Tuesday, July 10th

Two weeks ago today the neurologists told us that they were going to be doing another MRI because of the possibility of brain damage.   I never thought in my worst nightmare we would be where we are today. The past two weeks have been extremely hard and agonizing, but in the midst our devastation we have seen numerous acts of love and support. We are really blessed to have so many family, friends, neighbors and even people we have not met praying for us and showing us their love through so many different ways. 

Garak has held on so long that many people have been able to come hold him and to say goodbye to him. Tyson's sister Kelley flew in the day after we arrived home from the hospital and spent the week with us, her family arrived a few days after Kelley.  The rest of Tyson's family also came into town this past Thursday and were able to spend a few days with us.  To have Tyson's family here was such a blessing for both Tyson and I during this time. We also were able to enjoy the 4th of July as a family. My boys were really excited that Garak was with us to do fireworks. Both Lincoln and McCade mentioned that Garak was able to experience every holiday now, I agreed and didn't remind them of Labor Day.

With Garak holding on for so long, I have to wonder if the decisions we have made are the right ones for Garak. I always thought that if my children, Tyson or myself had the amount of brain damage Garak has I would want them to go back to their Heavenly home.  I would want them to be happy and be able to do anything they want. I always believed keeping anyone here in that type of state of mind would be a horrible prison to them, where they would be stuck with no decision of their own. Now, actually facing this decision, I never knew how unimaginable this decision would actually be. I would like more than anything to have him better and to forget these past few weeks ever happened.  Garak not reacting to anything reminds me that Garak is not the same.

Since Garak was born, we worried constantly as to what Garak would or would not be able to do; we worried about if he would be able to walk or talk.  We wondered if he would be able to see us or be able to communicate with us.  Now I realize, him being able to smile at me and to know I was holding him or kissing him was all I ever needed. I would give anything to have those few things back.

The past two days I have gotten away from everyone and everything for a couple of hours and have been able to hold Garak in sweet quiet places outside my home. These are moments that I will always treasure.

Late this afternoon we had an had an appointment with the neurologists to go over in detail Garak's previous MRI. We went frame by frame and looked at each MRI image they took of Garak's brain. They explained to me exactly what each area of the brain does and what it means for Garak. The radiologist described the damage as Diffuse Cytotoxic Edema, meaning the whole brain is going toxic and Necrosis will set in within the next few weeks.  Although I already saw these images while we were in the PICU, I did not realize the extent of damage.  I was hoping that there would still be some good portions of his brain left undamaged, giving a possibility where his brain could adapt, and he could learn to use what was left.  Unfortunately, the only portion of the brain that was not extremely damaged was the brain stem which controls heart rate, breathing and sleeping.  


Although it will never be any easier to let Garak go, after reviewing the MRI (again) does help me know it will be the best thing for Garak.

(Garak and cousin Channing)

(July 4th)