What it's really like to have a child with Down syndrome

During the weeks after Noah was first diagnosed with Down syndrome, I scoured the internet for information. I know the saying “knowledge is power” sounds a little cheesy, but learning as much as I could about DS helped me understand the diagnosis and anticipate what to expect for the future. I came across a multitude of medical websites with very straightforward explanations of what DS is and the physical and intellectual characteristics people with DS generally have. These were helpful for the most part, but I wanted something more personal to tell me what it would actually be like to have a child with DS. How will it be different than it was with Landon? I came across quite a few blogs written by parents who have kids with DS. The more popular and regularly updated ones seemed to share the same theme. Something along these lines:

Yeah, we were a little scared and surprised when we found out that our baby had Down syndrome, but now life is fabulous. Raising a child with Down syndrome is easy and no different than raising a typical child. Our life is so much better because our child has Down syndrome and we wouldn’t have it any other way.

Seriously? I frankly had a lot of trouble believing this. I had just found out that my baby would lag behind in all areas of development, would need physical, occupational and speech therapy, had difficulty hearing, was hypothyroid, would be more prone to an abundance of other health issues, may never have a job or live on his own, and so many other uncertainties about the future. And you’re telling me that you are glad that your child has DS and that you wouldn’t change any of these things? Yeah right. You make your life look so perfect and here I am feeling like mine is completely shattered. At that time (several weeks after Noah was born), I felt confident that I would never be in that positive place. I would never feel like DS was easy, or a blessing, or a gift from God, or any of the other encouraging things people were saying. I couldn’t imagine not waking up every morning wishing that it was all a dream, wishing that Noah did not have DS.

To be honest, I still wake up some mornings and wish that Noah didn’t have DS. I feel guilty about that because it somehow feels like an insult to Noah, that I wish he were different. But it’s so much more complicated that just that. You can’t distill it down to a single feeling. Do I want Noah to be different that who he is? No. But do I wish that he didn’t have to struggle so much to learn how to crawl? Yes. Do I wish that he could hear perfectly clearly? Yes. Does it make me sad to think that he may face so many more obstacles than a typical child? Yes. Do I love him no matter what? Absolutely.

What I’d like to share in this post is what it’s really like to have a child with Down syndrome, for me at least because I’m sure everyone’s experience is completely different. No sugar coating, no pity party. Just the reality of it.

It really isn’t that different on the surface

I read somewhere that the first thing to know about kids with DS is that they are more like typical kids than they are different. I have definitely found this to be true. Despite additional appointments and therapy for Noah, he is pretty much like any other baby. Raising him requires the same things it did with Landon – patience, sleepless nights, love, selflessness, a sense of humor. Sure, Noah’s development is delayed, but he will eventually reach all of the same milestones as a typical child. He is on his own timeline and that is perfectly fine. It may have taken me a while to get to this mindset, but it’s one that I think most parents of kids with special needs must reach. Your child is going to develop at his/her own pace and there is nothing wrong with that. I try my best to encourage Noah right where he is at, without wishing he was further along or being frustrated that he’s behind.

It’s hard

I would be lying if I said that it wasn’t hard. It’s hard every time I see a child younger than Noah doing things that he can’t do yet. It’s hard every time I have to call the insurance company or the doctor or physical therapist or audiologist. It’s hard to think about the future. It’s hard to be around typical kids his age. It’s hard when people first meet Noah and you see the question in their eyes. But you know what? Things with a typical child are hard too. It’s hard when Landon asks so sweetly for me to read a story to him, but I can’t because I’m rushing off to work. It’s hard when Landon is throwing a tantrum in the car because he wants to listen to his train CD that we left at home. It’s hard to get home from work and feel torn between just sitting down and playing with my boys and cooking dinner. It’s hard to find time to spend with my amazing husband, always feeling like he’s not getting the time and patience he deserves. Anyone who tells you that any kind of parenting is easy is lying to you. Yes, the challenges may be different with a child with special needs, but there are challenges with any child.

It puts things in perspective

Noah is now a very healthy boy and moving along with his development, albeit at his own pace. However, I had so much fear and uncertainty before he was born. As soon as the doctor mentioned stillbirth as one of the concerns with IUGR, my whole perspective changed. I no longer prayed for a healthy baby; I prayed that my baby would live. Yes, Noah’s diagnosis shocked us and has been difficult in some ways to adjust to. But he’s alive, healthy and happy. In light of that, my priorities and outlook have changed. I am able to better let go of anxiety about insignificant things and focus on what’s important. I am more aware than ever at what an incredible family we have and I have delighted in seeing all of us grow closer throughout the past year. I am thankful for being in a city that has so many resources for families and leading specialists for children with special needs. I am grateful for the abundance of support we have been given. Sometimes it takes something that seems like a tragedy to reveal a level of joy and appreciation you never knew existed.

If you are anything like me, you will cry…a lot

For me, parenting a child with special needs has been emotionally difficult. I have probably cried more tears in this past year than in all the years of my life combined. I was sad because I never expected to have a child with special needs, and it felt terrifying and lonely and overwhelming. I was sad because I felt immensely inadequate as a parent. Mostly I was sad for Noah – for the challenges he would face, the judgment he might receive, the differences he would feel. I really struggled with this at first. I felt guilty every time I felt sad or upset by Noah’s diagnosis. It felt like I was insulting him, like it was an acknowledgement that there was something wrong with him. A friend told me, “You will feel everything from sadness to anger to grief and everything in between. And whatever you are feeling, it’s okay. Just let yourself feel it.” That was great advice. The first couple weeks after Noah was born I felt like I was constantly trying to hold my feelings at bay and not give into the sadness I was feeling. Then I learned that I had to just let that go and allow myself to go through whatever range of emotions I needed to. This blog has been extremely helpful in enabling me to process my emotions and then move on.

