January 25, 2018 Sisterhood

I can remember my husband’s voice as if it was yesterday telling me, “There’s got to be a silver lining.”

I was furious. Livid. Enraged. Homicidal, even.

“Are you kidding me?” I replied as I glared at the multiple tubes sticking out of our daughter’s face, “What could possibly be wonderful about this situation?”

There was no silver lining. No smiles. No laughs. No joy whatsoever.

It wasn’t until today that I appreciated what Chris had said during our fourteenth day in the PICU. It may have taken me almost four months, but I have finally found the silver lining. Or should I say silver linings, because I now realize there are many.

To be honest with you, I’m probably a better person now than I was four months ago. I was pretty selfish, vain, greedy, unappreciative, and trite at times. I complained a lot about absolutely nothing. The cancer that is complaining took over my body the more I allowed it to, each day filled with more gloom and negativity than the day before.

It seems as though God had to strike me down for me to realize how good I had it. It’s funny because I prayed for things like patience, understanding, and happiness. I thought I received the exact opposite, but it turns out I got exactly what I prayed for. As the old saying goes, “Be careful what you wish for.”

I suppose I found the silver lining today after speaking to a woman named Christa whose son, Sebastian, was affected with AFM two years ago. Like Annadelle, Sebastian was paralyzed from the neck down. He has since undergone surgery for nerve graphs in both his upper and lower extremities. Christa spoke to us about his recovery and offered words of wisdom for us mammas who are just now getting acclimated to life with AFM.

After our conversation, I realized I was now a part of a sisterhood. I have been indoctrinated into a family that I never wanted to be in, but am now grateful to be a part of. It helps to have a shoulder to cry on that understands your pain exactly as you feel it. One day your child is running around playing. The next she’s close to death. Blink, you missed the good times. Now you’re learning to live life anew. You cry in the shower and sink to the bottom of the tub as the water flows over you. You beat the steering wheel in your car as you scream out in anger, tears aplenty. You hold your breath as yet another doctor cuts into the little hope you have when he says, “She probably won’t recover.”

The worst part of it all is that there are probably many more parents like me, much more than what is being reported.

While it is wonderful that AFM has received the publicity it has in recent weeks, there is still much to advocate for. Did you know the CDC is not requiring hospitals to report suspected cases of AFM or cases of patients exhibiting similar symptoms? This means the reported number of cases of AFM is widely inaccurate, with some doctors estimating AFM has affected at least 10 times the number as being reported by the CDC. Imagine the number of parents seeking information and being unable to find it. Many AFM patients are often misdiagnosed with spinal stroke, transverse myelitis (as we were) and ADEM, leaving a more accurate estimate of AFM cases unknown.

To date, the CDC has not done much to combat the diagnosis. Only recently has an effort been made to establish a task force to learn more about AFM, and that was only done after members of the AFM parent group traveled to Washington to meet with members of Congress.

A few of our AFM mom and dads have been working to establish the Acute Flaccid Myelitis Association (AFMA) to advocate for education and research for AFM. You can visit the newly-established website at http://www.afmanow.org.

Chris and I will be updating our blog here within the next few months to include helpful information for parents of children with AFM. It will include a “common questions” page that will address the diagnosis itself, causes, and possible treatments including alternative medicine and home therapies.

Please join me in advocating for research, education, and a cure for AFM. Talk to your friends, write your legislators, and share AFM info as you see it. A small gesture can make a big difference in the fight against AFM.

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