me excited.... strange I know but true.
Yet, if you find yourself in a bit of a conundrum because you love both paper and trees; check out the links above. More pricey but recycled and oh so pretty. I also found some paper made from stone at a local store. The pages are super silky and unique but much more heavy than regular paper....go figure ....

Happy writing ....

I will leave you with a poem to ponder...

Invictus by William Ernest Henley (1840-1903)

(Invictus is Latin for Undefeated)

Out of the night that covers me,

Black as the Pit from pole to pole,

I thank whatever gods may be

For my unconquerable soul.

In the fell clutch of circumstance

I have not winced nor cried aloud.

Under the bludgeonings of chance

My head is bloody, but unbowed.

Beyond this place of wrath and tears

Looms but the horror of the shade,

and yet the menace of the years

Finds, and shall find me, unafraid

It matters not how strait the gate,

How charged with punishments the scroll

I am the master of my fate;

I am captain of my soul

Update

2011-01-22T17:06:00.000-08:00

I finally took the bandages off and stared that incision down. Not a tear was shed; although it looks as bad as I imaged and is four inches long. I guess I am stronger than I thought. Updates on results to come soon and then I promise to stop talking about my anatomy and move onto much more exciting topics.....

Quick update on William; seizures come and go. Today he had a longer one than usual which was concerning. He seems to have a cold so that might be affecting threshold levels. The appointment with GI went well; although I saw Dr. Brown for a total of ...oh lets see.... 1 minute. I talked mostly to a wonderful nurse who is willing to work with William and I to give this Keto diet our best shot. William will begin reflux medications next week with the goal of moving back to the 4:1 fats: carbs/protein ratio (blah) in hopes of better seizure control.

Tomorrow is Wayne's b-day; he and I are going out for a nice adult dinner... alone....woohoo. Tomorrow we are also taking the kids to Disney on Ice at the Blue Cross arena. My mom and dad used to take me to these shows when I was young and I loved them. I can't wait to share the experience with my kids.

Have a Wonderful Weekend!

Things You Should Know If Your Breast Is Going Under the Knife and other Inappropriate Musings

2011-01-20T19:38:00.000-08:00

A few months ago a lump was discovered in my breast and after further testing; a duct full of filling defects was also found. So the lump and the entire duct along with some normal tissue and ducts had to be removed for testing. As with any new experience I have a whole list of "firsts" from my surgical biopsy. I will spare my readers by omitting the more grisly firsts but some could be considered, in hindsight, comic. Of course I am not saying that the situation is at all funny; I have undergone a considerable amount of stress. Surgery aside, there is the potential issue of pre-cancer or cancer and all the concerns a diagnosis would bring for a young mom and caregiver. Looking back at the surgery though; keeping a light attitude was the best plan and laughter can be a way to cope. So here it goes; things I wish I had known before meeting a breast surgeon and before going under the knife.....

1. As for the initial consult with the surgeon; no wine and dine here it's all about second base...so just whip them out ladies. Not that you will have to whip them out very far; your attire will consist of a flimsy pink paper that opens in the front.

2. Take a pre-surgery shopping trip to stock up on your favorite comfort foods, a sturdy sports bra **** with clasps in the back****.... not the over the head type!!!, and a BJ's size bottle of pain killer.

3. Make yourself a sling; not the type for your arm.... (see pic LOL) Put on your super comfy bra and then bind that baby tight because every wiggle and jiggle will hurt. Make a sling for home and one for under your cloths (out of heavy gauze) for public. Really, I am not kidding here...most mommies can't afford to spend much time in bed even when sick or recovering.... SO MAKE THE SLING!!!

4. Limit testosterone in the pre-op room. Wayne is awesome and supportive but he would have been better off staying in the waiting room for awhile. When the surgeon arrived and made the move to untie my gown Wayne practically jumped in front of him crying , "I'll do it"....whoaaa buddy... no tackling in the pre-op room.

5. Here is a first; having someone initial and draw a "roadmap" on my breast. The initials have not washed off easily but I am glad he operated on the right one....pheww

6. Bring a good magazine, book, or your Nook to occupy your mind during pre-op... and don't let your husband steal it....

7. The anesthesiologist is your friend; communicate well with him/her but be prepared for him to laugh at the things you say coming out of the anesthesia. After waking up I lunged forward calling "William... where are you, are you ok??" .... after being pushed back down the anesthesiologist was laughing saying, " Hey, I thought your husbands name was Wayne"...

8. You may be wheeled into the operating room while still awake and very alert. Prepare to be de-gowned and surrounded. If that in combination with the bright lights and equipment make you anxious tell your friend to hurry it up with the IV drugs. Don't ask nicely; just add a little panic and he will act fast ;-)

If you are like me you will be lucky enough not to remember the actual surgery and have a very numb boob until the following morning. You will wake up with it hurting like hell but until then have yourself a feast then kick back, and sleep. Wear your sling and make everyone do heavy lifting for you....

Although I am trying to make light of the situation; of course I am still very apprehensive about the tissue results. The incision is also still bandaged I have yet to see it. The breast is very bruised and swollen. Even after all is said and done; I will probably cry when I see the 3-4 inch angry red incision; if he followed his "roadmap". I am not a stranger to scarring; I have a total of 15 inches of scars on my body but this is the first for my breast. Am I vain? I like to think I am not.... but I will still probably cry in front of the mirror. Hopefully though when good news comes back from my surgeon I can look at the scar as a symbol of good health and strength. Even if the results show cancer; I know I am strong and have plenty of fight in me :-)

2011-01-15T11:09:00.000-08:00

I have been very introspective lately; lapsing into long silences and deep thought. Which would be a valuable process if the end result was a stronger self-posession and a firmer resolve. Self Possession defined in the Dictionary: calm, confident, and in control of one's feelings; composed. Nope....not by a long stretch. My thoughts veer towards worry; "stewing" as my husband calls it and entirely unproductive.

Today I broke loose; got in the car and drove to one of my favorite places. Hundreds of trees; oaks and evergreens, mounds of snow, and silence....lovely, thick, silence. In The Woods my thoughts seem to slow down and settle like a new fallen snow in the sunlight. My imagination sparks to life; worry turns productive. It's always been this way for me; a strong sense of place. Somewhere I need to be to make sense of things. I feel the same way when standing with my feet buried in sand; watching waves on the ocean.... calm.

Wayne said, "go" and so I did and I took the dogs. He took the kids. I walked and walked in the cold until I was ready to go back and prepare for our upcoming week. On Tuesday I am taking William to see a Gastroenterologist at Strong hospital. GI is of the opinion that if the Ketogenic diet is causing reflux I should simply take him off it. I am not of this opinion because the diet does seem to be doing its purpose; decreasing seizures. So I must go to the appointment well prepared and ready to advocate. On Wednesday I am having personal surgery/surgical biopsy at Highland hospital. I want answers and they come with a small price. I can handle this challenge though; of this I am now certain.

"The woods are lovely, dark and deep,

But I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep."

- Robert Frost

Christmas In Pictures

2011-01-11T18:42:00.001-08:00

The Holiday season began with a Christmas concert
My singing angel refused to wear a halo
William and his girlfriends...
" I am ready for Christmas"!!!
Decorating at grandma and Grandpa's house...

Ella is ready for her first Ballet class!!

She is also a firewoman on the side......
Her tough stance....
Diesel 10.....with the claw!! So exciting..
William opening his stocking...
"oh this shiny paper is so exciting"
Ella takes notes with her Princess Belle pen
The tree with the Polar express train and track

So much to do; so little time....
Phewww finally some cuddle time with Grandma
William loves this lava lamp on loan from an awesome friend
My Family...... Happy 2011!!

Day four- leaving 1600; Home

2010-12-11T19:29:00.000-08:00

During the evening of day four at Strong hospital William and I were discharged. William proved to be a rock star and we were able to leave before Friday which is the typical discharge day for Ketogenic diet admissions. We had so many visitors Thursday that brought snacks, coffee, lunch, reading material ;-) and even presents for William. I can't say thank you enough to everyone who came to visit; it really was such an encouragement during a difficult time. Since coming home William has had terrible diarrhea, thrown up three meals, and still having tonic-clonic seizures; mommy has had just one full out sobbing episode. Fortunately for William we have two different ways of monitoring his health at home while on the diet via blood and urine. So I can tell if he is staying in ketosis and also staying hydrated. All day Friday I was having second thoughts about the diet. Our family views eating a variety of foods as one of life's simple pleasures and now I feel as though I am depriving William of that joy. William faces so many daily challenges yet always enjoys eating..... and now he makes faces when I feed him. Is it worth depriving him of that simple pleasure??? If the diet controls his seizures and he is alert more often... maybe it is worth it. If he is miserable; maybe not. I think for William it is a quality of life issue and I am trying to discover what William's definition of "quality of life" is versus mine and my expectations. Nevertheless; I am pushing myself to be strong and stick with the diet for at least -3-4 months unless it compromises his health. Soon I am going to write a post with pictures of helpful kitchen tools that I think are a must for the Ketogenic diet!!!