There are many things to celebrate

With Landon I took most milestones for granted. Sure, it was exciting when he took his first bite of solid food or his first step. But I never worried that he might not reach the next milestone or that he was delayed. With Noah, we celebrate every milestone and rightly so. The little guy works so hard to overcome his low muscle tone and he deserves to be celebrated! Not only that, but Noah is such a happy little guy. What he lacks in mobility he makes up for in personality. He smiles generously and makes his brother laugh regularly. He sways from side to side when he hears music. He babbles all the time. He loves to snuggle. Although I have shared some of the struggles we have experienced, our household is not a sad one. Noah brings so much joy to our family and for that we are incredibly blessed.

You will hurt for your child

This one gets me the most. I just ache for Noah when I see him struggle. He wants so badly to crawl right now. I can see his frustration as he tries to lift his stomach off the ground and reach for a toy, but his body won’t cooperate. I know that throughout his entire life I will watch him struggle to do things that come easily and naturally to most kids. I know that some people will judge him based on his diagnosis, and that breaks my heart. I don’t know that this hurt will ever go away, but I think that is the nature of being a parent. We can’t control what our children will experience. As much as I want to shelter both my boys from any kind of struggle or hurt, I can’t. I can only do my best to raise them to be confident in who they are and love them like crazy.

There are lots of appointments

This may seem insignificant in the grand scheme of things, but the logistics of raising a child with special needs are demanding. The first several months felt like one appointment after another, specialist upon specialist, test upon test. Then after all those tests and appointments, you have to research what the results mean, decide on treatment options, ask questions like “Will one additional therapy per week for Noah be beneficial, or will it make scheduling so difficult that we will all go crazy?”  It’s all a balance, but making those decisions on top of work and managing a household can be stressful.

You will become a more compassionate person

Not only you, but also those around your child, will develop compassion. I guarantee it. My mom told me this right after Noah was born, but I didn’t really begin to feel or see it happen until recently. The other night as I was putting Landon to bed I asked if he had anything to pray for. He said he wanted to pray that Noah would have a good therapy session and that he wouldn’t be sad when he had to get his blood drawn. I walked out of the boys’ room in tears that night. I know that he is developing into a more compassionate person because of Noah. I hope that other kids Noah encounters will learn to be more accepting of differences. I hope that the adults in Noah’s life will gain a greater understanding of those with special needs. I hope that Noah teaches us all to love unconditionally and to celebrate what’s truly important in life.

I hope that these points don’t sound overly negative because that is not what I’m trying to convey. I just know that when I was searching for a realistic idea of what raising a child with Down syndrome was like, I could only find depictions of what seemed to me only “the good stuff”. I needed to feel validated that other people were experiencing the things that I was struggling with. I didn’t only want to hear about the joys, but also the sorrows. The full picture. That’s what I’m trying to portray. Despite all of the challenges, it’s so worth it. I have two incredibly sweet, happy, loving little boys that I wouldn’t trade for anything.

Jess

Tagged as: Noah, Down Syndrome
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Comments (9)

Daphne

September 25th, 2014

9:47 pm

This is so amazing to read. I love hearing the struggles. We all go through them as parents. Although mine might be different than yours, I love hearing the real-raw times in someones life. We are all in this together as parents, and we need to support one another as best as we can. Thank you for sharing this.
 

Lynda

September 25th, 2014

10:07 pm

Beautiful Jess! You are not only a wonderful mother, but a talented writer. Like I said when we got the diagnosis, God chose you and Cameron to be Noah's parents because He knew exactly what he was doing. Love you!
 

Terri

September 25th, 2014

11:35 pm

Wow! I have often wondered about you and your family, I just sat and read everything and I am so impressed with you! I know you have a busy job, you are a working mother AND an incredible writer! Sending you positive thoughts and a big hug!
 

Amy

September 26th, 2014

4:36 am

Jess, I love this reflection because it is so honest. Thank you for your amazing ability to reach deep and help me along with others realize that even in our darkest moments we can still shine as a light for others. Jess you are a light, a breath of fresh air, and one heck of a mom.
 

Michaela

September 26th, 2014

12:07 pm

Simply beautiful
 

Gloria

October 21st, 2014

3:57 pm

This is so wonderfully written, Jessica!
 

Courtney

December 3rd, 2014

4:45 pm

Thank you for sharing. I feel similarly. My boy with DS is now 14 months. Katie told me about your blog. I hope we can meet sometime soon! I think our boys will have fun playing
 

Rebecca

February 2nd, 2015

4:39 pm

Oh, Jess, I loved reading this. I haven't had a chance to read all of your blog posts but as I wait for the arrival of my little lady, I wanted to read more. You are amazing as is your sweet little guy. Thank you for sharing so open and honestly!
 

Mary

May 28th, 2017

11:38 am

I so love your post! It's like me talking and pouring my heart's out. It is exactly the same feeling and experience I am encountering with my son with special needs. Nevertheless, I know that God has a great reason and purpose for choosing us to be caretakers of these wonderful children. I still consider that special children was given to parents who are special in the eyes of our God! Let's make a difference!
 

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