Never Anyone Like You, Ever In The World

"On the night you were born,
the moon smiled with such wonder
that the stars peeked in to see you
and the night wind whispered,
"Life will never be the same."

Because there had never been anyone like you...
ever in the world."

~ On the Night You Were Born
    Nancy Tillman


When I first read that paragraph in the middle of a Barnes & Noble a week before Christmas I immediately started crying. It just hit me in a raw spot of my heart. All babies are unique and different and are their own snowflake. But Charlie is literally the only one in the world with his mutation and who knows if there will ever be anyone else in the world with the same. The life will never be the same part is the other part that got me. Because really, life never will be the same. Genetic mutation or no genetic mutation Charlie was always going to change our lives. But this is quite a shock and honestly more than we bargained for.

When you are deciding to have children sure you sort of discuss the possibility of having a special needs child and say "oh, we can handle one" because really you don't expect to have one. It's easy to dismiss that concern of what you will do if you have one because what are the chances you actually will? So here I am, life forever changed and most days I feel a mess. I have a special needs baby, I have a spirited (wild wildabeast/godzillaesque) toddler & a teenager to try and raise. Some days I kind of feel like a rock star like I have totally got this down pat. Most days however I feel a fucking mess and like I'm just drowning and failing miserably. Some days all I want to do is scream and throw a fit and rant about how this shit just isn't fair. Honestly I don't do it though, I try and just hold it together because even if I throw a fit at the end of the fit I still have a special needs baby. I still have a wild and crazy two year old. I still have a teenager who goes from sullen, to happy, to weepy in the blink of an eye. All the fits in the world aren't going to change a fucking thing.

We got news from Oncology I don't know how to label it, good, bad, in between? Charlie's mutation are in all the cells of his body not just his white blood cells. This is good because it may mean that he will not have to have cancer treatment. There are around 12 people in the world with this mutation and JMML 75% of them did not need treatment for their JMML. Charlie's mutation is nothing like their mutation but as he is not getting worse and in some ways his counts are getting better they have a lot of hope that he won't need treatment. This is a sigh of relief because honestly 6+ weeks in the hospital was depressing me and freaking me out. I mean what were we going to do with the other two kids for that time? The other part is they weren't that convinced that Charlie's body could handle treatment. They felt very strongly that instead of a private sterile room on the oncology floor he'd have to ride out his treatment in the PICU because he has so many other problems.

The flipside to all this is that his mutation being in all of his cells...means more possible delays. More possible disabilities, more possible anything. Of course as per usual we just don't know. I was convinced that my many years of viewing doctor shows had prepared me and taught me how things worked. I thought after our ordeal with Jeremy being in the hospital and being diagnosed with all kinds of things I knew what I was doing. I knew that they ran tests, gave answers, treatment happened etc. I was not prepared to have no answers. I was not ever prepared to have doctor after doctor specialist after specialist tell me that they just don't know. So we don't know and time will tell.

I'm so mixed up about all this. I am baffled by the idea that there is a cancer that may just go away on it's own. I am grossly unprepared for a baby with special needs. I am grossly unprepared to go to a million doctors appointments and keep my shit together. I don't know how to do any of this and I don't know that I can. I know that I will do it all because I haven't been given any choices and because I'm a mother and mother's don't quit. But I have no idea if I will be doing it right or screwing all the kids up, screwing my marriage up and giving the cat complex issues.

My mother keeps saying she doesn't know how I do it and if it were her she'd just break down and be unable to do it. I honestly think that's bullshit. I would think that of any parent who said that. Even if you don't know what you are doing, even if you are bad at doing all of it you will most likely do it. You will keep going because someone out there in the universe placed their trust in you to take care of this unique human being and keep them going. I am very blessed to have Charlie in my life but some days I feel like I am part of some giant cosmic prank and Ashton Kutcher is going to jump out and say "gotcha"!

Ending this post on a high note Henry's test came back negative for genetic mutation. He's still wild and crazy but we don't have that hanging over our heads anymore. So I guess on that front Universe - 0 Me - 1.