For me, the diagnosis of Down syndrome that was given to Joey when I was only 13 weeks pregnant amplified my faith. There were definitely low points, but ultimately, it forced me to truly give in to what is God's will and God's plan and not my own. In my mind, I was excited and ready for a "healthy" baby. God had another plan. He was knitting Joey together
Psalm 139: 13-16
For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
My faith has been tested time and again, but honestly, having a son who has Down syndrome has made it stronger. When I first offered all my worries up to God was when I found out Joey's diagnosis. I had a conversation with God in which I told him that I had no idea what to do and that I was leaving it all up to his will. For awhile things got better. Joey's cystic hygroma went away. His hydrops started to go away. Then, just as I was getting comfortable, the testing of my faith began again. His heart defect was diagnosed. I was diagnosed with gestational diabetes. He was diagnosed with fetal ascites. We were told we were going to have to deliver at 28 weeks and so I went in and got the steroid shots to help his lungs mature.
Sometimes I was angry. Sometimes I am still angry. I don't ever think, "Why me, God?", but I do occasionally hit a low point and ask, "Why Joey?"
Each time I thought I had finally gotten a grasp on the situation and was settled into my faith, something happened to test it again. As I said in my post last week, it was during those deepest and darkest times that I truly felt cheek to cheek with God and the closest to him. Having a child who has Down syndrome continues to amplify my faith to places I did not know existed within my soul or within my being.
When Joey couldn't breastfeed, I got by on faith. When Joey had to get his helmet, I got by on faith. When Joey was in the hospital for croup, I got by on faith. When Joey had RSV, I got by on faith. When Joey was diagnosed with Nystagmus, I got by on faith. When Joey underwent his open heart surgery, I completely got by on faith.
To be honest, it is actually much easier to let go and let God. It is truly the path of least resistance and once I accept that none of this life is actually up to my control, my life is more meaningful and easier to live. The hard part is remembering to let go of the control and remembering to live on faith when one of those really challenging and difficult days or events happen.
If I had ever imagined an ideal child I would have never even known to have dreamt up such an incredible, loving, beautiful, strong and amazing son. I'm grateful to not always be in charge, but to instead live on faith.