Moments

Today was one of those moments that I know I will treasure forever. Colton graduated from his first year of preschool and walked to his seat with his walker and a little assistance from one of his teachers. This is the farthest I have seen him walk since getting sick this winter. The whole cafeteria was still and you could just feel everyone rooting him on silently. It was a moment that I cannot describe in words but luckily Daddy had the camera handy.

Christmas and New Years in a Nutshell

Colton has been sick the WHOLE month of December and so far in January... Ear Infection, Croup and now some type of Respiratory illness. He has been miserable. We have been to the hospital for blood work twice, admitted once for dehydration and I've lost count of our trips to the Pediatrician. They have tested him for flu, RSV and strep, all were negative. At one point he was so sick that we had to restrain him to keep him from punching himself in the face (like hard, with blood). It's been so rough on him and sometimes he grabs my neck, squeezes me and says "Mama" in his hoarse little voice. I can tell he wants me to make him feel better but I can do nothing to make him feel better. It is the most frustrating thing in the world.

Right before all this started we went to Michigan to see Dr. Trese (Colton's Retina Specialist). They did an exam under anesthesia and determined that his retinas were still attached (good news) but there had been no improvement (bummer). I have completely accepted 100% that my son is blind... it is so weird to say that so bluntly. I usually say visually impaired or "he can't see very well" but I am finally comfortable with using the B word. Today at the Pediatrician I saw a little boy admiring the fish that were on the waiting room wall paper, I had a moment of sadness thinking about simple things like that that my son will never do. I took a deep breath, looked down at my little man and smiled. He is amazing and smart and happy and my little miracle. There are so many things he will be able to do!

One thing he has been doing (and LOVING) is going to school. He has been on Christmas break and every time we say something about his teachers or classmates his eyes light up, he will go back to school next week as long as we get all this sickness straightened out.

So that is just a little update on us Darnells. 2011 is going to be a great year, I just know it.

School Days

The first question I have been asked by everyone on Colton's first day of preschool... "did you cry?" NO I did not. I wasn't really sure but I didn't think I would. Like I said yesterday I am just so thrilled that he has made it this far. Three years ago he was in the NICU and they weren't sure if he would even make it through the night. Now, here he is going off to preschool. It's amazing, I am so incredibly thankful. I guess the joy trumped the tears today, I know for sure that my heart is full of it!

This morning Daddy brought out the video camera while we were heading out the door. Enjoy!

Ready as we'll ever be.

WOW! I cannot believe tomorrow my little boy will start preschool. It seems like just yesterday I was discussing the subject with his therapists, only for them to respond "oh, Crystal, preschool is so far away". You see, I like to have a plan, the plan doesn't always work out but I need to at least have one. The first step of the plan has been to get him as prepared for preschool as we (our family and his excellent team of early interventionists) possibly can. Everyone, especially Colton, has worked incredibly hard to get him to this day.

Last week, we had our last visits ever with Ms. Dixie and Ms. Suzanne, his vision and physical therapists. They have been with us for so long, we are all really going to miss both of them. I'm pretty sure I wouldn't have made it through these last three years without them.

Colton is attending a public preschool here in Frankfort. We have met with his teachers and therapists there and already feel very strongly that we made the right decision to send him to this school. Colton's eyes light up every time we mention the word "school", he is ready. Everyone has warned me that I will cry tomorrow, I don't disagree, I might but more than anything I am excited. Excited that he has made it this far, that he finally gets to do something other kids his age are doing, excited that so far the plan is working and we are on the right track.

His IEP is in place, his backpack is packed and he is tucked in bed dreaming of finger paints and activity centers. WE ARE READY!

