Wednesday, September 26, 2012
You have a very difficult job I am sure. Trying to fit children into a least two very busy surgeon's schedules, some for initial assessments, some for reassessment and some emergencies. I would not want your job. The number of calls you must field each day, messages to return, faxes to process I imagine could adle the best of minds. That being said I would like to further our conversation today when you so rudely posed the question as to why I was putting off the appointment you were trying to schedule when it was your understanding our need to see the surgeon was urgent. Allow me the opportunity to explain our situation so perhaps having a window into us you won't be so quick to judge me and other folks who have just as much to juggle as you but with higher stakes.
My daughter is complex. The primary presenting issues in the genetic syndrome that has a hold on her are orthopaedic. Because the syndrome is caused by a mutation in each eighth chromosome every cell in her body then possess the mutation and is affected by it. Not only is she plagued by chronic pain in her joints she has issues with her digestive system, neurologic systems as well which by the way also cause her pain. To add insult to injury the child has learning disabilities making successes at school and in every area of her life hard won if at all. Most importantly this daughter of mine is a WHOLE person. She has goals and aspirations. She was born to take a bite of life but also with a body that fails her.
Here is the reason I tell you all this. Yes the appointment we are trying to agree on is urgent. The child needs to be seen. She also needs to keep up with her school work and every moment missed by attending appointments is twice as hard for her to catch up. The child has other doctors and professionals vying for her time. This week alone she has seen a gastroenterologist and an academic counsellor which have lead to more procedures and missed school. The child also needs to have the opportunity to participate in something that gives her joy, solace, peace and a feeling of accomplishment. All of this requires a team effort. We desperately need the assistance of the professionals in each of the clinics we are attached to. We need them for their expert advice, compassion and support so that the child can live her best life.
When there are complex needs and many people involved with all their demands there has to be someone at the helm steering the ship. Someone needs to be seeing the whole child not just the isolated symptoms of her disorder. She is more than an end product of a mutated gene. All of her needs to be tended to and that means prioritizing. The current issue is a priority as it is new and causing sharp pain however the problem is likely not going to be solved at the appointment. Preliminary testing has been done and the surgeon has the results. If he needed to see us immediately we would have been called. The next priority is a pressing matter at school. Seeing the doctor within the week will be fine the school will be tended too and hopefully we will have a calm, collected kid with less pain at the end of it.
This is the reality of raising a child with multiple needs. This is a new reality for me with this particular child. Most of my children are complex and have multiple areas of need but the difference here is that this one has academic capabilities and goals. For my others in all honesty if they missed a few days of school in a month chances are they aren't going to miss the day where they learn how to cure themselves.
To end my dear booking clerk, I do apologize if you think I am not jumping as you think I should and that I am "putting off" this urgent appointment. Your goal is to organize two (at least) very busy schedules. My goal is to raise a physically, emotionally and psychologically healthy productive member of society. BAZINGA!