To The Mommy Expecting A Child With Down Syndrome

Dear Mommy-To-Be,

I know what you are thinking. You have read something like this letter before. Maybe on another blog, in a book, or perhaps you have even heard it directly from another mother of a child with Down syndrome. If you are like the me from one year ago, you have good days and bad days. Sometimes really bad days. If you are like the me from one year ago, some days you feel that you can handle the unknown ahead of you and other days you feel like this is not what you signed up for. I want you to know that whatever you are feeling, it is OK. It is normal. It is part of the process of grieving the child that you thought you were going to have and preparing for the child that you are about to welcome into this big world.

BUT, I also want you to know that everything you have read before in letters like these - that your child will be amazing; that he or she will provide you with more fulfilment than you could ever have imagined; that you and your family will love this child and take pride in every accomplishment that he or she achieves, just like your typical children if you have them - all of those things are true.

Every single sentiment. And I can say that to you today because I am just a few days shy of one year on this journey with an extra chromosome. I can say that to you today with the experience and wisdom that you will be passing on to another Mommy who is in your old shoes not too far away from now.

One year ago today I reached my 38th week of pregnancy carrying our son, Mark. I remember leaving my 38th week OB appointment having irregular contractions and an induction date set one week later. I remember driving home to my daughter and husband feeling the weight of the past six months of my life on my shoulders. It was heavy. So heavy. The fear of what lay ahead the next week, the next few months, the next few years and even the next few decades of my life was, at times, smothering. We did not know at that time whether or not Mark would end up needing an emergent cardiac procedure after birth. We did not know what other health concerns he might face. He was, without question, a figment of our imagination. And life with Mark, or at least the life that I imagined may be in our future, was filled with uncertainty, anxiety, and fear of an unknown that was so foreign to us as individuals, as a couple, and a family.

Thinking back on that day, one year ago, brings tears to my eyes. The tears are a mixed bag of sadness and joy, but mostly joy. Why sadness? I am sad that I was so afraid of what my life with a child with Down syndrome would be like. In some ways, having a prenatal diagnosis changed the happiness that comes along with pregnancy. It is hard to feel happy when you are acutely aware of the present risks to your unborn child's health, and then you can pick up a book and read about the risks of his future health as well. And instead of daydreaming about what my child would be when he grew up, I had nightmares about all of the things in life that I thought that I would miss out on. That makes me more sad than anything.  Because, and you will learn this in time, Mommy, that your child is going to do the most amazing things, more than you could ever imagine. Yes, he or she will have challenges that a typically developing child will not have. But all children have challenges, and you will quickly find that your little baby with a little extra chromosome will be the most resilient little person that you have ever met. You will find that he or she will do most, if not all of the things that his or her typically developing peers do. And you will find out that the most important dream of a parent is to dream that you can help your child to be a happy adult who is loved, respected and valued by the members of his or her family and community. That is something that we can strive to help all of our children achieve, regardless of chromosome count.

You will also see, dearest Mommy, that when your child is almost one, you will look back and cry tears of joy. Just like me as I write this letter to you. The joy of a life well lived. The joy that comes when a parent feels pride in his or her child. The joy that comes from watching something that you have made and nurtured and loved grow into something that brings light to the darkness of the world around. There is nothing that brings me more joy than seeing my son and daughter together, playing on the ground, loving each other. And you, Mommy, will feel that same joy. Whether it is another sibling, a friend or relative, or even a stranger, you will find that this child will bring happiness to everyone around him or her.

Now, Mommy, I cannot promise you that there will not be hurdles to pass and mountains to climb.

In fact, I can promise you that there will be. I can promise you that you will have moments where you feel sad that your child has to work harder than the other children to do things that we "neurotypicals" take for granted, like walking or eating or talking. There may even be moments where you feel beaten down by yet another trial in the health of your child. And this is all in the first year of life. I've had a number of these moments. Most of the moms that I know with a child with Down syndrome have had them, some of them have had many.

Yet, I can also promise you this. The greatest gift of all is love. And I promise that you will love this child through the trials and tribulations. Through the ups and downs. You will love him or her so fiercely that nothing will stand in your way as you help him or her to navigate the world. There will be naysayers. There will be people that you can educate and there will be others who you chose to leave behind. But your village will start to rise around you, your child, and your entire family. A village that will be there to help carry you through to the other side of the mountain and down into the valley.

Mommy, I want you to know that you are loved. I love you. Every mother of a child with Down syndrome loves you. Because we know what you are going through - the pain, the uncertainty, the fear, and even the anger. However, we also know that you, like SO MANY before you, in a years time, will look back on your journey with love in your heart and tears of joy in your eyes. Love conquers all, Mommy. And you and your special child will be so full of love that you will see that you, indeed, will conquer the world. Together.










Love always,

Katie