This past week two people in my family committed suicide; Wayne's brother and my uncle. I found out about my brother-in-law Tuesday night and received a phone call about my uncle on Wednesday morning. Not only is loss of life so shocking and permanent but suicide in and of itself is horrible. How awful that people feel that there is no other choice but to end their lives; whether they struggle with mental illness or not. How awful for surviving friends and family to wonder if they could have done something different, helped in some way.....

The last time I saw my brother in law was in November. My mom had the twins and Wayne, Dean and I went out for brunch together. I have a vision in my head.... Wayne and Dean in the mini van... me in dad's sports car trying to throw the stick into reverse forgetting to push the stick in and then down. I turned around and Dean was laughing at me... .. he seemed so happy; laughing and winking at me. It is unreal that he is gone. It is unreal that my Uncle is gone as well.... my thoughts are with my Aunt and her children.

My thoughts are heavy with life and loss...... could I have helped Dean more in some way?? I will never know. Wayne will never know..... we sit together in silence with this heavy weight pushing between us. Meanwhile Dean's dog Sheba is sprawled out on our family room floor with Porter..... it's been love at first sight for the dogs... they are inseparable and happy..

4-1600 day 2 & 3

2010-12-08T12:14:00.000-08:00

First I have to say that William is doing exceptionally well these past few days in the hospital. He has been alert and even happy with grins and chattering. The eggnog shakes have been his only meals since Monday afternoon and he is handling this VERY well. I saw three tonic-clonic seizures Monday night and one this morning but none yesterday. Ella and Grandma came up to visit yesterday. Ella likes to pretend she is a doctor or nurse so she was thrilled to be visiting the hospital. Of course I always feel so thankful that she is only a visitor and can leave with Grandma to the comfort of her home. Thank goodness for Grandma; I just can't say it enough.

William and I had a few more special visitors last evening which was nice. After our friends left I called Wayne and received some very distressing news. Wayne just found out that his brother tragically passed away. We talked and finally decided that I will continue on with this keto plan and stay in the hospital until Friday. It is upsetting to be away from Wayne during this hard time but William has come so far and is almost completely initiated to the diet so neither one of us want to give that up. Wayne was at our home and on the phone with his father a lot last night so I was here with William calling many people to talk. It was hard being apart but Wayne had Ella for the night. Tonight Grandma has Ella and Wayne is coming up to be with William and I for a few hours. Please keep Wayne and his family in your thoughts. He will be driving five hours downstate to be with his other brother and father tomorrow. His mother passed away suddenly from a brain aneurism just before we were married 7 years ago. So I think its very important for Wayne to go be with his dad. Of course I am having a very difficult time with this sudden tragic loss of life as well; I was just getting to know Dean as he and wayne were working on our house. Thats really all I have the heart to write at this time. So awful....

For dinner tonight William can eat his first full keto meal!!! I will update with how that goes. Last night around 11 he threw up quite a bit so I am hoping he can keep this high fat meal down. I will update more on the meal tonight....

4-1600 Day 1....

2010-12-07T05:34:00.000-08:00

Monday morning I woke up with great intentions to make a hearty breakfast for William and I. Scrambled eggs with pureed spinach, apple juice, and mashed bananas with cream. Starting the day off right!!.... well, not when William chokes on a piece of mashed egg and throws up the entire meal. Failed meal attempt followed by bath time. Of course William had a huge seizure in the bathtub which just reconfirmed that we are doing the right thing with this diet. Or hopefully the right thing because hopefully the diet will significantly reduce his seizures which will allow us to eliminate some of his meds. The end goal would be more alert time to grow, develop, and play.

At 12:oo noon yesterday we arrived at Strong hospital and met with the Ketogenic dietician. Kelly is a wonderful and very informed lady! For the first couple days in Strong Will is only allowed to drink specific (carb free sugar free) flavored waters and Ketogenic eggnogs for meals. The eggnog is made with egg substitute, cream, and vanilla flavoring. William drank it down with no problems. I was very concerned that he would get upset when not allowed to eat his regular meals.... he loves to eat!! So far though he has been wonderful.....such a trooper. I have been trying to keep him distracted. We took a long walk through the kids floor, down to get my favorite Jamacian-me-crazy coffee, and to the gift shop. I treated him to a bright colored and shaggy monkey toy that screams when hugged.

He had to have blood drawn last night and at 6am this morning; not the best way to wake up. The nurses here are wonderful but had to stick him several times and then dig the needle around for each blood draw. I am just about ready to go get my lady Mrs. L from our regular lab on Monroe Ave and insist that she do the dirty work. She never has to stick him more than once....she has skill; especially since William's veins are so tiny.

So after being stuck with needles at 6 am Will and I snuggled up and he fell right back to sleep. Mommy on the other hand can't sleep well with screaming babies in the background and bright lights. So, I am up jonesing for my coffee and Will is sound asleep. I plan to let him sleep as long as possible.

want to know more about the Ketogenic diet?? Follow this link...

The Charlie Foundation | Helping Cure Epilepsy Through The Ketogenic Diet

November mix

2010-12-06T19:54:00.000-08:00

Wayne and I ready for a night out...

All things that sparkle and shine for visual play....

Our newest family member; Porter ....
Scooter and light box time combined...

Ella climbed into Will's crib to check on him...
Meditation Ella style..."ooommm"

Thankful

2010-11-24T12:52:00.001-08:00

Time to make gingerbread cookies; a Thanksgiving tradition
This child's apron was made by my Grandma; very special indeed

The "oh so yummy" ingredients for Pumpkin pies

On a hike.... my dad and Grandma in the background.

My mom was (and still is) amazing at making Holiday times special and fun when I was growing up with my three younger sisters. We made crafts, baked, decorated, and had so many fun times as a family. I remember every Thanksgiving she would give us a sheet of paper and a pencil and tell us to write down everything we were thankful for. Of course we used to grumble but now looking back I see a huge significance in her having us do that task year after year. I have had SO much to be thankful for in my life. Don't get me wrong; I love to eat and savor the rich flavors of a Thanksgiving feast shared with family. Yet I also think it's important to reflect on the year and how fortunate I really am in so many ways. I hope to pass the "thankful list" tradition on to my children.

For some quick updates; the twins, Wayne and I will be visiting an animal rescue center this weekend and adopting a new member to our family. Wayne's brother was in the hospital a few weeks ago and we took care of his dog Sheba. Long story short; we really miss having a four legged critter in our home. The owner of Joyful Rescues has been wonderful and is working with us to pick out the right dog for our family. Wayne has always wanted a dog and I can't even express how excited he is!!! Finally for his 35th Christmas he is getting the pet he always wanted :-)

Monday morning I returned to the Elizabeth Wende Breast clinic for some further duct testing and imaging. It was an interesting experience sitting in a waiting room clad in a tie front hospital gown. Of course the gown opens at just the right angle to expose my long chest scar. I can't help but to notice women staring like, " what the hell have you been through here".... of course my scar was for my heart and my breasts are unscarred..... at least for the moment. All the imaging showed the original papilloma and several more further into the ducts. Most likely these are benign inter-ductal papilloma's but since there are so many and apparently I am younger than the typical age range for these...my doctor wants them to be removed and tested. The chances are low; but I can't help but to worry. I asked if they could do the surgery at the clinic but since several incisions will most likely be made; they referred me to another surgeon. I feel so fortunate and thankful for my good health so far and hopefully this will be a benign condition.

So as we draw closer to Thanksgiving I am counting my blessings even when jumping over some minor hurdles. Tomorrow will be spent with my amazing family.... good food, fellowship, and good health... I couldn't ask for more. I am thankful.

A horse ride and a Furry Visitor

2010-11-17T06:19:00.000-08:00

What a week its been for the Beyers family. We have been battling colds/coughs on and off but are still having quite the eventful time. This weekend William had his first horse ride thanks to Flower City Down Syndrome Network and Never Say Never Stables in Webster. I rode with William on a huge and beautiful horse. William was annoyed with the helmet that was falling into his face but very attentive and alert. After the ride he was awake until 10 at night!!! He was so alert! Amazing; I think I will look into riding more often with him. My little cowgirl Ella also enjoyed a few rides.

In addition to our adventure with horses we also have a furry visitor this week. Wayne's brother is in the hospital so we have temporarily adopted his puppy Sheba. She is having a wonderful time at our house. William loves to pet her and Ella has been playing fetch with her non-stop. Wheww this dog has energy! My cat is understandably terrified and slept with me all night long!! We are keeping the two separated... :-)

Wow, what a week its been!!

