The enormity of having a child with Down syndrome hits me at the oddest times. Just now, as I was changing his diaper, it hit me that I have a child with special needs. Probably because he doesn't actually have any special needs at this time, with the exception of thickened liquids, I have trouble wrapping my brain around that. (The recent surgery for the vascular ring was completely unrelated to Down syndrome - just one of life's quirks.)
But, when I think of what's to come, I am overwhelmed. I alternate between a fascination with articles and antecdotes about adults with Ds, and a complete denial that my child will be anything like them. At this point in the journey, I am simply overwhelmed by having six children, four of whom are under the age of six. But, I know what's coming. He's a wonderful baby and I am looking forward to his toddler charm, but with that will come more therapies and an ever closer determination of whether he'll be the elusive "high-functioning" or the dreaded "low-functioning" person with Ds.
There, I said it. While Simeon has equal value regardless of high or low, I want him to be high functioning for his sake, as well as ours. Why? Because life would be easier. No matter how much the Lord shows me about the value of suffering, I'm still human enough to want, hope for, even long for easy. Right now, everything just seems hard. It's hard to even complete a load of laundry without some sort of emergency around here and organizing the clan to even exit the house leaves me irritated and exhausted. I want to hope that someday, life won't be so blasted difficult. With Down syndrome in the picture, I'm not sure I can.
Big hugs to you!! I'm sure you are such a good mom to your kids but I know you must feel overwhelmed. I don't know how you do it but I admire you for it! I don't think there is anything wrong with hoping he is high functioning and wanting life to be a little bit easier. I guess it just comes down to how you handle the stress of it all. I think it will get easier with time and I bet God will show you in the neatest way why all of this was worth it!
ReplyDeleteHi Tara--
ReplyDeleteThis post really hit home with me. I only have 4 (yeah only 4) children and it is difficult sometimes. I too dread the extra commitment and have fears that maybe I won't live up to all of my expectations that I have set for myself and maybe I won't be a good enough mommie to my little Yusef. Sometimes I feel like I can barely get through the day with the responsibilities that I have. We really do want to have another child but have put that on hold, possibly for good. I know you must really feel like you have your hands full and are overwhelmed.
At one point I was really obsessing about the high versus low functioning thing but I've pretty much gotten to the point that I've accepted that is out of my hands and my job now is to help him live up to his potential and love him and raise him well.
I'm sorry that I can't offer you any wonderful advice or anything, but just know you're not alone with these feelings. Much love to you, my friend.
I only have one child so far. I have no advice to offer except echoing what Adrienne said: God will show you in time how and why all you're going through right now is worth it. Hang in there!
ReplyDeleteBy the way, you have an award on my blog Bill and Ria: Blog Awards