Sunday, April 5, 2009

At times I feel robbed......

On Wednesday I was so excited to get a phone call from my mom telling me that they were on their way to Disney Land!!!! I picked Regan and Collin up from school and we headed right to Disney Land to meet up with Poppie and Coach! We were able to get a lot done in a short amount of time... thanks to Bubba.. wink! We road Buzz, small world, tea cups, ponies, peter pan... then it happened! Our perfect day was stolen from us. How can a good day be stolen you ask??... One moment we were laughing smiling and having a blast. The next there where tears and seizures. Yes, TTD reared it's ugly head and stole yet another happy moment from us. After going on the last ride we had gone on I noticed that Collin all of a sudden was acting "wimpy". So, I told Regan that we could go on one more ride and then we needed to go home. We never made it to that last ride. While we were walking to the next ride I noticed Collin's breathing changing and then he cried out. Oh no I know what this means!!!!!!! SEIZURES!!!!!!!!!!! Collin started to vomit and I grabbed the closest thing to me. Well, it happened to be Regan beloved princess cape that she had been wearing and put on the top of Collin's shade. When Regan saw that I had done this to her cape she broke down. I still feel so bad for doing that. I don't want Regan to ever hate her life or what she is constantly being put through. Well, the quickest way to do that to a girl is to ruin her beloved cape! Luckily we were still with Poppie and Coach. While I took Collin into the bathroom to clean him up they took Regan into a near by store to "spoil her rotten" and make up for the tragic event. I carried Collin all of the way to the tram ramp with Poppie quickly behind holding Regan's hand and Coach right beside pushing Collin's wheel chair for me. I insisted that I would be fine once we got on the tram and we said our good byes. Once we made our way to our stop it happened....I broke down. I have not done this often in public BUT when the tram driver missed the ramp and told me that he would have to go around again I started to cry. I asked him to please just take his wheel chair off yourself with another cast member. " I lift it all the time and it is not that heavy" I pleaded with the poor young man. A sweet father heard me and jumped over his bench to take it off. They would not let the sweet man do it "policy"... but thank you who ever you are. Once another cast member made it over they lifted the chair off of the tram and I had Regan climb in his chair and I still had my sweet little passed out boy in my arms. I felt like I had conquered a huge goal of some sort just by making it to the car. Once we arrived at the car Collin continued to seize and vomit. Once I stopped and I felt like he was ok I buckled them in and we were off. I was speeding like a mad momma! I thought what cop would give me a ticket if they saw what was going on. At one point in the FAST drive home Collin started to vomit then he passed out. I was so worried and of course I was in the car pool lane. I had to ask Regan " Sweetie, can you see if your brother's chest us going up and down?" Then Regan started yelling "OH Mommy I don't k now I don't know!!!!" I started to cry yet again. I HATE that I have to ask my four year old little girl questions that like. Once I got over and realized that he was indeed ok we carried on and made it safely home to all of his medications.













What can make a sweet happy little boy......
go from this.......

to this!!!
What can make a smile turn into ......
pain in just a moment?????

That beast would be Trichothiodystrophy. I have an over all hate for TTD every day but on days like this I have a pretty hard hatred for this awful illness that takes so much from him!!!!!!!!!!!!

5 comments:

Poppie said...

I knew we should have gone to the car with you! You need to stop being such a martyr and let people help you more! Love you lots and lots!

Zurmely family said...

Poppie is right, julie! You would never allow your daughter to go through what you did.. Listen to YOUR mommy and the people all around you who love you!! Let someone help you!

Charlie & Judy said...

You are a super mom! What a blessing it is that Collin as you as a mommy.

Jennifer Gravley said...

Julie, you are so couragous! Collin is lucky to have you. I hope you have some better days ahead.

Randi said...

I don't have a lot of heroes. My husband, my children, my brother. I don't have a lot of people I look up to. But you, Jules, are my hero. I look up to you. You have more patience and fortitude and courage than anyone I know, and you smile all the while. You always find time to tell others how much you love them and care about them. I feel so blessed just to know you. Loves.