Five years ago to the day, our ultrasound tech called a doctor into the room. That doctor said a jumble of words to us that included “I’m sorry”, “spina bifida” and “sending you to an MFM”. In the time it took to utter those words, we became the parents of a child with a disability.
Motherhood as I knew it changed before I ever even had the chance to hold our baby boy in my arms. But today I don’t want to dwell on that diagnosis. Instead, I want to share with you what I wish I had known would follow that devastating blow.
To the scared mom sitting in that office five years ago (and to any mother who may be in her shoes today), I want you to know:
There are options when it comes to care for your child. We elected to have prenatal surgery at The Children’s Hospital of Philadelphia. Other families in our area who received the same diagnosis chose to deliver in Pittsburgh and immediately transfer their children’s care to The Children’s Hospital of Pittsburgh. Each of our kids is thriving in his or her own right. Please know that all of the time spent researching and talking to hospitals and insurance companies will pay off. Nothing is more fulfilling than fighting for and making the right choice for your child.
Know that there will be days when you feel as though you’ve reached the end of your rope. Sayings like, “God never gives you more than you can handle” will be thrown at you left and right. You must learn to smile, nod, and keep your head held high. Knowing all the while that you are, in fact, frequently given more than you can handle. You must also know that you will always learn to adapt to what’s thrown your way, and you will continually come out stronger on the other side of each battle. You have more strength inside of you than you ever thought possible.
Your child’s abilities will FAR outweigh his disabilities. He will be a typical kid who just so happens to have a diagnosis. There will be moments and sometimes even days when you completely forget about his disability. Your boy will be far too entertaining for you to dwell on diagnosis alone. He will be funny and smart. He will charm most everyone he meets. His joy will be infectious, and his smile will light up a room. He will be a happy, happy boy.
That boy will love you beyond compare. He will tell you you are beautiful even when your eye makeup is smudged and you’re rocking a messy bun. He will ask you on ice cream dates and offer to pay with the change from his piggy bank. That little boy will become your whole heart.
Best of all, he will shatter glass ceilings by doing things that many never thought possible. He will continually tell you that his life is wonderful. You will find yourself crying just as many tears of joy as you do tears of sadness. That boy is truly going to be perfect just as he is. The fear and pain you feel today will soon melt away.
And that, sweet mama whose heart just broke in the exam room… that is why you should not worry about what your child’s future holds. Someday you will look back and realize that today is actually not the worst day of your life. It is the beginning of a beautiful, albeit sometimes stressful journey with the world’s coolest tour guide.
