Your Child has Down Syndrome

Receiving a Down syndrome Diagnosis

Dear Mom,
Today you will receive a phone call. The information the nurse gives you will hit you like a ton of bricks. For a while, you will view this day negatively. A day that causes you anger, pain, and fear. Not only because of the information that was given, but the way in which the whole thing was handled. A nurse will tell you that your son has Down syndrome and the doctor will encourage termination. In fact, after you give him a somewhat-unsure “No” the first time he asks, he will press on until the second “No” is more firm, and a little angry. You will feel overcome with a variety of emotions. Fear. Sadness. Confusion. Guilt.

The days that follow will be veiled in mourning and shock. You will cancel a trip. You will hug your spouse. You will rub your belly and feel your baby kick as the emotions swirl inside you, above all hoping that your baby will be ok.

But let me tell you how you will see that day three years later.

That phone call will be life changing. You know this. At the time, you think it’s for the worst. Questions will run through your head like, “Who will care for my son when I die?” “Will he go to college?” “Will he get married?” “How will this change our life?” “How am I supposed to do this?”
Three years later, you still won’t have answers to most of those questions. You’ll realize that most parents don’t have answers to those questions. But you’ll see how it will change your life.

You don’t know it yet, but Down syndrome is, in many ways, a blessing.

Yes, life can be harder with Down syndrome. BUT 98% of the time, it is joy. It is celebrations. It is NORMAL. It is appreciation and love and acceptance and understanding and all those things that you were already working on in your life. You will embrace those things, embrace the challenges and the typicality, and you will take this life by the horns.

BECAUSE you are a special needs mom.

You’ve always known that you had an inner grit, an inner toughness. But you will find that you are stronger BECAUSE you are a special needs mom. You were not graced with Ty because you are strong. No. You are stronger because you were graced with Ty.

1,096 days later

you will look back on this day as a day that you found out you were going to change for the better. Day by day, you changed. Day by day, you grew and came to enjoy and accept the gift that is your son. It wasn’t easy to get there, but you did. How could you not? He is an amazing kid.

Today you aren’t receiving bad news.

You’re receiving life changing news. News that you are going to become a better parent and person. News that your life, as you knew it, was not going according to plan. You will realize that change is not bad, but a fact of life. Life being hard does not mean it is bad.

It’s all about perception.

And three years later, your perception will have changed. Three years later, you’ll look back on that day and realized that it was the beginning of a hard, but amazing and fulfilling journey.

Your life isn’t changing for the worse. Or for the better.

It’s just changing.

Embrace it. You’ve got this.

Ty’s Mom (3 years later)

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