Saturday, July 20, 2013
We are now 2 years into the life of a Liss family... It's hard to describe the daily torture that comes with it. Folks have tried to console us and tell us that we just have to adjust to our "new normal"... but how can torture ever feel normal? From what I can gage, some Liss kids have it worse than Edmond and some have it better.... My son Edmond, does absolutely nothing all day but lay there and stare in space, have a few seizures a day and then passes out for long spans of time. We have every service and therapy in place. We interact with him but with pretty much zero reaction from him. There are such minimal improvements or signs of progress. What kind of life is this for Edmond to live? I feel so sad today for him, I feel so tortured when he is unable to do anything, and so tortured when he has a seizure... today one single tear shed from his eye after his seizure. I cried. I know I am focusing on the bad today... If I were focusing on the good, I'd say, he has some good skills in swallowing if we put the food in his mouth for him, pureed only though. I'd say that I'm glad I was able to meet my little Edmond and didn't lose him in the womb without any answers as to why he didn't make it, it's probably amazing that our kids make it into the world missing their chromosomes. If I were focusing on the good, I'd say that he has the most kissable cheeks and face imaginable and he's the cuddliest boy in the world. This "pros and cons" speech about Edmond is pretty much a daily conversation I have with myself... not sure if that's even normal for a special needs parent, not sure if it will get better in time? How would I ever get better if my son doesn't? Will I really be able to cope with it better as time goes on? Will I be able to be strong if we have to say goodbye to him? It's unfathomable to think of not having him with us. I once dreamed of having a family of all sons... just wanted boys for some reason... Now I have a 3 year old daughter (who is my little amazing girl) and Edmond, and another daughter on the way... and I will love my girls, but I just want to burst into tears every time someone announces they are having a boy. I look at Edmond and I"m so heartbroken every minute for him, for me, for my husband, for his sisters, for this shadow of Lissencephaly that covers and reaches into every part of our lives and that somehow even taints every moment of joy that we happen upon. I dread the questions my girls will ask me as they grow up and wonder why Edmond can't do what other children do. I know I will answer them, and then probably fall apart later that evening over it. It's overwhelming to think of what we have to face daily, monthly, yearly, and still function as a responsible parent or spouse to our other family members, still work and interact with all the other stressors that come with life in general... I feel myself aging rapidly from this experience and there is no light that I can see at the end of any tunnel I can imagine.