Friday, June 8, 2007

48 Hour Blog

So, I had a mini breakdown last week. More of a crying jag than anything else. I just couldn’t understand why I wasn’t handling all the therapy, all the tantrums, the lack of sleep or the inability to get anything done ever … better.

Why is it so hard, so tiring, so draining? I kept thinking about all these pretty, glowing and happy mom’s I see everywhere and I just couldn’t figure out why I felt so weak. Why it is all so hard for me, why I feel so bitter and so angry. Thankfully, finally I realized it IS hard, it IS exhausting, it IS depressing and I have every right to be overwhelmed. It made me feel a lot better to realize that I am only human in so many ways. This got me thinking, as I have often, that having a child with special needs is in so many ways like loss, or waking up and realizing you are paralyzed or blind. I know, it sounds horrible, but it’s like the death of expectation or the death of life as you knew it before. It alters every dream you ever had…it changes the relationships you have with every person you know from your husband to your parents to your other children. It changes how you do your job, your faith and everything.

The key to all of it is to not get stuck right there. It feels like a powerful whirlpool and it can be devastating. The key is to make new dreams, set new goals, get a new job, let everyone around you know how much you love them, but that you just might not be there for them as much. It is actually kind of cool when you really think about. All this thought led me to thinking about paraplegics, that guy who cut his arm off to save his life, people who live with cancer. There are so many heroic stories about people who thrive after trauma and people who choose to live better than they did before. I know that everything will get easier (ha! It better) and I know that I am unbelievably lucky to have such an amazing husband and supportive family and friends. I just worry about people who don’t and I wonder how they get through those difficult days. I am continually jealous of people who look at it all as a gift or a blessing and never question the path God has chosen for them. I am jealous of people who smile better than I and laugh more and find time to give back to the community. I guess when it all comes together at the end of the day, each of us handle this gift different.

So, my missive this week is to go ahead and cry. Some days just really suck and as silly as it sounds…do everything you can to make yourself better than you were before. It’s a lot better than sitting around being pissed off all the time.

Did I mention that part of this whole emotional roller coaster is schizophrenia? One day you feel like everything is crap and the next day you feel guilty for feeling that way. You wonder what the big deal is. Therapy is not so bad and you feel enormously lucky to have such amazing therapists. They touch your life and the life of your family in amazing ways … every single day. Your child is beautiful and his laugh makes people giggle. Even people that frown all the time light up when Miles is near them. They reach out for him, they coo at him to see his smile and it is all amazing and so utterly beautiful that you feel inconsequential, like nothing in the face of the beauty that is your child.

Joe and I talk about how TV, movies and life, generally prepare you for pain. You are pretty sure you’ll live to see your parents die. The Lifetime network prepares women to be beaten by their husbands, schools them on criminal terminology, prepares them to be cheated on by their husbands and vise versa. In the back of our minds, we are all prepared to have a child who battles and overcomes cancer, or succumbs with untold bravery. But, it seems that nowhere are we prepared to deal with a child with special needs. I, more than most, am lucky in this regard, as my mother has worked with adults with different abilities in all ranges. So, at least I have a little bit of background. The point here is that I would imagine, with or without lifetime television, none of us are working from a script. So, we don’t even know how we are supposed to feel. Today, I feel like I have the most beautiful child in the universe and that is enough for me for today.

In conclusion, I firmly believe that Miles laughs much more than he cries and his inspired romp through this life is miraculous. Thus, I feel alive and vigorous by the strength and happiness that Miles carries on throughout his life. So, when he reaches over to give me a kiss at the end of the night with a huge, patent smile, I know that everything is worth it. Miles is amazing and his happiness erases all of those times of depression, trouble and doubt. That’s where I’m at.

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