A mom just gave birth to her fourth baby. She sits on the hospital bed clutching her husband's hands as she struggles to take a breath. The air has literally been squeezed out of her. The doctor delivered not only the baby, but the words that would change their lives from that moment on...
"It looks like your baby has Down syndrome."
The doctor leaves quietly. The mom wails in agony over the words that cannot be taken back. It's too late. Never can she go back to the moment before when her baby "was perfect." Her mind races to the future and tries to picture herself and her child as an adult. Painful, preconceived notions permeate her thoughts... Will she be 80 years old and still have an adult "child" living at home? Will she and her husband never have those "golden years" together to travel and live life as they please, knowing they've raised wonderful, responsible children who are contributing to society and making a difference in the world? Will she become are part of "that" family that everyone talks about behind her back? Will her friends be embarrassed to be around her? Will her child ever be invited to birthday parties? The questions are screaming through her mind, through her soul, seeking solace from someone, anyone.
The future is too hard to predict. Too painful to project onto her newborn. She snaps back to this moment...
Her baby has been taken to the NICU. All she wants to do is hold him, but the tubes and wires attached to him make it impossible for the first few days. All she wants to do is to whisper through her soft tears that trickle down his precious cheeks that she is sorry. She is so sorry. What had she done that "made him that way?" She asks herself, could the doctors be wrong? What do they see that she doesn't see? How can they tell? He looks perfect to her, other than his purplish coloring and flaccid body. He looks perfect. He is perfect! Did they see all that hair? Did they hear him scream? Did they count all his fingers and toes and see that round belly? What's wrong with the doctors? Clearly, there's a huge mistake and they will tell her that it's all a mistake.
That message never comes. No one tells her it's a mistake.
Slowly, the fog lifts and it's morning. She makes her way to the NICU to bring her own milk to her precious baby. The pain is still there, but it's a new day. The nurses are friendly. The sun is bright outside. The mom and dad realize that their baby is the most important thing in the entire world and he is just as he was intended to be. He is perfect. They didn't do anything to cause him to have Down syndrome. In time, they will learn everything there is to know about Down syndrome; but for now, he is a perfect baby that needs their love, nourishment and to be cared for as any of their other babies. They will take it all one day at a time... learning as they go.
(John Michael turns 1 and tastes his first cake)
(Fab Four -- Sheridan, Gabby, JM & Joaquin,
This was me, just a little over 3 years ago.
John Michael's birth rocked our world in more ways than one. That extra chromosome caused many tears in the early days and weeks as we tried to understand the diagnosis. Every doctor appointment had me worried that we would hear some terrible news or some health issue that would take us by surprise. But as the weeks turned into months, we learned to navigate the new path we were on and we found that the Down syndrome part became less and less important. John Michael was just a baby and would be raised just like our other kids with the exception of some early intervention therapies where needed.
Fast forward to today --
(John Michael and Joaquin rocking out at Sofia's 2nd Birthday Tea Party)
If you read our blog regularly, you know what a ROCKstar John Michael is in our family. That boy has more friends at his age than my other kids combined. And he just got *another* birthday invitation in the mail today... we can hardly keep up. His teacher loves having him in the classroom and his classmates always shout, "Bye, John Michael" as he leaves. Older kids at my other kids' school make way to give him high fives, while their moms ask to "steal him away" at church or school functions. His social calendar can be hard to keep up with. I feel like I'm his "road manager" sometimes, making sure he looks his best and gets to where he needs to go :-) Someone needs to tell that new mom that it's going to be OK. Life will be great! You will be "that" family, but it won't be bad and your child will amaze you every step of the way. As a matter of fact, some of my closest and best friends are those moms who are blessed with a child with Ds.
(Having tea at Sofia's party last week)
Last week, an acquaintance of mine had her third baby and guess what? He has Down syndrome. I want so much to protect her from all the sad/negative feelings and emotions and help her get to "that happy place". I want to tell her how great her child will be and how she will be amazed and deeply in love and her son will do things like "typical" kids and... But, then I'm reminded that not everyone has the same preconceived ideas about Ds like I did. One of my new mom friends thoroughly embraced her baby's diagnosis in utero while another blogging friend struggled for 2 years before coming to terms with Ds. Whatever the healing process, I know that it's my calling to be there for new moms... to listen, to help them in whatever capacity they need, wherever they are... and to watch them get to the place where they know their baby is perfect, just the way they are. I can't wait!
I've been married for 20 years to my wonderful husband, Doug. I'm a Catholic SAHM to 5 children. Our 4th child, John Michael, was born in November 2007, and has opened us up to the amazing world of Down syndrome. We are grateful to God for the blessings He's given us and the journey He's put us on. When I'm not spending time with my family, I sing with RSVP, an amazing vocal group, educate on Down syndrome, have my own health and wellness business, and blog about our life.