How did you feel when you first learned your child has a lifelong genetic disability, like Trisomy 21, Down syndrome?
My story is a little different, as with triplets you don’t have time to process it, you have to accept it; this is how I felt anyway. We are approaching the triplets 1st birthday and I am only now mentally “dealing” with Coldon’s diagnosis. There are days when all the emotions hit me at once and it is incredibly hard to function at times. However, we are mamas and it is our job to care for our babies! I see a postpartum therapist as I have an incredible amount of postpartum anxiety and there are times when I feel like it will NEVER get better, but I know it will.
This is my story, Coldon’s diagnosis of Down syndrome (DS). I will refer to Down Syndrome as DS quite a bit. It is appropriate and accepted in the DS community.
We didn’t know until our triplets were born and later with genetic test confirmations,, that Coldon, baby A had Down Syndrome. I went through all the genetic tests available for blood testing while pregnant, however triplets caused me to have a high-risk pregnancy, so amniocentesis was out of the question. The test results came back without indication of genetic mutations in the fetuses or myself, but we did learn I was a carrier for Cystic Fibrosis. We chose not to do any research or further testing, as we decided if any of the babies had Cystic Fibrosis it was in God’s plan for us and typically, a heart defect is the common indicator for DS and many other genetic disorders. Coldon had a healthy heart and he was equally as active as Ella and Greyson, so there were no indicators in any of our many anatomy scans for the doctors to become concerned.
As I was lying on the OR table, the Neonatologist, came to my side and asked if we were aware baby A might have Trisomy 21. This was the first time I ever heard of Trisomy 21. I felt like it was a little improper to tell us something like this in the OR, while my doctor was completing my surgery.
Aren’t you supposed to be in an office with the door shut and the doctor being empathetic and holding tissues for you if you begin to cry? This was definitely not how we were told. However, Jay later told me he knew something was up when they were pulling Coldon’s legs together and after they would flop back down and the medical team began talking amongst themselves. He wanted to know what was going on and the doctor knew Jay was concerned and aware, so he decided to talk to us then instead of waiting for the office, closed door and tissues.
We were informed right after delivery, Coldon had a large gap between his big toe and index toe, indicating “Sandal foot,” a single crease in the palm of his hands and Hypotonia, low muscle tone, all “soft” indicators of DS. The doctor reassured us nothing would be confirmed until after genetic testing was run and completed. There were a myriad of tests ordered for Coldon, but not Ella and Greyson. Most importantly, aside from the specific genetic tests were an Echocardiogram, EKG and x-ray of his lungs.
All of this was a blur for me. There were so many things going on and different medical staff coming to me with what felt like a never-ending amount of questions and information. I don’t even remember when these tests were completed. All I remember was during one of the rounds in the NICU, the doctors made sure we knew Coldon had a healthy heart and they mentioned his Aortic Arch was textbook perfect. I thought, ok that’s great; every new mom wants to know their baby has 10 fingers, 10 toes and a healthy heart, right? Coldon had the cutest feet ever and was a little more floppy than Ella and Greyson… Well, little did I understand how incredibly important a healthy heart was for a child with DS.
Later, while in the NICU, we received the confirmed genetics test results; Coldon did in fact have Trisomy 21 throughout every cell in his body. (There are actually three types of Down Syndrome. More on that later.) Like I mentioned earlier, Coldon’s diagnosis didn’t ever really sink in, until recently. The last year has been a blur and I haven’t had time to put much thought about Coldon having DS or a need to think about it. As a triplet mom, we tend to focus on keeping them fed, healthy and alive; can’t sweat the small stuff! Well, as the triplets are getting older, I’m slowly gaining time and as Coldon develops into a toddler, he is starting to exhibit behavioral characteristics of DS, so now I have the need to think about it.
Coldon has a myriad of complications from his diagnosis and he’s going to have them for the rest of his life. Some of the first things I thought about when I we received his diagnosis were about his future. Will he be able to have a girlfriend, get married? What about children… it isn’t fair to take that away from someone.
I started reading other peoples stories, moms of individuals with DS, individual people with DS and families of individuals with DS. The most important message I have taken from the hundreds of stories I’ve read; your individual child will do as much as you teach them, push them and encourage them to do. For this reason, we expect the same from Coldon as we do from Ella and Greyson. There are some circumstances we treat differently, but we do not treat Coldon differently.
To answer the questions I asked myself; Coldon most likely will not have children and this is a very sensitive comment (I DON’T NEED ANYONE’S OPINIONS), but he shouldn’t have children as the likelihood of having a child with Trisomy 21 is extremely high and the health conditions are significantly worse. This would mean a poor quality of life for the child. However, this isn’t my choice. It’s God’s choice if he chooses for Coldon to be one of the extremely rare people with DS who aren’t sterile. If Coldon can and wants to have children, I will support him 100%. I will support Coldon if and when he decides to date and I will support him if and when he marries as will our whole family!
Aside from these specific questions and worries are the common worries any parent of a child with a disability worries about. Can he go to school, will he be picked on at school, will he have significant or any learning disabilities? Will he be able to go to college, will he be able to work a job, will he be able to live by himself? I could drive myself mad with all the “what if” questions. Instead, I choose to FOCUS ON THE POSITIVE aspects of Coldon’s diagnosis. Coldon can do anything he sets his mind to do! Down syndrome is something Coldon has, not who he is. I try to look at his diagnosis and his prospective future like this; Coldon’s the normal one and everyone else is different!! He is my most cooperative baby of the three.
I believe the reason I have not been as effected by Coldon’s diagnosis, is I have chosen not to be. I don’t question God’s work. There have been times when I asked God why does Coldon have Down syndrome, but I haven’t allowed myself to get upset about it or worse, depressed about it. Through our ups and downs and my faith in God, I know why Coldon has Down Syndrome. God has a purpose for us, for me, for Coldon, for Jay, Ella and Greyson and Down syndrome is part of our purposes.
Through Coldon’s diagnosis and the constant issues and worries, I have found Gods purpose for me. This is something I’ve struggled with for years. What is my purpose on this earth? Well, it took triplets and Down syndrome to find the answer. I have an incredible platform to advocate for and an amazing and unique story to share. I also have discovered a passion for being a mother and how incredible it feels to love someone so much you would give up your life for them!
I know God gave me Coldon, because he knew I was the one person in the world who could handle his diagnosis. There is a quote I like, “God doesn’t give special kids to special parents. He takes ordinary, imperfect people and gifts them with his greatest treasures. And therein, he creates special parents.” Parent’s who love their children, care for them, help them grow and develop to be the best they can be, are “special” parents. There is nothing we did wrong or could have done differently to prevent our precious gifts from God to be any different. They were created long before we thought about trying to have a child and they are part of our plan and we are part of theirs.
If we teach our children to thrive and not think any less of themselves, they wont. If we encourage them to be the best they can be, they will be the BEST. We are doing the best job we can raising and caring for our children, the best way we can. Teaching them to be their best! FOCUS ON THE BEAUTY AND THE BEST PARTS OF YOUR CHILDS DIAGNOSIS; don’t let the diagnosis become who you or your child is.