How to balance the Sophie with the Max


It’s Sophie’s 17th Birthday – she is 17 years old today!  I have no idea how that is even possible. She is quite possibly only 9 or 10…11 on a big day. She is downstairs having a get together with about 15 friends who are some of the coolest kids in town and I am in awe of her. She is everything that I hoped she would be at 17 and the good fortune and pride I feel makes me cry. She has it all together – she knows who she is, she knows who and what she likes and doesn’t like, she understands herself and what she needs to be happy and healthy in body and mind.  She is a good and loyal friend and I have never seen an ounce of phoniness in anything she does. Sophie is brave, strong, determined and resilient and on her way to being ready for college and beyond. She is going to get her driver’s license tomorrow and we are purchasing a nice old used car from a neighbor and she will get in the driver’s seat and I she will be OFF!  I will miss everything about her as the next year brings us one step closer to sending her away.

On the other hand, I have never been so worried in my life. Things with Max are going so slowly – the therapy is not enough, he isn’t being pushed and he is never going to get out of the hospital. We have been asking for more and more intense therapy for several days and then it was the  holiday so of course the schedule was lessened, but now we received the schedule for tomorrow and it is less therapy than before.  I am sharpening my teeth right now.  Hun and I have identified our chosen source of the problem. There is a program at the hospital called the “Pain Management Program.”  It is intended to be an intensive therapeutic program for kids who have pain of some sort.  While I am sure there are many kids who do have intense pain that needs management, there are about 10 kids here in the program and they are all FINE!  One has some hip pain when she dances, one has knee pain when he runs, one has headaches, and the other ones I have no idea – maybe they have colds.  They run around during therapy and play soccer and kick balls and get intense therapy in the pool for an hour a day. Max is getting half of what they get and it isn’t right.  We are in a small program and it is nationally renowned for the therapy it provides.  There is no where else we would go.  All the kids have to share the therapy time so with these other kids here, there is obviously less time to go around.  If I weren’t so desperate and crazed for Max to progress, I would understand, but I don’t have any more understanding in me.  It has been 24 of the longest days of our lives and as of this moment, I feel like the surgery does not seem to have been the right thing to do. It could potentially have been the worst decision ever made and the only thing that will prove otherwise is more and more intense therapy. Hun and I are gearing up for a fight tomorrow morning with someone, about something, and we are going to get more therapy somehow.  How is that for a plan?


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