Terminal Illness

Terminal illness...

I'm a smart girl. I took honors and AP classes in high school. I was reading novels, such as The Great Gatsby and Pride and Prejudice by middle school. I can tell you all about Darwin... and Roosevelt. I know the dates of most important events, can recite the Declaration of Independence and I know geography just as good as a map. I rarely hear a word I can't spell or read one I can't define, so why did it take four doctors, two chaplains and a book named Webster's Dictionary, for me to process and understand those two simple words... terminal illness.

On the afternoon of Friday, June 22nd, my son's pediatric team knocked on the door of our hospital room. The resident who had been working with him, entered the room with her usual bubbly smile, wheeling a computer on a cart behind her. That morning my 16 month old son had gone in for an MRI, so I knew when I saw the computer, that we had our results. Dr. F, the resident, came to sit by me on the couch, in the back of the room and began talking about the MRI.

She used words like, atrophy... shrinking... abnormal... But to be honest, I had no idea what she was saying. It sounded like a foreign language to me. Not just because it was "doctor talk," but because I literally could not process what she was saying.

"Would you like to see the scan?" She asked me after she realized I wasn't comprehending what she was telling me.  We walked over to the computer, where she began showing us images of his brain.

"This is blood that is filling the empty space in his skull."
"This is his skull. This is his brain. Do you see all that space between? That indicates brain atrophy."
"This is the most effected part of his brain."
"We believe this is caused from a metabolic disease."
"No cure."
"It's a degenerative disease."
"The disease is progressing."

My husband came to my side and held me, as the tears began to stream down both our cheeks. Everything we had planned for our son was gone. Seeing him take his first steps, graduate high school, play professional basketball, marry a beautiful (and smart) woman whom he loves, have babies that remind me of him when he was little... all of that was gone. No longer possible. An x-ray image, a PICTURE!, stole every hope and every dream we had for our son. We were feeling so much more then devastated.

"Palliative care... terminal illness," were the last words I heard before my mind went numb. I couldn't hear it anymore. I didn't want to hear it. I didn't want to know it.

For the next three days, those two words "terminal" and "illness" danced in my head, taunting me, driving me crazy. I couldn't define them for the life of me. All the books I'd read. All the years I spent in school. None of it prepared me for those two words. Nothing I knew or had learned in the past could help me define them or accept their relevance to my family.

It wasn't until yesterday that everything started to fall in place. My mind began to wake up from it's dormant state and things started to make sense.

I asked our doctor what terminal illness meant to him and he told me that terminal illness meant someone had a progressive health condition that would be fatal and there was no form of treatment or cure. Then I asked him, "Does my son have a curable or treatable condition?"

He looked at me from over my son's hospital bed and told me, "No."

Then I asked, "Will my son's disease get worse?"

"It is very likely."

And I swallowed fear as I asked, "Will it be fatal?"

With tears in his eyes, the doctor told me, "Yes...  but that doesn't mean give up hope. Medicine is never definite. Nothing is 100%, so don't give up hope."

And that is when I realized what terminal illness meant. That is when everything Dr. F had told me finally clicked. It all made sense...

Terminal illness means NOTHING!

"Strength does not come from physical capacity. It comes from an indomitable will." I talked about that quote, in the past. I talked about how it reminded me of my sweet boy and how he showed me his amazing indomitable will EVERYDAY of his life. It's his strength and his will to thrive that keep me pushing on. When I think I can't do something, I look at the child I gave birth to who doctors said would never be seizure free and I remind myself that he went seven months without a seizure! When I'm tired and I just want to throw in the towel, I see my son who is doing everything in his power to hold his head up, even though he doesn't have the physical strength to do it. My son is a fighter! He doesn't give up. He has indomitable will. So those "pictures" of his brain that say he will never walk, he will never communicate with me, and that someday his respiratory system will fail, they mean nothing to us. Our faith, our hopes, our dreams... they may be tainted, but they are not gone.

That doesn't mean this is going to be easy. I still cry everyday. I still lose sleep every night. And my heart is still broken in two. I know that we will have bad days. I know my faith will be tested and I may lose sight of some of my dreams. This is, without a doubt, the hardest, most difficult thing I have EVER been faced with, but I won't admit defeat. I won't let it break me or break my son. We will fight for as long as we need to or until he just can't fight anymore.