Yesterday was World Down Syndrome Day (WDSD), a day globally recognized to raise awareness and celebrate individuals with Down syndrome. March 21st was chosen as the date to celebrate WDSD to represent the three copies of the 21st chromosome. This is a new holiday on our calendar. Two years ago, if you would have asked me why March 21st was a special day, I would have (jokingly) told you that it was special because it was an extension of my birthday the day before. As I sit here today, 3/21 carries such a deeper meaning for our family.
Last year on World Down Syndrome Day Harrison was only 9 weeks old, and he weighed 8 pounds.
He was still so tiny and fragile. We had been in the hospital for 63 long days, and it seemed like no end was in sight. Once again, he was starting to take 75% of his feeds by mouth, but we had been there before, so I did not believe that trend would continue. Although I had purposed in my mind to fight against a G-button, I was almost certain that would soon be on the list of things to happen before we could even think about going home. Cardiology had rounded that morning, and still had no answers. Just three weeks before, we were waiting on a surgery date, then we were off the surgery list, and I felt like we were sitting in limbo going nowhere fast. We had an echo scheduled for the next day, but I was not optimistic.
I have vivid memories of sitting in room 17 of NICU Unit A on our first World Down Syndrome Day feeling lost and hopeless. That morning I cried out to God for something – a glimmer of hope. I was tired of feeling alone. God answered big. As the day went on, my feeds were flooded with pictures of our friends and family rockin’ their crazy or mismatched socks. I sat there all day completely blown away by the amount of love and support we received. It was a huge answer to prayer. The next day, we pulled Harrison’s NG tube and had a very positive echo. He continued to thrive on oral feeds, and just one week later were on our way home with a tiny 10 week old baby.
As I sit here today, I cannot imagine life without Harrison. Although we weren’t expecting that extra chromosome the day he was born, we have learned so much about ourselves, about love, about acceptance and equality, about the world, and about what is really important in life. I pray that we all can continue to celebrate these amazing individuals and their contributions to society: not just once a year on World Down Syndrome Day but every day.
In that spirit, I would like to share with you some things that I have learned from Harrison:
5 THINGS I HAVE LEARNED FROM HAVING A CHILD WHO IS ‘DIFFERENT’
ALL PEOPLE MATTER
People are people. For some reason, society has decided that we can treat people differently based on their abilities, but let me tell you something…regardless of what label you want to slap on someone, they still have feelings. They can tell when you are being sincere vs when you are just doing a service. No one wants to be that ‘token friend’ or the mascot for your particular social circle because letting them tag along will get you the extra attention you want. Be genuine. Get to know people who are different than you. Differences can be scary, but I want to challenge you to put differences aside and see people. People matter. Every single person has something beautiful to contribute to this world.
DIFFERENCES MAKE THE WORLD A BETTER PLACE
There are people who see people with disabilities as a drain on social and economic resources, but because of our broadened circle I am now more convinced that people who we tend to label as ‘different’ or ‘less’ are actually making society more diverse, compassionate, and emotionally mature. A world in which we were all the same would be incredibly boring. When you take the time to get to know people who are different than you, I can guarantee that you will quickly realize that you have more in common than you thought. Your eyes will be opened to a different perspective, and differences will quickly become less scary.
HARRISON IS JUST A KID
Plain and simple. I remember being so afraid this time last year, wondering how we were going to be able to care for a child with different needs. I could just sit and laugh at myself now, because Harrison is a very ‘normal’ one year old (if that’s even a thing…I’m confident there is no ‘normal’ one year old). He eats, sleeps, and messes diapers just like anyone else. He loves to play, and will talk your ear off – especially if you talk back. He lets you know when he is mad or tired, and he will look at you straight-faced and continue to pull every single DVD off of the shelf even though you just scolded him for doing it thirty seconds before.
LIFE, NOT DOWN SYNDROME, IS HARD
Regardless of who you are, where you live, or your socioeconomic status – life is hard. The unexpected will happen. Period. All of my kids have thrown me plenty of curve balls. No one is entitled to a life free of challenges, so clinging to this dream of your perfect world will do nothing other than set you up for extreme disappointment. I have vivid memories of sitting in the NICU wondering why this happened to us, throwing myself a pity party because this wasn’t the life I had planned for myself…if I could go back to those moments, I would tell myself to just sit back and let God work. Turns out that a lot of the harder moments we have had in this past year have had little or nothing to do with Down syndrome. If anything, Down syndrome has been the blessing in disguise that has kept us afloat when I was sure we were sinking.
WE ARE NOT IN CONTROL
We had so many plans, so many visions of what our life would look like in 5, 10, 20, 50 years. Careers, kids, college funds, grand kids, retirement funds, the whole shebang. In one moment, gazing into Harrison’s almond-shaped eyes, most of those plans evaporated or changed drastically, and can I tell you something? I wouldn’t have it any other way. God has reminded us over and over again that he is in control of our lives, and that the story he’s writing is so much more beautiful than anything we could dream up on our own. As difficult as it is sometimes, I’m learning not to worry about what the future looks like. Life will be what it is. I am just doing the best with what I have in the moment, and trying to sit back and enjoy the ride.