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CMT, Autism, Brain Injury … And a Baby on the Way

Our story is one that is so complex and so outrageous, that short of writing an entire novel (which I hope to do someday), I will give only the broadest outline and allow the reader’s imagination to fill in the details.

I wrote a poem for my son years ago, and today, at age 20, he sports that poem as a tattoo on his back. It is surrounded by angel wings, and says:

Outrageous
Contagious
The Struggle
The Strength
One Mother
One Son
Countless Blessing From Above

When most parents learn that they will be grandparents, it is a milestone, a time for celebration, reflection, and eager anticipation. For me, it is an entirely different story – but I’m getting ahead of myself. Let’s start closer to the beginning …

At 2, my son suffered a brain injury due to a nearly fatal fever. By 3, he was diagnosed with a mid-functioning level of autism. By 5, he was diagnosed with CMT. Somewhere in those years -- and I truly can’t recall the date -- I was diagnosed with APS, a debilitating and often fatal blood clotting disorder. It robs me of energy as it slowly and progressively damages my organs -- and it is painful. But who has time to be ill when one has a son like mine?

To say that the next 15 years were challenging is an understatement. I retired from my practice of law to better care for myself and for my son. My husband, my son’s father, opted for divorce and I found myself facing it all alone. By the time I could no longer support us on my small disability income and a food-pantry diet, my son was 18. We’d been through hell, but we never lost hope (for long) and kept pushing forward. I had no choice but to find a job. Last year, we moved to a new city where I found work.

Last week, my son’s young girlfriend discovered that she is expecting a baby. They are choosing to go forward with the pregnancy, and to get married when she reaches the age of consent. Though the age difference would be concerning if my son were neuro-typical, he is not. He’s special. Not stupid, just special. Still …. Lord, help us.

Yesterday, my son and I spent the day in the emergency room. A new pair of shoes rubbed at his toe and irritated it to the point of injury and infection. He checks his feet each night very carefully, so we caught it early. Still, he needed 2 bags of antibiotic administered by IV.

The CMT that my son suffers is severe. It is progressing rapidly. Dealing with the eventuality of being wheelchair bound is more than he can bear. As much as possible, he tries to not think about that eventuality – but it’s hard to avoid when he faces something like an infection or another broken bone or sprain. “I’m too pretty to end up in a wheelchair,” he cried as I held him in my arms. Through my own tears, I couldn’t help but smile. He is such a good looking young man, not that it matters, but I found his comment to be so endearing.

I listened as he unloaded his emotional burden in the way that is unique to my son. He has so many challenges, so much to bear. At times like that, offering an encouraging word is the wrong thing to do. Sometimes, all that one can do is listen and pray for strength.

Today, strapped into a pair of medical boots in lieu of leg braces, my son shared a morning cup of coffee with me. His mood had changed. “I have a lot to do and a lot to achieve before I lose these legs, Mom. I need your help.” Somewhere in the night, he found his strength to look forward, he found his courage to face another day.

We’ve been talking for a long time about his plans for his future. Preparing for adulthood is so different for my son and others like him. He wants to go to college, but he’ll require a 1:1 assistant – and that costs money. He wants to work, but that requires an understanding and patient employer willing to accommodate his special needs.

There’s a 5-year waiting list for assisted educational and employment services in our area. By the time he reaches the top of the list, his child will be entering kindergarten, and he’ll very likely be wheelchair bound. Other programs in the area limit their benefits to someone with only 1 challenge, not 4. Thus, if he takes help for the developmental disorder, he can’t get help for the physical disability – and vice versa.

My son falls through the cracks. He’s too disabled in many ways, and not disabled enough in others. I’ve done my best to provide him with every possible opportunity and advantage, but after several strokes and chronic pain that requires a twice daily dose of morphine, I am simply not strong enough physically to carry both of us for much longer. Yet, I do. One day at a time.

Did I mention my son's severe allergy? They don't know what causes it. Anaphylaxis happens so quickly and is so dangerous, and 4 times now he nearly died. One of those times, it took paramedics 40 minutes to revive him before he could be transported by helicopter to ICU.

Did I mention my 2 strokes, or the bleed I had that cost me all but one unit of my blood? My son nearly lost me -- but I'm still here.
WE are still here.

God gave this child to me, and he gave me to my child. I’m often commended by those who don’t understand, patted on the back for being such a “selfless mother.” But the truth is that my son is the hero; he is MY hero. Without my son and the living example of strength, courage, and tenacity that he provides, I would not be the person I am.

It’s outrageous, the hand we’ve been dealt. But the strength and courage is contagious. We are a mother and a son, with countless blessings from above.