e-mail: Just something I wrote.....

Just a little bit ago I received an e-mail from my big brother titled "Just something I wrote". I opened up the e-mail only to be completely delighted and blown away by this sweet poem that he wrote for Collin. He said that my sister and dad were surprised by how beautiful it was. I told him that I knew how talented he was from reading all of the love poems he wrote for his sweet wife:) I am very blessed to have such caring and talented people in my life. It was very thoughtful. So, with his permission I thought I would share it with all of you.

Written by Uncle Bubba
(for our little Bubba)

Independence was gained on the 4th day in the year of 2000
When Collin was the name given as I began my quest.
Bright was my skin tiny were my hands and feet
Big was the hospital where I had to remain
Huge was my heart pumping determination to those tiny digits
Resolve shown to all as breathing began

Initiated was the first step of my mighty quest
Confusion I used to keep the doctors attention high
Surgeries were often for such a valiant warrior as I.
Love infinitely provided by my family was my rock
Dates were given, dates passed, as my tenacity for life grows
Perfect smile and laughter shown as the time continues to mount
Hearts touched and lives changed accumulating more with each encounter

Support staff growing as my baby sister Regan arrived.
Training I share to speed the evolution of my best friend
Growth blessed my sister who now leads my way
Differences are noticed by all
Notice the differences she does not.
Handicapper is the term she uses when referring to her best friend
Candy striper is a duty she acquired as family deals with my quest
Love she grants creates mountains in my heart
Countless tears wiped away as my best friend sits by my side

Focus is what strangers do as they don’t understand my calling
Unusual are the questions my family has to endure
Odd are the reactions to the probes asked by those who don’t know
Touched is another life as my family shares stories of my quest
Gained is another comrade to help in my fight.

Willpower I will display as seizures come and go
Courage shown as I smile at other as others don’t return the same
Audacity displayed to enjoy the sounds of trams
Determination gained to finish this quest called life.

Glass half full........

I am typically a glass half full kind of girl. Every once and while though, I will let our situation get to me. Yes, the other day I was feeling sorry for myself.

Pity Party …. Table for one please!

What got me down you ask….. Well, since you asked I guess I will share. I MISS family vacations. I miss going with my entire family and having a blast some where new and exciting. When Collin was little we traveled to New York City, Philadelphia, the Pocono’s, and we would go to Texas at least once a year to see my family. Since Collin’s illness has progressed our family vacations have been limited to traveling to Maryland. Oh, that sounds like fun you say…. Well, it would be if we were not traveling out there just to go to the hospital to see Collin’s wonderful team of doctors. We do manage to sneak in some time in D.C while we are there but trust me it isn’t very “Collin” friendly.

The other day I was completely feeling sorry for myself wanting so desperately to go see family, go camping, goodness do anything! As Collin’s illness has progressed our options have become very limited. Even staying the night at my mother’s house would throw him into seizures. When my mom and sisters where in town visiting last month, I decided that it would be fun to spend the last night at the hotel with them. The hotel suite was huge. So, I was going to take one of the bedrooms for Collin and I to sleep in. This way I could put him to bed then stay up late playing games and visiting with these wonderful ladies. Not so much….. Collin started having seizures and vomiting. Finally I decided just to go home and give up on the idea of a fun girls night. As soon as we got home Collin calmed down and his seizures stopped. Collin can not have his routine of scheduled medications, environment, or bed time routine change in the slightest way… OR ELSE. It has been a long time since I have been to see my dad or siblings in their homes. They are very good about coming out here to see us and are very understanding of our situation. However, I still miss the fun of planning a family vacation, the excitement, and anticipation.

Then I had someone tell me a story about a woman who had beaten cancer only to have it return again. While she was fighting it this last time they found out that her son also had cancer. While she was in the hospital having surgery to repair problems from the previous surgery her son passed away. She was not even able to attend her own sweet little boys funeral. It was very recent and very heart breaking to hear. This little boy goes to the same hospital as Collin. I feel as though I have a bond with this family if only for that reason. This poor mother…my heart goes out to her, breaks for her, and prays for their family.

