In His Care: Our Story of Raising a Child with Down Syndrome
- 2003 12 Nov
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?
Opposition against home schooling her came in many forms. I was told by other Christians that it couldn't be done. I was discouraged from pursuing this from healthcare professionals involved in her therapies.
The biggest drag on my time and energy concerning Kaylee came with her therapy. She was receiving Speech, Occupational, and Physical therapies. The therapists came into our home, and we sometimes had 5 to 6 different sessions a week. I grew to hate the intrusion on our family and I grew to resent always being told what Kaylee could NOT do. I wanted to focus on her accomplishments, and on how to improve and build upon what she was already doing, instead of worrying when she would walk, or speak, or stack blocks, or use a scissor. The "intervention" process started when she was not even a month old. My phone began to ring from different agencies that had been alerted to a "special needs" child being born within the district. The public school called, social services called, public health, and I don't even remember who else. My first instinct was to latch on to these people to get my daughter the help she needed, but the Holy Spirit calmly said, "Just wait. Check these agencies out thoroughly before you jump in. Don't ever forget that YOU know what is best for your baby." Yet I had several different people tell me in no uncertain terms that THEY were the experts on children with Down syndrome and had so much to offer me! If I just signed her over to their programs I could get all the help I ever needed. I know these people meant well, but their ideas of "intervention" did not sit very well with me. After we researched our options and sincerely prayed, we decided to say no to what they had to offer. We received considerable pressure, and even received hints of a threat that if we did not get our baby the help they thought she needed, legal action could be taken. I stood firm, and thanked each person who offered the different services that were available, but I said we were home schooling and would be the ones in charge of our daughter's medical needs, therapies, and education. The best help I received was from Home School Legal Defense Association, and the Special Needs coordinator there guided me through what I needed to do. They were the only ones who told us the government interventions that were being offered to us were "optional". Although we had considerable pressure, the Lord enabled us to kindly but firmly say no to the programs they wanted our daughter enrolled in.
The sometimes daunting task of meeting our daughter's needs fell primarily on my shoulders, although my husband was a tremendous support and never wavered in his enthusiasm or thankfulness for Kaylee's presence in our lives. When I doubted myself, or questioned the Lord, my husband was a steady rock. When I needed to cry, he held me and comforted me. He prayed for us and encouraged me and loved our new little baby with his whole heart. The pride and love he has for his children is wonderful for me to behold. Rather than focusing on Kaylee's weaknesses, he pointed out her strengths. Kaylee has an undaunted enthusiasm for life. She embraces new things with a wholehearted appreciation, and freely gives her love and affection, usually to the people who need it the most. When she was tiny and I was having a difficult day, I would simply hold her, and God would impart a special strength that I literally felt. I sometimes wish I was just like her! She rarely is crabby, even when she is sick. She has bounced back from surgeries and illnesses, and has made more than one nurse cry after saying a tearful "Thank You" when she has a painful procedure done.
In my early research of how children with Down syndrome learn, I discovered that they will learn most everything that our other children will, but they just might need a little bit more time than other typical children do. For example, the average child may walk at 12 to 14 months, some walk much earlier, some walk later. Kaylee did not walk until she was 2 ½, because she had very low muscle tone and strength. But once she started walking, she quickly learned to run. Her strengths have been in the area of speech and cognitive abilities. When she was still a baby we began to use sign language with her to increase her comprehension and ability to communicate. Her first "sign" was "more", for more food! We taught her to sign "thank-you", "mama", "daddy", her colors, and now we are teaching her to sign the letters of the alphabet. Even though she can often speak the words we are teaching her, sign language helps her to grasp the meaning of words more quickly. It is more difficult to speak a word than it is to sign a word, which is why children will wave "bye-bye" long before they learn to say it. At the time we first started to teach Kaylee sign language she had a speech therapist who was one of the most wonderful people I had ever met. She truly loved her job, and she adored Kaylee. Our other children nicknamed her "Therapy Sarah" and she came sometimes three times a week. She was the most encouraging and sympathetic health professional I had encountered up to that point, and she considered the needs of the entire family as well as Kaylee's needs. Our whole family grew to love her, and when she moved away we both cried.
I learned from Therapy Sarah that I could spend just a few minutes with a health professional and tell whether or not they were going to work well with Kaylee. I have always disliked meeting new doctors and health professionals, and unfortunately I have had to meet many with Kaylee's different health concerns. I can tell by the way a doctor enters a room and sits down if he will work well with Kaylee. If he looks at her, and speaks to her, or better yet, touches her or holds her, I can sense an immediate chemistry between them. If he speeds into the room, and only addresses me, I know the doctor-patient relationship might not work out. I tell other mom's to trust their God-given instincts when choosing doctors for themselves and for their children. I pray before each doctor visit, that God would help the doctor to discern the problem or concern, and give him or her wisdom. God honors such prayers and I have only had a couple occasions where I have had to switch doctors.
One of the biggest obstacles I have faced with Kaylee has been my own doubts of my abilities. When our fourth child was born I had finally burned out of having therapies several times a week, and I told the therapists that I was going to find a way to get Kaylee the therapy she needed myself. This was a huge step for me to take, and it took me 4 ½ years to get to that point. Looking back it should have seemed more simple, but I truly feared that there might be repercussions from the same agencies that tried to push us in the very beginning after she was born, if we pulled her out of therapy. It has been an easier transition, and a bigger relief, than I ever thought it would be. Shortly after we stopped all outside therapy, Kaylee's speech made great improvements, and some of the very things that the Occupational Therapist had been "worried" about seemed to come naturally for Kaylee within a few months. We had been trying so hard to get her to catch a ball, and to throw properly, but to no avail. Now she does it without a problem. The therapist was also very concerned that Kaylee could not use scissors properly, or write certain things, but these things also are developing better all the time, and this is without us constantly working with her! She observes our other children and learns far more from them than from me! I have finally concluded that it is NOT the 45 minutes of therapy several times a week that is going to make a difference in Kaylee's development, it is what we do with her on a regular basis, every single day, that truly counts.
I remember that dark day in the hospital, when my grief threatened to overwhelm me and it seemed I would never be able to stop crying. Looking back now it seems as if it must have been someone else, like I was watching a movie. These days Kaylee brings more joy and sunshine and happiness into our home than sadness. The most important lessons God has taught me have often been through her. I remember telling my husband after it was confirmed that she had Down syndrome that we were not going to make exceptions for her, and that we were going to raise her as we have our other children, and that our prayers for her would be the same: "Please God, save our precious child. Help her to grow in wisdom and understanding. Help her to love and serve the Saviour and find God's perfect will for her life. In Jesus' name, Amen."
Through my grief at the beginning of our new life raising a child with Down syndrome I sensed God's presence and love more than I ever had before that time. I know He put this precious child into our home for a purpose. Interestingly enough, while I was pregnant with Kaylee I told a friend of mine that if God were ever going to give me a child with a disability, and I could pick what it was, I would pick Down syndrome. I had no idea that He already had done so. After she was born, I began to sign my name by writing, "In His Care, Beth" because I truly realized then that I really am, and always will be,
In His Care, Beth
Beth Grove and her husband Kyle have been happily married for (almost) 14 years. They have five children: Alicia, Mitchell, Kaylee, Jessica, and Justin, who arrived on May 6th (2003), in time to celebrate Mother's Day with his elated family.
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