When my youngest son Ronin was born almost three years ago, we were thrilled to be adding a third boy to our crew! Our 20-week ultrasound came back clear and healthy, and due to my age and previous typical pregnancies, the other tests were optional. To my husband and me, the tests were just tests, but our child was our child, so we did not proceed with any additional testing. We were expecting him to be a “healthy” boy and took guesses at which one of his brothers he would look like.
About four hours after Ronin was born, the on-call pediatrician came in and gave him the standard check up. I expected him to tell us he’s good to go; you can go home in three days. But when he stood at the end of my hospital bed he had something to tell us. “I think he might have Down syndrome. I am not 100% sure, but we will send off a blood test and let you know.” I did what came naturally… I SCREAMED in sheer panic. Next came the tears, and then I saw my husband cry for the first time ever. What is going on!!? I didn’t know this could happen.
I wasn’t too unfamiliar with Down syndrome. My cousin, who lives in Vietnam, also has Down syndrome. I knew he looked different but that’s all I knew about it. It took four days to get the final karyotype (an illustration of all his chromosomes- all 47 of them) back. But what were we supposed to do now!? I had this beautiful baby boy to take home and I knew nothing about Down syndrome. We learned at the hospital about the various serious health conditions that an individual with Down syndrome may have and thankfully he was clear of all. That’s one hurdle we passed but I knew there were more to come. My #1 fear was how society would treat him. He is going to be “different” but that is not always welcoming into today’s society. I knew I needed to process and a way to cope with all this new information and our new life.
I dug deep into myself and this is how I coped:
Allowed myself to be emotional
For me, it was a natural reaction. I was mourning the son I thought I was going to have. But then I was also loving the son I was given. I was thankful and happy he was here as many trisomy pregnancies often result in miscarriage. My tears could have definitely filled a river and I wore sunglasses a lot to hide my puffy, weary eyes. Three years later, I still cry and I know I will cry along every step of the journey. Whatever your emotions are, let them happen. They are not wrong and you shouldn’t be ashamed. However, if you are overcome by your emotions and are having difficulties coping, there is no shame in speaking to a professional or your doctor about this. Unexpected news can be difficult to process.
Informing family and friends
Telling family and friends about your child’s diagnosis can be extremely hard and difficult. Please let you and your family process the news before deciding when it’s the right time to share about your child. We chose to tell everyone about Ronin via Caringbridge while still in the hospital. I wanted to inform everyone at once about his diagnosis and not have to have to answer too many questions during this processing time. I took a break from the rest of social media and used this as my outlet. The information was out there and I felt comfortable with the delivery. Friends and family have been very supportive in a respectful way. They do not treat my son as a diagnosis, but as Ronin. There has been minimal negativity and they do not over post about Down syndrome on my social media pages. (Thank you everyone!)
The internet is the ocean of information. You can find almost everything there. Finding credited sources is key. Google can be your enemy and best friend at the same time so be mindful of what you are searching for. Down syndrome happens to be the most common genetic condition so there are many articles and posts out there. We looked up what to expect, what medical specialists he may need to see, his life expectancy (highest it’s ever been!!), and what his life may be like. We found credited sources and made a plan for his care from there. We had the “Help me Grow” program out at our house within a month. He had some specialist appointments lined up, including a geneticist at the Down syndrome clinic. He started physical therapy at four months old. We worked closely with his pediatrician and followed recommendations and called with any questions. He’s currently in speech and occupational therapy twice a week and is thriving. I am so thankful for living in the information age and how it’s readily available. We pretty much have a care plan for the rest of his life and are happy that we have minimal “what ifs.”
With the invention of social media, it’s amazing how you can find connections. I knew Down syndrome was very common but I had no idea the amount of support that would be out there. I joined a bunch of Down syndrome groups on Facebook, joined a few support groups, and put myself out there waiving my “newbie” flag. I had a stranger from Texas send me words of encouragement in a card and a book to my house after I put myself out there and introduced Ronin. It took me a little while to put myself out there but I felt compelled to meet other moms like me in person. I found six other women within three miles of me who all had a child about Ronin’s age also with Down syndrome. Amazing, right?!? In three years I’ve met a hundred families in the area and enjoy seeing their children grow and thrive.
It’s been very beneficial to find people that just “get it,” and I know I will never be alone on our journey. It’s quite comforting and makes the ride just a little bit easier. When you are ready, reach out. I promise it will be so beneficial. Even if your child doesn’t have such a common diagnosis as Down syndrome and specific support may be minimal; find other special needs parents to connect with. In the grand scheme of things, we all want the same for our children and hope for a world of understanding, inclusion and acceptance.
One Day at a Time
That’s the age old advice for most of life’s unexpected twists and turns. It is still hard to not think about the “what ifs” with his diagnosis and try to picture his life. Medical books may give a probable outline of how their life may play out but it’s up to the individual to fill the rest in and give us the illustrations of their story. I looked at Ronin one day and just decided to enjoy him. Enjoy what he was doing instead of being sad about what he wasn’t doing. I decided we can just fill in the pages of our story one day at a time. This is our life, not the world’s life.
I wrote a lot during this time. I took time for myself once in while. We didn’t change our family routines, but just added to them. We have great days, but also very hard days. Some days the diagnosis pierces my heart with a knife but then other days the same diagnosis fills it to the brim with an immeasurable amount of joy and love. We are still taking it one day at a time and it has proven to be sound advice for our family.
Only you can find what works best for you and there is no right or wrong way to cope. I’ve learned so much in our journey so far. While his diagnosis was unexpected, my love for him wasn’t. At the end of the day, the only label I can give him is my son. He may not be the son I expected but he turned out to be son I was meant to have. The unexpected diagnosis has made me the mom, the advocate and the human being I didn’t know I could be. For this I am truly thankful and blessed.