Amy Beth

March 20, 2018

Future thinking on World Down Syndrome Day

One of the first things you have to come to grips with when you get a diagnosis of Down syndrome for your baby is your vision of the future. Most of us, whether consciously or not, imagine our children’s lives to follow a predictable arc. They have a lovely childhood, make great friends, make good grades, graduate from high school, then college, then find someone to marry, get a meaningful and lucrative job and have adorable children. Obviously, as a parent, your dream for them includes lots of success and very little hardship and failure.

In reality, none of us can predict the future for our children, intellectual disability or not. We can’t guarantee that they will be successful. If you’re really being honest with yourself, you probably have to acknowledge that your child will experience failure. That they will be lonely. That they will feel lost at times and wonder what the point of it all is. There will be many things that they will not be good at. All of these things are a very normal part of life. But when you’re holding that perfect little newborn, with all the possibilities and none of the limitations yet, you can imagine all the best. Over time, as your child grows and you come to know their strengths and weaknesses, you may edit your expectations. Your wildly creative and spontaneous little girl may not make the best lawyer. Your cautious and meticulous boy may not be cut out for high school sports. But that’s ok. You know their thing now and you can guide and support them in art classes or chess club. The loss of the “perfect” future is replaced by a more realistic and well-rounded vision.

When you’re given a diagnosis of Down syndrome (or I would imagine, many other conditions that fall under the category of “special needs”) that shift happens a lot faster. It can be rather jarring. As parents we are suddenly faced with all of the limitations at once, usually in the form of a very official looking medical fact sheet. But our baby is just a baby. We don’t know who they will become or what passions they will discover. We aren’t given a whole lot of information for the “pro” column of their imagined future. But we keep looking with faith and hope. Faith that every life is created for a reason and that our child will one day find their passion, purpose, and gift to give to the world. And hope that when they do, the world will be ready to receive it.

There’s a reason inclusion is the battle cry of anyone who works with special needs populations. I’m not sure that it’s so much to prepare the people with special needs for the real world, but to make sure the real world is a place that can be accepting and accommodating of the unique way they will interact with the world. Inclusion is needed not only for those being included, but for those of us doing the including. So when we are given the opportunity to be in a class or a work environment with a person with special needs, we know how to handle ourselves and interact in a way that doesn’t hinder anyone’s pathway to success. It would be a shame to miss out on all that people with special needs have to offer just because we don’t know how to receive it.

So much work is being done right now in the name of inclusion, from organized crusades to trailblazing individuals who show the rest of us everyday just what people are capable of. These people are paving the way for more opportunities and more acceptance of my daughter when she is gown up and ready to make her mark on the world. Here are a just a few places where I have found encouragement and examples to add to the pro column of my daughter’s future.

Ruby’s Rainbow – This organization provides college scholarships for students with Down syndrome. There are colleges across the country who are developing programs for these students to experience college life and all the education and independence that comes with it. Their biggest fund raising drive of the year is happening now if you feel inclined to support them financially.

Down Syndrome Association of Central Kentucky – Our local organization dedicated to supporting individuals with Down syndrome has a lot going on. I’ve been especially impressed with the stories I’ve heard from their “We Work!” program dedicated to training high schoolers for employment. Their recent class of graduates all have interesting and meaningful jobs or internships.

Brandon Lack Studio – I stumbled across this artist on Instagram one day and find him to be a inspiring example of the variety of gifts present in people with Down syndrome, just like in the rest of us. His art is lovely in and of itself.

Enjoying the Small Things blog by Kelle Hampton – A friend sent me a link to this blog when Poppy was first born, and I’ve been following along ever since. Down syndrome isn’t the only topic she writes about, but if you’re curious to get a peek into the life of a typical family who has a child with Down syndrome, this blog gives a pretty accurate picture. Hint: it’s mostly like every other family. 🙂

Happy World Down Syndrome Day!

March 21, 2016

World Down Syndrome Day

Just popping in to wish you a happy World Down Syndrome Day!

There are so many things I could say to celebrate this day, but in the end it comes down to this: a little more than a year after learning that our little girl has Down syndrome, we wouldn’t have it any other way. Like every other one year old, she lives a life full of love and joy and playfulness. She learns and grows day by day. I have so much hope for her future.

To celebrate this day and to provide for her future and the future of many others, we have decided to take the 3/21 pledge and donate to Ruby’s Rainbow, an organization that provides college scholarships to students with Down syndrome. A mere 20 years ago the thought of a young adult with Down syndrome attending college would have seemed impossible, but today it is happening. And it can happen even more with your help. If programs like this continue to grow, I can only imagine the opportunities that will be available to my daughter 20 years from now! To learn more about the difference this program is making in the lives of students, I strongly encourage you to go read this blog post following some Ruby’s Rainbow scholarship recipients around for a day. Then hop on over to Ruby’s Rainbow and make your donation. Thanks for making the world a more inclusive, hopeful place.

September 15, 2015

So, my baby has Down Syndrome

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My baby came into the world as most do. Amid anticipation and pain, a flurry of excitement, exhaustion, relief, happiness, smiles, cuddles and kisses. I like to think that I am capable of being objective and realistic when it comes to my children, so I don’t mean to offend anyone else when I say that I’m pretty sure she was the most beautiful baby I’d ever seen. Our time in the hospital was fairly lovely, as far as hospital visits go. She caught on to nursing quickly and stayed peaceful and content. I loved to just sit and stare at her cute little face. I made note of a tiny pinprick of a dent next to her ear just in case the hospital’s obsessive identification band checking should fail us and they hand me the wrong baby. Not that we were separated that often. Aside from the morning doctor’s visit in the nursery and a few extra visits to the warmer because she had a bit of trouble keeping her temperature up, little Penelope stayed by my side.

