A couple of months ago, we had an amazing opportunity land in our inbox. We had no idea how photographing these four kiddos and getting to meet their parents would impact us … but boy, did it ever. I’m so happy that Jennifer, one of the moms, asked if she could guest post on our blog on World Down Syndrome Day to continue the mission of raising awareness and to share their story. We love sharing stories.
I’ve started writing this in my heart so many times. Thanks to Caleb and Maison, I have finally found an opportunity to put it down in black and white. I love the way they write about love and marriage so beautifully and in a way that is so relatable. I asked them if I could write a guest post today after meeting them on a chilly November afternoon last year. The photographs they captured that day will be featured in a gallery show tonight, on World Down Syndrome Day (WDSD), to celebrate individuals with Down Syndrome in our community. To me, WDSD is a day to celebrate individuals with Down Syndrome and the contributions they make to the world around them. I would like to share a little bit about what Down Syndrome means to me as a mother.
Life is made up of a beautiful collection of momentous days and everything that happens in between. One particularly momentous day for us was the day that we were told that our baby would be born with Down Syndrome. We were caught up in a flurry of emotions on that day and for many more after that. What would our life look like? At the time, it didn’t seem like it fit in to the plan that we had for ourselves. We knew very little about what Down Syndrome was and what it would mean for our family.
For those of you who may not be familiar with Down Syndrome, the quick version is a genetic difference that occurs at the level of our chromosomes (you can check out more information here). Individuals with Down Syndrome have three copies of the 21st chromosome (hence WDSD on March 21st). It contributes to some traits and characteristics that have commonalities among individuals with Down Syndrome, however, the extra chromosome is just part of the equation in the myriad of ways that we are all similar and different from each other. It is important to remember that individuals with Down Syndrome are each unique, just like all humans are unique. We all have different personalities and different interests. Different skills and different ways that we relate to the world around us.
Our son is now 4 years old. He loves to listen to stories and absolutely has his favorites. He LOVES to dance. He has some pretty incredible dance moves and can get just about anyone grooving right alongside of him (the photographs taken by Maison had a soundtrack of “Shut Up and Dance” playing in the background!). He is incredibly charming and has a smile that can light up a room — seriously, I have never seen anyone make people smile the way that he does. He certainly knows how to push his limits and press his sisters buttons, like most 4 year old boys do : ) He can be pretty stubborn and determined, but I have no idea where he could possibly have gotten that from (if you asked my husband, I’m sure he could tell you, so let’s not do that). He truly has his own personality and enriches our lives more than we could ever possibly say.
As parents, we have high hopes for our children. We hope that they will find joy in what they find meaningful, that they find true love, and that they can experience the beauty that is present in this world. Those dreams are no different for our son with Down Syndrome as they are for his two sisters. This whole parenting gig is certainly not easy, but find me a parent who thinks it is. I certainly haven’t found one yet. My husband and I experience different challenges than other parents, sure. We know that there will be triumphs and hard times along the way. That’s kind of universal though, isn’t it? We never truly know what the future holds. We just do the best that we can every day to prepare for what we think is coming and hope that we are making the right decisions. Regardless of what mistakes my husband and I make along the way, I can certainly tell you that we are incredibly proud of all three of our kids. We could not be happier to be their parents and thank God every day for the beautiful life we share.
Love is a truly remarkable thing. I have been blessed to find and learn about true love in so many ways. My husband — who is my rock, my support, and my safe place to land. My eldest daughter — who taught me how nothing in life compares to the way that you will love your children. My son — who taught me to look outside myself and to enjoy the journey because every one of us is on our own path. My baby girl — who is teaching me to live in the moment because time is precious and fleeting.
As a mother of a child with a disability, I know my story is not my son’s. I do not speak for my son, for other people with disabilities, or even for other parents. My experience is my own. I strongly encourage you to spend time getting to know people who are different than you. You will enrich each other. I have been truly honored to meet so many people around the world that I never would have had it not been for my son. I feel truly blessed to share this journey with them. I am a different person today than I was 5 years ago. Looking back, I never could have imagined what life would look like now. The challenges, the rewards, the love, and the inspiration that I find in every day.
Thank you for taking the time to read this : ) Here are a few links if you are interested in learning more:
- Madison Area Down Syndrome Society (MADSS) — our local organization
- Down Syndrome Diagnosis Network — an organization that is near and dear to my heart that offers support for new families
- Gigi’s Playhouse-Madison — a great local resource
- Preferred Language Guide — because words matter
- Spread the word, to end the word — they matter a lot