This hallway is our kitchen including the tiny eating area; it's looking a little more crowded now....
Ella showing off her belly to her new friend...
Someone is a little camera shy.... but thinks mommy needs to give her more food ;-)

The Truth.... Update on Last post

2010-11-12T18:31:00.000-08:00

In my last post I wrote about William starting the Ketogenic diet for seizure control. We finally received a date for his hospitalization; December 6-10th. I debated about putting the start date off until after the Holidays but finally decided the sooner the better. Unfortunately his Holiday will not include any sweets... poor Will. No sweets and very minimal carbs but lots of love and kisses and hopefully less seizures. Hopefully more alert time as well.

As for my breasts... (I think mostly females read this blog; but if you are a male...sorry) the concern my doctor and I had over a lump turned out to be nothing major. I spent over four hours in a local breast clinic getting many mammogram pictures and a ductogram. Anyway, I have to go back for another test in a week but it's nothing too concerning. I will not go into anymore details. So as I recently told a friend; back to worrying about my children and not myself..LOL

I recently emailed some parents from the Lissencephaly loop about some of my concerns for William's development. The people I have connected with through the loop have been such a huge support to me even though I have not met any of them in person (yet). This is the part of my blog post where I am going to be bluntly honest; there are so many challenges in raising a child with severe disabilities. William has my heart.... there is no one I love more than he and Ella. He is a beautiful and sweet boy; who I love to be with. Yet most days I feel a sadness that I have to overcome. Everyday I grieve that my son is not able to roll, sit, walk, talk, eat without choking and aspirating, grasp objects, see well, laugh, or even be comfortable and at peace without seizures.

Today my sister Katie and I brought the twins to a playground; it was a beautiful Fall day. Ella found a little friend to chase around. After the boy left she came up to me nearly in tears and said, " why did he leave.. I need a boy to play with." This said by a girl who has a twin brother.... My heart aches. It F*&^ ing aches and I hate it. William should be the one running around and laughing with her. I take a deep breath and do what I can... I push William in his jogger and we chase after her, I put his tomato seat into swings and bouncy cars ... but he is getting too heavy to carry around.

That being said (judge me as you will....) I work so hard with my son and grieve that he is still at a 6 month level. Especially now that he is in the pre-school system; where he is being compared to his typical peers and expected to meet goals and objectives that are so hard for him to attain. It's so hard to see my son struggle with basic things others do so easily. I will continue to work hard EVERYDAY being his mom/therapist but at the end of the day I only want to hold him close to me... cover him with kisses and whisper, " I love you so much just as you are." And I do... but it breaks my heart.... everyday.

Autumn Love

2010-11-12T07:46:00.000-08:00

A very tired Sheriff Woody....
The Joy of pumpkin guts...
Enjoying a nice Fall day....
William listening for Thomas's whistle...
Soft bunnies and pony rides at Bristol Garden Center

Ready for Halloween

2010-10-30T18:35:00.000-07:00

The twins are in their spider jammies and ready for Halloween. Tomorrow we will have a small party with family followed by trick or treating. I have all sorts of fun food concoctions for the kids and some yummy treats for the adults planned. We are all anticipating a festive day!!

A quick update; I did hear from the Ketogenic dietician at Strong hospital and I am now waiting to schedule a date for our week long hospital stay. The diet is closely monitored by a trained dietician and neurologist and could decrease seizures. If the diet works well for William we plan to wean him off one of his three seizure medications. Hopefully this will increase his alert time as well as help him to sleep better at night. If you would like to know more about this diet; here is a link....

The Charlie Foundation | Helping Cure Epilepsy Through The Ketogenic Diet

I have my reservations as well as hopes. This diet is very intense; every calorie and gram has to be measured out and only certain foods can be consumed. Absolutely no carbs and mostly fats in creams and butter. Honestly the diet sounds outright disgusting. The fact that I am willing to subject my son to it speaks of my desperation to stop his daily seizing.

On a very personal note; the doctor recently confirmed that I have a lump in my breast. So I am starting my week with a mammogram at a local breast clinic. The doctor thinks it could be a simple cyst but considering that I have had it for awhile she wants to check it out. Of course I am not thrilled to be getting a mammo at 31 but better to be safe than sorry!!! Hopefully it is nothing but the whole thought of "worst care scenero" is topping off my cup of worries to overflowing.

Well, I always think better to be proactive. So November may be a busy month here in the Beyers house but I am hopeful that good things will come from being proactive. Positive changes!! In the meantime I am trying to push worries aside and celebrate a fun Holiday with my beautiful family! Happy Halloween!!!

Catch a breath...

2010-10-25T19:54:00.000-07:00

Late Summer and early Fall have passed in a whirlwind. I can't seem to catch my breath.... and I am told by friends with older children that it only gets busier; more commitments and running around. Not to mention that at some point in the near future this mommy has to go back to work. Where, when, what; all those W's I haven't figured out yet but living off of one income these days is nearly impossible!!! So even when I am not physically running around my mind seems to be spinning. You know those nights that you head to bed with good intentions of sleeping and only toss and turn; stare at the ceiling.... stare at your husband... just stare while your mind won't shut off....

I can't even remember if I was like this before kids. The BEFORE KIDS seems blurry. I suppose I have always been restless. Yes, it has always been hard to quiet my mind and relax; whether it's worry or daydreaming.

These days I have plenty to worry about and I do try to find some things to anticipate and look forward to. Of course I look forward to each and every day with my kids. Even if the day before was a hair-raiser (like today)... with myself feeling a little under the weather (again), a punchy and very defiant typical three year old, and a half asleep when-not- seizing William love.... anyone's patience could be worn thin. I am waiting on Strong hospital to mail a stack of genetic testing forms to review before more blood draws for Will man. We have a new list of x-linked syndromes to test for; which of course may eventually lead to testing my x chromosomes. I am also waiting for a dietician at Strong to call about starting the Ketogenic diet (for seizures). William's seizures have been getting considerably worse and he is on the max dosages for all three medicines. So I am starting to look at other alternatives before adding more meds to the mix. I say "waiting" but I have actually left several messages for this dietician. She must not know what it's like to watch your child seize multiple times a day and to feel the near constant sense of urgency and helplessness that I do.

As a mom of twins; I must equally represent both ;-) Ella is doing well in her pre-school class. Initially she had a difficult time leaving me but has now made a few friends and waves goodbye like a pro. Some of you might know that I had her evaluated for speech a year or so ago. My concern was always articulation which is addressed in preschool rather than EI in some cases. I still feel pretty strongly that she could benefit from speech and think she may be getting frustrated due to her teachers not being able to understand her. Other than that she is happy, full of imagination, wonder and always on the move :-) She has struggled a bit adjusting to all of William's new therapists. Every afternoon he has one or more therapies and the providers are all new to us. So far though William seems to like and do well with all of them.

As for myself and catching a breath; I am very fortunate to have my family. My mom loves to watch the twins and this past weekend I got a much needed break. A delicious dinner out and a quiet night of sleep can make a world of difference. Especially when followed by brunch and lots of coffee at my favorite diner the New Yorker. So I would like to end this blog post on a positive note. Cheers to super Grandma's that help in times of need; give us some down time to catch our breath and regroup; to see that we are truly blessed with a beautiful family.

Adirondack Pictures 2010

2010-08-29T16:37:00.001-07:00

My Three Main Mugs

2010-08-29T08:51:00.000-07:00

I have so much on my mind of late. So many to do's, deadlines, registrations, and evaluations. Doctors appointments; pediatrician (to vaccinate or to not vaccinate), genetics (more blood draws), neurology (sleep study? Ketogenic diet or try a fourth seizure medicine?). So much to do, to decide, to discover and yet my thoughts dwell on people and relationships . People I love (I couldn't do this journey without you)..... people I hate... yes, a convicted sex predator was found riding his bike through a local park. SAY WHAT? A man convicted of abusing several children was let out of jail? Unbelievable. Good thing some fellow citizen watches America's Most Wanted. Anyway, I am often thinking of how I could be a better friend, a more loving wife, a better daughter, and a good mother. Life is an intricately woven (sometimes tangled) web of relationships. Which is what I live for... but today I need a break. A breath of air... a swig of coffee... a notebook... silence... alone. Just a brief slice of time where there is no expectations of me from anyone.

So today I'd rather type out a random little blurb about trusty inanimate objects that I have placed sentimental value on; silly really but true all the same. Meet my mugs... ;-p

My three trusty gals lined up (l-r).... my Grandfathers old mug for camping; it fits into the curve of my palm just right. In the center is the Kokopelli mug that feels rough and earthy; a gift from my mom when we visited Estes Park Colorado (a well traveled mug). Finally a hand-crafted mug found at an artist fair when Wayne was pursuing graduate work in Athens, Ohio. This mug has weight; surely I could knock someone out with its heftiness. Before moving back to Rochester; Wayne and I hunted around for some treasures that would always remind us of the unique college town of Athens where we spent our first two years of marriage. We found a few framed pictures of the Athens University and scenic Appalachia; the pictured mug, and a single glazed star patterned brick from a run down brick factory. The search for the prized brick incidentally ended with horrible poison ivy all over my body and eventually a steroid shot in the.... ahem.....bum... given by a very handsome male doctor. The brick now sits on our back porch and Wayne will never let me live that one down.