With all of this in mind when I woke up the next day I CHOSE to have a glass half full attitude because at the end of the day that is all that I can control. I can not control this beast that is TTD. So, instead of feeling sorry for myself and the things that we can not do I CHOSE to be grateful for the things that we can do together as a family.

If you change the way you look at things,
The things you look at change.

Here are some pictures of our lovely stay-cation.

LOST Item

We LOST something and we were in desperate need to find it. We looked High and we looked Low but we just could not find it!! I was starting to worry that we wouldn't ever be able to find it again. Oh, you would have come over and helped me look for it. Well, that just isn't possible, sorry. The thing is we have been stuck in our home due to the heat and UV levels with sweet Bubba. He has not been doing well. He has been having seizures a LOT. It has been VERY hard on everyone. We went to the movies in hopes of finding our LOST item but NOPE it wasn't there. We have tried everything we could do at home BUT no such luck. So, desperate times call for desperate measures. There was only one last place that we could look. This morning we woke up super early and headed to DISNEY LAND hoping that we would be able to find this LOST item before it got to HOT or the UV was to high. Guess what..... WE FOUND IT!!!! What was it that we have been searching for you ask...... We have been looking for .....

COLLIN'S SMILE

Oh, how I missed that beautiful smile. Collin has been in so much pain and has been trapped in our home. It is so hard to see him that frustrated with being stuck and in pain. So, yesterday being at our breaking point Jason and I felt that we needed to take a risk. We woke up nice and early to get there as soon as Disney Land opened. There was an overcast and it was still cool.... it was perfect! Once we got off on the Disney exit on the freeway and Collin started yelling and laughing Jason and I knew we made the right decision. What he needed was something that no doctor could prescribe. He just needed a good healthy dose of Disney to lift his spirits and make him feel good. We all needed it. I know that I have said it MANY times before but I am so grateful for Disney Land and the magic that lies there. It is truly magical!

I am so grateful that we were able to find our LOST item. It is priceless and irreplaceable!!!!

A Girls night out that made me think....

For girls night I was excited to go and see the movie My Sister’s Keeper. From the adds I new it would be sad but I had no idea what a beautifully, hard movie it would be for me to watch. There are so many parallels between TTD and Cancer. They are both awful beasts but they are also very different. So, with this in mind I thought that I would be just fine at this movie. I was wrong. It didn’t help though, that before I left Collin starting having seizures and vomiting. I felt the need to stay home but Jason insisted that I go and get a break. I had no idea how difficult it would be to watch. I was balling and thinking of my little man the entire time. I was thinking of Regan and all that she has to go through and watch on a daily basis. I also thought about what all Jason and I have been through the past nine years all because of this illness. There were several things that I took away from this heart breaking, profound, moving, motivational, and familiar movie.

The first is that my little man is so amazingly strong. Yes, this is something that I have always known but several moments in the movie reminded me of a couple experiences that I have been through with him. I will never forget when I had to stand outside a door helplessly and listen to my little boy have a huge needle stuck into his spine. There was no pain medication and no way the nurse would let me into the room for fear that I would try to stop them. It was heart breaking to hear him scream but then when it was all over and we were cuddling in his hospital bed he was so peaceful. He didn’t complain. Collin can have an incredibly hard day and night filled with pain, seizures, and vomiting but then if he feels better the next morning he wakes up with the biggest smile. As if he were saying “Oh, thank you I don’t have to hurt.” Just as the sweet girl in the movie I find that Collin is my strength in some of my hardest moments. I can be completely breaking but then when we cuddle and he caresses my face as if to say “It will all be ok Mommy.”… I feel better.

