Actions Replace Words

Has your life been profoundly touched through a dramatic personal experience of someone you know or love having a disability? Here are a few examples of those who knew words were not enough.

What do you say when a baby has been diagnosed with a disability?

Before Rachal began experiencing her seizures I knew no one with a child that had been diagnosed with a mild or profound disability. When the neurologist from Johns Hopkins University Hospital looked me in the eyes and told me my daughter would be mentally disabled for the rest of her life - because of this devastating brain disease called Infantile Spasms I felt as if I was completely alone in the world. Thoughts of despair ran through my mind. What would become of her? How would I be able to live with her everyday? I was just getting used to being a Mother, the thought of becoming a care giver to a special needs baby was not what I volunteered for. I remember my best friend Denese coming over during a really rough period one day and just held me and together we cried. She did not need to use words. Her touch was powerful enough.

How should you react when you learn someone’s baby is having seizures?

Rachal’s first seizure that I witnessed lasted 30 seconds. I say it this way because she was six weeks old at the time and I do not know when they began I only know when I began noticing them. She was lying between my husband and me on our bed. We were watching JFK. Isn’t it odd how we remember the tiniest details when something devastating happens around us? I remember what I was wearing. What time it was and the exact point in the movie when her tiny body began jumping up off the bed.

It was late and we decided to just pretend it did not happen. We literally closed our eyes that night both lost in our thoughts. The next morning we were met with more seizures. My neighbor and dear friend Linda called me that morning to see what the day held for me. I told her about Rachal’s seizure. I remember Linda quickly getting off the phone with me and within minutes the phone ringing again. It was Rachal’s Pediatrician. He informed me that Linda had called him and he wanted to see Rachal immediately. I will always be grateful for Linda and the active role she played at the beginning of such a wild time in my life.

What can you do when the family is going to the hospital for a lengthy stay?

When we first began going to the hospital, Rachal was six weeks old. I remember having to rush Rachal up to Johns Hopkins for more tests. My Mother handed me a package. I did not open it until I was alone in her room at the hospital. Rachal had been taken for another EEG and I could not bear watching the electros being placed on her again. As I un-wrapped the package a notebook appeared. I remember smiling and slowly opening the front cover. On the first page was a note from my Mother. She told me she loved me. She shared that she would be praying for me through all of this. She asked me to begin journaling my feelings and everything that happened. She promised me that someday it would be a blessing to look back on. She wrote in Bible verses from Psalms and her own personal prayers as well. I filled that journal within months and went on to fill many more. I will always be grateful for that gift. It has been over 13 years and I still look back at where both Rachal and I have come.

No one has the perfect words to convey when a disability touches a families life. Whether the parents knew about the disability while it was still in the womb or just moments after a birth or after a devastating accident later in life - there are no easy words. And sometimes words are not even necessary.