So now you've met my mugs and heard a random tale from my past. Tomorrow I must form the "to do" list and schedule some appointments. As for people..... I need to make my kiddos lunch; perhaps today calls for a picnic in the sunshine and some more coffee. Which mug should I choose? :-)

Where Are those Curls? and so much more.......

2010-08-18T13:26:00.001-07:00

William looking deliciously handsome with a full head of curls....
Where are the curls now? Yes, mommy went a little overboard with the cutting... but he looks so mature with the big boy haircut. Now at 37 lbs he certainly is a big and healthy boy. William has had a few colds this summer but has been pretty healthy! Seizure control has been the largest health challenge; as I just put a call into Neurology yesterday and once again we are increasing his medications :-(
Ella and daddy triumphant after a successful potty run....
My big three year olds and I.... the twins turned 3 on August 3rd after having a wonderful party with many friends and family. We are closing the summer with another trip to the Adirondack mountains. Friends of my parents own a townhouse in Lake Placid and give us a fantastic rate.

The Beyers family will be kicking off the Fall season with Ella starting preschool two days a week and William entering the 3-5 system but receiving all home based services. Once a week William and Ella will be going to a play group together and William will hopefully be taking some water therapy classes. I am also pretty sure William will get music therapy in the home as well!! We live in such a fantastic area rich with resources for children with special needs. Which brings me to our fundraiser for a group we are part of called Flower City Down Syndrome Network (FCDSN). Every Fall the group holds an event called the Buddy Walk to raise awareness for people with Down Syndrome and to raise funds that the group relies on. Our family joined this group a few months ago and this will be our first Buddy Walk. To sponsor us and help by making a donation go to this link ;

http://www.firstgiving.com/erinbeyers

Even a small donation will not only benefit our family but many other families in the Rochester area.

Mommy is trying to kick off the Fall with some new experiences as well. I applied for a contest which is giving away scholarships for an online writing class especially for mothers. I am keeping my fingers crossed :-) I enjoy writing but would love some guidance. One year ago this September my friend Jamie and I started a support group for mom's that have children with multiple special needs and/or are medically fragile. The group just changed its name to MEMO- Meeting Extraordinary Moms Out (thanks to Carleen!!!!). As the name suggests we meet out once a month for dessert, information sharing, and support. Ten women came out last month; two of which were new! Our group will also be featured in a local free publication called Rochester area and Genesee Valley Parent for their annual September special needs issue.

So exciting!!!!

Adirondack pictures will be coming soon :-) Happy August!

"more more more"

2010-07-14T18:59:00.000-07:00

I am hoping that all my fellow bloggers continue to read even after my last depressing post; I try to convey my life honestly. Some days are great... and others.. not so much; which I know must be the same for many people. So lets just be honest and ride the waves with each other.

This week has brought about some positive changes. Ella and I have been working hard on potty training so she will be ready for pre-school in the Fall. (The program asks that children be out of diapers.) Originally I thought of this training as a dreadful chore but then decided to have a change of heart and be excited about this new step. I took Ella alone on a special mommy date; we went way overboard and selected MANY pairs of awesome underpants (girl and boy pairs; because she wanted Cars and Toy Story as well as princesses). We then took our underpants; the new "eye doctor kit" (a splurge) and went to lunch. We sat across from each other and ate while Ella listened to her own heart with the stethoscope. A rare moment for us and a memory I will cherish. I am still trying to keep up my motivation even when cleaning poop out of big girl pants; but overall she is doing well. We are on our way....

William has been consistently hitting his communication switch to ask for more during meals despite the increased seizures. It is a simple device that has my voice recored onto it saying, " I want more." I put it on the far end of his tray while he is eating so that he has to purposefully reach and hit the button. I am not sure that he sees the switch but he feels for it and then hits it... again... and again and again!!! :-) He is very demanding when it comes to food and I could not be happier.

http://enablingdevices.com/catalog/assistive_technology_devices_used_in_education/assistive_technology_for_speech_impaired/small-talk-w-built-in-icon-holder

And finally I received a long awaited call from our pediatric genetics office about several tests we are doing with William in our search for a specific diagnosis. Our doctor already tested for "hundreds" of more common syndromes and completed a micro-ray analysis which shows that his chromosomes are typical. Of course we know via MRI that his brain is not typical; he is missing a lot of tissue in the center and the occipital lobe is smooth versus a normal brain which has ridges and folds. These last few tests were for more rare syndromes and ALL come back negative. We may have one lead; a blood test showed elevated protein levels. I am taking him in to get another blood draw next week for a re-test and then testing for some metabolic disorders. I spoke briefly with a genetics counselor over the phone who told me high protein levels could simply mean he ate to much chicken or his body is missing some enzymes that break down proteins and high levels could be toxic to the brain....hmmmmm... I hung up the phone thinking genetic counselors are evil. Of course they aren't and we just need more testing and more information to work with; but alas the wait goes on....

I will update more when I know more... ( I like the dot dot dots :-p ..... )

On the lighter side; my birthday is approaching and I am going on a much anticipated trip with Wayne to Toronto for the Jack Johnson concert!!! We are going with my lovely sister Katie and her boyfriend, Ben, so it should be a fantastic time. Hopefully a time to relax enjoy some good food and drink, let loose, and reconnect.

Today I Cried

2010-07-08T20:27:00.000-07:00

Most days I count my blessings (so to speak) and feel incredibly fortunate to have two beautiful children. Some days I cry.... because I love my son and want so much for him; so much that he can not yet do. Today was one of those days; the tears were unstoppable. Even though I know how fortunate I am to have my healthy and beautiful children today was once of those days that I wanted to go back to bed, bury myself in the covers and cry myself back to sleep. My son has had some rough days; lots of seizures... which makes him irritable (understandably) and then very sleepy. This is the reality with William. We will have several good days where he is cooing and trying to make eye contact; alert and happy. He wants to be included and loves hearing Ella's voice. He hits his light up toys and has a voracious appetite ... then we will have several days of sleep. Days that I struggle to keep him awake long enough to eat a meal without choking, days that I miss his eyes being open. I call these the absent days and I miss him horribly; although he is physically present yet absent... my heart literally aches.

On these absent days my mind is raw and exposed to wander to dark and depressing thoughts. Thinking about the grey and gloomy "what if's"..... On these days Ella is my light... her laughter; her humor and her precocious attitude keep me going.

Today was Thursday; our weekly parent/child group at a local school for children that have various special needs. My mom took Ella on a special date so it was just William and I going to the group. I was excited for a chance just to focus on Will during the class... he had other plans. He wanted to sleep... so I tried to wake him and it eventually lead to a complete melt down. He was inconsolable and I had had enough. It has been a rough week with preschool evaluations; checking "no" on so many developmental milestone boxes; trying to tell professionals (that I had never met before) how he HAS made progress even if it does seem small.. only to hear an indifferent, "aha...ok well, next question."

So I made excuses and left todays parent/child group; I raced William out to the car and broke down. Completely sobbed... until I was calm enough to drive. William slept in his carseat... I drove around town just listening to some of my favorite music until the tears were gone. When we got home William woke up and smiled; glad to be home and I was ready to face another afternoon.. eager to see my daughter. Once in the house William feel asleep again and slept most of the day; I had to wake him for meals; he choked a lot. Another day of absence; my heart aches.... and yet tomorrow is a new day. I hope to see his beautiful blue eyes more often tomorrow....

now if only I could force myself to sleep and think of tomorrow

Delicious Summer Time

2010-07-05T04:30:00.001-07:00

In the Summer time when the weather is fine;

we like to take our time .. soak in the sun

feel the warm breeze on our skin

taste some delicious treats,

and take a swim..... seek shelter in the shade

and then begin again..

Sweet William
Ella eating a treat at Grandma's house
Family pic on Grandma's Ranger
Trying some of Grandma's famous Mustard
Dipping into the Lake with my cousin
Ella heading for the waves
Ella and my cousins Boys; Quint and Russell

Moonlight

2010-06-24T19:41:00.000-07:00

Beautiful, Bold and Bright

the moon

tonight

I stand... small and pale in this light

waiting

waiting for you

tonight

eager for flight

yet anchored... by blood

tonight

If the magic in this moon

could give us sails and set us free

come

be with me

tonight

Floating in the Sunlight

2010-06-12T12:29:00.000-07:00

Eventually Wayne and I would like to sell our house and move into something slightly more spacious with wide open spaces; preferably a no threshold ranch for William's wheelchair and other heavy equipment. So I made a deal with Wayne that I would "disappear" with the kids almost every weekend this summer so he can do all the repairs our home needs in order to sell it. It needs a lot of work; and I need places to bring the kids. Which is why I am at my parents house waiting for my afternoon coffee to brew and listening to my dad's itunes. I really can't complain about being a wanderer on the weekends; Wayne works very hard at work and at home and I have had a wonderful afternoon with the twins.

