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!