The Down Syndrome Express-- Intro

My friend, Erica, invited me to write something about my life as a mother of five, for her blog at the Baby Boutique. She asked for something that other moms might relate to, or might identify with.

We have five children. We had four for quite awhile, nearly six years, before our little buddy was on the way. I was so nervous about being pregnant at my advanced age of 43. I wasn’t worried about anything in particular, just the whole idea of giving birth again, even though I had had four wonderful births with the older children. I think my biggest fear was that I would have an even bigger baby this time. Our daughter, our fourth child, was 11 pounds, 7 ounces. I couldn’t imagine giving birth to a bigger baby than 11 ½ pounds!

My due date was January 9. I was hoping for December 31 since that is my husband’s birthday and I thought that would be fun, to have two birthdays on the same day. I also secretly felt that if the baby was born before the beginning of the new year, everything was going to be all right with him and the birth.

During my pregnancy, my baby had had the hiccups every single day and the baby’s movements had been so much more noticeable than in earlier pregnancies. I noticed the difference but did not worry that they meant any particular thing.

I wanted a water birth with this baby because my two sisters had had their babies this way when I was about six months through this pregnancy. Their stories were so wonderful that I decided to pursue this option for birth. The local hospitals offered laboring tubs but explicitly stated that giving birth in the water was prohibited. My doctor was of the “ask forgiveness, not permission” mentality, but I knew I would be very uncomfortable if there were nurses tapping their croc-shod toes at me. Eventually, I decided I wasn’t going to give birth in the hospital and met my lay midwife less than one month before I was to give birth.

My husband and I felt an immediate connection with our midwife and moved forward confidently with this plan.

On New Years Eve, clearly the baby was not going to be arriving before the end of the year. We spent our evening with our little family, looking back at the year previous and looking ahead to what was coming in the new year. We watched a DVD by John Eldredge which taught that Jesus is the hero of the story and we are part of his story. Midnight came and went and I tried to tell myself that my little superstition had nothing to do with reality.

One week early, January 2, I spent six hours laboring and giving birth to our little guy, our smallest baby by far at 8 lb 12 oz. I have thanked God many times for the wonderful labor and birth I enjoyed. Thanked him for the fact that our children got to meet the baby and hold him minutes after he was born. It all came together eventually as an amazing example of the grace and providence of God, but . . . pretty much as soon as I had the chance to hold the baby, I could see that he looked like he had Down syndrome. At that point, I knew nothing about Down syndrome, and was pretty sure that I would not be a good mother to a child with special needs. I knew nothing, and I didn’t see myself as particularly compassionate or filled with whatever genes all “those” other mothers had who mothered special children so well.

We spent the first night at home, but needed to visit the pediatrician the next day due to the fact that the baby’s color was indicative of not enough oxygen in his blood. Directly from the pediatrician’s office, we traveled by ambulance to the hospital where we spent the next seven days in the NICU. It was during this time that the diagnosis of Down syndrome was confirmed through a chromosomal test.

What a hard time that was, as we were separated from our other children, dealing with recovering from childbirth, dealing with our own emotions, and learning everything we could about Down syndrome. But who could ask for better doctors or nurses? Who could imagine the level of care we received from the hospital? Who could ask for more than my mother, sisters, and brother-in-law gave to help out with the kids? How could we have imagined what kindness would be poured out to us from friends from church, and friends and acquaintances from the previous summer’s swim team? In short, truly it was Amazing Grace.

I have an indelible memory of gazing at my brand new baby as he lay in my arms and knowing almost instinctively that he had been born with Down syndrome even though I had no conscious understanding of how I knew this to be true.

But the overarching memory of that time was that Amazing Grace. The music that was playing when the baby was born was the CD Dwell. The words stick with me:

Dwell in the midst of us

Come and dwell in this place

Dwell in the midst of us

Come and have your way.

Dwell in the midst of us

Wipe all the tears from our faces

Dwell in the midst of us

You can have your way.

Not our will, but yours be done

Come and change us

Not our will, but yours be done,

Come sustain us.

And he has changed us. And he always sustains us. And our little boy is an incredible blessing that we could not have imagined. There are still days when my mind does the math and remembers how old we will be when our little guy is a grown man, but we believe that God will be with us and with him every day of his life. Oh, and if you ask my son, I’m pretty sure he’d categorize me as quite a good mom to him. Amazing Grace.