At my parents I filled the oversized inflatable kid pool with nice warm water. While Ella was napping William and I submerged ourselves and watched the sunlight filter through the tree branches above our heads in perfect silence. It must have felt so good for Will to be weightless while floating.... good to loosen his tight joints and muscles. He even let me float him around in circles with minimal support under his head. It really was a beautiful moment; one that I want to remember. Floating in the sparkling water feeling the slight breeze and warmth of the sun; just listening to my son coo and watching rare smiles flit across his face.

Life can be hectic; I worry about money; my kids, my marriage; and some nights I can't sleep. Yet... these beautifully simple moments shared with those that I love make life that much more rich and enjoyable. My life is good but sometimes I need to let go of the stress and just float for awhile...........

A month in Pictures

2010-05-21T20:18:00.001-07:00

William in his gait trainer... this was taken a few months ago.. he has had a rough patch but is now getting back into it.
Sleeping beauty.... in mommy and daddy's bed; a habit we need to break...
Very serious about drumming... Benny Greb style
Daddy and Ella having lunch with Grandma and Grandpa after her concert....
My handsome William
" Mommy I am hungry; just feed me already"
Ella sings on stage with her class.... she is in the pink dress with boots (her idea)!!

William in his sweet ride .... snoozing...
My loves together....

Rain

2010-05-05T19:21:00.000-07:00

This evening I was bent over my garden planting the first batch of Annuals; bare knees plunged into the soil. William was propped up in his gait trainer.....legs dangling and head bowed. Gentle warm drops of rain began to fall on us. As I tilted my head back to catch a drop I noticed my son doing the same; letting the rain trickle to his chin. He smiled and something in me sparked; I was transported....

(remembering)

nights in college, breaking from studying and walking in the rain. Alone or with someone but always feeling so fresh, alert, and invigorated.

and now...... I sometimes feel that I am trapped on auto pilot; have I become comfortably numb? Although I love being a mother and watching my children grow and experience new things.........I need to feel alive and to see the beauty I used to see. I have become so busy, so sleep deprived, so worried, so so so so so ... that I sometimes fail to enjoy the simple things in life. To plant flowers in the rain and feel

refreshed

awakened

invigorated

more than just...

to survive

but to truly

Live

Very Busy Teething here in the Beyers house

2010-04-05T13:52:00.001-07:00

A rare smile between bouts of screaming.
William getting his second year molars means increased seizures and all around irritableness. Here he is showing off his mouth full of teeth....

Just watching the birds

2010-02-24T12:38:00.000-08:00

Hungry chickadee at Mendon ponds park.
Watching for birds....

Refuge for injured birds called Wild Wings at Mendon ponds park.

Our family recently had a nice adventure at Mendon ponds park feeding chickadee's and checking out the birds at the Wild Wings sanctuary. Wild Wings houses and cares for over 20 permanently injured birds of prey. Such beautiful birds!! Right now they are also caring for a bobcat that someone had cruelly caught and declawed to sell in the black market animal trade. The entire facility (which is small) is stroller friendly; perfect for everyone!! Our favorite was a little owl but he looked scared so I did not take a picture. To learn more about these birds visit

http://www.wildwingsinc.org/

Its almost March!!!

February

2010-02-13T08:01:00.000-08:00

It's been one of those weeks that make me feel like screaming and then screaming some more. Did I say week? I meant one of those months.... I should title this post " I HATE FEBRUARY". Dear Grey and dreary February, f-off and take Valentines Day with you. I am just reminded how lonely I feel sometimes and how much I miss sunshine and that the overly marketed diamonds and roses will NOT make it all better. But maybe dark chocolate and dark beer......... ;-)

SO now I feel better after getting that off my chest. I promise no more angry ranting on this post just a few random stories from February....

Strangers

For about a month Ella greeted Wayne after work with the mournful statement, " Will's balloon blew away." Apparently watching a balloon float away is traumatic for a two year old. So one day the twins and I were at wegmans in search of a snazzy new replacement balloon to make the world "right again" in my daughters eyes. We finally found the perfect heart shaped balloons; red and silver with glitter to catch William's eye. Mission accomplished...... accept for the super chatty cashier that was eyeing William in such a way that I knew questions were coming. I try to be an advocate for my son so that people might understand disabilities better but on this day, on our balloon search, I just was not in the mood. Regardless of my mood; the questions came.

Cashier- " wow, I have never seen a seat like that before" (he was in his special tomato chair). He sure is sleepy....... it's not a usual nap time."

I quickly explained that the chair was from a specialty catalog for kids who had low muscle tone and could not sit up on their own.

Cashier -" Well, he does walk right?? "

Me- "No"

Cashier-" But does he at least talk?"..............

Me- "no, but he does communicate with body language and other vocalizations."

Cashier-" oh, well...... will he ever talk or walk......what will he be able to do?"

Me- " I don't know but he is healthy and content most of the time."

Cashier- " Well, you know my daughter had delays and received early intervention services. She is "OK" now but my family always accused me of being on drugs while I was pregnant."

Me- " that must have been offensive. Sometimes we have no control over what happens even though we are healthy during our pregnancies."

She smiled and wished us luck. I grabbed the balloons and escaped to my car where I could be alone and not answer questions that I don't know the answers to. I still think about her though. Complete strangers asking ourselves the same questions; what happened and why . So, in May Wayne and I are going to pursue further genetic testing...... maybe we will actually have some answers. Wish us luck.....

...............................................

My favorite post office is a quaint little place in Fishers on the way to my parents home. The building is quiet and there is usually no line. This week I was stuck behind a man who apparently had a lot to mail. So while waiting I spotted a worn little newspaper clipping hung on the wall that said, " talk to those you are in line with" so I did just that. I found out that he has three boys who are teens and "oh, how quickly they grow up." We made small talk about our kids and then as he was about to leave he said,

" Well, I can see you have healthy kids and that is all that matters .... you are lucky."

Part of me wanted to retaliate and tell this stranger,

"you have no idea... my son is very delayed ..... don't tell me what matters."

Yet, on the drive home I began thinking how right he was. My children are alive, healthy, happy and that really is what matters. I am indeed very lucky to have them in my life. William may be delayed but I love him regardless of what his abilities may be.

Now a few days have passed and I am feeling angry and bitter that William requires a level of care much like an infant. That he can't move himself and I have to reposition him so often through out the day that my body aches. That feeding him takes 45 minutes to an hour and he wants to eat every three hours. I want to shout, "this is NOT ok..... it's not ok for a little boy to not be able to move himself or feed himself." I feel such hot and intense anger until I remind myself of that conversation with the stranger in the post office. That William is healthy and at home. We have a special kind of love and I CAN do this and so the pity party ends.

Thats all for now.

and then he bit me.......

2010-02-10T20:15:00.000-08:00

William and I were not seeing eye to eye today and when push came to shove..... he bit me. Usually I pick him up and carry him with his face by my shoulder; he nuzzles and kisses me and we get along just fine. Today, for the very first time, he nuzzled into that spot right between my neck and shoulder and took a little bite. I was taken completely by surprise but knew exactly why he did it. All morning I had been cranky, lacking patience, and in general just miserable to be around. I spoke harshly to him when he did not deserve it. The poor boy has been teething for weeks and mad as hell about it. He had finally had enough and he was going to tell me all about it......by taking a bite out of me.! So we made a truce; I stopped snapping at him and he stopped bitting me and the day passed by a little more smoothly. ;-)

Happy New Year

2010-01-08T07:37:00.001-08:00

The first photo of 2010- Ella with her frosty.....
The twins and I were very happy to spend lots of time with Aunt Ame who was visiting from Colorado..........
William practices in his new gait trainer called the Pony!!!

It's back to our "everyday life" now that the Holiday season is over and the last of the visiting relatives have left town. It was wonderful to see my sister and cousin visiting from out of town and to spend time with family. Already I miss them. Yet I feel a sense of calm now that the Holidays are over and I am actually eager to settle back into our normal routine. I am content to be alone for a few hours a day. In fact I am that type of person who needs my alone time; for reflection and quiet. I need alone time just as much as I enjoy being with people. Its all about balance which of course is much harder while raising children :-)

The past few months have been difficult for me emotionally for various reasons. Wayne and I took a much needed break in late December to celebrate our 6th wedding anniversary. The twins stayed with their fantastic Grandma!! (Thank you Mom ! ) During that trip I was able to sort of recollect myself and have some alone time in the beautiful Adirondack mountains. Uninterrupted alone time with Wayne was also very nice. We did some skiing and ate lots of hot meals in cozy pubs. My favorite pub, in lake placid, had beautiful stained glass windows and a huge cobblestone fireplace. I could have stayed there for hours warming by the fire and drinking Ubu, lake placids very own rich and tasty beer.

