I recently had my 6 month follow up in Boston and I have nothing to report. I have become mundane. Thank goodness. Nothing like being normal. But you all know that I am not, nor will I ever be. There is an unusual aura that follows me. One I had not really noticed until recently. My visits to the transplant team are inundated with a giddiness that I guess I have taken for granted. My transplant doctor smiles broadly as I freely walk into the room. The strength in my legs as captivating as watching a thoroughbred. They hold me up with a grace unexpected considering I had not been able to use them as a functioning pair for 18 months. My hair grazes my chin in an autumn curtain of ringlets. I am there with my 10 year old son, who really only is my companion. This contrasts the caregiver role he undertook at the tender age of seven. Dr. Wonder Woman shows me off like the grandmother of a medical student. “I had to call you, Demara is here today. Look at that!! Look at what she can do! I didn’t mean to interrupt you, but you just had to see!” She chases her NP down the hall, ” Wait! Wait! Demara is here! I wanted you see how well she is doing.” Don’t get me wrong, I love the attention. There were many times I was the center of attention for much different reasons. Those times when the tones of the whispers were low so that I could not hear the doubt in their voice. I take for granted how far I have come.
There is rarely a week that goes by that someone does not call me a miracle. Regardless of my circumstance, I had never really thought of myself that way. Even though I fully believe in Christ, me a miracle? Just “lucky,” I guess, or am I?
I was approached by a man at a restaurant recently. He stated, “You don’t know me, but I prayed for you everyday while you were in Boston. It is just beautiful to see a miracle walking.” It brought me to tears. No, I didn’t know him, but it felt good to know him now.
I have been fortunate enough to find my donor. We had a beautiful conversation. How do you thank someone for the gift of life? That because of him, you walk, you breathe, you get one more chance to get it right. And then he says, “I prayed for you so hard. Our whole congregation did. And my father’s congregation too. We were so hoping that the Lord would use you and that I could be part of that.” Whoa. Not only are you given life, but your salvation, your discipleship, your ministry has been prayed for. At the lowest depth of your life, someOne was looking out for you. Someone you had turned your back to for years, He still cared. I don’t have the words.
In this day and age, the language of miracles is taken somewhat lightly. More often to be used as a sarcastic slander than a true declaration of the improbable, it got me thinking, am I a miracle?
I think that the answer is yes.
It took them 10 months to officially diagnose me with an illness found in only 1/1.2 million people.
We had to move to Boston, in a snow storm. We made it there safely.
They found a donor for me in 6 weeks.
Greg was told that it was unlikely and very improbable that they would be able to do anything about my massive GI. Doctors at that time felt it was improbable, if not impossible that I would have a bleed area that they could control. But I did.
I have at least 3 vertebral compression fractures. But I still walk.
They didn’t know if my hip was sterile and could support the hardware of a replacement. But it did.
I had a 100% fatal disorder and only a 70% chance that the bone marrow transplant would work. I am recovering.
And that’s just what I can remember and put on paper.
Have you ever been in a coincidence that just seemed like it was too good to be true? Have you felt even at the deepest part of despair, that you are not alone? Did you ever try to figure out why bad things happen to you only to realize that if they hadn’t, you wouldn’t be in the place that you are now?
Is it Dear Lord-WHY ME?!
Or more humbly, Father, why… me?
I cannot set aside the mysticism that I have experienced, nor do I want to. Dare I say that I am happy about IT? The whole thing? I find the things that I am not happy with are cultural stigmas, personal disappointments and the loss of control that I mistakenly thought I had. I’m still trying to regain what was never really mine to begin with. And I struggle with it.
I am sad that I live in pain. I am sad that my children won’t remember ‘before.’ I am sad that I cannot do everything that I want to do. I am sad that I am afraid of the uncertainties I face.
I have gained a greater appreciation for the present. In a different way, I am happier than I was ‘before.’ I am happy that my children will actually remember me. I am happy that my story is more than a tragedy. I am a protagonist in my own legacy. I am a miracle.
I’m a Nobody