The thing about the thread that binds parents of children with Down syndrome is that, like all thread, it can sometimes seem invisible. There are moments in time when parenting our children can sometimes feel lonely. This doesn’t mean that we don’t have amazing support systems from our family and friends but there are days when you just want to look around and see the face of someone else who truly understands. These are the times when we need the thread to shine brightly, to remind us that we’re not alone.
There is an amazing mamma, Jamie Freeman, from Dearborn Michigan, who saw that need and decided to do something about it. She wanted something tangible, something that you could physically hold close to you, to act as a reminder that we’re all connected through our similarities, regardless of where we are in the world or what our journey’s have been. From that, The Down Syndrome Diary began. A book, a handwritten journal, that passes between families all over the world and gives them a place to tell their story; a book that will hopefully be published and can act as the thread for other parents when they need to know that they’re not alone, that despite time and distance and family make-up, we are “more alike than different”.
Jamie is, more importantly, the mamma to the ridiculously adorable Benny (try not to fall in love with his gorgeous blonde locks!). While they had a pre-natal diagnosis of Down Syndrome, no one can really be prepared for the onslaught of “help” that our children are bombarded with right from the start. I remember feeling incredibly overwhelmed talking to Lily’s foster mother and getting the list of therapists and supports that were now part of our daily life – it just seemed like so many people that we now had to juggle on top of just bonding with our sweetest family member. Jamie has been kind enough to share how, in the end nothing takes the place of a mamma.
I Just Wanna Be His Mama
I had the pleasure of speaking in front of a group of occupational therapy grad students a few weeks ago at my Alma Mater, Eastern Michigan University. During my presentation, I had a story that really resonated with them.Benjamin was born in August of 2013. We knew he would be born with Down syndrome, and his arrival into this world was nothing short of beautiful. I had already made my peace with that extraordinary extra 21st chromosome by this point. I had already processed, grieved the loss of the “typical” baby I thought I was going to have, and found myself excited and prepared to be Benny’s Mama. Did you laugh? You should have because seriously how is ANYONE ever prepared for their first baby???Within weeks of bringing him home from the hospital, I started getting visits from our early intervention team and we started being assigned therapists. I was ready for this. I had appointments tentatively set up even before Benjamin was born, so I felt as though I was on my game!Benjamin was the sweetest baby anyone could ask for. He was chubby, healthy, and NEVER cried. All he wanted to do was eat and cuddle, and I was on board! As the therapists started coming, we started getting these lists. Lists of things I needed to do x times per day to help with Benny’s speech, his hypotonia, his nursing, his fine and gross motor skills, etc etc…. By the time Ben was two months old, I had about fifty different items on a daily checklist that I was supposed to be doing with him every day.As a new mom, and a new mom to a child with Down syndrome, I was determined that I had no choice but to ensure each and every one of those items needed to be done daily. I tried, and tried, and tried, and constantly came up short. I could NEVER finish everything they wanted me to do, and I found myself stressed out feeling that I was failing him. I was feeling like he wasn’t going to hit his milestones, and it was going to be all my fault. The worst part of all this, is that I had this longing to just BE with him. I wanted to just relax, and hold him. I wanted to hear him coo as I tickled his little face, and hold him for hours while he slept and nursed. I was failing as his therapist, and all I wanted to do was to JUST BE HIS MAMA.One day, talking to Benny’s teacher, I finally had my first meltdown. I told her exactly how overwhelmed I was feeling, and she understood. She didn’t tell me I was a failure, she told me I was doing great. However, what she told me next was what finally changed my approach. “He needs the affection, the cuddling, the love to develop as much as he needs the baby sit-ups and the transitions! He has us, but he NEEDS his Mama too!”Ever since that day, I no longer pass up opportunities to cuddle in lieu of exercises. I do as much as I can, because it’s important, but I never sacrifice our time together. Therapy is vital for our children, but what a Mama brings to the table is just as, if not more, important. We teach them love. After all, a wise man did once say that “all you need is love”, and the love between a Mama and her baby is the best therapy of all.