When Wayne and I returned home Christmas was upon us and William was sick. We had to take him to the emergency room the day after Christmas for illness and alarming seizures. As always it was scary and stressful going to the ED but everything turned out alright. So needless to say it has taken me another week or so to get back to "normal". William is doing well but seems to be fighting off yet another cold.

So as for making New Years resolutions; I am determined to be stronger emotionally and physically. I have started a workout plan to build muscle and keep myself strong to lift William and hopefully getting into better shape will also help with emotional well being. Hopefully....

Cheers to a happy and healthy new year my fellow bloggers :-) Be strong.

A train ride to bring in the Holiday Season

2009-11-29T13:13:00.000-08:00

An attempt to get a family photo on Thanksgiving day.
My train loving family...
The twins and pose with their friend Charlie

Our family had quiet Thanksgiving with Grandma and Grandpa. I feel very thankful this year for my family and good health. William and Ella are doing well fighting off small colds with no major illness. William has picked up many colds but none have put him in the hospital like they did last winter. This may be due to having his adenoids removed; which we did last May.

This weekend we took the twins on their first train ride. Ella loves watching Thomas the train and had been asking to ride " a big one" for awhile. She was thrilled!! William stayed awake the entire hour and a half ride; listening very intently. Both Wayne and I were surprised at how much he enjoyed the ride. He was so excited that he was arching his back the entire time and was somewhat difficult to hold on our laps!! Not too long ago he would fall asleep whenever we went out on "adventures". I think for him to stay awake in public places and to be excited about what is going on around him is a major cognitive milestone!!

So the entire family enjoyed the train ride; it was a nice way to close the month of November and welcome the Holiday season. I am enjoying each Holiday with the twins; everything is so new and magical for them which makes everything seem that much more wonderful.......

Every Guy needs a good Recliner...

2009-11-25T07:45:00.000-08:00

Wayne having some cuddle time with Ella and William. Other than a few colds the twins have been healthy and happy this Fall. Hopefully this trend of good health will continue through the winter. To help keep William more upright while napping we bought a child sized recliner at BJ's wholesale club. With a few simple modifications, some rolled blankets and fleece blanket, the chair is a perfect fit! He loves it. William now has some excellent equipment for optimal positioning which is important in all aspects of his life. He plays in a special tomato chair, bears weight on his legs in a stander, and still eats in his Kimba chair. More pictures to come...... Happy Thanksgiving everyone!

Flowing

2009-11-18T12:07:00.000-08:00

After that last alarming blog post I should let everyone know that I am ok.....

Life continues to flow on and I am paddling away trying to keep up with the current. Somedays are much much easier than others. Today there is a brilliant blue sky and the sun is actually shining; I feel good and laugh easily. Thanks Jamie and Caitlin for the laughter :-) So hang in there fellow blog readers; life goes on and I intend to enjoy it.

Breaking

2009-11-14T21:37:00.000-08:00

Something happened today that hurt me beyond words. Nothing major, my family and I are safe and healthy, something seemingly insignificant yet I was cut to the core. I cried not just cried but sobbed; all out on the floor sobbing. In fact as I am typing this my hands are still shaking and my heart is palpitating. An odd glitch in my system these palpitations. I can't stop the tears or the shaking. I have not cried like this since last horrid Spring when two of my wonderful grandparents passed and my son came very close to being intubated. Yet the storm seems to pass and life presses on. I am calm now; calmed by words. When I lose faith in humanity it is always the words that are the soothing balm. I am grounded , the shaking has stopped; one foot in front of the other and soon I will be in bed.

The twins 3rd Halloween

2009-11-01T11:41:00.000-08:00

Tasty treats....
Roaring tigers....

Mommy with her wild ones......

Something Has Come Between Us

2009-10-30T10:49:00.000-07:00

Sometimes I imagine myself many years down the road as an old woman alone in a houseful of books. My daughter will be grown and having adventures of her own, my son may still be living with me but my husband will have left me. Once he realizes the true love of my life this will surely be the case.

I think he already has an inkling that something has come between us. Yes, I admit when the children and my husband are nestled in their beds fast asleep I am with "the other love of my life." Who can blame me. When the day is done and I have wholly and completely given myself to my children, my home, and my husband who wouldn't crave a little adventure. Perhaps a little action, romance, laughter, and even a little murder mystery......

Yes, I love my husband. Yet, when he says to me, " Erin, come to bed" I find myself looking to that book thrown on the couch that I have abandoned for way to long....... and besides I know he will be asleep in less than ten minutes. So in the end I choose my books. Actually, I just had an idea while writing this little blurb. So here it is; I pretend to go to sleep with Wayne and as soon as he falls asleep I sneak out of bed and go to my books!!!! Then after a few precious hours of reading I will return to bed because lets face it even scandalous ladies such as myself need sleep ;-) Aha, its the perfect plan. Maybe now I can picture myself as an old woman in a cozy home with marvelous wall to wall bookshelves, a gas fireplace warmly glowing, a glass of whiskey in hand AND a handsome hubby rubbing my tired feet ;-)

* No I don't drink whiskey; but surely by old age I will. Its family tradition ;-) *

Peek-a-boo I HEAR you

2009-10-27T20:46:00.001-07:00

William is listening very intently, he knows Ella is near...............
William hears Ella enter the room as she is roaring like a lion.....LOL
William coo's for Ella to come back; apparently he is enjoying the game! He is even trying to look in the right direction! This is something their mommy loves to see :-)

So Big!

2009-10-22T10:51:00.000-07:00

My baby boy is getting so big! Sometimes it is easy to miss how much progress he has made because he is always with his twin sister who is typically developing. Even as his mom I sometimes overlook all that he has done. Just last week someone dear to me said, " Erin, you are underestimating him." At first I was a little taken back and angry but soon realized that she was right. Although my love for him is strong I saw that my expectations for him were very low. I suppose it was a sort of self-defense mechanism that I unconsciously used. Although his progress is slow he IS moving forward when seizures are kept under decent control; which is always a struggle. Just last week William was almost rolling for his Physical therapist. She placed her hands on the muscles he needed to use and gave a little pressure to activate them. Then slowly very slowly he rolled without being directly manipulated!!!!! This is HUGE for William. It really opened my eyes to seeing what my son can do. Not only has he begun to use his muscles to reach and roll but also has been eating like a champ and using his vision more. This morning I noticed that he was holding his hand in front of his face longer than usual. At first it seemed like he was itching his nose, which he does often, but then he just held it there and watched it!! He was looking at his own hand. For a child with a cortical vision impairment this is also HUGE!! He is also starting to feel his diaper when I change him. Learning to use his hands to explore his environment has been a tremendous accomplishment.

I could write a few more paragraphs on how proud I am of my son! He is such an amazing boy that is getting big so fast. I hope others can see the seemingly small things he can do and realize just how huge those accomplishments are. Way to go William!!!

Playtime Positions for William

2009-09-22T08:05:00.000-07:00

Last month William finally began seeing the physical therapist that I have been wanting for over a year. He loves her and often greets her with a "coo" and smile. This is a rare treat considering that he used to scream for his physical therapy sessions. Since having this new PT William has been able to try several different types of standers, floor sitters, and more fabulous equipment. She is the equipment queen and often buys pieces on her own to loan out to her children. Today we tried a child rite floor sitter which is like a huge Bumbo with a higher back. William is able to sit independently and work on head control while playing. I included pictures of William in this chair with a table and of William in the Leckey stander which we have on loan. Also shown are pictures of William using a Rifton corner chair and playing with sparkly beads during light box time. We use the light box nightly to strengthen his vision.

So when you have a vision for your child it is worth fighting for. It has been a long journey and difficult at times to get the therapist I really wanted for William. I wish we had known about her when we first started EI but I am grateful that William gets a whole year with her.

With Heaping Spoonfuls of Love

2009-09-18T19:53:00.000-07:00

Life is unpredictable. Years ago when I was in college I worked in a residential home for adults who had developmental disabilities. I worked with a man that had cerebral palsy who was non-verbal. He loved listening to music especially, when he was angry, "Alive" by Pearl Jam at full blast. I will never forget him. The odd thing was that I remembered that same man from my childhood, our families went to the same church for a short time, and I can remember watching him rocking, constantly rocking back and forth in the church pew. I met his mother once, years later at the residential home. I was young and naive and made judgements about her that I regret. Later I learned that she had two adult children; the man I worked with and his brother who had been paralyzed from the neck down during a tragic accident, who she was caring for at home.

