A train ride to bring in the Holiday Season

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...

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

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

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

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

Mommy with her wild ones......

Something Has Come Between Us

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

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!

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

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

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

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

Run, Run, Run

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

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

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!!!

My Twins turn 2

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

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

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

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

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