We are so excited to be sharing the story of little peanut Welles and the beautiful dynamic that having a down syndrome baby brings to a family!
Oakley, let’s start off by having you tell us your story about sweet little Welles and a little bit about your family.
It’s a boy! The ultra sound tech declared. We could hardly contain our excitement. Scott and I both have several sisters and expected a family of all daughters. Our first-born is a darling little girl whom we love to pieces. In my second pregnancy, we were simply over the moon to get to experience a boy as well. I imagined little league, teasing his big sister, and watching sports with Dad. After months of staring at my husband’s baby photos, I hoped he would be a toe-head with blue eyes just like his daddy! I already loved the little guy who kicked incessantly inside of me and couldn’t wait to meet him. I found myself on Pinterest several times preparing the perfect nursery for our perfect little boy. Little did I know just how perfect he would be. After a fast (but rough) labor, they laid that sweet little boy in my arms. Scott and I were thrilled to have him with us. I was flustered when they interrupted our beautiful first moments to inform us of the possible diagnosis. They were ruining our precious first meeting with our baby boy, causing unnecessary worry and concern! There was no way our little boy had Down Syndrome. Obviously they were mistaken. They weren’t. The early days were painful as I said Good-bye to the ideas I had for a typical son and Hello to so much unknown. Fear and worry engulfed my entire being. What about his health? What will the future hold for my sweet little boy? How will others handle his differences? We are only a year-and-a-half in, but I can tell you, his doctors are on top of his health (which is very good, btw), his future looks bright and happy, and his “differences” are some of my most favorite things about him. It’s funny that something I would have never wished for or planned on has proved to be one of the most beautiful blessings to our family. Welles is a bright light to every single person he comes in contact with. We get big smiles and sweet looks from strangers, and kids of all ages gravitate towards him. He also brings out the best in each member of our family. Welles radiates happiness, which is something this world could use a lot more of!
As a mother, what was your very first reaction and feelings you had when you found out you were having a baby with Down Syndrome?
If I’m being completely honest, it was painful. It was the strangest mix of emotions. My heart was full of pure and absolute love for the little boy in my arms, but I felt like the child I was “supposed to have” had passed. It felt like the little boy I had imagined and bonded with was taken from me. But at the same time, I had a very different little person who I loved unconditionally. Like I said, a very strange mix of emotions. It’s so hard to put into words. Author Emily Perl Kingsley describes it beautifully in a piece she wrote called, “Welcome to Holland.” She compares having a special needs child to planning a big trip to Italy your entire life. You do everything to prepare for it, study the culture, learn the language, decide all the places you’ll see, etc… Then when you’re finally taking the trip, you get off the plane and you actually ended up in Holland. Holland is beautiful and wonderful, you love Holland instantly, but it’s not the Italy you were expecting. Eventually you realize Holland was the place you were meant to go all along.
I’ve heard from many parents of children with Down Syndrome how it is such a blessing. What blessings do you see in your life from this?
Where to even start on that one! Welles has blessed our whole family in countless ways. The over all spirit and energy he exudes is amazing. He’s almost always happy and pleasant. He has taught me to appreciate the little things, celebrate the simplest of milestones, and to slow down and be patient with life in general. He’s blessed me to have no choice but to sit back and take it all in. Life is beautiful, and we get too busy to stop and remember what’s important. Welles reminds our family daily. How awesome is that?
On the flip side, what challenges do you currently face and what ones do you worry about down the road?
While I would say the wonderful far outweighs the challenges, there are definitely still challenges. With Welles only being one and a half, I haven’t had to face acceptance with peers, dealings in the classroom, or serious learning disabilities. But I’m well aware those things will likely be in my future. Right now our biggest challenges are teaching him to feed himself, regular appointments with specialists to check on his health, and working on those motor and fine motor skills, etc… Right now the real challenge is not eating that scrumptious ball of perfection!
Tell us about your blog and what you are trying to accomplish with it.
My main goal is to show my readers that having a child with Down Syndrome is not going to hold your family back but rather spring your family forward with unity, special adventures, and a happiness that is quite unique and very special. I want the world to know that anyone would be lucky beyond measure to have a child with Down Syndrome. It’s not something to be feared, but celebrated.
What words of wisdom and advice do you have to offer to parents who have children with Down Syndrome or who have maybe found out that their unborn child has it?
It’s okay to mourn. It’s not the child you were expecting. The early days are an overload of information and the unknown is terrifying. But it will all be okay. It will be more than okay, I promise! It will be wonderful. Even with the challenges. Before you know it, there is a new light in your life and it’s a bright, powerful light. A light you won’t know how you ever lived without. I would also recommend reaching out to foundations and support groups when you’re ready. There are so many parents that have been through that same shock and they want to be there for you. Let them in.
What are some of the biggest myths and stigmas out there about Down Syndrome that you would like to comment on and maybe set straight?
Holy moly, there are a lot of myths out there. I had one nurse tell me Welles would be “high functioning” because his Down Syndrome features were less severe! While we do expect him to be “high functioning,” it has nothing to do with the fact that his eyes aren’t super slanted ;). You’ll hear lots of silly things. Generally I’ve found people to be loving and ultra excepting, but once in a while I’ll come across an article or hear of a comment someone makes that is really hurtful. That’s becoming more rare. The biggest myth of all is that they won’t live a full and happy life. That’s absolutely absurd. If you’ve ever met someone with Down Syndrome, it won’t take long before you realize they’re typically the happiest people at the party! The outrageous 92% abortion rate of those pre-diagnosed with a Down Syndrome child wrenches my soul. Those poor parents have no clue what they are missing out on.
If people would like to get more involved in the Down Syndrome community or even volunteer, where do you suggest they go?
Usually there are local groups and foundations that desperately need volunteers. I suggest looking for local Facebook groups and asking how you can get involved. We LOVE United Angels Foundation, they always have volunteers for events!
Lastly, what is one of your favorite quotes and why?
“Beauty isn’t about having a pretty face. It’s about having a pretty mind, a pretty heart and a pretty soul.”