Monday, May 26, 2008

Weekend review in pictures

A fun Day at Disney Land!

Friday....A trip to the Farmers Market!.....

AND ....Dinner with friends and the missionaries. The girls decided after dinner that they needed to do make overs... what do you think??

Saturday Regan woke up with the flu. She was throwing up all day and Sunday morning. Poor Baby! It was so great to finally see her perk up!!!


A trip to the LA Zoo!

When Regan got sick she was so sad because we were planning on going to the zoo on Saturday. The entire time she was sick she kept saying alligator.. alligator.... So, I told here that we would get her one when she was feeling better and we could go to the zoo.

Tuesday, May 20, 2008

Listening to my Child that does not have a voice.

I have two amazing children. My oldest Collin was born with a very rare and life threatening illness called trichothiodystrophy. He has been fighting since the day that he was born. He has been in and out of the hospital, had more surgeries, and more tests than any sweet child should have to go through. The amazing part is that it tends to bother me more than it bothers him. After receiving tests results from an MRI one of my worst fears was confirmed. “White matter has taken over the T2 area of his brain. This controls communication. This is most likely why your son has gone deaf. This also affects his speech.” Knowing the answer but needing to hear it for myself I asked “Do you mean he wont ever talk?” “ I am sorry but most likely not.” The thought of not ever hearing “I love you mommy” was devastating. So, like other hard days I broke down, cried, and grieved for this event that I would never share with him.
Fast forward to a several moths ago in my van. Collin and Regan, my three and half year old daughter, were sitting in the back. I asked them both, like I always do “What do you want to do today?” Regan started giving me her list of things and then I said “Well, Collin what do you want to do?” I do this knowing that I am not going to get a response but wanting to include him anyway. Well, this particular morning was very different. All of a sudden from the back in a deep, sweet voice I hear “ I want to go to Disney Land!” “What!” I said “I want to go to Disney Land!” Regan said again for the second time in her very best deep voice pretending to be her brother. We giggled and had fun as she continued to answer questions for him. It was amazing to see how well she knew her brother.

Regan has continued to “speak” for brother since that day in the back of my car. I didn’t truly hear Collin until one afternoon when we where playing. Collin and I were wrestling, tickling, and having fun. He was looking at me with the biggest smile as he was belly laughing. Then all of a sudden I heard “ I love you mommy”. Yes, it might have come out of my daughter’s mouth BUT they were my son’s words! It was amazing to hear my son tell me that he loved me for the first time.

It is amazing how much we can hear as we take time to listen. With God anything is possible.

Sunday, May 18, 2008

Busy week!

I had a wonderful Mother's Day! I was spoiled rotten! I have to say that my favorite gift was a beautiful necklace that Regan made for me. It is the one that I am wearing in this picture. One day She told me that she wanted me to take her to the bead shop that I go to get my beads from. She picked out the beads herself and then she restrung the necklace at least 5 times to get it just right!!! I will treasure it forever!!!

On Friday Regan and I went to go and see my mom in the High Desert. My mom's pace maker has not been working and she is having a lot of health problems. We decided that some girl fun was needed! While we were there we had a blast!!! My mom has a friend that just opened a wonderful Mexico restaurant (if you are up there and need a good one to eat at let me know!!) His daughter is Regan's age so we went and ate dinner there and then took her to have some fun! Regan and Samantha hit it off right away!!

Regan also learned a new skill while we were there. She is a pool shark now!! Watch out!

Motors for Mito!! On Saturday afternoon we went to Corona to support our little friend Taryn. (Maybe you remember her from Regan's b-day pics) Taryn has a Mitochondrial disease. It is very similar to Collin's illness. Mitochondrial disease is basically the bodies inability to convert food into energy inside the cells (where the mitochondria, the powerhouse of the cell which energy is produced by is found )... cell failure follows, and eventually death. They were holding a fund raiser up there and of course we had to go and show our support! It was an awesome day!! You did a great job EJ and Debi!!! We are so proud of you!

Taryn and Corey Miller. If Corey looks familiar it is because he is from the show LA Ink. He did EJ's tattoo of sweet little Taryn. He is such a sweet heart!

These are a few of the awesome bikes. It was wonderful how many people rode out to support Taryn and her sweet family!!!!

