Tuesday, March 2, 2010

breath... just breath

Several times today I had to remind myself…. Just breath.

This morning we woke up early. I wish it were for something fun like Disneyland but it wasn’t. It was for another trip to the hospital. I woke Regan up and laid in her bed with her for a bit. She asked me some questions about the day and then we hugged. After I had gotten her all dressed and ready we all piled in Mommy and Daddy’s bed where Bubba was just waking up. Regan insisted on saying our family prayer. Her prayer was for her Bubba. It was sweet and mature. I couldn’t have said it better myself. Nana came and got Regan and took her to breakfast since it was so early and she still had a good hour before school started. Then Jason and I loaded up our hungry and tired little boy into our van and headed to the hospital.

After nine and a half years of so many surgeries, tests, and procedures you would think that maybe, just maybe a person might get used to their baby going limp in their arms and then handing them off to an anesthesiologist that they just met minutes before. No, it doesn’t get easier… to be honest it has gotten harder. As Collin has gotten bigger so have the risks each time he is put to sleep.

This morning the hospital was busy. While waiting I talked to the aunt of a little boy, 11 years old, fighting brain cancer who was having tests done in the room next to Collin. In the small waiting room was a boy, 8 years old, with autism getting ready for his tests. He didn’t want to go in. It became a fight. So, I excused my self and went into the big waiting room with Jason. There I was next to a little guy, 2 years old, who was fighting his own battle with cancer.

It breaks my heart.

I tried so hard not to cry and was doing so good but then the nurse came out and I thought it was for me. No, she was coming to get that little guy and start prepping him. When she saw me stand she came over and told me that they had some trouble getting his breathing tube down his throat and that it would take longer. I sat back down , pretended to be looking at my phone with my head in my hand, and cried. It seemed like forever waiting for them. Then a tech came out and told us that we could go back now.

Well, the tech didn’t realize that they were not ready for Mom and Dad yet. We walked back to find them trying to extabate my little man. I saw tubes, blood, my tiny baby on a huge gurney, and heard lots of choking. When the doctor saw us he quickly started saying…. “Not yet, not yet … take them back.” We walked around the corner so that we couldn’t see what was going on. I could still hear him choking and Jason kept trying to drag me away so that I wouldn’t listen but I wanted to be right there when they started to wheel him out.

He was wheeled out and we went with him to recovery. With in no time this sad, sleepy, little boy was gone and my Little man was back. We were able to go home and he spent the most of the afternoon just cuddling Mommy.

Now that all that this is said and done and that hard part is over we have yet another hard thing to do….. wait. We have to wait for the results. There is either one of two things going on, neither are good but one is better than the other. Collin was what is knows as demyelination of the brain.

A demyelinating disease is any disease of the nervous system in which the myelin sheath of neurons is damaged. This impairs the conduction of signals in the affected nerves, causing impairment in sensation, movement, cognition, or other functions depending on which nerves are involved.

So, either the demyelination has progressed and has taken over the optic nerves of Collin’s left eye or it is a tumor. Either way he will eventually loose that eye….. Either way this stinks….. Either way I am terrified as to what is next.

I have faith that what ever is around the corner for our little man he will continue to amaze us with his strength . I know that no matter what I am not alone. I have a loving Heavenly Father who is always there to comfort me and give me the strength to endure. I have a wonderful best friend who loves me, supports , and helps me. I have a sweet little girl that is her Bubba’s biggest cheerleader. I have wonderful family and friends that join us in prayer for Collin. Thank you all so much for you prayers today.

Bubba is doing good!
He is my Hero!


Evie B. said...

A little cry at work isn't bad, right? Breaking. My. Heart.

I admire your strength so much. You deal with far more than is asked of most mothers and I can't imagine what it is like to have to go through something like that.

We'll have fingers crossed and hearts praying for the best of results.


Palmyra said...

I am so sorry. I wish you didn't have to go through this, nor Collin. All I can think of is that you two deserve the biggest rewards.

Kenny said...

No words. There are no words. I'm sorry you had such a hard day. And I'm sorry there have been so many hard days for all of you and that there are surely more in store. All I can say is that we love you!

Anonymous said...

I don't know how you do it? How you give so much to all three of them? It is so sad to read, the things Collin has to endure....the things you and Jason go through in the process. We aren't there, but we worry with you. And we pray for you. You really are as beautiful on the inside as you are on the outside. Loved this post, love those kids, love the new look on the blog, love the dress makeover, love that I get to see you again in April, love you!!

Zurmely family said...

Oh... my friend, my sister... how my heart aches to be there with you and with Jason, Collin and Reagan. I'm grateful to know you are so aware of the power of the Atonement and know He's there with you. I love you and you were in my thoughts all day yesterday... my heart, prayers and tears are with you.

Jenny said...

You are one amazing momma, Julie! Our prayers are with your family.

Sarah said...

Julie you and your husband are very lucky parents. I hope you remember how strong you two are and that Heavenly Father has trusted you two with one of his most precious gifts. He'll never give you more than you can handle and your family is amazingly strong. I think of you often ans your little man has truly been an inspiration to me.Just remember you don;t always have to be so strong it's ok to cry!

The Gray Family said...

Julie I am so sad that you and your poor little guy are having to go through this! You are an amazing family. Let us know if you need anything, and I hope the wait goes quickly for you!