Monday, October 27, 2014

Having a Child With Down Syndrome

October is Down Syndrome Awareness Month, and as many of you know, I have a son with Down Syndrome. He’s a beautiful, happy, mischievous nine year old who had done more to change me than any other single thing I’ve been through or person I’ve known.




I get asked a lot about what it’s like having a child with disabilities. On top of having Down Syndrome, he also has some severe health issues that require daily medications, 20+ surgeries, hospital stays, plus there are the therapies, specialist appointments, and meetings with the school. People are curious about what that’s like on a day-to-day basis, as well as long-term. Taken on paper, it seems like a lot to handle, but I can tell you that when you are living it, it’s a lot like anything else you’re dealt. You just do it.

Recently I had the chance to email someone who just found out she’s having a baby with Down Syndrome. I’ve sent emails (and had conversations) like this several times over the years since I’ve had Spencer—people who were like me. Afraid, nervous, overwhelmed, not sure what this means for the rest of their lives. (I go more into how I felt about the news in this post.)

In honor of Down Syndrome Awareness month, I want to share with you a letter I recently sent to a mother who had just discovered that her daughter will have Down Syndrome. I share this partly to give you some small insight into what it's like to have a child with Down Syndrome and also as a tribute to my son.

Dear Friend,

 I've been thinking about you and wanted to write you a note with a few of my thoughts that come from having found out over 9 years ago that I'd have a child with Down Syndrome. I remember how much I struggled with that news. I had so many fears and it felt like NO ONE understood or congratulated me. My pregnancy turned from something exciting to something sad and awkward, and the only thing that helped me was talking to someone who'd had a child with Down Syndrome several years before. So, with that in mind, I wanted to send you this email and hope that it can help bring you a little peace.

1) Having a child with Down Syndrome is one of the best things that has ever happened to me and to our family. You may know that Spencer was born with several birth defects--including in his heart, stomach, and intestines. He has had several surgeries, therapies, hospitalizations, meetings and so much more where I have met the most amazing people I never would have met otherwise. People who have changed my life and changed how I see things. It's compelled me to turn more toward God than I ever had to before and to never take life and the people I love for granted. I wouldn't trade those lessons for the world.

2) Having a child with Down Syndrome will help you see the goodness in people. I am constantly in awe of the people who are touched just by a child with Down Syndrome. I've seen a grown man, tatooed, fresh from the army, struggling with drug addiction, weep after one of Spencer's 100% accepting hugs. People often jump up to help me when needed, strangers stop to talk to him and give him high fives, and I've seen genuine kindness and compassion that touches my heart.

3) Having a child with Down Syndrome will bring a special spirit into your home. Sometimes people say to me: I don't know how you do it. (And you'll get this a lot too. You probably already have). Here's how I do it: I turn to the Lord and he is ALWAYS, without fail there for me. He has given me strength beyond my own time and time again. You know that Martin Handcart story* where they are pushing the handcarts, and then suddenly the handcarts are pulling them--and it's the angels helping? I've felt that. Points where my heart hurts so terribly for all the things he goes through, or all the things he's missing out on (or for all our family has gone through and how long the road will always be) and I feel like we cannot go on any longer, and angels have wrapped me in their arms and helped me do it for another day. They surround Spencer. It is a tangible feeling. With every hard thing we've gone through with him, we have been blessed abundantly with assurances that the Lord is very aware of us and our struggles, and that he believes in our capabilities. 

4) Having a child with Down Syndrome will change you, and it will change your family. I have seen my children take responsibility for the care of their brother without me asking—it’s just because they love him. They are very accepting of other's differences. They are the first to help other students with disabilities in their classes or volunteer to sit by them. It is normal for them and it is a blessing to these other kids and their families. I didn't know anything about Down Syndrome before having Spencer, and you quickly learn that, in a lot of ways, they are exactly like any other kid. We have more similarities than differences, but because of him, I've learned to love the differences in all of us.

I know that my biggest worry and heartache about Spencer was him missing out on things. But he was sent here, in this way, with this body, because he has a special purpose and certain lives he was sent to touch. I know I'm one of those lives. And I've seen him touch other's lives with his innocent, loving ways and how he continues to smile and laugh despite chronic pain. I didn't choose this, but if I had to go back in time, knowing what I know now, I would choose it. In a heartbeat. 

You will see miracles. You will see the hand of God in your life more than you ever have before. You will love this child with a fierce sort of love that will change you. You will cherish the hugs and kisses and snuggles because you will have a greater appreciation for how delicate life really is. It will be the hardest thing you ever do in your life, but also the best. 

Congratulations!!
Kaylee

(*Martin Handcart story: They were a group of pioneers from the LDS church in the mid-1800s trying to move west to Utah. Due to various reasons, they left late in the season and ended up meeting with harsh weather conditions. Many people died of exposure--children and adults alike--but they had to keep moving forward. Several have left accounts saying that when they were too weak with hypothermia, starvation, and sorrow to push their handcarts, their handcarts began pulling them instead, and they knew it was angels helping them. Go here for the full story. It's pretty amazing.)

3 comments:

  1. This letter is so beautiful. Thank you so much for sharing.

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  2. Well, God bless you and your family. Sweet letter.

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  3. You're making me tear up at my desk, Kaylee! Such an amazing writer, mom, and woman!

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