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I Think You Should Know

by Katy

reality

April 23, 2013

I Think You Should Know

Hello, Darling

Sometimes I’m afraid to post too much about Roo. I don’t want to just be the “special needs mom,” just like I want Roo to be viewed as more than a “special needs kid.” But sometimes I feel that little tug, the one that says, “You have been given a unique set of circumstances and gifts and opportunities for a reason. Use them.” Today is one of those days. I have been given Roo. I have been given the desire to write. I have been given the opportunity to blog here. I need to use them together, because there are some things I think you should know.  

I think you should know that I was scared and angry when we found out that Roo has Down’s. I have spent most of my life feeling awkward and a little bit afraid around people with special needs. In fact, in my heart I truly believed that God would never give me a child with special needs because (I thought) he didn’t equip me to deal with that. Little did I know that he would equip me as we went. 

I think you should know that my anger lasted more than a day … or a week … or even a month. I am thankful to say that I did not wrestle with my love for Roo, although that is common when babies are diagnosed with a special need or illness at birth. (Roo wasn’t diagnosed until he was almost 3 months old, and I think that bonding time was truly a gift.) But I was angry with God and I pouted like a toddler for several months, determined to “prove him wrong” and show him that I could not handle a child with special needs, hoping that my tantrum would convince him to “heal” Roo. I learned that God has broad shoulders, that he could handle my anger and my tantrums and still hold me in his arms when I cried. He waited out my anger, just like I do with my own children, and I have learned that having Roo in my life—extra chromosome and all—is far from a mistake.  

I think you should know that one of my biggest fears, once we were assured that Roo did not have any major health concerns, was that we wouldn’t be able to be happy again. I thought that any smiles or laughter we had from then on would be tinged with grief. I realize now that I experience more joy on a daily basis with Roo than I ever dreamed was possible.

I think you should know that I was afraid that people would pity us, that our friends would look at us differently and start to unintentionally avoid us. Instead, our friends and family have rallied around us and loved on us and been there for us every step of the way. They have cried with us after frustrating appointments, laughed with us at his sweet and silly antics, and rejoiced with us at every milestone. In fact, we jokingly call little Roo our “rock star,” because he seems to attract fans everywhere he goes. 

I think you should know that it was hard — is still hard, to some degree — for me to go to play groups and hang out with friends who have little ones Roo’s age and under. At first, it was because it broke my heart to watch babies younger than him do things that he couldn’t. Now, it’s more because I feel like we’re in a different world. We march to the beat of our own drum, I like to say, and sometimes that is hard to relate to. But it doesn’t mean that I am angry at moms who don’t have a child with special needs, and it doesn’t mean that I don’t appreciate invitations. 

I think you should know that I knew from the beginning that my family and I would grow so much from having Roo in our lives, but I didn’t care. In those first days and weeks, I just wanted to go back to being “shallow and happy,” as I said more than once. It has taken me almost three years to realize what an incredibly rich life we have not just because we get to know and love Roo, but because of the growth we have experienced and the opportunities that have come our way. 

I think you should know, if you have a child with special needs, that you are not alone. If you feel any or all of these things that I have described, it’s OK. These are all common thoughts and emotions, and they don’t make you a bad mom or a bad person. I want you to know that it will get easier, but don’t feel like you have to force it. Don’t be afraid to ask for help. Chances are, your friends and family are looking for ways to help you. Look for a good support group in your area or blogs by moms with similar circumstances. You can always e-mail me — I consider it an honor to cry with a mom who is crying and rejoice with a mom who is rejoicing. 

I think you should know that Roo has changed us, but that Down syndrome doesn’t define us. It doesn’t define him. He is a little boy first, and we are a family first. It is definitely something that affects our decisions every day, but it doesn’t hinder our lives—it enriches them. He enriches them. It took me a long time to be able to say this, but I am thankful that God has made Down syndrome a part of our story.

Related topics: Special Needs, Parenting, Katy, Health

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This made me cry, because I feel the way you did before having your sweet baby! We have a 13-month-old who doesn't have special needs but I have always felt guilty of the feelings you described so well: "awkward and a little bit afraid." I don't know if God will give us a child in the future with special needs, but if He does, I am thankful for your honest and candid words.

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Thank you so much for sharing so openly and honestly. I have worked with children with special needs for years, and I know it will be so helpful for many parents to hear your words. Roo looks like a kid who can light up any room!

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Wow! What powerful messages rolled into one beautifully written piece. Thank you!

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