To the New Moms of Kids With Down Syndrome: It Will Be OK

During my third pregnancy we found at the 20-week ultrasound we would be adding another boy to our family! Everything was going smoothly until the ultrasound technician couldn’t see something on Charlie’s heart. As a mom of two children already, staring up at the screen trying to see our baby’s heart I knew something didn’t look right. The ultrasound tech was asking me questions I had never been asked in an ultrasound with my other children and things began to feel really awkward. The technician was cold and never smiled once. Briskly she said, “It looks like your baby might have Down syndrome.” She got up and left the room. I was trying hard to be brave, not cry and let those words sink into my heart.

Down syndrome? I knew nothing about Down syndrome.

The doctor came in and urged us to come back the following week for another ultrasound to see if we could see all of Charlie’s heart. He was a kind and compassionate doctor. I have thanked God so often for that man! The conclusion was that what we were looking for in Charlie’s heart couldn’t be found because it wasn’t there. Charlie had three chambers instead of four, along with a cleft valve. The technical name for his heart defect is called atrial septal defect (ASD), which is the most common heart defect among babies with Down syndrome. We were told if he survived he would need open-heart surgery.

A few weeks later we saw a pediatric cardiologist who confirmed Charlie would be born with a heart defect. I also took a blood test that confirmed Charlie would be born with Down syndrome. When the geneticist called with the blood test results she said, “Hello, Nichole, I am calling to give you the results of the DNA test that you took last week. Unfortunately, your son will be born with Down syndrome.”

Unfortunately? My son?

Oh the thoughts that were racing through my mind at that moment. Why do people presume Down syndrome is unfortunate? This is the mindset that scares people into thinking their child doesn’t have worth. This is the mindset that makes the abortion rate what it is in women who receive a prenatal Down syndrome diagnosis! The only thing unfortunate in this situation was the geneticist’s sorry attitude towards my son’s life!

From that point forward the pregnancy was considered a “High Risk Pregnancy.” We went to ultrasounds almost every week to monitor Charlie’s progress. We were told most babies with Down syndrome do not make it to full term, which could complicate the matters with Charlie’s heart. Our perinatal doctor and pediatric cardiologist were very gentle but honest in saying they could not guarantee our son would live after he was born. This was extremely difficult to bear.

Maybe you are reading this today and you have received a Down syndrome diagnosis and you are filled with fear or worry for what the future holds for your child. Perhaps you feel inadequate to take care of the needs of a child who will have medical complications or need extra help. Maybe you think you wont be “enough” for your child. Or maybe you are feeling guilty for being scared and overwhelmed by a lot of new information. Well, I’m here to tell you all of the above is completely OK and normal to feel! I believe I can safely say, most of us in this same situation have had similar thoughts and felt the same way.

Breathe.

There is a lot of “bad” and “outdated” information out there about Down syndrome. And not to mention, many doctors who present Down syndrome as “doom and gloom.” You would think by now this would not be the case…but it is.

 

Doctors and professionals can tell you a lot of statistics, numbers and facts — and a lot of it doesn’t sound very promising or pretty. But do you know what they won’t ever be able to tell you? They won’t ever be able to tell you what your child’s favorite color will be or describe their love for bananas or how on their 1st birthday they will cry because they were afraid of the candle. They won’t be able to describe how music makes your child’s face come to life! They won’t be able to describe the love you feel the first time you see your sweet baby’s face and kiss their fingers and toes!

They won’t be able to tell you your child, who is born with a disability, will impact their siblings in a profound way, instilling compassion, patience and love for others.

And they definitely won’t be able to tell you this child — although born with a broken heart or medically fragile and an extra 21st chromosome — this child, the one chosen for you, will teach you how to love deeper and stronger than you could have ever known was possible. Your child will teach you the meaning of real, true, deep love. The kind of love that fights for what is right, stands up for the truth, no matter the cost, and helps you to reach down and become resilient like no Mother or Father has ever been. This child, this sweet babe, will teach you to see love in a different light. The kind that keeps hoping and never giving up for the good things in the world! This child, although different from the rest, will be the one who teaches you what humanity and kindness is all about.

You may very well meet some people along the way who don’t understand these things. In fact, they may even be completely oblivious to them. Believe it or not, this is an opportunity to teach others about how our kids with Down syndrome are children first. Our children, if given the chance, can teach others some really good lessons. Our children can be lights in a world that so badly needs goodness and kindness.

And perhaps you are reading this thinking, “I’m not ready to conquer the world or put my kid out there to teach people nice things…I’m just trying to accept my life has been flipped upside down.” That’s OK. Take it one day at a time. It’s OK to be scared, nervous and fearful. Let all that emotion out. Find someone who you can confide in. Someone you can be real with. You are not alone.

I would be lying if I said our lives are easy-peasy-lemon-squeezy. There are things that are difficult about having a child with Down syndrome, but I would like to say equally, there are things that are difficult with my children who do not have a diagnosis. We work extremely hard to help Charlie accomplish small tasks, sometimes for months at a time. There have been plenty of days when I have felt defeated, scared and lonely simply because we have worked so hard and seen little progress. However, the joy that comes from all of us helping Charlie to accomplish something as simple as drinking out of a straw, far outweighs the difficult parts. Charlie’s life brings us together. Charlie’s life has been essential in teaching us all patience and acceptance for each other’s abilities, good or bad.

What I want others to know about Down syndrome is that it isn’t scary. My son and your children, they are so worthy. Worthy of love and affection and of any opportunity that comes along their way. They are world changers, if only given the chance. Are you willing to give them that chance?

So, my friend, welcome to this new journey called Down syndrome. You will experience ups and downs. You will have high-highs and low-lows. You will have hard days, just like anyone who is a parent. One day, any fear or worry you have will melt away. One day you might find yourself jumping and screaming, elated with joy, celebrating a milestone that perhaps you thought was never possible and yet here you are. You will realize you are now part of a secret world full of some of the best people you will ever meet. And I believe your life will be changed…for the better.

Follow this journey at Moberly Avebtures.

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