Wednesday, November 12, 2014

Could I forget my kids have Fragile X? Probably not.

I read a blog post earlier about a mother of a son with Down Syndrome who had a cashier make an ignorant comment to her about prenatal testing.  The mama set her straight about how it woudn't have mattered whether she knew in advance (in her case, she did) about her son's diagnosis or not.  She just loves her son so much that she forgets he has Down Syndrome.  I can relate to the "wouldn't have mattered" part of her line of thinking--the other part, not so much.  It was a nice blog post.  Maybe my kids are more severely affected than her son is--I don't know.  It really doesn't matter.   But it made me question myself.

Eric and I have talked before and commented that people really have no clue what our lives are like day to day.  I have told people about some of the rituals and routines we go through daily, and they are most often befuddled by them. 

I was lying in bed this morning, and I heard Drew stirring.  I thought, "I can't do it today.  I just can't deal with his shower."  How many parents think that about their fourteen year old? He never wants to take a shower.  I get that some fourteen year olds don't like taking showers.  But for the most part, you can reason with an eighth grader. For him to get in the shower, I have to go through a crazy ritual where I say, "Come on, you are so stinky!You need a show-wer!" and have to sit on the toilet and say, "Oh dear!  Scoop's pooping!  Oh Scoop!  That's disgusting!"  (Scoop is a Bob the Builder character)  Then I have to stand outside the shower to help him wash all his parts.  All the while, he is grabbing my wrists and shoving me away, saying, "No showers!  I HATE showers!"

That is one small example of a thousand different rituals we do every day.  I know I need to teach him to shower on his own.  Both boys need to learn to be independent.  I should not still have to wipe butts.  But, sometimes the thought of the process of teaching them to take a shower independently, or wiping themselves is daunting.  I get overwhelmed with all the steps in the process then forget the whole thing!

When I was lying in bed waiting for Drew to get up, I thought, "Lord, I am weary.  Heavy laden comes to mind. I know your word says, 'Come to Me all you who are heavy laden, and I will give you rest.' I thank you that you always do this.  Help me to be a good mama to my boys and help me to be patient with them." 

Do I forget my children have Fragile X Syndrome?  No, not really.  It colors every part of our lives.  But, what is more important to me than the fact that they have Fragile X is that the God of the universe knew them before I did and loves them even more.  He has a plan for our lives and is working it out for His glory. 


Anonymous said...

You're amazing, Kristie. Those boys are so lucky to have a mommy as patient and energetic as you. They chose you for their mom because they knew that you would give them the most amazing life!! Xoxo