Sunday

       I am taking all of  my pictures off my phone right now and putting them in a file on my desktop named ‘Austin’. My phone won't work I have so many pictures taking up all the memory. I can’t bring myself to look at them yet. These are all pictures of the good times, periods, of health and smiles. The bad pictures are already downloaded into a file I created months ago titled ‘Please God’….as if I am begging Him to help us….or perhaps it’s a please-God- help-me-when-I decide-to-look-at-these again. We deep cleaned the house today. It felt good, but then I came across one of Austin's socks, a g-tube extension, and his swim trunks and this was enough to flood my eyes. I went from singing with the radio to crumpled on the floor. I thought I had cleaned everything out and put all of Austins things in a special place. But apparently, I missed some. Justin saw me and knew right away what had happened. He hugged me and didn't say anything.....which is good...I didn't want to hear it....Then we kept on moving.......Just like Austin taught us. Feel it, digest it, respect it, and then move forward... Good thing the next song on the radio was a good one. 

       Last week Chloe and I brought all of Austins medicine to the police station. Apparently that’s the only place to get rid of these drugs safely. There was a large green bin with a drawer that you pull out. You put in the medicine bottles and close the drawer and the meds fall securely into the box. Chloe, miss independent, wanted to do this. I am glad she did. My heart stung with each bottle placed in that box. Of course our bottles were large so all meds had to be dispensed one-by-one. It took several minuets……We had a total of 10 different medicines in large red bottles and 15 boxes of emergency seizure meds..............

                      ..All the signs were here that he was declining….

                            medicine doses getting higher and higher.....eye contact getting worse.... 

                                       more periods of illness....more new breathing issues......

                                      But like most moms( of sick children or not), I only saw the good things in Austin. Chronicly ill children's parents only see the good. The bad would swallow us whole 

It is a survival mechanism even if we know we are fooling ourselves.......

I'm mean come on, our children are perfect, absolutely perfect …

My bag held 25 medicines that help keep Austin alive and 1-by-1 Chloe opened the drawer put the med in and closed the drawer…..opened the drawer put the med in and closed the drawer …..I know Chloe was beginning to pick up on my breathing as it basically stopped...that damn throat lump shows up quickly….I told her 

"Austin doesn't need medicine in Heaven now…in Heaven he is healthy"

"No more doctor for Austie?"

"Nope, no more medicine and no more doctors for Austie."

"What is he doing (do-Ning...as she says it) up there?"

"Oh Chloe he is dancing, and jumping, and singing and smiling at us."

"I can see him in Heaven. I can see him in my heart."

I looked down and the meds were all gone. During this conversation she had taken care of something I had been dreading and being sick over for days. And she, just as Chloe does, saved me.  

I know Austin was not his medicine, but I couldn't help but feel I was throwing away a piece of him. Since his birth my life revolved around medicine. Schedules, doses, increases, decreases, every 2-4 hours something needed to be given........A huge part of my brain belonged to these meds.....I am still always aware of 5am,5pm,11am,11pm......11:11 was his last seizure before we intubated him. If I look at the clock and it happens to be these times my heart skips a beat.....The songs we put on Austin's benefit video come on at the gas station, and in the car.....my heart skips a beat....Sometimes I am having a good day and I say out loud "Oh hay Austin" but some days it just makes my heart stop.........I know we had good times, beautiful times, peaceful times. Even through everything. If we could find good times, and joy going through the tough times, there in NO reason that we cant find good times, and joy again...... In a way I feel lucky that I have him guiding us. I don't have fear to try new things, which is new for me. Austin gave me that. I have this desire/pull/calling to help others that have a sick child. It's hard to explain. I am broken and sad, but feel so lucky. I got to have an angel on earth. He changed the core of who I am in 376 days. 376 days for a lifetime of perspective.  

I decided to watch one video of Austin. I have hundreds and I randomly picked on and this was it.....It is beautiful and full of life. My handsome man. For some reason the video wont play but....the slideshow pictures give you and idea....