Written by Amanda Murach
When I was first approached about writing this article, I was excited and honored. What mother doesn’t enjoy talking about their kids? I love bragging on them both and sharing funny little anecdotes and things that happened throughout our day. Most evenings that is the majority of the conversation between my husband and I-all of the funny (and not so funny) little things that may have happened throughout the day with our four-year-old and two-year-old. But life with Bennett also has its differences.
Bennett has Down Syndrome – Trisomy 21 which means he has an extra 21st chromosome- and that makes things work a little differently in our household.
At almost 2 1/2, he does not walk, he can’t speak, and potty training is so far off the radar it is almost nonexistent. He is small in stature (he is only wearing 12-18 month clothes right now) but big in heart and his smile lights up a room like nothing I’ve ever experienced. He loves music and will dance to any song that comes on, looks up to his brother like he’s the world’s best person ever, and gives the most amazing hugs. Bennett has his own way of getting around – he has perfected the bear crawl and the booty scoot – and communicates in ways that only we can understand – a few signs, some sounds, showing us things and lots of clapping are the way we get by right now.
Our week revolves a lot around his life – PT, OT, Speech and music therapies, specialist doctor appointments, as well as just what’s going on with him – is he teething? refluxing? another ear infection? having a developmental growth spurt? sleeping well? on schedule? off schedule? and on and on and on. Deciphering what is going with him on a daily basis can sometimes make me feel like a professional detective as much as a mom!
We have faced a lot of the stereotypes already in his short life – the one that gets to me the most is that he is always happy. While his smile truly consumes his whole being and he absolutely knows how to experience joy to the fullest, he also knows the depths of anger, frustration and sadness more so than I knew possible of such a little person. Many times I feel like he knows what he wants but being unable to communicate that with us makes him so angry and frustrated. At two years old he has a lot of opinions – he just can’t tell us quite so easily. Life with Bennett can certainly be challenging- and when we received our prenatal diagnosis we were immediately asked if we would like to terminate- multiple times, by multiple doctors- because most only think about the challenges of raising a special needs child. But there is also so much joy every single day – even on the hard days. We celebrate the smallest of accomplishments by him – and there’s rarely a day that he doesn’t do something we cheer about. While he may not be walking he is working very hard at learning to stand – and watching him thrust his body upward over and over with the biggest smile on his face brings us all so much happiness. Even his four year old brother will yell from another room “Mommy! Bennett’s doing his standing!”
We have learned to find joy in the smallest of achievements and to have more patience than we ever thought possible.
We have discovered that immense strength and perseverance can exist in the smallest of beings and learned not to judge a book by its cover. As a family I like to think we are learning more from him than he is from us. While he is working so hard to catch up, we are learning how to slow down. While we worked and worried and stressed over why he wasn’t sitting up independently at 8, 10, 12 months old and onward, Bennett proved to us at 15 months old that given time he could do it. And it has been like that with everything both big and small. So while he isn’t walking yet, I know that one day he will on his own timeline. My advice to anyone just receiving a diagnosis, either prenatal or birth, is take a breath, have a good cry if you need to, then realize it will all be okay. That in this gift you have been given you will learn to see the world with new eyes, more compassionate, more thankful, more joyful than you ever knew before. You will understand more what it means to not “sweat the small stuff” and will understand more what it means to lean into your faith on a daily basis. Life with Bennett has definitely changed us and at two years old we are just getting started. I look forward to seeing how this continues to remold our family. And we are so thankful to have him in our lives. We named him Bennett because it means “blessed” – and by him we truly are.
Connect with other families like yours!
Social media is a great way to find parenting groups for families with children with Down Syndrome both locally and abroad and they are a great sounding board for any and all things you may be going through with your extra special kiddo. We have found that the Down Syndrome community as a whole is so welcoming and willing to help in any way possible and we have already made some new lifelong friendships through there. If you’re just getting started the Down Syndrome Diagnosis Network is a great resource and organization to help you connect
- Look into services for your child as early as possible. Most states have a government run program to assist (in Georgia it’s called Babies Can’t Wait) and get your child on the list for evaluations for PT, OT and speech. Even infants can benefit from all of these things. There is never shame in taking therapy breaks when your child plateaus for a bit (it’s good to give them time to just grow and be a kid) but at least having them evaluated early so you get them into the system and have that resource to return to as needed
- Ask for help and take it! Parenting is hard, and even harder when raising a child with special needs. Don’t be afraid to ask for help or advice. When it comes to navigating specialists, surgeries, procedures, and therapies ask around within your local (or extended) Down Syndrome community- there will almost always be someone that has experienced what you’re going through and can offer up some advice
- Give yourself (and your child) grace! No one is perfect and sometimes days with your child can be really tough – it’s okay to grieve at times that your child isn’t doing this or that but then think of all the things he or she IS doing – and recognize that given time, it will happen. As a good friend once told me, comparison is the thief of joy and it is not worth losing your daily joy over comparing your child with another. Every child, no matter how many chromosomes they have, will do things in their own time-our special kiddos just have a little longer timeline!