So this is the beginning of my blog journey. I don’t know how often I will write here…but I need to put it all down on virtual paper so to speak. So let me start with background:
There is V, my 15 year old who lives with her dad most of the time…and is normal.
There is E, who is 7….she has adhd, sensory, cognitive delays, and is a carrier for Duchenne’s Muscular Dystrophy.
Then there is D or the Man as I call him…he is 4…autistic, sensory, ocd, and we are going through the finally stages to confirm that he has Duchenne’s Muscular Dystrophy
Then ther is me…the mom…or H….and my girlfriend who I threw to the wolves really…poor girl she is S.
Then there is the Ex…I call him L, but that’s my little secret.
I am the one who researches, calls, pushes, and advocates my chidren since the day they were born. My two youngers, especially the man, were premature. They suffer delays not only from that but from L and my genetics combined. I feel guilty about this a lot…espeically with the man because several doctors told us we were risking our future children with problems and should really consider not having more until E’s test were complete. But I always wanted a large family, and with God on my side I felt he wouldn’t give me more than I can handle. To be honest, he hasn’t…I have handled each pitfall. I have smiled and held the man when he screamed at the top of his lungs right in my face because I wouldn’t turn his wii back on. It took three hours last night to get through the evening routine, some hand over hand, some waiting it out, some time out (that doesn’t work) and mostly crying and screaming and hiting. Then he crashed…he was out immediately.
It’s hard…very hard to stay patient and calm. It’s also hard to feel like you can than comfort and build any other relationship. Cause all you want to do is sit in a long bath and ignore the world for while. When you have a new relationship that needs nuturing…this lack of general support, comfort, or understand…this lack of any emotion at all because you are so exhausted from trying to stay calm and not show any emotion (because if you do he will read it and run with it)….it destroys relationships…marriages…friendships…families. Have you ever heard of the saying it’s not the disease but the symptoms the effects….well that’s what living in my house is like. It’s not his inability to compute, or his non-understanding of reason or time or space…or just his fears. It’s the way that I have shut off to help him get through it that is devasting to everyone around us.
We tried to go to galveston last week and I say the kids and I had a wonderful time…but I had to give..I had to avoid..I had to duck..I had to stay longer…or allow more things….why because sometimes I just need that hour..that weekend of happy him. Unfortunately, it has played a major toll on S and I…and I fear we won’t recover. She believes in structure and routine, in order and direction, in action and consequence, in appearance (because they might get made fun of) to protect them, in not doing something risk (because they might get hurt), and with the man….and the E together…welll this just doesn’t work. E learned a long time ago if she gets the man to do it (get that last cup of milk, get a bit of grapes after lights out, get him aggrivated over a game (then she won’t have to play with him), and the list goes on) that she will ultimately get what she wants. So she enjoys triggering him. She enjoys the attention it brings her…especially I think from S. Which I want…I want them to grow together, I want E to go to her for support in those moments. But man I can see E’s wheels turning.
So over the next few weeks…I have doctor appoints…therapy calls to make (maybe I will find a therapist who doesn’t give up) and a public school to request service from…
I need a breath and a pray….and a long bubble bath with white wine and candle light….