Suzy and I are back from NY. The trip went well and Suzy did great with her therapy. She is an easy traveler. The hardest part about going to NY is just managing all the subways. I would LOVE to complain to the city department - the entire subway system is VERY unforgiving to the handicapped. Aren't there some kind of laws that the Americans With Disabilities have established in such a large city like NY??? It is very hard to find an elevator!!! They are BLOCKS apart. And once you are underground, you are really screwed with finding any elevators at all.
Being in NY, and participating in Medek Therapy again really got me thinking. Actually, I spent most of the week thinking, analyzing, contemplating, and evaluating. (I'm exhausted from all of my mental activity.)We were there for a week of therapy, and I watched Suzy spend the first 2 days crying and trying to get into the 'groove', and watched her body try to remember all that it had accomplished over Thanksgiving (our last time there.) And then I watched as she made great progress the last couple of days, and make some wonderful gains. I realized that being there for just a week every now and then is NOT going to accomplish what I want this therapy to do. And this makes me so sad, and so confused.
What do I do? I mean, really - what do I do?? It feels like it is time to answer that question, and get a REAL plan. I am so torn.
I really believe that if Suzy was a daily patient of Jonathan's, in NY, we would make some amazing motor gains. .......The children at this clinic are all doing so well. They are walking when the doctors said they never would.
So now, I ask myself - at what cost? At what cost to my family life, and my pocketbook, and to Suzy's physical strength and her inner happiness, and at what cost to MY endurance? And should we move to NY? Do I up-root the girls just for Suzy?
What's fair? I'm trying to find the balance. I'm trying to balance Suzy's quality of life, her motor skills, the family's happiness, and our financial 'situation'. And I need to figure out how much we should spend, both financially, physically, and emotionally, to get her moving.
First, I must ask - how important is it to get Suzy walking? or crawling? or even sitting and reaching? I'm sure there are other parents with special needs kiddos who would disagree with me; but I have decided that it IS important, and that those things WILL IMPROVE her QUALITY of life. That is why I am pushing SO HARD right now.
However, the MORE important question is: "What if I give, and I push, and I completely EXHAUST myself, Suzy the family and our finances,.... and what if I do this for the next 2 years..... and then, what if after ALL of this we evaluate Suzy and find out that she made only a few small gains.??? Would it be worth it? There are just no promises in the world of brain recovery. THIS is what's been weighing the heaviest on my heart. THIS is the question that I have prayed about the most.
I love Suzy just the way she is. She is perfect. She is amazing,and strong, and full of life, and a true spiritual gift from God. Right now, she is happy!! and healthy!! And isn't that what we want the most for all of our children? And if I push the hell out of her the next year, and I ruin that for her, I would have a hard time forgiving myself.
So, this is my situation, my problem, my issue that keeps me awake at night. I must figure out what's the most important, and then find out how to balance it all.
Right now, I have decided to run 'wide open' until the summer, and then I will re-evaluate our life. I have decided that Suzy is worth it. And, I realized that I will always question "what if" I had done more in the early years?? So, I'm going to stock up on coffee, and attempt to give every ounce of extra time and attention I have to Gracie and Maggie.
And, I'm going to NY when I can spend 2 weeks there. I think Suzy needs the full 2 weeks to get the most out of the program.
Our THERAPY PLAN will be:
For the last 2 weeks of Feb. we will be in NY doing Medek.
Then, I'm home for 2 weeks.
Then, I return to NY for another 2 weeks in March.
Then, I return home for 1 week.
Then, We're off to North Carolina for 3 weeks to do HBOT therapy.
Then, home for 3 weeks.
Then, I return to NY for 2 weeks.
While at home, we will do our home Medek therapy program 2 times a day, continue with PT, OT, and ST, and aquatherapy. We have also started doing 'mouth exercises' to get her ready to start making some new sounds (so exciting!) And her speech therapist said she wants to try to get her to start doing some sign language (who would have ever thought???) She thinks Suzy is cognitive enough to understand sing language, but that her motor skills 'get in the way'. We are working on just 2 signs - "more" and "enough".
I pray that we will all be fine once we reach the other side of this marathon. I believe we will. I believe God will help carry us through. And if Suzy gets only a teeny, weeny, tiny bit better - I will snuggle her up, and be grateful for who she is, and kiss her all over, and tell her how VERY VERY proud I am of her.