"Power Failure"

We likely have another month or so to go before we get the full results of the muscle biopsy and the official, specific diagnosis for Natalie. We know it is mitochondrial disease, but just what kind and what are we/she facing in the long run? Answers are good and have been long desired, but not knowing what exactly will be contained with in them is scary. Natalie has symptoms every day to varying extents, one of which is a shallow breathing issue. It can be worse based on whether she is fighting off an illness or is simply fatigued. The other night, a particularly bad night for her breathing issue, she asked me a question I have heard many times before, "Am I going to die, mom?"  We have talked through this many times, but this was one of those times where she burst into tears and went on to express how scared she was about to hear what the doctors have uncovered for her diagnosis, and potential prognosis. "What if they tell us that it is really bad mom? What if they say I am going to die? What if it is mom? Because it is getting worse and I know it." These are not fun questions and honestly, how do you answer them. 

We all have the things we think we should/would/could say, but in the moment, man it is so hard - partly because I have the same questions, and also know that even when we get our official diagnosis, the prognosis will be "best guess" as every person and situation is different, and there is only so much known about mito at this time. We talked for some time, and I reminded her that we don't know exactly where this journey is taking us, but we do know we aren't alone. I told her in everything we have found out so far, nothing suggests that she will be dying anytime soon, and that I plan to have her as my sidekick for a super long time. We talked about taking things step by step in hope, and not letting us give into the power of fear. I really try to live that way and do not believe in allowing fear and worry to consume me, especially when dealing with an unknown. Fear is life sucking and clouds judgment, faith is life giving and provides clarity.

When we have these talks, and frankly just as we live out and through this whole journey, I am often reminded of an experience Natalie and I had last year. It was one of those life metaphors, a divine illustration if you will, and was powerful for the both of us. I believe it was a gift.

Last year Natalie and I went on a special trip together to see the LA short film red carpet premiere for The Magic Bracelet, a film produced by Make a Film Foundation. Rina Goldberg, a young girl who died from complications of her mitochondrial disease at age 15, wrote the story for the film. It was a fantastic event for Natalie to be a part of and she was very excited as the film features a girl with “mito” who is played by Bailee Madison (one of Nat’s faves). She was also very nervous and had several fears about the trip - fear of the unknown, fear of flying (she had not been on a plane in years and has flown only a couple of times), fear of being just us without “the boys”, just plain fear period. Deciding to make her faith bigger than her fear, we headed for LA on an evening flight set to leave after school/work on Friday. All preparations were complete before we left, including having the directions we needed to get from Burbank Airport to the Hotel we prepaid for in LA near Brentwood ready to go in my phone.

Things started very smooth with an easy airport experience, and a quick, seamless flight that landed in LA around 8:30. We were all smiles, excited to head to our hotel. After grabbing our baggage (and having an interesting encounter at the baggage claim), we headed over to pick up our rental car. There was quite a wait, and Natalie was getting very tired, as was I. After getting our car, I asked the Avis employees the best way to get out of the airport to the freeway and they gave me a brief overview, handed me a basic, very high level map of the LA area  and briefly mentioning taking 405 to head toward Beverly Hills and Brentwood.

As we walked to the car, I noticed my phone battery was very low, and made sure I had my charger ready to go. It was dark by now, and we got loaded up in the car and headed out. With my battery almost dead, I plugged in the charger and we headed out. We got on the freeway and I grabbed my phone to look at the directions. It was then that I realized it was dead. Figuring the charger must not have been plugged in all the way, I fiddled with the charger, both ends, and made sure we were all connected.

We headed down I-5, and I noticed my phone still was not coming on. At this point, I began to realize the charger had stopped working, leaving me with no phone. So here we were, just me and my chronically ill child, on the freeway, in LA, at night, and in the dark with no map, no directions, and no way to call anyone, and really no where “safe” to stop. I have been to LA many times, but never to the Brentwood area. I started to think back to what the Avis folks said and kept watch for signs leading me toward 405. I knew once we hit Commerce that I had gone way too far, and I had zero clue where to go. Natalie was exhausted. Because of her fatigue, most nights she is in bed by 7:30, and it was after 9:00 on a Friday at the end of a week. She was spent. She also started cluing in to the fact that there was a problem and began freaking out in the back seat. She was hysterical, like if it were a scene from a movie, she would have been slapped across the face so she is shocked into calm kind of hysterical. I am not a panicker, but I was seriously starting to lose it inside. I needed to keep her calm because fatigue and extreme upset/anxiety can throw her into a full blown episode which would definitely be a problem since I had no clue where a hospital was and I certainly couldn’t just pull off anywhere – Mike and I learned that many years ago when he had food poisoning and we pulled off in LA and ended up in South Central Los Angeles at Ralphs market being escorted by security among other things (a funny story for another timeJ).

