There's a family in Charleston at MUSC that is facing some very scary things tomorrow. Their son is HLHS and can't make it off the vent. Tomorrow he is having 3 surgeries. A Nissen Fundoplication, a Gastronomy Tube placed (G-tube) and lastly, tracheostomy.
I know what this family faces. Three years ago, I walked this road myself. It was long, dark and lonely. Now that I've moved back to KY, I can no longer just go over to MUSC and visit the families like I used to do. I miss it terribly, not being near the hospital. It was my second home and comforting other parents going through what we had faced was not only therapeutic, but became what I want to do with my life. NO parent should have to face going through what I did with Tommy, before he was born, during his life and in his death. But his life passing through mine made me who I am.
I walk through my life with a sense of humor. Sometimes it is a bit wry and askew, but I'm not exactly one to conform to the masses either. Remembering Halloween right after Tommy was born, seeing the scars all over his body and the fresh zipper down his chest, I joked we should paint him green and let him go as Frankenstein. Unfortunately, he was very, very sick at the time and my humor was there to rescue me from my misery. A year later, discussing what our wee one should be for his first "real" Halloween, we tried to figure out how to incorporate the machines keeping our baby alive. Trach babies make a gurgly sound when they breathe sometimes. Perfectly normal. Just a little secretions hung up in the trach. I seriously considered a Darth Vader costume, but when I acquired the little Vampire costume, it was a done deal. He was the cutest little vampire on Earth.
I don't know the family at MUSC personally. I wish I did. I would bend over backwards to be sure they had all the help and moral support they need. My emails will have to suffice. I have such a passion in my heart to reach out to families with kids that have special needs. I don't know what I would categorize myself as. Part counselor, part researcher, part well of information. I want to turn this into my career, but can't seem to catch a break. I was accepted to college early in the year, but as the admission date got closer, it became very clear that we financially could not swing it. Even though I qualified for financial aid, transportation was a huge issue. I already travel 45 minutes one way to work. Attending the college where I was accepted would have doubled that and the amount we pay for gas. But I'm NOT giving up! I just need to broaden my options.
My heart, my dream, Tommy's legacy lies in reaching out to other parents. I want to learn ASL well enough to teach it, I want to attend IEP meetings and make sure the parents get what their child needs, I want to sit in hospital waiting rooms with moms and dads while their child is in surgery to remind them to eat, have something to drink and to talk to someone who has been in their shoes. I dream of a day where I can support my family financially by doing what I dream.
Today I dream about reaching out to that family in Charleston, with a sense of deja vu. Knowing what they are facing and wanting to let them know I'm here. That's what I wanted when I was going through this with Tommy. I wanted information and I wanted to hear what it was REALLY like, not what the doctors told me, but what a mom would say. Now I'm that mom. I have a lot to say. Just ask.