For those of you who may not have read about baby Ezra, please head over to Manic Mother and do so. With my own sweet Katrine just a breath away from 2 years old and my own Ian in and out of the hospital with a terrifying diagnosis, I can't help but feel connected to this mama somehow.

I hope you'll consider popping over and reading her story. Maybe tweet it, Digg it, or even donate if you have the funds. I understand how financially straining it is to not have enough for gas to get your child to the hospital, need a more reliable vehicle or have an extended hospital stay in which you have to feed yourself.

Thanks everybody. Love to you all.

Friday Fun

Today was a hit with my little guy. Because of the MD and how it's effected his body, going to the park has been something he's only dreamed of doing for the last 2 years. For Ian, climbing on the play structures is an impossibility and swinging is entirely too hard on his back. We found out about a park in Nashville across from the children's hospital he's treated at that has handicap-accessible play structures and modifications to all the eqipment that would allow him to play like any kid. How cool is that?! Unfortunately our plans were foiled by scattered thunderstorms in the area so instead, we went to a local park to see if we couldn't try our hand at learning new ways to play at the park.

We chose a rural park near the military base and accross from some horse stables. Driving down the country roads with the windows rolled down was, in itself, a great way to spend the day. The kids loved seeing the horses at the stables as we neared the park, so that was a second score for team Ybarra. The park itself, play structure-wise was nothing to scream about but as it turns out, that was okay because it wasn't the equipment he was interested in. It was the stream. He loved sitting on the bank playing with sticks and watching the ducks. There was a waterfall and he was totally into that too. He wanted to see it up close so we ventured into the wooded area to see how close we could get him. As it turns out, getting close meant a hike and some mild rock climbing. So, John put Ian on his back and made the journey while I followed along with Miss Kitty. It was tiring but so worth it. We got the head of the waterfall where there was a large platform made of flat rocks and another smaller stream up top.

Both Kitty and Ian had a grand time splashing in the water, looking for bugs, climbing on things and just generally being kids. It was the first time in a long time I got the feeling that Ian wasn't being cautious because he was afraid of being hurt. He smiled (in his own Ian way) he laughed, he made monkey noises, he just had a good time.

It's funny thing things you take for granted when you don't know anything different. I was left thinking on just a few years ago when in Germany we took him to the park all the time. I remembered watching him climb, run and swing his little heart out and never once did I ever dream that I would be here. That when that little child was 8 years old, moments like these would be so precious. Yet, here we are and the funny thing is that while I wish against hope it were different, I feel so fortunate to be able to have the gift of taking the smallest moments and triumphs and keep them in my heart like I do now. That's one of the aims of this blog for me, to share my family with others and to encourage all parents to do what I've been forced to learn to do. But I digress...

So Ian had his first hike ever, his first very first waterfall and his first park in years all in the same day. Me? I had a moment of introspection and some fantastic photo ops.

What a day!

No, I'm not okay. Thanks for asking.

Ah yes, an even deeper foray into the life of yours truly. You see, my 8 year old son has Muscular Dystrophy. This isn't usually a conversation starter for me but this is a blog, and it seems that as a blogger, it's my duty to peel back the layers and expose these bits of my life. So there you have it. My 8 year old son has Muscular Dystrophy. Infantile Onset Facioscalpialhumoral Muscular Dystrophy actually. This means that my young child over the last 2 years has lost much of his ability to walk, see, hear and has a complete palsy of the face. This means that because of about 100 doctor's appointments this year I've had to remove him from school to save him the embarrassment of failing the second grade. (However, this has turned out to be a boon for us. I'll blog more on this later.) This means that he must wear, on a daily basis; glasses, hearing aids, AFO's (leg braces) and let us not forget the oh-so-stylish gauze dressing on his feeding tube. Then of course there is the ultimate accessory, the wheel chairs.
It's a funny thing when you have a child with issues like these who can't leave the house without a truck load of equipment and who, everyone knows, will never get better. People ask the same thing over and over. "Are you okay?" Funnier still is the reaction we parents are expected to give. "Yes, I'm fine!" and "there's a reason for everything", or "I was only given the challenge because I could handle it". Most people don't ask you this question expecting to hear the truth. My truth? My truth is that no, I'm not fine. I'm pissed off. I'm pissed off that my child is being given such a raw deal. I'm pissed off that he has the grace to except it and that I don't. I'm pissed off that I worry every day about him and I wonder relentlessly if he'll ever be able to live on his own, have a lover, travel somewhere fabulous, father a child, live in a dorm, kiss someone, and and...
I'm coming to understand that it's okay to not be fine. I am always fine when I'm with him. I'm always together when we see his doctors, I rarely let myself not be "fine". But every once in awhile, when I'm all alone, I give in. I let go. I cry, I scream, I throw things and at those times I yell to no one and to everyone, "NO! I am NOT okay!" and you know what? I'm okay with that.
Here's the thing. I'll never be "okay" with this. I have, however, learned so much from this child and from this disease. I have learned patience, righteous anger, the true meaning of beauty, I have learned that I can be a kick-ass mom and that I have more strength than I ever though possible. That John is a fantastic father and that together, we can handle anything. I have come to understand that my son is incredible. He is the most adaptable being I have ever met and my heart bursts with pride when I think of how he has come to live with his ever-weakening body with acceptance, grace and with just enough of a stubborn streak to refuse to take this lying down.
Am I okay? No. Am I getting there. You bet your ass.