1,051,200 Minutes

It's 2 years, in case you were wondering. More importantly, it's the amount of time that it took a team of the best pediatric specialists in the world to finally name what happened to my daughter. I decided to create this post, because I think most people are pretty unaware of what a long process obtaining a diagnosis can be. Especially when things can't be clearly tested for with a blood test, can't be clearly seen through facial of bodily features, things that can have varying degrees of severity, present differently due to comorbid conditions...etc. People don't realize how messy this can be. They don't know how many times I've cried myself to sleep after being told my daughter probably has X,Y, Z....which is horrible, but then ended up not having. It's emotional. And if you don't follow up and stay on top of it, no one is going to chase you down. They'd be content forever to say "Lola has muscle weakness, Lola has seizures."

People ask for updates and it's hard to remember who we updated on what. So I get a lot of "I thought you said it was this...." Well you know in January we were told that it was that. So let me catch you up to speed. And people look at you like, "How is it you didn't know....?" Well that is the reality of the diagnostics game. It's ever changing, that is until it isn't.

So let me share with you all the possibilities that were thrown on the table: Intrauterine Stroke vs Stroke at 4 months of age. Cerebral Palsy. Paroxysmal Dyskinesia. Dystonia. ITA Disorder (mini stroke), Epilepsy, Chiari 2 Malformation with Motor Planning Dysfunction, Internal Tibial Torsion with Spastic Reflex, Genetic Disorders....A,B,C,D.E and Pediatric ALS (arguably the scariest thing I've ever heard). And each one of those doctors believed what they were saying.

So believe me when I tell you that these 1,051,200 minutes of Lola's life have been exhausting...emotional...defeating...maddening...and more. When everyone who is the best at what they do, from the best children's hospital in the world, all disagree....what do you do? And every time we thought we were sure, we'd update our friends and family only to be told...."No, it's this."

Diagnostics is a puzzle I never appreciated until I participated in it firsthand. It's not one or two or three doctors weighing in. It's one doctor who weighs in, followed by another doctor, then the two of them get together and refer to another specialist once they've come to an additional question. You go to that specialist who weighs in, then gets together with the first 2. Then the three of them, generate findings and additional questions and call in the 4th and so on until you have 3 Neurologists, an Orthopedist, A Muscular Disorder Specialist, Epilepsy Specialist, Cerebral Palsy Specialist, Geneticist....all working on the same team. And they don't just say...hey it looks like X, Y, Z....no they painstakingly rule out all those "could be's" from the list above.

In these 1,051,200 minutes, I've recounted Lola's entire history more times that I can count. I've taken more pictures and videos as evidence, taken my daughter to more appointments and tests and procedures and repeated them. It's like a shampoo bottle, "Wash and repeat." And Lola, my fierce girl, has dealt with it in a manner that truly fits all the nicknames we have for her; Wonder Woman, Beast, Fiery Pants Cole.

And all those minutes lead you to what you hope is your final stop on the diagnostic express, an answer. So know that when you ask me about Lola and what she has, what happened to her and I say, "Lola has Mild to Moderate Hemiplegic Cerebral Palsy with Secondary Epilepsy due to an acute left ventricular intrauterine hemorrhage." That a lot went into that answer. And yes in layman's terms it means that Lola had a stroke while she was still developing in the womb, the static brain injury resulted in cerebral palsy which in Lola's case also includes seizures. And if we spoke 6 months ago and said "they are worried it's ALS or Paroxysmal Dyskinesia (Both just super scary options." That I wasn't confused. I just didn't have all the puzzle pieces in place yet. That two years of testing and data collection, two years of seizures, mini strokes, occupational therapy, physical therapy, leg brace fittings, MRIs, EEGs, blood tests and so went into this puzzle. Two years of combing through prenatal records, birth records and pictures...all had to fall into their own spaces.

And honestly, for the first time in two years, I'm comfortable with the answer. It finally feels true. Yes this happened to her. And this is what is left as a result. Now that I'm at the diagnostic finish line, I have so many other things I want to say and resolve....like how I was treated while I was pregnant with Lola....about her first few days of life when we were told "babies feet often curl in because how they sit in the womb." How instinct and maternal knowing was brushed off time and time again, until the evidence was glaring. The apology I would like to hear from the person who might very well be responsible for what happened to by child. The one I'll never hear. But those are separate posts. And while I'm 100% certain that Lola deserves that apology, I saw at least 20 children, more impaired than Lola, that need to hear it more than she does.

I don't have a nice wrap up for this post. I'm listening to Lola snoring in her room and realizing I've let her nap too long, so....the realization that sleep is going to be rough tonight is setting in. But maybe I do have a wrap up, because just now...typing that very mundane normal thing, it hit me that Lola's life is way more typical than atypical. Like any other two year old on the planet who has napped until 7 at night, she will be up terrorizing us well past an acceptable hour. Good for her really. I hope she has blast doing it.

Insert Witty Title Here

I've been scolded recently, very recently for not being more cheerful about the life I've been given, more specifically...we as a family have been given. I'd love to say something profound, but this at the core is not profound. People survive, cope, and thrive in many ways. My way is just not as sunny as others.

Now I know, I do....I love reading blogs and posts from SN parents that are super "Yay my kid" and "I wouldn't have it any other way" I have a few myself that come a smidge close to that. But while those are lovely and leave warm feelings and happy tears for all that read....that isn't my reality.

People assume that this means I am weathering my life with less Grace than others. And I assure you, it's not that. Because I believe that Grace includes transparent honesty...even if that honesty doesn't leave people wanting to sing "You are my Sunshine" and sit around pretending the disabilities no longer create road blocks for children.

No. Having a fierce outlook, not what others perceive to be Grace, is what gets a person ahead when road blocks are everywhere they look. Will. Will to overcome....even if it means you are not sunshine and roses about it. I'm not sunshine and roses, and neither are my children. I'm okay with that.

While sunshine and roses posts make people feel good, they do not achieve the goal I have in mind when I post about my life with these children, the goal of helping other SN parents not feel so alone. If everything feels like shit...because your reality is shitty and all you come across are people telling you how happy you should feel about it....well, that's pretty isolating isn't it? So not only am I in hell, but it's also a hell built for one? I don't think so. As I see it, SN parents are already isolated and marginalized by society, they don't need to be marginalized by other special needs parents.

And if you think it's untrue.....join a mommy forum and bring up a topic specific to SN parents, watch as the pitch forks come out. The truth is, everyone wants to say they are open minded, inclusive, compassionate, understanding....but just mention Autism...accomodations....developmental delays and watch the Neuro typical brigade make an ass out of themselves. No. People get enough of that, they don't need it from me as well.

So it's a new year and I should be posting something deeply introspective, upbeat, and blah blah. But I'm not. Because my reality is that home with my two kids...it's sad and it's hard. Yes we are happy, but it's bittersweet and it's wicked hard work. And then I go to work, in a town filled with sadness, everywhere you look. Poverty, homelessness, drugs....death...neglect, sadness. And while there is a reason filled with Grace, that I am there. A desire to do the most good with my specific talent. It doesn't make it easier. It's a hard life. And I'm not all "Happy Happy Joy Joy" about it. It's sad. But you'll notice I never said it wasn't worth it. It is. So are my children. Try not to confuse that emotion with happy because they are not mutually exclusive.