Today has been a somewhat emotional day for me. I think it may be a lack of sleep. Lilly has been up at least three or four times at night and sometimes more. I have bags under my eyes, the house is a disaster and I feel like a zombie. Taking care of the kids has become so routine for me and I think I literally could do it in my sleep. The kids I watch are really good and have the routines down pat.
I read the article on KSL.com that they posted about the Up with Downs lawsuit and it really has me going. It’s such a mess, it’s frustrating for everyone involved, families are hurting, and then they smear it in the news. I have a lot of opinions about what is going on, none of which I will vent here, but I hold dear to the friends we made while our group Up with Downs was alive and well.
Maybe the article and some poems about special needs is what has me emotional and not to mention the already zombie-like state in which I live. I laid on the couch at naptime today with Alex to see if I could somehow get him to nap at a descent hour today and just stared at him. I know most moms probably do this from time to time but I stare trying to burn the image of such a special miracle in my life into my mind just in case he’s not there to hold one day. It is always the fear of a parent losing a child but with a special needs child seems like a ticking clock comes with them. Heart problems, respiratory problems, cancer just to name a few are very very common in children with Down syndrome. Most children born with Downs to live full lives but not always long, they usually tend to live only to age 30,40,50 if they are really healthy and have a bit of luck. My biggest fear is when that day possibly could come. I feel that way with my other children as well but they are healthy, they will live “normal lives” and get to experience their own marriage, children. In a way it feels sometimes so unfair that he may not get to do some of those things that in my life had made me the most happy and makes me who I am. He will live a fulfilling life and may get to have some but not all experiences that “normal” children do. BUT there is always the unknown. Often I hear of families in our Downs community to who for a normal Dr. visit and find problems arising. I have since having Alex known of three children, young children who have passed from our support group. There is a young boy now who has stage III cancer and is fighting for his life. I don’t have many fears in my life but the loss of a child or spouse to me would be unbearable.
I guess sometimes these kinds of days call us to reflection and bring us back to the center of what is important and gravitates us back to our Heavenly Father. We know of his promises and that gives us hope. We learn again what is important and refocuses us on our goals.
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