I was sixteen weeks pregnant with our second child sitting outside Panera sipping my tomato basil soup when an elementary aged boy walked by smiling and holding his mother’s hand. The boy had Down syndrome. As they walked past a question entered my mind I had never thought in my life, “What if my child has Down syndrome?”
It was such a random and fleeting thought because I was not fearful of anything being wrong with our child and I didn’t personally know anyone with Down syndrome. It was so fleeting that I did not think about it again until we were at our 19 week ultrasound and the nurse looked solemn and quiet throughout the procedure.
As we sat waiting the question came back again, “What if our child has Down syndrome?”
This time the question was more founded. Over the next few hours we would hear words like hydrocephaly, soft signs, level two ultra sound, termination, neonatal cardiologist, amniocentesis, genetic counseling and trisomy 13, 18, and 21, commonly known as Down syndrome. It was a whirlwind of emotion and information. We ended by making the decision to monitor the hydrocephaly, get blood work done and declined the amnio.
After those tests came back the doctors gave us an estimated 30% chance of having a son with Down syndrome. Over the next few months the fleeting question I had over a cup of soup would become a persistent and real question we had to ask ourselves, “What if my child has Down syndrome?”
The fears and unknowns drew us to our knees which was our first indication of what it would mean to have a child with Down syndrome. Having a child with special needs would mean more dependence on Christ. We prayed for God’s will and for God to use our boy for his glory. We named him Samuel, meaning “God has heard”, because we believed that just as God answered Hannah’s prayers for her child, so he would answer our prayers for ours.
At 36 weeks pregnant I went to bed with an upset stomach and woke up in labor. A few short hours later our tiny boy with little slanted blue eyes and a cute bent left ear was laying in my arms. When the nurses and doctors had left the room after his whirlwind birth and we were alone Dave looked at me and asked, “Do you think he has Down syndrome?” I replied, “Yes, do you?” He said, “I do too.” And like that we were the parents of a son with Down syndrome.
The question was no longer what if but what now? What do we do now that our child has Down syndrome?
Seven months before Sam was born just days after discovering we were pregnant we got the news that my brother David had died while serving with the Marines in Iraq. This tragedy had prepared us in many ways for Sam’s diagnosis. Walking through such deep grief and finding the goodness of the Lord and his mercy embedded and hidden in the saddest of moments gave us confidence the same would occur through Sam’s diagnosis. This diagnosis would be used for God’s glory and our good because we had just seen him display His glory and goodness so clearly in the loss of my brother.
While many families experience an intense grieving stage after receiving a difficult diagnosis like this, we, for the most part, did not. I think this was largely because of the particular way that God had prepared our hearts. We were privy to see that God does some of his most beautiful work in our greatest pain, losses and messes. This does not mean we never grieved our son having special needs. There have certainly been moments where we have seen particular effects of Down syndrome on him or us and experienced genuine grief. But never in such an intense way that we could see no light.
Light is exactly what Sam has brought to our family. Sam has been used by God to shine truth into so many areas of our life. Sam has been a light through his friendly, outgoing personality. He loves people well and is always cheering others on. He has shown us light though his hard work and perseverance to overcome hardships. Things don’t always come easy for Sam and he has to work harder for basic things we take for granted. He not only works hard but does it with great joy.
He has also been a light allowing us to see a whole new part of God’s creation by introducing us to the beautiful special needs community.
As we have faced hospital stays and scary tests and Individual Education Plan meetings at school. God has drawn so near every time. Sam has been a light that has helped us be more dependent on Jesus.
He has been a light that has shown us a new and better way. A way that is not living for what is easiest but what is best. A way that fights our basic sin struggle of selfishness and gives when we feel we have nothing left to give.
Our son’s condition led us down a path of growth and change we never would have experienced without him. Raising any child goes head to head with your selfishness but raising a special needs child can take the battle to a whole new level because they are generally more needy. None of my children have challenged my selfishness as much as Sam. But is my selfishness really something I want to hold on to? Every time I am able to give him the extra support he needs with a thankful heart, God makes me more like the woman he intended me to be.
The aspects of raising Sam which are harder than my other kids strike at the root of all my sinful desires to love myself more than God and other people. Sam’s condition gives me the opportunity to challenge my sin nature throughout the day. Many times I do not fight it and I pout, get angry or feel sorry for myself. But many times, by God’s grace I choose love, patience and joy and when this happens Down syndrome is blessing me in a way I could never repay. Down syndrome has given me an opportunity to grow in likeness to Jesus.
While we were joyfully discovering the blessing that Sam was to our family we were sadly learning of the thousands of children with Down syndrome who had no family to bless. Years before I had asked myself, “What if my child has Down syndrome?” now I was asking, “What if another child with Down syndrome was supposed to be mine?”
We had received so much light through Sam we discovered the answer – one was and his name is Ben.
We chose Ben in part because he needed us but also as we had begun to learn through Sam we needed him.
Because here’s the thing, hard equals hard but it doesn’t equal bad. Raising a child with special needs is hard and I would lying if I said otherwise. Our lives are not sunshine and rainbows all the time. The day to day can be exhausting, but our lives are full of light. The light has far outweighed the hard parts.
The part of us that is challenged through the difficulties is not a part of us we are proud of or want to keep. This is why we spent last year fundraising, chasing papers and crossing the globe to bring Ben home.
Ben has been a light just like his brother – an avenue of light in a dark world and into the darkness of my own heart and I am so thankful he is shining bright.
Our world and my heart need that kind of light.
Rachel is a creative, laid back extrovert who loves to gather people toward Jesus and the things He loves. On her blog/instablog she writes about the messy mama she is and the good God who is making something beautiful of her life. She calls Matthews, NC home where she lives with her pastor husband and their six beautiful children.