Power Through

Last week Chloe and I had to go to St Paul Hospital pharmacy to drop off a few things. We had not been there since Austin passed. We exited off the highway and Chloe says “there’s Austie’s doctor”, I said yes…..”She said “where the blankets?” Her memory of going to Austin’s doctor was when we dropped off the Blankets for Babies. This is what she remembers, not the silent car rides, tears, and anxiety to and from this place…..But she remembers the result of the charity event. How happy my heart was at that moment. Chloe when you read this someday I hope you understand how much of a gift you are. Austin will always be “perfect” in our memory. But you are the very core of us. You are the glue, and the structure. You are perfect. You were sent to us by God Himself to help us. Your dad and I are so proud of you.

                We are starting to find some rhythm here. We have boot camp 3 days a week. We go to church and brunch every Sunday. I have recently reunited with some amazing friends. I love these women. They are loving mothers, adoring wives, leaders, comedians, voices of reason, boundless energy, and inspiration. I could go on and on. God has guided these women into my life. I went to 8 schools by the time I graduated high school. I did not maintain relationships with people because I knew it was just a matter of time before I would move again. I was conditioned to have acquaintances, never friends. Now I have friends. Selfless loving friends and it fills my heart. I cant help but feel that Austin had a hand in this. I am feeling positive. I am taking my pain and turning into something strong and raw and unstoppable. There is a lyric from a Macklemore song…..”Change the game, don’t let the game change you……” Life is a game and I am changing mine.

With encouraged Love,

Austin's Mom    

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....

     Austin you have set me free. Free of self doubt, free of judgments. Free of spelling errors or silly similes. You have set me free. So let’s do this buddy. Let’s just write it all down and see where it takes us. It may not always be pretty but it’s ours. Let’s just write it all down. All of it. Everything.

                Some days all I see is death. It’s in the nursery rhymes Chloe and I sing. ‘Please don’t take my sunshine away’? Really? ‘And down will come baby, cradle and all’? Really? Not exactly the best words for a grieving mother to hear. Some days all I notice is the discolored grass. Some days all I know is I can’t smell Austin anymore. His perfect baby smell. Scent is the strongest link tied memory and I cant find his. We spent too many days in the hospital at the end and all his dirty clothes in the hamper at home smell bad….not like him. Some days Austin is all Chloe talks about, and instead of being happy he is a part of her memory I am sad she keeps asking

“Why”?

“Austin’s in heaven, Chloe.”

“ Why”?

“Because, he went to be with God.”

“Why?”

“Because it was just his time.”

“ Why?”

“I don’t know sweetheart.”

 “I want to touch him.”

“I do too honey, I do too.”

 Usually at this part of the conversation I’ll ask her to tell me what color the ball is, or ask her to sing her ABC’s, but as of recent, I sit in the heavy silence. I let it linger. I sit and I let it wash over me. Snuff the air out of my lungs. All to familiar tightening in my chest. Chloe always senses this and says

“You sad? You sad?”

“ Yeah, sometimes mom gets sad because she misses Austin, but its okay Chloe.... Austin is in our hearts”

….But my heart is broken. I have to show her healthy pain….but all I want to do is scream and smash my fists on my steering wheel. All I want to do is scream until my voice is gone and the physical euphoria of exhaustion kicks in. I want to hide and I want to throw a big middle finger up. I know I could, and no one would fault me. I let my head wild run with that thought. I swim in that thought. I push it around in my mouth. It is so close it is palatable. I can taste it. Just let it all go. Throw up the middle finger….F you world. But when I spin with that idea, all I feel is darkness. All I feel is rage. All I feel is alone. All encompassing cynical darkness. And I can’t. It’s unnatural to me. I don’t want to take a rope and lasso a rain cloud and drag it around over head….I like to golf too much. I like to swim at my dads pool too much. I like to take Chloe to the park too much, I like to sit and have a cocktail outside with my husband too much….and I can’t very well do that in the rain……Well…………I won’t do that in the rain.