I Have no Formula for Winning the Race

Perseverance is not a long race; it is many short races one after another.  ~Walter Elliott

Last week, Superkid and I spent a day visiting with doctors.  Superkid had three specialists that we needed to have follow-up visits with, and somehow I was able to fit all three appointments into the same day.  It was a long day for both of us, shuttling between two downtown clinics at two different hospitals, with a couple of loooong waits in various waiting rooms.  No tests--which was nice--but a long day, nevertheless.  

Our follow-ups were with immunology, neurology, and genetics/metabolism.  Immunology was completely unproductive in that the battery of tests they had done provided no answers to why Superkid gets pneumonia so frequently, but productive in that the tests did show that Superkid has a healthy immune system, so we can cross immunology off the list of specialties that follow her.  The neurologist had some additional tricks up her sleeve to help combat Superkid's migraines, and I feel like we're seeing some improvement with those.  And genetics/metabolism was, like always, a full semester of advanced bio-chemistry fit into a single hour: extremely intense and very educational.

Can I just tell you that I am deeply grateful for Dr. Hainline, our metabolic specialist?  The man is my hero.  He never fails to have answers for problems with Superkid that have troubled me for years.  Dr. Hainline's answers don't always make the problems easier to deal with, but they give me something to hang on to, something to use, and sometimes even something to blame.  I am absolutely certain that one of the greater purposes of our Lily's brief life was to introduce us to Dr. Hainline.  

Case in point:  the immunologist we met with earlier that day was not exactly sensitive or sympathetic.  Also, I'm pretty certain he wasn't big on reading patient charts before walking into exam rooms, either.  His use of the phrases, "We've just wasted $2500 of lab work to prove to you your child is normal" and, "Go home and be thankful your child is healthy," were proof of that.  

After a very different meeting with Dr. Hainline, in which he had answers to all of my concerns, I drove away in my mini-van and cried.  I knew, without a doubt, that had it not been for Lily, who introduced us to Dr. Hainline, that I would be taking Superkid to specialist after specialist, looking for answers, and getting both sympathetic and unsympathetic responses that amounted to, "We don't know."

It overwhelms me.  Not just the recognition of how Lily's time with our family continues to have meaning and impact.  But also the recognition of how much love and sacrifice must have gone into Lily's decision to come to earth in such an imperfect body.

I need to take a deep breath and go get some tissues.  I'll be right back.

Okay.  So, I'm gradually learning more about the implications of metabolic disorders, particularly mitochondrial disease, which is what they suspect Superkid has in a mild form. I'm finding it much more difficult to educate myself about mitochondrial disease than it was to educate myself about congenital heart disease--for one thing, mitochondrial disease is so new and the various ways it presents itself are so different; there is no road map.  I'm also finding it much harder to discuss Superkid's mitochondrial disease with people.  As difficult as it is to discuss the possibility of future heart surgeries with others, at least we know what that future is and what it entails: we've done heart surgery,  so have a lot of other families;  it's very serious, but it is understandable.  I don't know what to say about mitochondrial disease, on the other hand; not only do I barely understand what it is, but I have absolutely no idea what a future with mitochondrial disease holds.  It's taking me much longer to adjust to this diagnosis and learn how to deal with it than it took when we learned about CHD's.  

I guess that is why I started this post with some thoughts on running races.  This is no short sprint I am running, as a mother.  I'm pretty sure it is a marathon and I've already lost a couple of toenails.  Then again, perhaps I'm not the one running this, but the one being pushed, Team Hoyt style.  For I have to admit, I'm not naturally inclined to accomplish the things that I have, thanks to the strength and well-timed nudges of my children.  And when I look at it that way, how can I not be grateful that they are willing to let me accompany them?