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.

Refresh Everything

Each month pepsi is giving 1.3 million in grants to people/groups/organizations that have refreshing ideas. Each idea is voted on by people like you and in the $250,000 category, the top 2 ideas receive funding. It is a very refreshing program.

Now, I need your help. Colton has been receiving vision therapy from VIPS (Visually Impaired Preschool Services) since he came home from the NICU in May 2008. VIPS has been serving children who are blind and visually impaired for 25 years in Kentucky. Ms. Dixie (his teacher/therapist from VIPS) has been a blessing to say the least. There are two offices- Louisville and Lexington. The teachers travel most of the state to provide therapy and education to the children in their homes. Louisville's office started a preschool program to provide more services for their children with visual impairments. This state of the art facility is not only used for the preschool but also provides programs for children birth to three that are visually impaired. The Lexington location, wants to do the same for their children. The problem is their current building will not house a licensed preschool. To see this dream come true to offer more programs and services to children in the Central and Eastern areas of KY they will need to move to another facility. With your help, this new facility will provide children with an enriched educational environment that will meet their needs for hands on learning and meeting their developmental milestones.

Needless to say, this would greatly benefit the visually impaired children here in our area and you can make this happen by voting for VIPS' idea. How? you ask. It's easy! You can vote once a day (from now to Dec. 30th) by visiting here AND by texting 104721 to 73774. You can vote online as well as by text everyday. We have a great opportunity to help these children be better prepared to face a world full of challenges.

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.