You think the cable company makes you crazy? Try Mito Madness.

welcome to mito madness!

Yay! I’m starting a blog! 

I’ve been pondering it for years. Why not? I love reading other people’s blogs. I have a son with a rare and serious disease who deserves to have his story told, and a lovely group of family and friends who want to hear how he’s doing. And… I’m a writer! So… why not? 

For some reason I just haven’t been able to get started. 

Occasionally I journal on CaringBridge, although I pretty much save that for Coben’s major medical updates. So many people love him and wonder how he’s doing, and I feel bad that I don’t do a good job keeping everyone updated. I just don’t have the time. That’s the first reason I’m starting this blog.

Reason #2:  I need to keep better track of his medical stuff. 

Lately I’ve been documenting all of his  procedures, surgeries, hospital stays, diagnoses, medications, doctors, therapies, growth records, intake charts, blah blah blah into a medical program on my computer. I’m doing this so that when we see a new doctor I can show EVERYTHING. 

Maybe this is the person who can finally figure out what is wrong with my son! What if we finally have the right person listening, and I forget to mention an important lab report? A key symptom? A medication that didn’t work?

So, into the program everything goes. I have a scan of every doctor note and  lab report and have electronically attached them to their corresponding doctor visit or hospital stay. This process has consumed HOURS of my time for the past two weeks. And I’m only up to 2010. I still have 3 years to go! Yes, I know I’m neurotic. I prefer to call it “organized.”

Reason #3: I want to document all of these little but important moments in our lives.

As I go through this (literally) 6” stack of medical documents, I realize all that we have been through as a family, and all that Coben has endured in his five short years of life. It seems a little strange to me that it’s all just history now. Left to be forgotten. Even though it hasn’t all been good, cheerful, or positive, it is OUR history. It is inspiring. I want to remember where we’ve been so I can be proud of how far we’ve come. And I can tell you that 5 years without sleep or sanity makes it hard to remember pretty much of anything.

Reason #4: I want to help other families who are traveling down this long, curvy road of a medical diagnosis for their child. 

You really can’t understand until you experience the uncertainty, fear, pressure, workload, and constant heavy feeling of worry in your heart. Does Coben need a feed ? Did I miss one of his 21 daily doses of medication? Is he running around too much? Is he too hot? Too cold? Did he get his 64 oz of water? OMG – Did that child next to him just COUGH? My brain never shuts off, even when I sleep. Do I sleep?

Reason #5:  Maybe the right person will read what I write and say, “Hey! That sounds like my kid! And he has… (fill in the blank with correct diagnosis)! And the cure is (fill in the blank with the miraculous cure)!” We will all jump up and down and cheer and be eternally grateful. It could happen!

Reason #6: (this one just came to me) In this house there’s always something going on. Every. Single. Day. Gross, hilarious, concerning, inspiring, depressing, encouraging. I need to talk about it or I go crazy. I hate burdening my friends with the same old stories about how much work it is to take care of the COBE-ster. I hate pouncing on Joe when he walks in the door to share the latest symptom or complain about how many times I had to clean up puke that day. This is the perfect way to get it aaaaalllll out. Even if nobody reads it, my mind will be clear!

Reason #7: The most important reason, and the one that actually made me sit down and start writing, is that I know how just precious Coben’s life is.

Last night I was reading another mother’s blog. She has a child with a urea cycle disorder, which also requires a military-esque g-tube feeding/water/medication schedule. She also holds the responsibility of staying alert every moment of every day and every night to keep her child alive. Her words helped me understand why I constantly take pictures of Coben. Walking down the hall. Waiting for the bus. Sleeping. Catching snowflakes on his tongue. Sitting in his car seat (which, by the way, I just did today). What if tomorrow he isn’t here? I NEED to remember every single moment. I don’t want to forget anything.

We don’t know how his disease will progress. We know that just catching the flu can take him away from us. I want to remember every single moment, good and bad. Just in case. You know? (Thank you blog-friend Mindy for that revelation. You are an inspiration!)

See? Seven awesome reasons!

I do, however, have one rather large hesitation.

Reason #1 to NOT blog:  I don’t want ANYONE to feel sorry for us. We are strong! We are happy! I have a wonderful husband who is a dedicated father, makes me laugh, and helps me stay sane. We love our children, we are a great team, and we have a great life!

Although I’m sure many days I’ll whine and complain and sound entirely pathetic, I am NOT looking for sympathy. Deep down I know that Coben will be with us for many, many years. I have to believe that. I don’t consciously worry that we’re going to lose him. But that nagging “what if” is always there, in the back of my mind. I really hope blogging will help me let it go.

There it is. Reason #8.

Hmm… I guess I just had to convince myself. Why did I wait so long?

1 Comment »