Now as a mother I still think of that family often. I know that I will be caring for William his entire life. He is making progress, small things that I am proud of, yet I am a realist. I try to take one day at a time but my mind occasionally wonders ahead. When I first was told the severity of William's brain scan and outlook I balked at the idea of having to care for him into adulthood. Wayne and I would say that our lives were over that we didn't think we could do it and then lapse into depressed silence. Two years have passed and part of me is still selfishly clinging to my old dreams but love has changed me. William has changed me and I am thankful just to have him with me.

The truth is this: I am selfish and yet I am not, I want more for William and for myself. I want William to live a full life with love, joy, new experiences, exploration, everything I have had and more. How will he do these things if he is not able to walk, talk, see, or even care for himself. How will I give him the care he needs without losing myself? Life is unpredictable and I don't have answers.

The truth is that I am in love with my son and this love carries and strengthens me. Love for my son changes my outlook and makes all things possible.

Balloon Gazing

2009-09-10T11:17:00.000-07:00

Last weekend Wayne and I took the babies to see some hot air balloons. It was neat to watch dozens of balloons inflate and lift into the air. They made a striking sight like so many sparkling jewels suspended in the sky. Beautiful bold colors in many different designs. Ella especially loved the barn balloon complete with a cow and pig. William gave no indication that he could see them. I had to remind myself that he does enjoy new experiences just not in the same ways I do. He seemed entertained listening to all the new sounds and voices around him. I stopped to listen and think, "what does William hear?". All the sounds that I may not have paid much attention to because I was relying so much on my vision. That is William's world. Yet I still mourned that he could not see such a beautiful sight.

Some Late Summer Moments

2009-09-09T19:43:00.000-07:00

Run, Run, Run

2009-08-22T20:37:00.000-07:00

Wayne and I took the twins on a little family adventure today to a local farm. We had a nice time showing Ella the animals and imitating their noises. The rooster was especially chatty. William slept most of the time in his adapted jogging stroller which made for a smooth ride over the fields and mud. The farm is run by a local agency that operates group homes for adults with disabilities so it was completely handicap accessible with nice ramps and some paved paths. This is where I need to stop and vent. While we were strolling along one of those smooth paths I couldn't help but to overhear a mother (because she was shouting) for her girls to "stop running and walk." "Walk, walk, walk," she shouted over and over again. It is really not that uncommon for adults to be telling children to walk yet it really struck a nerve today. I literally stopped pushing William's stroller and watched the woman's three beautiful daughters laughing and running as children should be. What was the worst that would happen if the girls fell? A scrapped knee? A bloody lip?

So there we were on a beautiful day enjoying time together and the pain strikes fresh and new once again. Will my son ever be able to walk let alone run? I can hope.

I began to push my stroller again and looked ahead on the path to where my daughter was running and laughing at the sheep. She looked so beautiful and carefree in the bright sunlight. I will not be the one to tell her to stop running.

"Run, Run, Run," I say, " If they can let them Run!!!!"

Tough Decisions

2009-08-11T18:11:00.000-07:00

In my community is the only state certified child care home for medically fragile children! All of William's terrific therapists go there to work with children. A few months back the Occupational therapist, whom I trust and respect, handed me a information folder and application. I told her I was not looking to have care outside the home and put the folder on my crowded bookshelf. I trusted her judgment that is was a wonderful place but was just not ready yet.

Recently a friend of mine called to tell me of her wonderful experience leaving her son there one day a week so she can work and spend time with her older daughter. She encouraged me to visit and I did not; I told her I was fine and I had the help of my mother.

This month my mom has been working everyday and I have been without help more often. My mom is terrific and she comes to help when I ask and schedule it with her in advance. So I began to think that it would be nice having more help and not having to relay solely on my mom. I called Daystar and scheduled a visit. It was not at all what I had imagined or expected. The house was on a cozy little street in a quite neighborhood. Inside the house was beautifully decorated and completely kid friendly. I was given a tour and met many friendly women who seemed very devoted to the children they serve. Many were certified nurses. It was truly a unique place that I want to be part of. Now the question is can I leave William there for one day a week without judging myself harshly? Usually the home has a waiting list but I was told that many children were graduating and I could pick any day of the week! I would love to have time to get errands done and time alone with Ella. It would be wonderful for Ella to have mommy time but I am not sure if I can leave William for an entire day in someone else's care besides my moms? Now I have some tough decisions to make!!!

A wonderful summer moment

2009-08-05T20:44:00.001-07:00

I have been trying to get William to enjoy the water and this little whale pool is just right for him. With his limited vision he likes to feel snug and secure so this tiny pool helps to cool him off without upsetting him. The only catch is that Ella also loves the whale pool and tries to climb in with him which makes for a pool crammed full of cute naked babies!!! Wayne snapped this picture during one of those perfect summer moments of sun and relaxation. Ella was trying to splash William and I and I was caught up in laughter! Laughter and sunshine.......those are two things I could use more of in my life.

celebrating two years!!!

2009-08-03T21:08:00.000-07:00

My Twins turn 2

2009-08-03T20:17:00.000-07:00

Today my twins turned two! We had a nice party for them yesterday with friends and family. The weather was beautiful and the children enjoyed playing in splash pools. We had the party at my mothers house which is more spacious than mine and is surrounded by absolutely beautiful gardens. My husband made all the food which was wonderful. Ella, William and their friends seemed to have a great time at the party. I feel that celebrating each year I have with my children is so important. Given William's diagnosis and that life is unpredictable I intend to make birthdays a big celebration each year. It really meant a lot to me that so many family members and friends celebrated with us this year!!

Poop in the Pool

2009-07-28T11:47:00.001-07:00

If you have read my last post and are wondering what I am doing during my "mommy alone time" today it does not involve mystery novels. My task on hand is cleaning poop out of our kid pool!! Yes, such fun and excitement!! This year we decided to buy a slightly larger kid pool so Ella could kick around and I could sit in it while holding William. The pool is so heavy when filled that I can't drag it across the lawn which leaves me in a "poopy" situation. I am letting the poop settle down in the bottom (no, it is not solid) and now I have to go bale the water out bucketful by bucketful so I can drag it to an appropriate place to dump.

I am reminded of that movie with Chevy Chase (Caddy shack??) where someone throws a candy bar into the pool and yells " Poop" or some other word..... At least I am laughing today!! I better go get to work and stop procrastinating!

My world

2009-07-27T20:32:00.000-07:00

William's speech therapy session actually ended on time today because he fell into a deep peaceful sleep. It may have been his way of saying, " all done everyone can leave now." It was that time of day that I feel sluggish so I made myself a cup of coffee and settled down with my computer. Imagine that! My twins were actually napping at the same time and the house was wonderfully quiet. Ahhhh, perfect....but what did I proceed to do with such cherished time? Research normal and abnormal brain development, look at CT and MRI images, and charts of brain anatomy. Followed by all of William's neurology reports which I have read at least a half dozen times already. One line from his report reads like this, " his (William's) MRI is impressive in lack of brain matter. He does however have a strip of cerebral cortex." Well yippity skippity, a strip of cerebral cortex!! I hate the use of the word impressive here. I made a mental note to once again have the Neurologist explain in further detail " impressive lack of brain tissue." Also to ask how much of the occipital lobe is smooth which probably is resulting in his cortical vision impairment. So painful to read!!

Reading these reports and viewing such brain images I feel that I am in a different world being a mother to a child with a severe neurological condition. A world that I did not choose to be in. I chose to be a mother which I love. I love William a tremendous amount. So much that I notice every new freckle on his smooth face. So much that I can feel my chest constrict with fear of loss; that I am crumbling while trying to gain control. Perhaps that is my motivation to re-read awful reports and research brain anatomy......to feel in control. Knowledge is power, right? Why then do I feel so afraid for his future that I can not yet know.

Tomorrow if I am lucky enough to have another quiet sacred and few hours I think I will settle down with my mystery novel and escape.......

Adirondack pictures

2009-07-24T20:08:00.000-07:00

Grandma chats with William in the first picture. In the second my sister Ame and I are getting ready to take Ella for a swim. She is not sure because she would rather swim with Daddy!! In the third picture my husband, wayne, and Ella check out Matt's guitar. In the fourth I am looking out over a beautiful view after a short hike and finally a picture of Ella swimming with Daddy.

more Adirondack pictures

2009-07-24T19:58:00.000-07:00

Pictures from our family vacation and my 30th birthday celebration.

Family Vacation

2009-07-24T19:23:00.000-07:00

Here we are again for our yearly vacation to the Adirondack park in upstate New York. My parents have made a tradition of renting a different cabin each year for family fun. This was our second year of the tradition. My parents, three sisters, their boyfriends, Wayne and I and twins all came this year! The "cabin" was ten times nicer than my own house with a beautiful view over a little man made lake and endless pine forests in the Southern region of the park. Last year we rented a climbing lodge called Rock and River located in the high peaks region. That was my parents first choice as they were and still are avid rock climbers. Although Wayne and I love the high peaks region it was nice to be by water this year. Ella loves to swim and William is even growing to like the water when warm enough.

