Acceptance

We're still here! Before I start, how cute is this picture in the swing?!? I LOVE it! He is saying "yeah!" The best part of it... his left arm is UP and his left hand is open. This is not something he could have done several months ago. This is HUGE!

I think this is the longest I've gone between updates - I just put a few updates up for September. I really don't have a good excuse other than pure procrastination. I've had trouble getting into the "zone" to sit down and write after a long day. Truth be told, I've been in a bit of a funk lately and have had several down days where its been difficult to write from a positive perspective, or to have the energy to express my emotion. Lots of good things are happening with Lucas, don't get me wrong... but there are some days when what we are dealing with is just simply... overwhelming.

I feel like I've been in a bit of denial, not wanting to admit some of the things we are facing. Its a difficult position to be in because I am trying to be as positive as possible for Lucas and we celebrate every little change that he makes, but I can't escape the reality of his condition. I've honestly been thinking that if we provide enough therapy and if I can just get him to "catch up," that we can forever escape the label of being disabled. I've had a particuarly hard time lately seeing other children pass him and do things so effortlessly... because now they are not just passing him anymore, they are lapping him. Some days I'm so optimistic, but other days I'm scared to death for his future.

"If it looks like a duck, walks like a duck, and sounds like a duck... its probably a duck." That phrase keeps coming to my mind lately. My son has Cerebral Palsy. There, I said it. I haven't wanted to admit it, and certainly have never said it proudly like I have heard from other mothers in similar CP situations. This is in part because I don't ever want to label him, and the other is because I just plain hate it. I don't want it to be true! I want to go back in time, keep him safe, not have him be born early and live a life with so many challenges.

Yes, his vision is getting better every day... and I thank God for that. And he is getting stronger every day and his little voice and words lift me more than I can explain... I am so grateful for that too. I know that we've come a long way! I love the fact that he can see our cat walk into the room and excitedly says "de-de!" every time. Two years ago I never would have predicted it. But at the same time... I recognize how far his vision is from "normal", that although he is able to see objects and recognize faces, it may never be enough for him to read, walk, or judge depth and distance. I know that people notice and don't understand his nystagmus, his pupils moving back and forth is not something you typically see. I was asked point blank on the plane the other day, "how's his vision?" So I get it. Even though I hardly notice it, I know others see it.

His head is often tilted over because he sees stronger from one side and his torso doesn't have an even amount strength on both sides of his chest (causing him to compromise by tilting his head). His hamstrings and his left arm spastically tighten up whenever he tries to do anything, which keeps him from moving and progressing to the next level, or sitting in certain positions. The progress is so painfully slow. We're working on it and we will continue giving him every ounce of therapy that we can afford, but some days I question if it ever be enough?? The guilt I feel of not doing enough is sometimes insurmountable.

So I've explained how I've been feeling for the past several weeks, let me tell you about my day this past Friday. On the way back from his therapy, we stopped at Babies R Us. Lucas was sitting in the front of the cart and the sales clerk started talking to him, asked how old he was, etc. I gave my standard answer of "He's 2 1/2 but he was born really early so he's small for his age." I always feel like I have to say something like this because he looks about a year old. Its easier to just give that disclaimer rather than dealing with the strange look or comments that usually follow. So, that was the only thing I said. She then said, "I worked with handicapped children for 7 years, I just love 'em".... as she turned back to talk to him again. She was referencing HIM! She then said in a sad voice, "my cousin has a son with cerebral palsy"... in a "oh pity the poor soul" kind of voice. I couldn't believe it, I guess she was trying to identify with me, but it was not something I was ready for. I didn't say he was handicapped (nor would I ever use that word at this point). I didn't say a word about his challenges or therapies. She made this assessment just from the way he looked. I remember thinking, did this really just happen?

In my mind, he is perfect. I know that he may not look like other children, but its another thing to have someone blatantly point it out and label him "handicapped". He's also been through SO MUCH more than other children! More than all the adults that I know! I wanted to scream this at her. He's not strong yet, but he will be, he is working so hard!! I got out to the car and completely lost it, it was like all of my fears and denial about his condition hit me in the face. I could barely get it out when I called Bran because I was crying so hard. I know this shouldn't have bothered me so much, she didn't say anything cruel, but it was the first time I really ever had to hear this word (while someone was referencing my son). I kept thinking, is this the beginning of him having to deal with people looking at him or labeling him because they feel he is different?

The positive side of this story is that I am trying to come around to acceptance of this thing called CP in our lives... and to not be afraid of it. It does not mean anything, its just a label for an enormous spectrum, and I truly believe we escaped things being much worse. I believe he will overcome this. The irony of the comment that made me melt down, is that several days before that happened, I ordered a few books on CP thinking that I needed to admit it and get more educated about it. A day after that incident, the books arrived. I truly believe that things hurt when we have not arrived at some kind of "acceptance." Think about it, many things that hurt are things we just don't want to be true. There have been times in this journey that I've had to give up on certain dreams and accept and embrace what we have been given. As soon as I have been able to get to a level of acceptance, the pain dimnishes. I know I have a long way to go as the tears still come often and the pangs of jealousy when seeing other children will always be there, but I'm trying. It is what it is, and Lucas will get there on his own time, or maybe he won't get there at all... and that has to be ok too.

A fellow preemie mom posted this quote last week on Facebook and it really hit home with me, her timing was amazing. I know that Lucas is exactly who he is supposed to be, he has already changed so much in me, and all the people that he has touched. I know for a fact that he is my teacher.

"For all we have been through, there is so little I know for certain except for maybe this: Motherhood is about raising--and celebrating--the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be."

Ok, enough emotional stuff... we're all good and we're on the right track, just an emotional several weeks that I thought I'd share (and the reason for my writer's block)! I am so grateful for the blessing that he is to all of us - he truly is the light of our lives. He has a way with making your heart melt with his infectious smile and sweet little voice, the highlight of my day is the minute I see him in his crib in the morning or walk into a room and hear "Hiiiiii!"... usually followed by "UP!" There's never a waiting room where Lucas doesn't draw in every single person in there, saying "hi" to every person and making them smile. He has a certain "something" in his personality and demeanor that I just can't describe. You just have to know him.

A few weeks ago I posted a video on the right side of this blog... the lyrics in "I Just Call You Mine" make me think of Lucas every time I hear it and how he has enriched our lives. The video has a lot of couple stuff, but the lyrics fit life with my little hero. "Everyone that sees you, always wants to know you. And everyone that knows you always has a smile. ...Everyone calls you amazing. I just call you mine." Lyrics

Here are a few cute pictures from a few weeks ago of Abby playing in the grass with Lucas.