When you receive a life changing diagnosis for your child, it rocks you. When you receive a diagnosis of Down Syndrome, it is scary not knowing what the future holds, but knowing that what you understand as normal is no longer possible. This is the reality with a diagnosis like this.
With Down Syndrome, the first year is full of doctor appointments, from your pediatrician, cardiology, urology, neurology, orthopedics, endocrinology, even oncology; these little children have so many doctors for what they are susceptible to throughout their lives. Add to that learning how to navigate meeting the needs of your special child, it is easy to get overwhelmed just getting through life.
Hospitals Were A Second Home
For us, our little guy was in the hospital four times in the first year, and that doesn’t include emergency room or urgent care visits. This is actually not very much compared to other children, who may have multiple open-heart surgeries in the first few months.
The point is it can seem like the hospital is a second home. Even without major medical complications, children with Down Syndrome are more susceptible to things like pneumonia. Our little guy had hospital admissions for pneumonia twice over this first year.
With all of this, it can be difficult to remember that children are something you can and should enjoy.
Find Joy Wherever You Can
With all the changes and instability that can come in the first year of having a child with Down Syndrome, it is important to find joy wherever you can, and it really isn’t that hard if you are open to it. For instance, here is some of where we found joy in our journey this year:
- Watching our boys interact with each other. We have two other boys who do not rock an extra chromosome, and they love their little brother dearly. He lights up every time either of his older brothers come into the room, play with him, or give him some love.
- Enjoying his smile. Our little guy loves to smile, and in our experience, most babies do. Don’t get me wrong, despite the common perception of “people with Down Syndrome are always happy,” he does cry, and he does get upset at some things, more on this in another post. However, our little guy is happy, and his smile is contagious, usually making everyone around him smile too.
- Talking with him. Our little guy has been babbling since he was about 3 months old, and it is so much fun to talk with him. He may not have many words yet, but he does vocalize, and he does interact as we talk with him. It brings us a lot of joy to have this interaction with him.
- Watching him discover. Like any other child, he is curious, and he discovers things. Whether it’s a new toy, or simply his feet or hands, it amazes me watching a little one in awe of what they are learning for the first time.
- The snuggles. Whether it’s just feeding him, nap time, or getting ready for bed, there is nothing better than getting to snuggle your baby.
- The good news reports. Rather than focusing on what is wrong, or what else may come, we take joy in the good news reports from the team of professionals that work with us to meet his needs. This could be a good report from a therapist on how he’s developing, or a good report from a physician regarding a problem we’re working to tackle, celebrate the good news whenever you can.
As you can see, there are many areas that you can choose to take joy. Sometimes it is simply a matter of remembering that we it is a choice and you can step back and take joy in the present, even with an uncertain future.
What are some of the ways you take joy in your kids, whether or not they sport an extra chromosome? Share some of your story in the comments below.
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