The second is what an amazing daughter I have. Yes, I already knew this before as well but our life is so “normal” that at times I don’t realize that some of the things that she is asked to do is not what a little sister would be doing for her big brother. When Collin starts to seize she will instinctively go and get towels to clean him up. One day I went out to the garage to do laundry and Regan started shouting “MOMMY.. MOMMY!!!!” I ran into find her holding a towel, cleaning up her brother, and comforting him after a seizure. There was a scene in the movie where the younger sister preformed the most amazing act of love for her older sister by cleaning her up after she soiled herself. This touched me and broke my heart all at the same time. I think often times the main focus goes to the children that are suffering with the illness and maybe not enough about the ones who are shining examples of sacrifice and love. Regan is an amazing big, little sister. I feel so blessed to have two children that are so strong in such very different ways.

The third thing was how amazing my husband is. Ok… Yes, I already knew this one as well but it is always nice to be reminded. Watching the struggles that the illness put on the parents marriage made me so grateful for my wonderful husband. It has been no walk in the park. We were young, newly married, and then thrown into am incredibly stressful world. We weren’t sure how to deal with all of the news that we were getting but we did. When we needed to go to counseling to get help to learn how to deal with all of it together he didn’t complain. When I am terrified and crazy he calms me. When I am tired from a long day of appointments he will bath him and give him his medications. This is true love. There isn’t anything more beautiful than a man that loves you enough to humble himself, learn with you, grow with you, stand by you, and love you endlessly.

The fourth thing I learned is that Disney Land is Collin’s Montana. In the movie the girl that was sick loved to talk about and remember wonderful times in Montana. Well, I am grateful that Collin has a place that makes him feel the same way. He can not express it in words but I know how much he loves that place. It brings him comfort and peace. It is an escape and I am so grateful that he has one. If he is not well enough to go there we have pictures and videos for him to enjoy. Even just watching a home movie of the rides and our family together puts a smile on his face. I feel blessed that despite all that he has to go through he has an escape. That we as a family have an escape.

The final thing is how grateful I am for my testimony of eternal families. In the movie the topic of what will happen after death came up and they didn’t have an answer. I am grateful to know that no matter how hard it might be to part with a loved one here on earth, it will not be forever. We will be reunited as a family one day. I feel so blessed that when questions come up with Regan I have answers for her. I am grateful that it doesn’t have to be scary or the end. Families are forever!
　
　

What have we been up to??

We have been a little busy this summer.......

Just thought I would share in case you were wondering where we have been.

Collin's Birthday and 4th fun! (way to may pictures!)

We always have a marathon day for Collin's B-day/ fourth of July. Collin woke up feeling pretty good! :) That is always a good start. Then I got the kids ready in their Red, White, and Blue and got ready to head out. Jason had already left and was waiting for us to meet up with him for our annual pancake breakfast. We look forward to starting our fourth off this way every year. Collin was so happy to see what I had done to his walker and was excited to show it off as he ran everyone over with it. wink!

Collin and I had to take off early because he was getting tired and having a hard time. I needed to get home to rest before the next round of fun. No, we didn't go to Disney Land (we were blacked out.) So, we did the next best thing. We met up with a different mouse... Chuckie. This has also become a birthday tradition.

One of Collin's aids from his very first pre-K class came to celebrate! He was so excited and would not let her put him down! We love it when Laura comes to play!

I loved watching these two play games together. Great Grandma Jo is pretty competitive and didn't take it easy on Regan one bit! wink!

The best part was seeing this sweet little smile the entire time!

Then we headed home so that Collin could rest from all of the fun that we had

at Chuck E Cheese before the next stage in the day. (Collin kept worrying us and

we weren't sure if he would be able to handle the next round BUT after resting he

always perked right up.)

BBQ and Nana and PaPa's house and Fireworks!!!

It was a great day! I kept getting chocked up through out the day. Every time I would think

about all that he has been through and over come I would get teary eyed. I can not believe that he is 9!!! What an awesome day for an amazing little man!!!!