Down Syndrome Day was today. I am not sure how to celebrate our first DS day. I am not sure I want to celebrate the thing that has caused so much grief and trouble in the last year.
I hate Down Syndrome.
It has stolen Noah’s health, my time, and dreams.
BUT
I love my son.
He is the fiercest hugger in the family (sometimes they hurt). He grabs fistfuls of my face, and shouts MA-MA-Bob!! He happily hangs out wherever I put him with little protest. He is the best sleepy cuddler, laying absolutely limp on my chest listening to the thrum of my heartbeat, eyes wide open, his tickly hair perfect for kiss planting. I love my squishy baby!
I do not, however, love the part of my son that requires oxygen to sleep, or the part of him that necessitates monthly blood work, just to see if he has leukemia, and the part of him that will cause him to always be striving to catch up to his brothers. Heartache.
If I could separate Down Syndrome and Noah, I would, however there is no chromosome separator.
So this year I am not celebrating Down Syndrome Day. Instead I am taking a break from Down Syndrome. I will take a break from reading books about development, pouring over his labs and searching for solutions, and spending my time looking for the next thing I need to do to help him.
Today, I celebrate Noah.
1 For everything there is a season, and a time for every matter under heaven:
2 a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
3 a time to kill, and a time to heal;
a time to break down, and a time to build up;
4 a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
5 a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
6 a time to seek, and a time to lose;
a time to keep, and a time to cast away;
7 a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
8 a time to love, and a time to hate;
a time for war, and a time for peace.
9 What gain has the worker from his toil? 10 I have seen the business that God has given to the children of man to be busy with. 11 He has made everything beautiful in its time. Also, he has put eternity into man’s heart, yet so that he cannot find out what God has done from the beginning to the end. 12 I perceived that there is nothing better for them than to be joyful and to do good as long as they live;
Ecclesiastes 3
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