One of those moments that comes around

I don't sit around feeling sorry for myself... or for Boo... or for our family. It's not what I do. Boo is just part of our family and that's normal for us and life goes on and the days come and go like in any family. Maybe a little more chaotic, maybe a little crazier, maybe a little more difficult than some families but it's our family and it's all okay.

A long time ago, well relatively speaking, I accepted that Boo is who he is and "it is what it is." It was a long process. Hell, it was a long process just understanding and coming to grips with the reality that Boo wasn't going to "get better" some day. That magical day when Boo would "get better" wasn't really ever going to happen. He's ALWAYS going to have a brain injury. He's always going to have a harder time in this world and have to work ten times as hard to accomplish those things that typical children do easily and without thought. When he was little, really little - just a tiny baby, I used to tell myself that if I could find the RIGHT thing... the RIGHT toy, the RIGHT piece of equipment, the RIGHT developmental thing he would "get better." I spent a lot of money buying THINGS thinking that if I just found the right one Boo would get better... Boo would be okay and everything would be wonderful and perfect and he wouldn't have the problems he has and there would be rainbows and unicorns and peace in the world. Yup. I believed all that... ME... the cynic. I bought it hook, line, and sinker because I needed it then. I needed to think that there was something *I* could do to make him well... there was something out there that I could buy or do or help him with or work with him with that would make him typical. I was........... oh I don't even know the word for it..... I was dreaming... I was believing in a false hope.... I was living for something that could never be and not seeing what was right in front of me and how amazing and wonderful and perfect in his own way our Boo was.

So time went on and it was hard... I don't often talk about how hard it really is sometimes (because other times it's not really hard at all). My heart broke and I realized that Boo wasn't going to get better... I mean he gets better and better every day working and struggling and showing us his inner strength and determination... but he wasn't going to "get all well" and be typical. I mourned, I grieved, I ached all over and cried and cried. Then, when I came out on the other side of all that, I looked at Boo and I was able to fully appreciate him --- maybe for the first time ever. He's not like other kids. He's not typical. He's special, he's magical, he's beautiful and loving and sweet and amazing and strong and he has taught me so much in his three short little years of life. He is pure... pure of spirit and heart. He loves with his whole soul. He has a spirit unblemished by the manipulations and machinations of real life. I am so lucky to have that boy I don't know why in the world God would chose to bless me with this amazing life. I feel unworthy sometimes, like I don't deserve such a blessing in my life.

Today is one of those days though. Today I'm hurting and I'm scared. Today is one of those days that the reality of Boo's medical issues hits home and it takes a hold of my heart and squeezes and hurts. We've had to make really difficult medical decisions for Boo in the past. It's never easy. It's never something done without thought and research and soul searching and talking... lots of talking. So here we stand again on the verge of a major medical decision for Boo's life and it's frightening. All I want in the world is to make the right choice. All I want is to do the right thing. I want to make Boo's journey in this life as easy as I can by making good choices and good decisions for him. Sometimes there's no way to know what the best decision is though and it's the kind of thing that keeps me awake at night with my mind whirling at breakneck speed racing through all the possibilities and permutations and outcomes and I have what The Man calls a "mental avalanche."

Today I'm struggling. Today I hurt. I'm sitting here listening to my "Boo song" and crying.... and then switching over to Spanish songs to hear that language that somehow assuages my soul and make me feel safe and secure and protected like when I was a little girl.

It's one of the hard days today. Maybe tomorrow and the day after too. Maybe on and off for the next month or 3 months or 6 months or a year until we come to a place where we have to say "this is it" and move forward. I hate days like today. Thank God they only come once in a while I guess huh?