Changes

We have had Colton's first preschool meeting (there are a few left) and are in the process of touring schools and getting evaluations completed. Can you believe in TWO months he will be THREE, I sure can't believe it. We are choosing between two local schools right now. One has a smaller class size (think 9 students) while the other is closer to home. There are pros and cons at both schools but Seth and I are just trying to make the right choice for our little boy. Tomorrow we tour the second school and have to make our decision very soon after. We are making lists, researching and praying about it a lot, his education is extremely important to us, especially with all the challenges he faces now and will face throughout his school career. A lot of people keep telling me "it's just preschool" but to me it is sooo much more. This year will set the tone for his entire education, yes things can change (get better or worse) but he is very at risk for falling very behind and we need to make sure the people responsible for teaching him are capable of helping him to transition into a classroom of same-age peers. Luckily, he will have three years to do this. His birthday is in November, preschool here starts at the age of three. The year after you turn five you enter kindergarten. So, he will turn five in November 2012 and get to stay in preschool that whole school year, starting K in fall 2013. His birthday works to his advantage in this case (unlike when he was born).

At three we face another big change also, he will lose the three therapists (OT, PT and Vision) that he has had since he came home from the hospital. They work for the state's intervention program that ends at the age of three (because preschool starts then). He will still get these services at school and will also be visiting the local rehab center but we will all miss his therapists soooo much. They are amazing (an even better word than amazing that I can't think of right now, it's late) and are the main reason he has made it as far as he has in this journey. Not only have they helped Colton but us also. When you find out your child has special needs (and aren't familiar with this "whole new world" already) you feel so lost and confused. These women have made me a better parent to Colton, helping me to navigate and master these unfamiliar roads. I will always be thankful for everything they have done. Like I said, we will ALL really, really miss them.

So tomorrow we make a decision, a decision that, in my opinion, will impact the rest of our child's life. Wish us luck.

My Green Monster

I have a monster. No, not a monster in my closet but a monster none the less. My monster is green and big and hairy and ugly. My monster has a name, its name is jealousy. I'm not jealous of the things other people have, I am jealous of the things other people (mainly other people's children) can do. To admit this to you all makes me so ashamed and embarrassed, I want to stop typing, I want to turn of my laptop, pull up my cover and drift slowly to sleep. But, I CAN'T. This monster has been haunting me so badly for so long and it is very important for me to be honest and not keep this monster locked inside.

Most of you know Colton's story, he is my miracle boy. Being born at 23 weeks, 6 days is not an easy thing to do for anyone, especially a one pound fragile newborn. Because of his early birth he developed brain bleeds that eventually led to brain surgery and brain damage, this is the primary cause of his CP. Not only does his development suffer neurologically, he is also 95% blind, another disability stemming from his premature birth. Needless to say, Colton is significantly behind his peers developmentally. I knew this would be the case from the beginning, everyday people would remind me that he was born four months early and that he would be 4-6 months behind other babies born the same time as him. I was prepared for that. What I wasn't prepared for is the fact that now, at almost three years old he would not be even close to "caught up". If I had a dollar for all the times I've heard "remember, every preemie develops at his/her own pace" I would... well, I'm not sure what I would do but I would be a very rich person. I know this already but it doesn't take the sting away when you watch a baby two years younger than your child walking around without a care in the world while my little man is stuck crawling around on the floor. I've watched the children of my friends, family and even strangers develop at what seems like breakneck speeds, they are all passing us by. My green monster grows a little more each day, I feel like one day I might just explode.

I've talked a lot about "I" in this post. Yes, selfishly, I am jealous for myself. I want to be able to watch my son take his first steps someday, hear him ask me a question or just be able to communicate with his peers. I want all this for me, yes, but I want it for him 1000 times more. We head to the hospital at least once a month to visit various specialists and as soon as I take a seat in the waiting rooms Colton is wiggling trying to get down and play. Hospitals are germy, I can't imagine letting him crawl around on those floors but I see other kids smaller than him walking around freely and it makes my heart hurt. He would be so much happier walking, I know he would. I want this for him, my green monster grows even more when I think of all the things he would love to do but can't. I'm sure that two months from now, when he starts preschool, he would be so proud to walk across that threshold into the classroom that he will spend the next three years, I used to be sure that would happen, now not so much. He tries so hard but he has so many things working against him, it's so hard to watch and so horribly unfair.

I usually try to put a positive spin on all my posts but I just can't today. My heart hurts too bad. I'm sad and scared and angry and extremely jealous. I'm ashamed of my green monster but I just can't seem to shake him. At least now I am one step closer to setting him free.