...For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Ps. 139
Happy Fall!
Summer is over and the big lovelies are all in school. Jonathan and I miss them a lot. Fortunately, Jonathan sleeps all afternoon and I still get to clean-up after the messes the school-aged lovelies leave behind. I DO miss them terribly though - I'm not good at change and going from four children to one is quite a change of pace.
Jonathan was a year-and-a-half on September 4th. Unbelievable. He is doing very well - he flies around the house with his push cart, unloads the pantry, scales the stairs, and... plays in the toilet. Ughhh. He plays with his toys - his favorites are a pig with plastic coins, a pull-car, a drum and his maracas. He eats everything and drinks from a cup with a straw. He is learning some sign language and a few words - I am pretty sure he said cracker and bye the other day. He waves hello and goodbye without coaxing - he is our most social child. He ALWAYS has a smile on his face...well, not at bedtime...he has figured out his curfew is wayyyyy earlier than everyone else. He is savvy that way - not much gets by him.
His emerging "skill" is wrestling - he gets up on his knees and lunges at Luke. Then they wrestle - boy style. I actually can't watch their matches without tears in my eyes. From the moment we told the kids I was pregnant they were certain Jonathan was a boy...especially Luke. Oh - he wanted a brother. I feel like this is what Luke has been waiting for all along - a brother to wrestle with...and love more than I ever dreamed.
I haven't written on my blog for quite a while because I feel like God has laid something on my heart that He wants me to write. Unfortunately, it is not an easy message.
When I was pregnant with all four kids I was offered extensive prenatal blood testing...to detect "problems." One of the most common tests offered was a screen for chromosomal abnormalities, specifically Down Syndrome. I never felt the testing would be of any value until my last pregnancy. At the very beginning of my pregnancy, I convinced myself that at age 40 the tests might provide some useful information. Well, the tests provided information. Inconclusive and anxiety-provoking information. At the 11th week of my pregnancy Craig and I knew that our baby had a 1/16 chance of being born with Down Syndrome. I declined the amniocentesis test, which would have given a definite answer, because of the risk that it would cause a miscarriage. So, we waited for 20 more weeks - praying more than we have EVER prayed in our lives and wondering...what if? Doctors, many of them, soberly looked at us and offered the option of abortion.
And that is the big task God has laid on my heart. I was offered an abortion. A chance to end Jonathan's life...a baby that I willingly created...because he might have a medical condition so bad that it warranted his death. As I write these words the absurdity of the advice/options I received and the information I DID NOT makes my chest tighten. The fact that I received this "counseling" in 2010, in a large American city is...devastating.
I think God wants me to write something that will comfort parents given the information I was given. I was not given any information about Down Syndrome. Ever. Never. I was just told soberly that Jonathan could have the condition. Of course, I googled Down Syndrome and found loads of "helpful" information. But, I'll be honest...it was a little scary. Okay, terrifying. I wish there would have been something from a parent or a family member or a doctor that told me...it was going to be alright.
That is my writing assignment. I am trying to write a letter to expectant parents that let them know it will be okay. That, first and foremost, that Down Syndrome does not warrant a death sentence. It is not the most critical or complicated medical condition a person can be born with. (Jonathan's leukemia diagnosis kind-of drove this home for me). Of course, you can detect it easily. And you can't "cure" it either prenatally or postnatally. But, personally, I'm not sure it needs a "cure." Jonathan has challenges that I don't have...he is struggling to find his words...I have never had that problem. He struggles to gain weight...again, not I. But, there is so much more to Jonathan's life and the joy that he brings to our family than his somewhat minor struggles. He is joyful, smart, energetic, fun, silly and adorable. He is like all our children, and all other children...he just has some extra challenges. All of which our manageable either by medications, therapies, schooling, or unconditional love.
I'm not sure this writing alone would have been enough to quiet my heart when I was pregnant with Jonathan. I'm still refining it. My goal: To collect a hundred stories just like mine and place them in doctor's offices and online for moms-to-be and dads-to-be as an alternative source of information. If you have a story, or know someone who does please let me know. I'm sure there is a mom or dad out there right this minute who needs to know that their baby will be okay; that they will feel joy; that Down Syndrome is not the end of the world.
Love, Jill
