5 pieces of advice from a year with down syndrome…

The other day, someone asked me a question that took me by surprise and has stuck with me since. The question?

“What would you tell someone else who is expecting a child of their own that has Down Syndrome?”

At first, my instinct was to respond with something along a cheesy cliche about how “awesome the journey is” or something like that. But I stopped myself because I wanted to give an honest, authentic answer to that person who is just starting to walk on the path I started a year ago. I know that there are men (and women) on this blog who are in that exact same position, so after looking back over the past year, here is what I would tell that person…

First, I know you are scared, confused and desperate. You probably have almost overwhelming fears of what your little baby will be like and how disabled he or she might be. For me, I knew so little about Down Syndrome that I didn’t know what it would mean for my baby boy. Would he ever be able to walk? Or talk? And I know you are probably confused about this could happen and whether it is your fault. Why did this happen to you? Did you fail somehow? Was it a lack of faith, or prayer, or obedience to God? And if you are anything like me, you are desperate to know about this “thing” that has turned your life upside down. What does it mean? What can you expect? What can you do to prepare?

All of these feelings are authentic and it is OK to feel them. Even the doubts! The evening after we found out was THE scariest, most confusing, desperate time in my life. I still remember pacing in our living room, feeling so helpless and out of control. I needed to know more but the uncertainty was tearing me up inside. I wanted to scream, yell, cry, hit something, and fall apart, all at the same time. And my wife Treshia felt the same way. And that was the most critical key to that first day after the news….my bride. My instincts were to isolate myself from her, and everyone else, and to process through this news by myself and to not come out until I had it all figured and planned out. But instead, Treshia & I turned to each other and struggled together. We wept desperately, we prayed honestly to God together and we learned together. I cannot tell you how important it is for you to be honest about what you are going through, in your mind and in your heart, and to do it with your spouse. While “going it alone” might be safer (you don’t have to share feelings, etc), it only isolates you and makes things worse. Lean on each other. Weep together, learn together, and struggle together….because someday soon, you will celebrate together.

Two, DON’T let the enemy turn your struggles into condemnations or judgments against you. One of the toughest spots in my struggles was when I had thoughts of whether we should get rid of the problem. Yes, I honestly had thoughts of aborting our baby. They did not last long, but those thoughts DID enter my mind for a brief time. The idea of “getting rid” of the problem quietly, before anyone else knew, was tempting, but in my heart, I knew it was not the answer. While I was so scared of what changes and difficulties Timmy’s birth would bring, I also knew HE WAS MY BOY and I had to protect him, even before he was born. Yes, pain and struggles would inevitably come along with his life, but he was MY precious boy and his life was too precious for me to get rid of, just to make my life easier. And Satan used those brief thoughts to work against me, to make me wonder “What kind of horrible father would even consider killing his child?!? You are a terrible person!” But don’t let that brief moment of doubt and honest struggle bring you down! It is a real thought that is not wrong, it is life! Fight for him/her by celebrating the fact that you are going to keep that life, and that that little one is YOUR baby!

Three, I would recommend you learn as much as you can, both about Down Syndrome and about the journey ahead of you. While no one can tell you exactly what you will face, or what our baby will be like, it helped me SO much to read about others who also had faced the DS journey. For learning about Down Syndrome, I would strongly recommend the book “Babies with Down Syndrome: A New Parents’ Guide” by Susan Skallerup. This book was one that we got early on that really helped us understand both the disorder and our little unborn boy. It gave us a real look at what was ahead, but also gave us so much hope. The second book that I cannot recommend highly enough is “Good and Perfect Gift” by Amy Julia Becker. This is an amazing book written by a mother about her first two years with her daughter Penny, who has DS. It helped us so much to read about someone who had walked where we were headed and was willing to share both the difficulties and the delights of the journey. For me, learning about the disorder was the first step I needed, while my wife needed to hear from someone who had been there before. But we both needed to read both and it brought us closer together too, knowing we would face this together. Finally, I would urge you to contact your location Down Syndrome Association and let them know about your news and when your little one is due. While it feels strange to reach out to a community you do not know, it has been a HUGE blessing to us to have a community of people who know our pains, our doubts and our joys and are willing to be there for us.

Four, if you have other children, be honest and brave with them and share the news with them as soon as you can. They might surprise you. In our case, our two oldest children actually led the way for us into turning our struggles into joy for the journey ahead. After showing them an amazing video called “Just Like You”, we sat down with them and talked about Down Syndrome and about their brother Timmy. We expected confusion and fear from them, but instead we found them excited about their baby brother and about his Down Syndrome. They both said, “He is going to be AWESOME!!” And that joy continued….even to the point that it infected us. We found ourselves taking our emotional cues from them and soon we were celebrating as a family. For us, it meant finding ways to express our family pride (stickers, t-shirts, etc) and planning to participate in the DS Buddy Walk, which happens every year. I was shocked by how well my kids took the news and was so proud of them. God brought such healing through Abbie & Zach, and He will do the same through your kids.

Finally, I would urge you to be as open and honest as you can with your family, your friends and those around you. I cannot even express in words how much our communities (work, church, friends) have meant to us and how much they have lifted us up when we were at the end of our abilities. We received months of meals from friends when we struggled with Timmy in the NICU. We truly FELT the prayers of thousands of people praying for us and our family through the first few difficult months. And we found people around us that came alongside of us, serving us in such beautiful ways like babysitting, financial support and words of encouragement right when they were needed most. It is so hard to open yourself up to those around you, especially when the world encourages us to protect ourselves and to “go it alone.” And it is dangerous. To be open and honest, you have to be vulnerable, and that is scary and dangerous. I will be honest with you that we have had some people hurt us with their insensitive or uneducated comments, but I try to remember that they simply do not know what they are doing. But for every negative or hurtful comment, we have received ten positive, uplifting comments….and those have carried us through some hard times.

It has been really hard, I won’t lie to you. It has been one of the hardest times of my life and there are guaranteed to be difficult times ahead. But, I will honestly tell you that there is no way that I would change it or avoid it if I could. NO WAY, period. In the midst of the storms this last year, I have grown closer to my wife than I have ever known. I have experienced God’s grace, His love and His provision in a real tangible way that I cannot fully explain, but in a way that is way beyond the nauseating Christian cliches that we easily throw around. My children have been changed by having a brother who has Down Syndrome. They are more sensitive to others who are different and they are more loving than ever before. I am more understanding and less judgmental towards those who may not be like me, or may not do things the way I do. I have found myself more understanding of those who are struggling and am more loving towards my family, my friends, coworkers and even those who randomly come in-and-out of my life. So hang in there! Acknowledge and embrace the pain, the doubts, the anger and the joy. Your little one will change you and your family in such amazing, incredible ways that make the struggles OK. It is hard, but it is so worth it. It really is. I promise. And so does God.

(This post was originally posted on the Dad Matters blog page)


~ by kuiperactive on January 10, 2015.

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