Today in what seemed like endless appointments, I sat in a Dr. office and while wrangling Mr. Tobey Jude and flat out asked about what is the outcome with a kid like Tobey. She looked right in the eye and said "residential care". And I cried. I cried because I know in my heart that could be that precious boys' future, I cried because I hate hearing negative things about my child, I cried because there are days with him that I don't know how I will take care of him when he is taller and stronger than me.
The Dr. then cried (in the same office that I have cried with Dr. Bardwell) because she has a 29 year old daughter at home and that is now her life. And she cried while telling me that she has to tell her friends that she can't go places because she has to be with her. And while some people talk about retiring with her spouses and travelling, she is home being a caregiver. And how her idea of retiring is so different from her peers. And she explained to me how Tobey could go either way...able to be taken care of at home or going in a "home". She has no crystal ball to let me know how he will turn out as an adult. But, if he keeps going down this path then we simply will not be able to care for him no matter how much we want too.
She told me that we are doing everything right with him, but that is no consolation when you feel like you have failed. I hear those stories about how God gave you this child because you are the "chosen parent", he thought you were "special" enough to handle a life with a child like Tobey. And part of me wants to believe that. But if that is true about God thinking Ed and I are up to the challenge, then why are we having to look into someone else caring for him when he is older?
I have referrals in for genetic therapy, special Dr's , have tried new drugs, prayed daily, given up sleep, drove to hundreds of therapies, fought teachers, given up time with 6 other kids, put a marriage on the back burner, lost friends....the list goes on and on. The first thing I think of when I wake is Tobey, he is my last thought before I sleep. When he goes to school he takes my heart with him, but I breathe because I need a break from the worry.
There are things that I know we have lost because of Autism, going to the movies or anything like that as a family, owning a home is a long way off because of medical debt, me working a full time job is not in the cards. But the thing that kills me the most that I have lost to Autism is Tobey Jude, and I know that is not what a special needs parent should say. I know that we are supposed to thank God for having them, and I do. I do thank God for Tobey. But I am not thankful for Autism today. I hate Autism today, because I want him normal. Dear God, I want him normal, and as a Christian I serve a God who is powerful enough to cure him but I live daily knowing that this is Tobey. He is who he is....there is no fixing this. There are times still that I think about what he would be like. At this age he would be telling me that girls are yucky and bugging me about how many Christmas presents he is getting.
I want to put it out there that I am not looking for pity, but I used to have this blog as a way to let people know what life is like with him, and lately it has been an update of the Holstein's. The updates are a lot easier to write, no tears are shed with those. But to show what a day in the life of the Holstein home really is I need to let you in and see it.
So, after the appointment I came home and got Eddie and had him drive Tobey back to school. We talked about what the future holds for the little dude, picked up 2 more kids for appointments, went to the IEP, Eddie went to work. I picked up the rest of the kids from their thousands of activities, fed them and did the Gangham dance. Medicated the crew and sent them to bed. And tonight I will head to bed and I will pray for him with his upcoming EKG....and then do it all again tomorrow. Because that is what you have to do as one of those "Special Parents", you suck it up, stop crying and get through another day.
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