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Special Needs Planning Newsletter: What We Didn't Expect When Expecting

Chambliss Law Firm Monthly Editorial – November 2017
11.13.2017
 
What We Didn't Expect When Expecting

by Amy Boulware, Elder Care Planning Manager, (LAP MSW)
 
I remember the feeling I had in the pit of my stomach 25 years ago as if it was yesterday. Our daughter Amanda had been born three months early, weighing only a little over two pounds. My husband and I were so excited to start our family and did all of the normal prenatal things. We read the book "What to Expect When You're Expecting" cover to cover. We took tours of the birthing centers. We eagerly thought about decorating our nursery.
 

We thought we were ready, but the preparations we made didn't include training for having a two-pound baby with multiple medical complications. There were no classes on visiting a baby in neo-natal intensive care and not being able to hold her. We were completely lost in a world we had no preparation for at all.

I was in one hospital recovering from emergency surgery while our daughter had been whisked away to the children's hospital that was connected by a long hallway. My room was in the maternity ward where all of the other parents were cuddling their babies, and yet I didn't have a baby I could even touch. There was a knock at the door of my room. It was the baby photographer. We have all seen those newborn pictures taken at the hospital. They are not usually the most beautiful pictures you will ever see of your child, but they capture those first days. The opportunity for a photo of Amanda was even more meaningful to me because I still wasn't medically stable enough to go visit her. The photographer introduced himself and asked me if I wanted pictures taken of my newborn. With eager delight in my voice I told him that would be wonderful because I wasn't able to see her yet. (Remember 25 years ago, we didn't have cellphone cameras!) I told him that she was in the neo-natal intensive care unit. He looked at me and said, "We don't take pictures of those babies," and then he walked out of the room without another word.

"Those babies," I thought. I felt like someone had punched me. What a horrible thing to say to me… "those babies"…Amanda was our baby not a "those babies."  This was my first experience with the otherness of being a parent of a child with special needs. I was different than all the other moms on the maternity ward. I had people telling me they were sorry about Amanda's birth rather than telling us congratulations. We weren't even allowed to be happy about her birth because nobody wanted us to get our hopes up in case she didn't live. We left the hospital without a baby and didn't know if we would ever bring one home. I wish there had been a navigator who could have helped us through those first days that turned into years and guided us on everything from managing medical bills, dealing with the insurance company, to accessing early intervention programs.

Unfortunately, at that time, each step we made seemed like we were on our own in uncharted territory. It felt like there was a foreign language being spoken around us, and we certainly didn't have google translator. There were no "What to Expect" books about this scenario. Whether someone is born with a disability or acquires one later, the feeling of not being prepared is probably the same. These are some of the things I wish someone had said to me:

  1. Take one day at a time and enjoy the small triumphs because those make you able to weather the difficult times.

  2. Don't keep your worries to yourself.  Find someone who can guide you through the maze of questions. This may be multiple people at different times of the journey.

  3. Give yourself permission to make mistakes and not feel like you should know how to do this. There is always a learning curve for new things. Why should learning about caring for someone with a disability be any different?

  4. Being a mom is hard, fun, exhausting, invigorating, scary, exciting, and every other emotion you can imagine. Embrace each one and be ok with it. Every parent feels this way, not just if you have a child with a disability.

If you or someone you know needs help navigating the world of disabilities, the Chambliss Special Needs team is here to help.


Photo: Amanda Boulware, age 25, exploring abroad