In His Care: Our Story of Raising a Child with Down Syndrome
- Wednesday, October 01, 2003
I was hearing my doctor's voice, but it seemed as if he were talking to me through a tube, and the reality of what he was telling me was too much to comprehend. His voice then became clearer as I heard him say "…and all these symptoms suggest that your baby has Down syndrome." He went on to say more but the words "Down syndrome" bounced around in my mind like one of those Super Balls I played with as a child. How could this be happening? Our third born child, a beautiful baby girl that we had named "Kaylee", was not the perfect baby I had expected. Sure, I knew there were no guarantees that she would be born perfect and healthy, like our first two babies. Then my mind rewound to a few months earlier, when I was standing in the hallway of our home with my husband, and I whispered to him that I thought "something was wrong with this baby." His response was very matter-of-fact, that we would "cross that bridge when we came to it." My mind came back to the present as the hospital room suddenly became quiet. I looked up through my tears into my doctor's eyes and said, "I know it. I knew when I was pregnant that something was wrong, but I never said anything to you. And I knew right after she was born that she had Down syndrome, because I had an Aunt who had Down syndrome, and she looked just like my baby."
We talked for a little while longer, and then my doctor left the room as he told me he was sorry. I knew it must have been hard for him to bring me this news, so I thanked him as he walked away. I looked at my baby sleeping next to me on my bed, and for one horrific, awful moment I felt an overwhelming rejection, and I could not touch her. I wanted to run and hide. But then a fierce protectiveness overcame me, and I picked her up and began to sob as I never had before in my life, and I knew at that moment that I never wanted to let her go.
This was the beginning of a major life change for our family. Gone were the carefree days of child rearing, where our biggest concerns were colds, fevers, and the occasional accident requiring a few stitches. Now my focus consisted of learning all I could about Down syndrome and how that was going to affect our child's life.
Right away it became evident to me that this baby needed constant intervention. The first night we had her home from the hospital she slept eight hours. I woke up in a panic, thinking she had died in her sleep, and grabbed her out of her bed. Kaylee was not born with a "hunger" instinct, or a "rooting reflex". I had to waken her every two hours, by taking a cold, wet washcloth, and getting her alert enough to nurse. She would nurse for a couple minutes, and fall asleep, and then I started the process over. Her weight gain was painfully slow. We discovered when she was a month old that she had a hole in her heart. It was called an "Atrial-Septal Defect" and was large enough to require surgery. She was a year old, and only twelve pounds, when she had the hole repaired. I knew during that year that if I had left her to herself, she easily could have starved to death. Later on, after her heart was healed and she was gaining her health, her cardiologist told me that my determination to breastfeed her kept her healthy, and maybe even saved her life. Babies with Down syndrome, and heart defects, are very prone to infection, but she was very healthy and rarely got sick. I credit God's design for breastfeeding babies, and the many nutritional benefits, with keeping her so healthy. We had to watch each ounce she gained, and a nurse visited every week to weigh her and listen to her heart for any changes. During that year I read everything I could get my hands on about Down syndrome. I knew the biggest obstacle I faced would be ignorance. My own ignorance would inhibit me from doing all I could for my baby, and the ignorance of other people would discourage me.
The hardest thing for us at first was hearing everyone say, "I'm sorry" when we told them about Kaylee. We did not want sympathy. We wanted to celebrate the birth of our beautiful baby girl (and she was truly beautiful) and we wanted to be asked all the standard questions like, "How much did she weigh, and how long was she?", "How was your labor?", "What is her name?" We wanted everyone to comment on the color of her eyes, and her pretty hair. Instead we talked about Down syndrome. I fought the pit of depression that threatened to swallow me up. I tried to focus on the positive, and to enjoy this precious new life God had given us. I didn't realize it then, but we began home schooling her from the moment she was born. (In retrospect, all home schooling begins at birth, I just didn't realize it then.) Interestingly enough, our church had a Christian School at the time, and I was told by one well-meaning friend that Kaylee would never be able to attend. This irked me quite a bit! I was NOT going to be putting my precious child into a public school, even if she did have huge challenges before her. At that time we hadn't decided whether or not to home school our oldest children, or send them to the Christian School. This was decided later, after much prayer and research. When we finally determined it was God's will for us to homeschool our children, another lady gave me an article written by parents who were home schooling, and they had a son with Down syndrome. I was fascinated, and from then on was determined in my course of action. I could home school! We could take charge of our daughter's education just like we planned with our other children! After all, who knew our daughter and her needs better than we did?
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