"Thanks Mom", that's what I hear 37 times a day from my all too knowingly aware, almost six year old daughter Sumayyah. She has spastic quadriplegia, the most severe form of cerebral palsy. She is, however, totally verbal (although not entirely clear) and has excellent head and neck control and can eat normally....and a LOT at times. I'm told that these traits are more on the rare side for her type of CP, and so I am eternally grateful and don't take them for granted.
There was a time when she could barely speak and barely eat and we didn't know if she ever would, so I can say I am loosely acquainted with the emotions that go along with those challenges, but by the grace of God, around the age of 3 things started looking up in those areas. We struggled, we did our time in the GI clinic, hovering around the possibility of a feeding tube and in the augmentative communication meetings, discussing the software and systems that are available for non-verbal communicators. We thought that's where we would be, but, Mercifully, we came through it.
Her spacticity, on the other hand, is something else altogether. It's just bad. Minimally responsive to botox...yes I said the "B word", but that requires a post all on it's own so I won't go there except to say that just because we do it doesn't mean we are all for it. We've started, stopped and started again and recently after much "B word" ping pong, I'm about ready to stop it again. Measurements say that it helps and I can feel in her body the help that it does a litte, but is it worth it? Are there other options? I believe there are....I'll save the rest for later.
It's taking me forever and a day to get this post done. I am itching to start posting about our most recent adventure into the "so very different than what we are used to" world of ABM. This post is supposed to be an intro to us, but all that my brain can think about these days is ABM. Nope! I'm going to do this intro right, ABM later.....I'm just taking a few breaths, as if I have the capability of utilizing any effective calming techniques (I'm immune).
Sumayyah was born at 24 weeks and 5 days. She was big, they said, for her gestational age. She was 828grams, which actually isn't a bad size. I has chorionamnionitis so they say. I was having contractions for a week, back and forth to the doctor and different emergency rooms trying to get someone to do something but no one took me seriously.....even the contraction monitoring machine didn't believe me. They hooked me up and it said NO contractions, even though I was in so much pain I had to sit down as I walked through the hospital on my way home again. They suspected a bad bladder infection and loaded me up on antibiotics and eventually she was born in an ambulance, with paramedics who also didn't really believe me. I couldn't look at her in the ambulance, I was terrified about how she would look. I saw her about 2 hours later after they told us she had a 60% chance of brain damage. They didn't think she would live. Born with bacterial meningitis and pneumonia....when I saw her for the first time she was lying open on a table and they let me touch her without washing my hands (which as all of us NICU parents know is not a hopeful sign). I'm sure they thought it may be the only time I touched her alive. They took her to the nearest children's hospital and I joined her the next day.
I could write volumes on the NICU experience. Other babies that didn't make it, her purple, translucent skin, heart surgery, osteopenia, broken femur and ribs....holding your breath every week or so when a new infection was suspected and antibiotics strong enough for a horse were started yet again. Five months of NICU life is like nothing else. Thank God for the bonds formed in the breast pumping room. I actually came to dislike the private breast pumping rooms at other hospitals because I think we all needed each other and it was one of the high points of the day....imagine that.
Coming home was something strange. We had never heard the words cerebral palsy and I can understand why they may not tell you some things while you are in the midst of all that. At 9 months old, (5 months corrected), the doctor told us as if we should already have known....I didn't have a clue what it was! It didn't phase us too much, we just lived our life as it came and learned along the way. We were told she wouldn't talk or walk....probably not roll over or sit up. We also found out that she had significant hearing loss in both ears and was "blind" in one eye.
Now she is almost 6...in May....and she doesn't walk or sit up or have use of her arms/hands, but she talks quite well and that is HUGE and we are so grateful. She was very delayed in speech because of her hearing loss and breath support/CP issues, but every year she has improved.
And so, in a very tiny nutshell, that is us. I hate it when I let the CP be our identity.....we are so much more, but for the purpose of this post.....in this blog about our lives with CP.....you will get to know the real us as the CP is just one trait. I say us a lot. I feel like she and I come as a duo; sort of a package deal. When you have a child with special needs, I think you become so ingrained in each other. Ok, that could be a bad thing sometimes, but for us it's about closeness and a special bond. We are hand in hand on this journey (sometimes I think she is the stronger one!!!) and this is us.
