When I first found out I was pregnant, I was in shock. We had wanted a big family, but my first two pregnancies took a toll on my body, and by that time our other children were eight and six. I wasn’t sure I could handle going through it again and start over with another baby. My husband was thrilled, but it took me a few days to adjust to the idea. Soon, we were both overjoyed, and I could easily say, this must be God’s will and that He must have gotten tired of us waiting around to decide on a third child. You see, we had earlier fertility problems, so it was practically a miracle to have an unexpected pregnancy. In my ninth month, my biggest concern was how hot it was to be pregnant in July in Mississippi, and whether our older son would test into the high IQ Accent gifted program at school. I distinctly remember re-reading the What to Expect When You are Expecting book and skipping the chapter on having a child with a disability. It wasn’t even on my radar screen. Why would it be after already having two healthy children that were overachieving in school? I was turning 35 during this pregnancy and my doctor asked me if I wanted to have any testing done, but he didn’t push it, and I said it wasn’t necessary because no matter what, termination was not an option.
The week before my due date, my mom came to pick up the kids and took them home to Illinois for a week of grandparent spoiling. When I went into labor, Chuck and I quietly went to the hospital on our own and had the easiest delivery of the three. We have no family in Mississippi, and we didn’t even tell friends we were going to the hospital. Matthew’s birth was a beautiful experience, the easiest delivery I had, and we were so excited to call family in New York and Illinois where they all popped champagne to celebrate. A few hours later, I was encouraging Chuck to go home and get some rest. He was making one last call when the door opened and a doctor and a number of nurses walked in, stood awkwardly around the end of the bed and gave us the news that it was a good chance that Matthew had Down syndrome…then they walked out and left us in shock. So there we were, alone on a Saturday night at the hospital, and started another round of phone calls to share the news. There were a lot of tears that night.
If I could give my younger self some advice, I would tell myself to relax and enjoy your new baby.
I didn’t really know what Down syndrome was, but I knew that it wasn’t what we expected or wanted. Sometime in the night, we were informed Matthew was having trouble breathing and they were taking him to the NICU and they suspected a likely heart problem. I have to say there were times that night that I truly despaired. I didn’t want this, and I didn’t think I could deal with this. Chuck and I had never felt so alone, but we made a commitment that we were in this together.
We ended up spending three weeks in the NICU with Matthew, and it wasn’t a heart problem, but a colon problem called Hirschsprung’s disease. It ended up being a bigger issue for a few years than Down syndrome. I remember the first time I left the hospital without him, I cried all the way home. The Down syndrome part was no longer a problem in my mind. He was my baby, I loved him, and I wanted to bring him home.
The best advice I received while I was in the hospital was that how we present Matthew to the world is the way the world would treat him. We took that to heart, and it worked out really well for our family. We sent out daily emails with health updates, but also telling people how happy we were that Matthew had arrived. It signaled to our friends and family how they should respond and support us. We were overwhelmed with support from our families out-of-state, but also our local friends, church family, and even a lot of strangers.
Yes, we struggled internally (me, more so than my husband), and there were times of tears, anger, grief, and sadness mixed in with the joy and happiness. That is perfectly normal and Chuck and I had to work through that both together as a couple and individually, and we each did so at a different pace and in our own way.
Matthew has changed our lives in so many ways. He was not what we expected, but I soon came to realize that really none of our children turn out how we expect. They all have their own strengths, weaknesses, and when those little personalities come out, they are who they are. Matthew was who he is from the moment of conception, and how lucky we are to have him! He has brought us so much joy. He has taught his older brother and sister true compassion and caring, and they adore him. I’ve often told his siblings if they date someone who doesn’t like their brother, that’s a deal-breaker who isn’t worth their time. Sometimes I think God gave us Matthew to teach me about patience and perseverance. Matthew can be so very funny and so stubborn. He is active in boy scouts and his dad is determined that Matthew will someday achieve Eagle Scout just as he and Matthew’s older brother had. He is very active in our Catholic church, already made his First Communion and on his way to making his Confirmation with his peers. He sings and prays louder and more off-key than anyone in the church, and I know there are people who make a point to sit by us because they love how he shows his faith. Matthew is involved in our church youth group and attends religious education classes. His expressive verbal skills are definitely delayed. Part of that I think is just his personality. He is so like his brother. If one or two words will do instead of a sentence, that is what they will say. He is the class clown at school, and everywhere we go in town, we run into someone who knows Matthew. He brings a smile to faces wherever he goes, and wouldn’t it be great if we all had that natural ability?
Our dreams and wishes for Matthew are no different than for our older kids. We want them to be happy doing whatever that means, and they are each very different and very unique. He will never achieve academically to the level of his siblings, and that’s ok. He is happy and achieving what he can achieve. It is so clear that none of our three children has turned out to be what we expected, and isn’t that part of the fun (and sometimes angst) of being a parent? We love, we nurture, we watch them grow and give them wings to y in their own direction. Matthew is going in his own direction, and we love the journey he is taking us on.
If I had to give my younger self some advice from my older self, I would tell myself to relax and enjoy your new baby. I would also give myself permission to ask for help from the people that offered it. I tend to try to be strong, slap a smile on my face, and pretend I can do it all myself. It’s ok to accept help, and it also helps friends and family to be included. Share that baby with others, and let them fall in love too! I’d also get involved with other families who have a child with Down syndrome. Learn from them and ask questions. There was no CMDSS or New Parent Guide when we had Matthew, which is one of the reasons why we started the group and put this guide together. Shared knowledge only makes you stronger.
Congratulations on your new baby! I look forward to meeting you sometime and watching your sweet baby grow up. Feel free to call me if I can help, answer questions, or support you and your family in any way.