So sounds wonderful, right? All was well in the Adirondack paradise? Wrong! Although it was wonderful and relaxing for a few days my family soon learned that we can't spend an entire week in one cabin together. As you can imagine four sisters can be caddy and for their significant others to get along is nothing short of a miracle. But perhaps this is just my twist on the event and I may be jaded. My emotional state has been stressed this summer and I have been more depressed than usual. I have been feeling apprehensive about leaving the twins and refused to leave them with Grandma for a few nights when Wayne wanted to go off hiking. I love being in nature and hiking just as much as my husband does so he could not understand my hesitation. Anyway, our marriage is now doing worse than ever and we ended up leaving the Adirondacks three days early.

Despite the tension I truly did have a nice time and the twins loved being with my family. Here are some pictures!!

More Garden pictures

2009-07-18T19:33:00.000-07:00

William in his swing!

2009-07-18T19:24:00.001-07:00

This Summer we were given a hand -me-down swing set which Wayne stained and repaired. The twins love it!! I am able to get more work done in the garden while they swing or play in the sandbox. William is also able to sit in the little tykes toddler swing some some adaptions. The swinging motion is great for his under-developed vestibular system.

Growing a Garden

2009-07-18T19:07:00.000-07:00

This summer my family began several gardens. Some flowers gardens and a vegetable garden. Keeping the rabbits out has been a challenge and conditioning the soil took several weekends. Overall though it has been well worth the effort. The snapdragons are beautiful this year and I love to watch Ella exploring all the growing plants. She loves to imitate me when I am pulling weeds and gingerly touching the new veggie growth. Today we tasted the bean and peppers although I think they need more time. Soon we should be eating a huge variety of vegetables and have enough to share with friends.

Not so sexy...

2009-07-10T21:30:00.000-07:00

Scene one: the "guilfoil' sisters are all in town and gathering for some beer and good times; with some men tagging along ;-p

Erin B: the babies are both napping and Wayne is arriving soon maybe I should actually try to look nice.

Ame: say's nothing as she is kissy face with Kevin.

Julie: say's nothing as she is filing her nails.....blah blah blah

Erin B exits stage left and goes upstairs in her parents home to change into "something more comfortable" not quite a la " Blazing saddles" but perhaps with appropriate cleavage, glitter and all that....

Scene two: Erin B is chasing around her daughter who has woken from her nap with extra spunk.....

Enter Erin P ( a friend of the family): wow great shirt Erin, just watch your boobs.

Erin B thinks....(why, are they going somewhere???)

Erin B says - oh my is it too low cut?

Erin P: Well it just looks like you have your boobs hanging out to breast feed!!!!!!!

Wow, Shot down....end of sexy mood and now I am really feeling old thanks Erin P!!

Pictures coming soon.....mwhahaha

Mommy attempts to return to bed. This is what happens....

2009-07-07T04:51:00.001-07:00

There is no hope for sleeping in. Ella who had been up most of the night is somehow refreshed and full of energy. I remain baffled. Ah to be a kid......

Ella wakes up William

2009-07-07T04:49:00.000-07:00

Visiting with Cousins; Quint and Russell

2009-07-04T11:49:00.001-07:00

2009-07-04T11:38:00.000-07:00

Some pictures from early summer.

Celebrating a twin bond

2009-07-03T13:38:00.000-07:00

I will never forget the day I discovered that I was carrying twins. It is one of those amazing once in a lifetime moments that I wish I recorded on DVD. Watching two tiny fetuses floating so close together in my womb was magical . Wayne and I had joked about having twins although twins do not occur in either of our families. Wayne and I were in shock. Utter disbelief soon turned to joy as we drove home equipped with ultrasound pictures eager to spread the news. We felt that we were on top of the world. Since that special time of discovery we have gone through a range of emotions; including grief over our son's rare brain malformation. I have enjoyed the experience of having twins despite serious lack of sleep and personal time. I celebrate the bond that my twins share despite William's disabilities. William is not able to play with Ella in a traditional sibling sense but they do have a very special "twin" bond. I love taking pictures like the one above capturing moments when they still snuggle and put their heads together as they were nestled in my womb two years ago. I hope that they will always feel an affection for each other and share a bond despite drastic differences in their physical and mental abilities.

It is all about attitude and my babies are full of it....

2009-07-03T13:30:00.000-07:00

Saying Goodbye

2009-06-18T20:40:00.000-07:00

Last Friday, June 12th, I went to visit my Grandmother who was in the hospital. She was having surgery for her hip after a fall and was not doing very well. She was receiving a Bi Pap procedure that forced oxygen into her lungs and had a large mask covering half of her face. The hip surgery was risky as her breathing was labored and her heart rate could possibly drop yet without surgery she would be in constant pain. I told her I loved her as the nurse removed the mask for a few brief seconds. All of my family walked behind her bed while she was being wheeled into the operating room like a parade that had seen better times. I think that image will be forever in my mind. That image is the last I have of my Grandma Garlock. Her hate rate dropped and her lungs filled with fluid after the surgery and by Saturday morning she had passed.

It still seems unreal that she is gone.

Cousins

2009-06-06T09:34:00.000-07:00

Remembering fun times with my cousin Christy and her boys this past winter. Christy and I were born three months apart and were close growing up. As a teen Christy lived in Coronado CA. Now she is in Iowa City where her husband is in medical school and she is raising two handsome boys Quint and Russell. Christy will be staying with her parents on Canandiagua lake for a few months this summer with the boys. I am excited to spend time with her lounging in the sun, chasing our toddlers, swimming, and maybe being rescued by her in the water. A little side story: Christy played and coached water polo in high school and college and is an excellent swimmer. Anyway, when she was six months pregnant with her first, Quint, she was staying with her parents by the lake and I would go to hang out and swim. At one point we decided to swim out into the lake and Christy nearly had to rescue me being six months pregnant and still a great swimmer and myself very out of shape!!!!! This is the strong and assertive cousin who pulled me by my hair off my bike as a toddler.

So Christy introduced me to blogging and can be found at lovingbeingcrazy.blogspot.com.

2009-05-31T07:33:00.000-07:00

Summer fun in the nude

2009-05-31T07:30:00.001-07:00

Passing on Another Great Book

2009-05-31T07:08:00.000-07:00

Last night I finished a terrific book called The Year My Son and I Were Born - A Story of Down Syndrome, Motherhood, and Self- Discovery by Kathryn Lynard Soper. Kathryn shares about the birth of her son Thomas and their journey through his first year of life. She writes with wit and honesty that I admire. I found comfort in knowing that another women shared some of my darkest fears and thoughts while parenting a child with special needs. She has courage to present the world with her most deep and sometimes seemingly ugly thoughts.

So although I tend to hoard books (Wayne has the wood to make me two more shelves....) I decided to pass this one on through Paperback swap.com. It seemed like a waste to let such a moving book sit on my shelf when another mom could read it. Sure enough as soon as I posted it on the website it was snatched up!!

Thank you Kathryn! Your story is being sent to yet another mom to cherish.

Adapting

2009-05-28T17:54:00.000-07:00

One day Grandma brought over a new present for the twins; a large red wagon that seats two! Ella was thrilled and wanted to go for rides the remainder of the afternoon. As usual I was torn between excitement and sadness. William would not be able to ride with his sister as he does not have great head control and can't sit on his own.

A few weeks later we received a new bath chair for William in the mail with a nice head support piece. It was a beautiful Spring day and aunt Julie was over visiting. We were all outside enjoying the sun and decided to bring out the new bath chair as a sort of lounge chair for Will. Julie and I soon discovered that the head support could also be attached to the back of the seat in the wagon! With the head support and a few home made side rolls William was finally able to ride in the new wagon with Ella. I was triumphant! I walked them up and down our street like a parade with a huge smile on my face. William seemed to enjoy the ride too and did a fantastic job holding up his head until we reached the end of our road then fell asleep! Triumph in the simple moments.

2009-04-25T19:31:00.000-07:00

Ella and William with Wayne at 19 months

2009-04-23T19:59:00.000-07:00

2009-04-23T19:55:00.000-07:00

2009-04-22T19:19:00.000-07:00

My sister Ame is in town from Colorado. Although the death of my Grandfather brought us together I am still enjoying her company. My Grandfather passed away in his home on Friday April 17th at 6:30 p.m. He was a wonderful Grandpa and I miss him so much! I am trying to journal my memories of him and our time together. His legacy: The woods/the farm, five children, twelve grandchildren, and four great- grandchildren are reminders of his love, hard work, and life well lived.