I decided the best thing for me to do was to pull off somewhere and take a look at the map to see if I could figure any thing out. I do have a pretty good sense of direction and good visual recall, but I was quite sure that wasn’t going to be enough. I pulled off the freeway in a super sketch area and found a hotel parking lot that was empty and large. Figuring I had at least one minute to flip the light on and look at the map before anyone could get to us (yes, these were my thoughts), I pulled into the very center of the lot. I took a quick look and found “the 10” (which we passed long before) that linked to the 405 and figured that was a good place to start.

Natalie losing her marbles all over the back seat, and I was talking her down. She wanted us to go to any hotel just so she could go to sleep, and I told her that we had a prepaid hotel that we were going to get to, and that we couldn’t just stay anywhere, we had to get to at least a different area. Let me tell you, the options around us, were not going to work.

I told her we needed to pray for wisdom and guidance and just look at the next step, and that we needed to have faith and trust in God. I told her she had an important job to do in working together with me to look out for “the 10” and that I needed her committed and focused.  Inside I was freaking out because the later it gets the worse off things get with her, and I had no clue how things were going to end up, and I had no way to talk to Mike or anyone.

We headed north and eventually found “the 10”. The next step was “the 405” which we not only needed to find, but then also take a gamble on whether we were supposed to go north or south. I really was not sure. We took a leap of faith (as we cheered when we saw 405), and chose north. I remembered the exit off of the 405 was Sunset Blvd, but I had no idea how far it was (or whether it was even in the northern direction). Literally about 3 exits after we got on 405, was Sunset Blvd.  I only knew the name of the hotel (no idea on the address – street or numbers) and that it was round. As we pulled off the freeway, I saw the hotel just right out there. 

By this time it was about 10:30 or so, and I felt like I had aged like 30 years.

I also felt like Natalie and I had both learned a lot, and had an experience we could take with us. When we were on our way home, I asked Natalie what the 5 best and worst things were from our trip, as well as the 5 things she wants to remember. On the top of her “what I want to remember” list was “Trust God”.

As I was telling Natalie that it was okay that we didn’t know exactly where we were going, and that we had to trust that God give us signs along the way, and guide our path – that we just needed to look for each next step, I realized the message was also for me. We need to truly walk by faith. Worrying about the “what ifs” and allowing fear to command us undermines our ability to truly experience everything our journey holds for us. Ultimately we didn't need my phone. We arrived at our destination without every being able to use it. Though the journey would have been easier, we would not have had such a powerful learning experience. When we stopped relying on and grieving over the lack of power in the phone charger, we were able to witness and experience the power of our faith and divine direction. 

We live with a lot of unknowns with Natalie’s illness, never knowing what each day will bring, when she will encounter situations requiring hospitalization, or what her long-term prognosis will be. It is challenging for our family, and at times very painful and yes, scary. That is, however, only a part of this journey we are on. We also have a life full of joy, laughter, silliness, fun, and love. My family can have fun anywhere.  We take things step-by-step, working through things as they come, making adjustments as needed. We have ideas, instead of plans, and have to be careful about balancing our activities with Natalie’s need for rest. We appreciate the small things because we notice them now.

Natalie had an amazing time at the movie premiere. She could not believe everyone who came out to support an event surrounding mitochondrial disease, and was super excited when she got to meet (and hug) Bailee Madison. Going to something like this is fun, yet exhausting for her, requiring her to rest up the day of and then again the day after.  She gets wiped out physically, but it’s so worth it. This particular trip blessed her in so very many ways, the most significant being the gift of a life lesson that she can carry with her always.

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.