90 Days

Tomorrow will be 90 days since this all started. It feels so much longer and so much shorter than that all at once. So much has happened, but there has been so much waiting.

All three of us have celebrated birthdays... we've celebrated Mother's & Father's Day... it's time to go home. 

It's amazing how quickly your life can change. It only takes a second. One complication. One mishap. 

It'd hard to think back on that day... on March 18th. It feels like a lifetime ago. But, I get more of my child back everyday. I don't have to work so hard to make him smile anymore. It used to take hours of Brian and I beating up each other with stuffed animals to get even a grin... now he grins when I talk to him about something he likes. He smiles when something he likes happens on t.v.... This is huge. 

When we came to Brooks they had to go though their typical admission paperwork. The same stuff I go through with my patients and families... Do you worry about abuse? What was your baseline abilities before this? Do you have a living will or advanced directive? ... Wait? What? Excuse me... Did you just ask if I had an advanced directive on my child? Yes... yes I do - FULL CODE! I was in absolute shock at this question... once I thought about it for a minute I did realize that some people do have these on their children. Some children are terminal. Some children don't even have the quality of life that Todd has. It was humbling.

He has the capability of being happy. He can show me that he's happy. There is a HUGE difference between not being able to tell and knowing that he can be happy. It's hard to admit to this, and I have before, but there were days... very dark days, I believe while he was still having the neuro storms, that I thought.... I begged for this? I prayed for him to be saved... for this? My prayers were answered only for my child to suffer further? To have an empty life? This is most definitely NOT the case. His sense of humor is fully intact. I have no idea how, but it is. This was one of the things I love most about my child. Always saying the most ridiculous things and finding HIMSELF absolutely hysterical. Even on hard, awful days... he could always make me laugh and smile... without even trying. He moves his mouth more purposefully everyday. He's moving it in different ways... hopefully those muscles are waking back up. He's making great strides with chewing/eating/swallowing... I have no doubt we will be feeding him orally in the near future. He's making different noises and exploring his voice with different tones/pitches/cries... All good things that lead to talking. It can only go up from here. & I know once we're home he'll have a lot more motivation to progress. 

From what I've learned is that a lot of families choose to hide their child from the world when something like this happens. Whether it be it's hard to handle the looks from people, the questions, the difficulty of getting place to place, but I have absolutely no intention of doing that. We were a very active family before this and I intend on upholding that say lifestyle to what ever extent I can. Todd loved going places with us. I'm not going to stop him from that now. He needs the stimulation. This kid gets bored so fast. I should know... he's got my personality. We can still go walk trails... his wheelchair is designed to go outside. We can still go to the beach... I will find some kind of apparatus to hold him up. His life is not ending here. He is still going to be the ring bearer at our wedding. No matter what. I'm determined. 

So many thoughts. So many emotions. You'd think I'd be about to explode, but I'm calmer than I've ever been. I'm ready for this next step... this transition. 

 He got to eat some birthday cake!!

 Last shower in the hospital!!!!