Until We have our boats.....

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

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

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...

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

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.....