Our new buddy Corey! Collin just loved him and he was so sweet to Collin!!

Saturday, May 10, 2008

Fun Times!!! (We needed them! wink!!)

Playing Hookie from school!!

Collin's new medication has not been working and he has not been sleeping well at all. He has been in so much pain. So, Thursday when we woke up Regan and I decided that Bubba, Regan's name for Collin, should stay home and we should all go to Disney Land. I thought it was a great idea. It was beautiful and cloudy.. a perfect "Collin Day". We had a ton of fun!!!


Friday night/ Saturday was our ward's father son camp out. Jason took Collin for the first time last year and it went... ok. With Collin not sleeping well Jason was worried that Collin would have a hard time BUT he was so looking forward to this camp out with him. Can I just say that Jason is the BEST dad ever!!! It is great for the two of them to have "normal" father son outings together. Luckily Collin did great! We decided to take him off the new medication that was just not doing it and put him on his old one that was OK. Jason only had to give him meds once or twice through out the night. Collin was even the last one to wake up!! Collin was so excited and you could just tell that he had a blast!!!

Jason woke up and found one of his young men sleeping using a block of wood as a pillow!!

Collin sleeping in!

Collin and his buddy Kyler. Kyler is the same age as Collin and he is such a wonderful friend to him!!!

PaPa came in the morning to help with breakfast and he ended up walking Collin around.... a TON!!

Tuesday, May 6, 2008

Collin's nights

Tonight why I was laying in Collin’s sweet little bed trying to comfort him I couldn’t help but start to reflect on all of the many nights that we have spent cuddling . As a tear rolled down his face it instantly reminded me of how hard and cruel nights are for him. During the day he has an amazing way of smiling through the pain and making us all feel good and forget about what he has to endure on a daily basis. As Collin touches my face with his sweet little hand I can’t help but think of him as a baby. Most little babies have a blanket or a pacifier. Not my sweet little boy, he found comfort in touching his mommy and daddy’s faces. Collin was born completely blind and got to know us by sweetly stroking our faces. He continues to find comfort as his sweet little hand touches my face and he cuddles up so close that he can feel my breath on his face. His nights remind me of a rip tide in the ocean. From a distance it doesn’t look so bad but as you get closer you realize how fierce and powerful it is. From a distance as I peek in on Collin he looks so peaceful but then as I get closer I hear him gasping and having a hard time breathing. It is as if he was pulled out and got taken under by a hard wave and just can’t find his way back to the surface. Once a bad night starts it only seems to get worse. In a rip tide you might worry about hitting your head on rocks on the ocean floor but with Collin I worry about walking into his room to find him hurting himself to the point that his P.J.’s and pillow case are bloody. We have tried medication after medication and nothing seems to help him. I can count on one hand how many nights of his almost eight years he has slept through the night. Jason and I walk around like zombies functioning on little sleep but not Collin. He does not take one second for granted during his day hours. He CHOOSES to enjoy them! Over the years I have accepted that it is not about quantity of life but rather quality. Yes, I would love to wake up tomorrow and find out that someone has come up with a cure or treatment for TTD but that is not going to happen. So, in the mean time we are trying to find a way to make his amazing little life a comfortable and wonderful one! I took him to see his neurologist on Friday and she prescribed a new medication, clonazepam, to help him with the pain. As I look over and watch my restless little boy in Jason’s arms I can’t help but pray that this one will be the one that will work. That his restless, pain filled nights will start to disappear. After a rip tide leaves and the ocean calms it is a beautiful site. I can not wait to see that beautiful scene in my home some day.

Sunday, May 4, 2008

Party like a Rock Star!

Jason and I went to a rock band party last night. Mark and Kristina were our wonderful hosts! It was a blast!! Can you tell that Jason and I got into it just a little bit? Is it sad that I ended up being the only girl that got dressed up and it didn't bother me one bit!??! We can't wait until the next one! Here are some pics to enjoy... I don't know if I ended up getting everyone. Some people came later.. yada yada!

LULU has skills!!

Just because you have a newborn doesn't mean that you can't rock!

I am trying to master blue steel... what do you think?
(I learned all of my good poses from zoolander)

Brian got into it so much that his nostrils were flaring!wink!!