Writing a letter to all of my daughter's service providers has crossed my mind over the years. It would be something I could say to help the process of attending to her medical needs.
Because I realize that the things I need to say aren't obvious to the whole world.
So if I did write a letter, this is what it would say:
Dear Health Care Professional,
I'm the parent of a beautiful creation named Allison. The chart you may or may not have glanced over is a very narrow description of my amazing daughter. It may seem to you that it is thick and full of information. I'm here to fill in those gaps.
My daughter has a rare, complicated syndrome that is hard to explain. It has only been studied for about 35 years, which you and I both know is a very short time in medical research terms. I've been studying it daily for more than 13 years. Although I am still no expert all things Emanuel Syndrome, I am an expert in all things Allison.
I'm not at all surprised that parents like me are labeled aggressive or emotional. You see, while you are talking to your colleagues, we are talking to each other. These are some of the experiences we have shared.
It was Chromosome 22 Central parents that suggested we not give her Morphine after a terrible reaction landed us in the Pediatric ICU. Not the sedation team. It was your colleague who agreed that she should never receive that medicine again. We found a plan that works. So when you suggest we try Morphine again or even worse you decide to override my decision and administer it anyway, you should expect to experience that emotional side that you seem to abhor.
When I asked that an extra measure of caution be applied for her heart surgery, the nurse rolled her eyes are me. She went on to explain that they “do these all the time.” Her apology the next morning was appreciated since the surgery was canceled the night before because they were unable to match her incredibly rare blood.
My daughter has a difficult time swallowing. This was discovered after nine years of bottle feeding. After numerous attempts at different therapy, we found that she was protecting her airway. Her weight didn't increase, which brought us to the diagnosis of failure to thrive. The swallow study was done and it was concluded that she should be fed through a g-tube in her stomach 100 percent. Please don't accuse us of not trying hard enough to feed her orally. I can't imagine why you think I'd rather carry around a pump and bags of canned formula with me than be able to order a fun treat off the kid's menu for my child.
Due to her history, a well-respected doctor told us to take her to the emergency room if she ever vomits. This has been rare for a child with her medical issues. Both times I have whisked her in over the past five years, the same ER physician intimated that I was overreacting. Although working in that very same department for three years was rewarding, bringing my child in as a patient is not. Please understand that I want to be there even less than you want me there.
Getting her supplies is a completely different article. It makes me wish I had kept a log of the hours I have spent on the phone being transferred numerous times to explain why we want her to continue using formula that doesn't make her sick. The recent discussion regarding diapers that fit a 13-year-old well enough to do the job they are meant to do has me taking time off work to sort it out once again.
Please don't misunderstand me. I adore this child. That is why I choose to fight all of those battles sent my way on her behalf. Her trials bring pain, but her zest for life brings joy. Her health, comfort and life are worth fighting for, and I hope as a person who has chosen this field that we will be on the same side, working toward that same goal. The end result being the healthiest, happy life she can possibly have and every person deserves.
Although I am still no expert all things Emanuel Syndrome, I am an expert in all things Allison.