Letter

I have been debating for hours if I am actually going to write and publish this post. See there is a level of vulnerability in blogging however I read an article this morning that reminded me why sharing our journey is worth it.

I was reading an article about the mess that Chicago Med had of an episode about mitochondrial disorders. I frankly don't watch the show, I live in the medical world at this point, shows like that just feel a little too real in my world, and then in some ways they seam too fake. Well they decided to talk about mitochondrial disorders and from the many articles I have read about it this week it seams like they rather did a crap job about it, personally I have no intention of watching it, no need to make myself mad and no need to give viewership to a show that would call mitochondrial disorders a "wastebasket diagnosis." It is a very real thing.
See if Brent and I had to take any guess at this point about the most likely disorder that Jillian has I would put 99 of my 100 eggs in the mito basket. Logically it is the disorder that makes the most sense and ties ALL of her symptoms together. But here is the thing... there is NO "golden" test for mito. There is a DNA blood test, but it does not identify all types of mito. There are muscle biopsies, but they are not 100% accurate either (says the mom of a kido with a muscle biopsy that is considered "inconclusive" as her muscles are very atrophied but no one knows why and other numbers were off but not enough off for them to know what is going on). Its not like many other disorders where there is one test that is right 100% of the time. Thats the thing about mito, for many people is takes MANY years of searching before coming to a diagnosis. My people are eventually diagnosed based on symptoms and not a conclusive test, however you have to find a doctor that knows enough about mito for them to be willing to make that call.

Yesterday we got a letter in the mail from Madison genetics. It was the summery of their findings that they were sending to us and Jillian's other doctors. It talked about Jillian's medical history, the testing she had done and their impression of her physical exam (her ears are slightly low, her eyelids have a slight upslant and she has low muscle tone). It also stated at the end that at this time they were not able to find something and that it is our choice if we follow up with genetics in Madison or Milwaukee but that we should do so in one to two years. One to two years...
To an mom of an undiagnosised kiddo that sentence reads "we have little hope for figuring out what is wrong for the next one to two years." Yes we see neuro this week in both Milwaukee and Madison, however all of our doctors so far have told us they are differing any diagnosis to genetics so I really doubt neuro is going to diagnosis anything.
 Even though the contents of the letter do not surprise me, it still sucked reading it. I want someone to figure this out. I want if it is mito for someone to be gutsy enough to make the call. It is not the day in and day out medical stuff that bothers me, honestly if she needs oxygen and a feeding tube for the rest of her life I am completely ok with that. Both of those things help her so much and I do not see them as a hindrance but as a huge blessing because they make it so she can participate in the world (be prepared for lots of blog posts next week as it is Feeding Tube Awareness Week). It is not the fact that she needs different things to help her succeed in this world that frustrates the crap out of me, it is this undiagnosised game. The battles play in my head of if I should be pissed at the doctors for not searching hard enough or if I need to cut them some slack because medicine really has no idea what is going on. Neither of those things are easy to come to terms with. I don't want to be mad a doctors who really are doing everything they can because that is not fair but at the same time I want to know they are doing all they can be (Jillian has some doctors that I know without a shadow of a doubt that they are doing all they can for her, there are others that I feel like sometimes give up a little to easily). Being mad at medicine if it is just not caught up to Jillian is a futile cause, and really feels rather hopeless.
Frankly I read that letter last night and was rather pissed off. Pregnancy hormones probably are not helping much as yesterday I was trying not to cry over the fact that there was no food in the world that sounded even close to appetizing to eat for dinner.
I sent a fellow momma of a medically complex kiddo an email last night just venting my frustration. One of the things that I admitted to her was that I really struggle that when we have appointments or get letters like this that don't go my way that I get upset, but then I feel bad for being upset because I feel like if I am upset or wallow in it then I don't have a clear mind to take the best care of her and fight for her the best that I can. I can't let emotions run my child's health choices. However getting mad that I am upset does not really help anything other then mad+upset just equals pissed. Brent said last night I had a look like I was about to explode. This kind momma last night reminded me that it is ok to be upset when we hit another dead end and that it is the natural response. That I am not letting Jillian down if I take a moment to be mad. I really struggle with that... that if I let my emotions get too involved with this that it is letting her down. I struggle with thinking that other people are judging us in all of this. And that makes me mad too, because I feel like at 26 I should not be worried about what other people have to say, but it does worry me. I worry that others don't think we are trying hard enough. There is a reason why I dress professionally to doctors appointments, its so I am taken seriously. The going to doctors appointments and dealing with medical equipment is not what weighs on my heart, its this stuff. But honestly I have debated for over 12 hours if I was going to write this post (and slept for crap last night) because I worried that people would think less of me. But then I read again about that stupid Chicago Med episode and it reminded me that I need to tell our story because if I don't the only story people will hear is crappy TV shows that are ill informed. They don't talk about this side of the journey. There is also a lot of debate in the special needs mommy blogger community about if there should be blogging about medically complex kiddos because they can't give their consent, and someday if Jillian asks me to take this all down I will (and I by no means write about everything), but for now I'll keep blogging hoping that it spreads awareness for kiddos with different special need so hopefully others can understand what the journey is like and are hopefully more accepting and loving to families with special needs

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