And then...I cried

It has been a long time since I have posted an entry on my blog. That is not to say there has been nothing to write about.  Since my last post, I have had a zillion blog posts swirling in my head, yet somehow they never made it beyond that.  I could blame busyness, or lack of time, but to be honest it runs deeper than that. When I commit something to paper (or screen:), it somehow becomes that much more real – and vulnerable. Life has been fairly complicated and often overwhelming this past year.   I have often felt like a hamster on a wheel, and slowing down to sift through it all has been challenge and remains a work in progress.  

Today, I decided it was time to do some “unpacking". Here we go...

This past Thursday, Mike and I received a call from Natalie’s amazing new doctor in San Francisco. He was ready to share the preliminary results from the muscle biopsy she had just a couple weeks ago. I listened to all he had to say and then… I cried.

I cried because he told us that her preliminary test results confirmed a mitochondrial disease diagnosis, and our glimmer of hope that maybe we, and the various physicians who had given her that working diagnosis, were wrong.

I cried because he told us that it is not be something she will “grow out of” as we were first told a few years ago. Instead, her body will face a slow progression with the speed dependent on many things including her adherence to her treatment and protocol, as well as her avoidance of any major illnesses and hits to her immune system.

I cried because of the outstanding questions about her prognosis that remain, and will hopefully be better answered when we get the results of the more extensive testing on her muscle tissue that is being completed at two different hospitals. And…for those questions that will be unable to be answered because of the nature of the condition.

I cried because this is not the journey I would desired for her.

But most of all…

I cried because I was glad that after 11 years of atypical medical issues with Natalie (with the last 4 years having been increasingly challenging for her), and test  after test that was "inconclusive" but clearly not normal, we finally have a definitive diagnosis that we can stand on, and move forward with.

I cried because we don’t have to worry about prideful, ignorant doctors trying to tell us that my daughter’s issues are “in her head” or a result of anxiety or some other psychological root cause. I felt relief. We no longer have to debate with doctors, or live in as much fear that our daughter could be taken away such as happened to Justina Pelletier in Boston with a presumed mitochondrial disorder. We have been following her case since October with a clear realization that her story could be OUR story. My heart breaks for her family.

I cried because I know there are so many other kids out there like Natalie who are misdiagnosed and/or not getting the proper treatment resulting in a horrible quality of life, or sometimes, even death. This is simply due to the lack of knowledge and awareness even within the medical community. This.has.to.change.

I cried because I realized how much our previous neurologist endangered my daughter’s health when, instead of figuring out how to proceed and consulting with someone else, he called me to tell me that he was “throwing his hands up”, didn’t know what else to do, and abandoned her care while she was still suffering and medically comprised, and in her 10^th week of a migraine episode for which she had been hospitalized twice for with no relief this past October.

I cried because in losing her previous neurologist, we were led to Natalie’s new neurologist, who has overwhelmed us with his kindness, tremendous knowledge, and such thorough support and care we almost don’t even know how to receive it.

I cried because we were only able to see this neurologist and all of his fellow doctors who are supporting Natalie’s care because we were forced to pick new insurance (and doctors) after Mike’s work told us that they were dropping our current insurance plan, causing us to panic at the thought of losing the primary doctor and hospital that Natalie has had for her entire life.

I cried because our new doctors (and hospital) are knowledgeable and have done more for Natalie (and us) in the last four months than has been done in all of these years.   They “get it”, and we don’t have to plead her case, educate them, or spur them on. They educate us and advocate on her behalf. They provide “active care”, and meet our needs before we even ask. This brings me such comfort.

I cried because we got to experience God “moving us” when we were stuck in our comfort zone, unaware of the next steps to take. It was painful and hard, requiring us to take a deep breath and “step off the boat”. We did it, and the results have been beyond our expectations. Our first step was moving her care to the hospital in San Francisco, forcing her (and us) to leave the familiar “home away from home” we have had at our hospital in Sacramento for the last 11 years.  It is a place we were so very comfortable at, one full of nurses and Child Life staff who have provided great care and so much love to my sweet girl for all of these years.  This move, coupled with changing insurances and all of Natalie’s physicians (including her primary doctor) was the best thing that could have happened. The difference in Natalie’s medical care and the coordination between doctors far surpasses what I even knew was possible. That is not to say our previous hospital and doctor(s) did not care or desire to help her, they simply did not have the knowledge required to properly handle her situation.

I cried for these and many other unwritten reasons after we talked with the doctor because there is so much wrapped up in all of this. So many mixed emotions, so much to carry and then surrender as we move through it.  Even with the challenges, I feel so very blessed.

And I am crying now because my heart is full and thankful, for all that has gone on, and is to come,  and for the many people who love on and pray for my daughter. She inspires me, and brings me joy and laughter, even on the more challenging days. I do not know why this road was chosen for her, but I know she will continue to bring light and love as she travels it. We know not what the future holds, but we do know God will be with us on the journey.