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Chris and I woke up on the last morning in the hospital ready to get home and settle into our life as a family of four. Determined to be home for lunch, we packed up bags and filled out paperwork at a level of efficiency that we haven’t been able to match since. As we were finishing up breakfast the doctor came by to give us a report of his morning checkup. It was then that we heard the news. The doctor had observed several physical characteristics that indicated that our baby could have Down Syndrome. He rattled off a list of indicators. Chris and I asked a few questions I think. We were told that we could get the blood test at her first checkup the next day and would hopefully have an official diagnosis within a week. He was positive and kind and promised to follow up with us. We thanked him and were left to absorb the news over what was left of our dry toast and eggs.

It’s taken me eight months to write this post. I’m not sure why, exactly. I think I just wanted to make sure I gave an accurate and true representation of what this diagnosis means to us. I also want to make sure that it’s a source of encouragement and hope to anyone who may come across it who is faced with a similar situation. A source of encouragement and hope without discounting the wide range of emotions a parent might feel when they find out their child has Down syndrome. I’ve read many posts like this one. The parents in these posts have felt many things: disbelief, shock, anger, fear, bitterness, guilt, grief. But in the end there’s always acceptance, gratitude, resolve, and of course, love.

That’s not exactly my story though. My process of wading through these emotions has felt much gentler than anything else I’ve read. It’s been surrounded by an overall feeling of peace. Maybe it’s my personality. More than likely it’s my God.

Once the doctor left I think I cried a bit. But then Penelope came back from the nursery and it was time for me to be a mama and get her dressed for the trip home. Chris and I didn’t really talk about it again until we were safely in the car. Then I think I cried some more. About what, I’m not sure. Some of it was fear of the unknown. Much of it was adjusting to a new vision for my daughter’s future than the one I had previously had. I think most of all I worried that her life was going to be so much more difficult than what I wanted for her.

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And Chris, who I’m sure was feeling much of these same things but didn’t have the postpartum hormones to deal with and also had to keep his eyes dry so he could drive, said the most steadying thing. He said, “She’s still the same baby. We may have some new information about her, but she hasn’t changed.”

Maybe this subtle shift in perception doesn’t feel as profound to you. But to me, that was just what I need to hear right then.

My mom and sister were at home with Charlie waiting for us. I had dried my tears by then and turned my focus to settling in and helping Charlie adjust to a new sister in the family. Chris got the task of breaking the news to my mom and sister because, as stated above, he didn’t have postpartum hormones. It’s times like these that I’m thankful to have an introverted family. Big news is generally received politely and without a lot of comment. And since no one says much until all the thoughts and emotions have had time to settle down and organize themselves inside the thinker’s head, there is much less chance of anyone saying anything stupid or upsetting. So we told them and they said “Oh. Ok.” and we moved on.

Later that day we sent out an email to a few close friends asking for prayer. We still weren’t sure what to do with this information and were just trying not to freak out. She may not have it after all, we kept telling ourselves. But I think those prayers are what made all the difference. I’d heard before of the “peace that passes understanding” but had never really thought about what those words meant. But as we moved through the next couple of days and weeks, that’s what I experienced. Even though there were lots of reasons to be stressed or to worry or to feel emotionally distraught, I didn’t. I still had my moments where I mourned for the vision of the future I had had for her. But they were brief and cathartic and left me feeling more accepting of the future that God obviously had for her. When people would ask how we were doing I could honestly say that we were doing well.

In the week or so between hearing from the doctor that he thought she might have Down syndrome and getting the results of the genetic test back, I spent a lot of time staring at my baby, trying to decide if I thought it was true or not. The doctor sounded so certain. But every time I looked at her I would just think, I don’t see it. I don’t see anything wrong with her.

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And God must have been there with me because he spoke to me. He said something that I think I will remember and carry with me for the rest of my life.

He said — It’s a doctor’s job to see the things that might be wrong. But you are not her doctor. You’re her mother. It’s your job to see her.

Since then I’ve realized that that is probably the most important thing I can give her. That I can give all my children. The world may look at her as if something is wrong with her. That she’s at a disadvantage. That she is someone to feel sorry for. But I have determined that I will not see her the way the world sees her. I will see her for who she really is. For who God made her to be. I will see all the wonderful, unique, made-that-way-on-purpose qualities that God has given her and celebrate those things. I’m her mother. That’s my job.

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Now at eight months out, Down syndrome often doesn’t feel like a big deal. We’ve been blessed with a very healthy child. None of the extra test or checkups have revealed any health problems to be concerned with. Her development is lagging somewhat behind other children her age, but she’s making steady progress and we have weekly therapy appointments to help build up those muscles. She’s a girl who lets people know what she wants and seems to have a fairly determined personality, so I don’t think she’s going to let too much get in her way in life. She loves her family and has the best smile. She and Charlie are best friends, a fact that routinely makes my heart melt.

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Some might think that it would be reasonable to wish she didn’t have Down syndrome. But that wouldn’t be true. That would be like wishing I had a different child.

It’s not like God made this amazing person and then slapped on a disability. He just made an amazing person who, just like my brown hair and short stature, Down syndrome is just a part of the equation. It is literally at the very core of who she is. It is within every cell in her body. Before she was even conceived, there was an extra chromosome, hanging out, waiting to become a part of our little girl.