Cast of Characters

Kristine: mommy, friend, wife
Web: daddy, husband, man of reason
Caroline: Sweet Caroline, daughter
Kelsey: Sweet Precious Angel, miniature schnauzer, ruler of the house, protector of family
Robert Joseph: baby boy

Wednesday, December 29, 2010

Discrimination

Today I experienced discrimination for my 1st time. At first, I didn't think of it as discrimination, until I looked up the word.

treatment or consideration of, or making a distinction infavor of or against, a person or thing based on
the group,class, or category to which that person or thing belongsrather than on individual merit: racial
and religiousintolerance and discrimination.

Yesterday, Web and I went to visit a mom's day out program at a very well respected church in our neighborhood. (I will avoid the name of the church just in case, but I am so tempted to throw them under the bus). It was great. We liked the director, we were only going to sign up for 1 day, and we told them everything about Caroline there is to know. Yes, she breaks, but she can crawl, sit, play, swing, feed herself, nap, etc. Yes, we have to be careful when it comes to changing her diaper or picking her up, but all in all she is pretty "normal". The director's attitude was simple. Let's see how it goes, and if they don't feel comfortable then they will talk to us and we will go from there. Done and done. I called her that afternoon and told her we would love for Caroline to go every Friday from 9-2. Of course, Web and I were apprehensive, but we felt confident that Caroline would do well. We even decided to wait until after her next PAM treatment, plus the director agreed I could come in and train the 2 teachers Caroline would be with every Friday. All was well. I asked a couple of friends about nap mats, and just this morning talked to a friend about labeling Caroline's clothes, bag, sippy cups, etc. We were so excited.

Well this morning, it all changed. Out of nowhere, we received a call from the director advising me that she had talked to her pastor and it was decided that they "were not equipped to handle her disability" and that they "can't afford" to bring in a 3rd teacher in the classroom. I was shocked. I just sat on the phone in pure amazement that this was happening. How could they do this to Caroline? She is totally innocent. She didn't ask to have OI. Yes, she has soft bones, but should she be punished like this? Well needless to say after I hung up, I got pissed. I called Web and told him while crying. After talking to him, I just started bawling. My sweet Caroline was being punished and I couldn't do anything about it.
I called the director back up and asked her again verbatim what was said. By this time, I was going to write a letter to this pastor and tell him what I thought. She could tell that this time I was past upset, and I wanted revenge. I want her to feel the pain I am in. Of course, I know this won't happen, but if she can just hear in my voice the disappointment I was feeling.

The thing that upsets me probably the most is this pastor. He has never met Caroline, never talked to us, and got all his info from a 3rd party. If he would have called me, I would have been more than happy to meet him and introduce him to Caroline. He won't even give Caroline a chance.
I wrote my letter and sent it to him with a picture of Caroline attached. I figured he should see the face of the little, innocent child that he was depriving of fun and learning.

So now what? Well Web and I have a lot to figure out. This was a private school we were trying to get Caroline into. OKC public schools are not good. But public schools, have to accommadate children with special needs. Web and I will fight tooth and nail to give Caroline everything she deserves. I will continue to write letters to people that are not educated in OI. I wish this was just a misunderstanding, it would make us feel better. We wish they could at least give Caroline a try. But like a friend told me today on FB, they should not have the privilege to get to be a part of her growth and development. They won't be lucky enough to know Caroline.

I know tomorrow is a new day, and this won't be as hard to swallow. But today sure did suck.


Wednesday, December 22, 2010

Merry Christmas!

It's been awhile since I last posted. It's amazing how a 1 year old mobile child will change your life. I used to be able to lay Caroline on my bed, and brush my teeth. I was able to put her in front of the TV in a bumbo pillow with some toys, while I took a shower. Those days are long gone. Not that I am complaining. I love it! But trying to get on the computer to update has definitely been difficult. I have had many friends call and ask how Caroline is doing. And I can tell you she is a different child! She is officially crawling forward. She will follow us wherever we go. She is trying to pull up and Web and I just hold our breath. Yes, we want her to continue being strong, continue being a mobile child, but we really don't want to spend our Christmas at Children's Hospital!

Some family members keep asking when she will walk? Well we hope not anytime soon. Her femurs are bowed.
Her left femur is bowed 70 degrees. If she were to stand up on it by herself without the standing frame or without her braces, chances are she will fracture. The PAM is helping her get stronger, and we are so happy about that, but who is to say it will help her enough to stand or walk? Plus, she has only had one infusion. We have many more in our future. Yes, she will walk, but chances are it will be with a walker or something similar to a walker that will help her be mobile.

That's enough about that, she is doing so well! Not only can she point to her ear, nose and belly. But she can point to her hair, stick out her tongue, play with her toes, wave bye, say "dog" and say "light"! It is so fun. I am constantly working on saying, "mommy or daddy". We'll get there sooner than later! She is definitely fun.

Tomorrow she and I are going to try a Gymboree class for crawlers. Last week we did the music class and she was not a fan of the drum. She was also not a fan of the kid that hit her in the head with the tamborine! After the new year, my plan is to start looking at Moms Day Out programs in town, and working with Sooner Start for physical therapy. We have a busy winter ahead of us, but we can't wait to see her grow in both mobility and developmental milestones.

We wish you all a Merry Christmas! I am adding a picture of Caroline with Santa. She is not a fan!
Love to all.

Wednesday, December 1, 2010

PAM update

Well, I am a believer. I cannot believe how awesome PAM is on Caroline. In the last month, she has come such a long way. She rolls from front to back and back to front. She can get in a sitting position from her belly, AND she is crawling backwards! HELLO. She has never even attempted crawling. She would get on all 4's, rock back and forth, but never did she ever move. We are so happy and so proud of her. She has proven once again that she is a strong and very independent child. She definitely gets her independence from me. This could be a good thing, or a bad thing. I guess it depends on who you ask! She is also getting teeth! She now has 3 on the bottom and at least 1 on the top. I tried feeling to check if there were 2 cutting through up top, but she isn't a fan of anyone touching her mouth. I am not sure if PAM has anything to do with her teething, but all I know is we went from 2 to maybe 4 in less than a month. Did I mention she has DI? I have not quite come to terms with it. I know we will have a lot of dental work in our future, but right now I am just going to worry about the here and now. I can't worry about 5 years from now.
Other milestones Caroline has accomplished literally this past week. (No this is not PAM related)
Caroline can touch her nose, ear and belly when asked. And she loves to clap her hands. And if you say "Good Job Caroline", she immediately starts clapping. Cracks us up. I will change her dirty diaper and say "Good Job Caroline" and she starts clapping as I change it. Hilarious. I know Caroline is not the 1st child to do any of this, nor will she be the last. BUT for all of this to happen in the last month has been so fun. She is like a totally different person. She is like a little girl. She is no longer our baby. It's so weird and fun!
We hope you all had a great Thanksgiving. We were with Web's family and had a good time. Caroline got to meet a lot of her cousins and didn't disappoint in her smiles!
We have decided to stay home for Christmas. It will feel good to not have to pack a suitcase!
We wish you all a happy holidays! I have our Christmas cards ordered, and hopefully they will be sent before 2011! That's my goal at least.
Love to all.