I love having a son with Down syndrome! It is for one simple reason; he is my son, Tommy. Tommy is almost three years old and has been a joy to us from the day he was born. We had no idea Tommy had Down syndrome before he was born. My husband, Kyle, and I were 24 years old, and we had several ultrasounds with no signs that there was anything wrong. When Tommy was born we were shocked when the doctor came in and told us that he suspected our son had Down syndrome.
There are many struggles that come with being a mom in general, but being the mom of a child with special needs can lead to some extra hurdles. Our lives were immeasurably changed with the birth of our firstborn child, but on top of that we had just been hit with the news that he had special needs. One of the most difficult times we went through was during the first three months of Tommy’s life. We were given an overwhelming amount of information. Numerous doctors came to talk to us about the diagnosis of Down syndrome and all that it entails.
While this was a difficult time, the blessings we encountered were undeniable. First of all, we had been blessed with this precious new child. It was still a time of joy and celebration! The other major blessing was to have medical professionals who cared for Tommy. Only fifteen years ago the medical field saw little to no value in caring for children with Down syndrome; they would have likely ignored any health concerns because sadly these kids weren’t worth “fixing.” Back then it was often suggested for parents to give up a child with Down syndrome and have him or her institutionalized. We are extremely thankful to be living in a time and place where there is so much information and medical assistance to care for people with special needs.
Naturally, I still worry a lot about health problems. They continually nag me. I think about the cardiologist appointments we attend every six months or keeping an eye out for possible thyroid problems, sleep apnea, or any of the other medical problems that are associated with Down Syndrome. However, the worry most often comes in the form of how well Tommy will function in the “real” world. At times the “what if’s” creep into my mind and I forget that God is in control of everything.
What if something happens to me or my husband? When Tommy grows up, will he be able to live on his own? How will he understand the Gospel? All these looming questions have made me deeply appreciate God’s sovereignty. God’s Word tells me that I’m not supposed to worry, but to have faith, because God takes care of all things (Matthew 6:25-34). This will always be an area of difficulty for me, but I know that the Lord has already used it to strengthen my faith and increase my reliance upon our Heavenly Father.
Shortly after Tommy was born we visited the geneticists office where one of the nurses explained that at some point it would become troublesome for me to see Tommy’s peers pass him up developmentally, especially children who were younger than him. My response was prideful; I was certain it wouldn’t bother me. I was wrong. It took me a while to realize just how much work it was for Tommy to learn everyday skills. As I watched how hard some things are for Tommy compared to other kids, I would find myself becoming sad or even envious. We have another son, Silas, who is two years younger than Tommy, and my husband and I are constantly amazed at Silas’ natural ability to do things on his own.
I don’t desire for things to be harder for Tommy, but they are, and that is what we have to work with. It isn’t a bad thing to have to work hard; God’s Word reminds me that God’s power is made perfect in our weakness (2 Corinthians 12:9). A perk to all the extra work we put in is the excitement when Tommy achieves something new. That feeling of accomplishment isn’t something we get to experience as often with Silas. What Silas is able to do on his own accord, Tommy often needs our assistance to learn. I have found this to be a blessing of Down syndrome, that through the hard work and effort, you bond with your child in a unique and special way.
On an encouraging note, Tommy’s struggles are no longer as emotional for me. Now when I see a younger child who can walk up and down stairs with ease; I just think, “Okay that’s something we need to start working on this week.” It does get easier.
Of course, having supportive family and friends and an encouraging church family is very beneficial. I have found that there are a few practical ways friends and family can help parents who have children with special needs.
- Congratulate parents on the birth of their child. So many friends and family came to visit us and weren’t sure how to respond to our new little baby. Some even cried in sadness when they saw Tommy. The birth of a child is a joyful occasion, not a time to be solemn and offer condolences. Every family is different and will respond to such a diagnosis in a different way, but remember a birth is a time to be happy. Be sincere when you congratulate them.
- Offer to babysit siblings for doctor appointments or therapy sessions. After having our second child, Tommy’s therapy sessions became exhausting. Trying to participate and learn how to help Tommy, while keeping an infant occupied was very difficult. I can only imagine how much more stressful all of Tommy’s appointments would have been in the beginning if we had another child to bring along with us.
- Schedule play dates. It is really helpful for me to be surrounded by Godly, encouraging women, and also for Tommy to be around other children to push him to be more active.
- Ignore that the child is “different.” It is difficult when everybody notices Tommy has Down syndrome. People in the grocery store will constantly make over our “special angel.” While people are intending to be nice, as a parent it is a little daunting. Tommy is a wonderful, precious blessing to us, no doubt. He is also human and imperfect. Trust me on that. It is very difficult to know how to handle the responses of strangers, and even family and friends. Honestly, my favorite thing is when people completely ignore that Tommy has Down syndrome and just love on him for who he is.
Many people apologize to me and comment about how sad it is that Tommy has Down syndrome. There is no need to feel sorry for us. It was not an accident that Tommy was born with Down syndrome. God ordained it. There is no need to grieve over some kind of “loss” because having Tommy is an immeasurable gain to our lives. All children are a blessing – special needs or not.