With the Heart's Eye

Today, I told someone she had the coolest eyes

To me, they are rare and beautiful and unique

.... to her they have been trouble (medically)......

It made me think of sharing something......

Sometimes what we see is not what everyone else see's... but it is what our heart sees

Ok

I want to share something those of you who did not/couldn't attend Austin’s funeral may not know…………….I have been wanting to share this for a long time and today feels like the day

We were on our way to the visitation. Surreal moment. My beautiful husband and his bloodshot eyes……the deafening silence…….the knots in our stomach……the impending unimaginable……

We were floating on your prayers and with heavy souls we walking inside that building

Walking into that room and seeing his tiny white casket from a distance

Justin stayed back for a second……I walked/flew forward

I should preface this with the following…….

When we left Austin at the hospital after his passing, I was wondering how on earth they were going to make Austin look presentable? I was very concerned and it consumed the majority of my thoughts since we had left him at the hospital.

I ran/walked up to him…..

I held my breath……..

and there he was……

I felt the tingles run through my entire body……not the good tingles……the angry tingles………

Austin’s face was snow white…….not a spot of birthmark…..not a single marking………..

”they put too much makeup on him…….” 

The thought pierced my head like a needle…..I felt my  anger rising deep, deep from my gut…..

how dare they……did they not look at the pictures???   

I felt Justin walking up behind me…..I spun around and snapped…..”they put too much make up on him!.......I don't know who this is.” 

Poor Justin, I didn't even let him absorb anything……

How could this happen!….I looked over at the poster sized picture of my beautiful, big birth-marked son…..and I looked down and saw another version of my Austin…. a version someone else thought was “perfect” (little did I know Who)………

I spun around searching the big empty room for the funeral director…..I tried to contain my pain and rage at him………..

“You put too much makeup on him” the hair on the back of my neck stood…..this must be what a wild animal protecting her offspring feels like, man I was heated

”Crystal, there was no birthmark….even when I picked him up from the hospital…. before I even worked on him.”

“No you don’t understand….this is what he supposed to look like"…..I pointed at the gargantuan picture….

“Can we lift up his shirt……"(I was still scared to touch him at that point) "I can show you what color he should be……….."

“Sure….but……….”

I didn’t hear anything after that…….he lifted his shirt…..and there….on his chest…

the same snow white color as on his face……..

”They wouldn’t put makeup on his chest……” 

the thought washed over me like a warm smile, a bright light………

Austins birthmark was gone………everything……..his chest, his back, his leg, his toes, his face and head……all gone, every spot of it………

He was in his Heavenly body……….

His lack of birthmark could probably be explained by science…..but this was not science……this was just another sign…..perhaps the biggest sign………

Austin has no more birthmark and  no more seizures in Heaven….

no more medicine and glaucoma surgeries in Heaven……

no more pokes and endocrine issues in Heaven……

no more neuroblastoma cancer scares and scalp IV’s in Heaven,

no more G-tube and aspiration in Heaven……

no more trachea malasia and 15 doses of medication a day in Heaven……

no more oxygen issues and no more muscle issues in Heaven………..

no

more

pain..in Heaven

Ocean

We are 3 months and 25 (118 days) days into our loss........I have had this picture in my head for awhile about how this feels, and a friend of mine gave me a beautiful gift...and I knew then I had to write it

We are buried neck deep on the crest of the ocean......The tide rises and we don't, for some reason, see it coming,......we panic and try to hold our breath......the water engulfs us..... we choke and gag....salt water in our eyes and mouth.....the tide recedes just when we think we are done for.........Now we know.....we have learned....this wave will return and we are still neck deep.....only this time, we wont panic.....we will pace our breathing.....we know it will recede....it always recedes.........our lungs grow stronger..our patience lengthened...we are no longer wasting energy in the panic or the fear of the impeding tide.....soon......we regain some strength......we wiggle when we can........this looses some of the grip and pressure of the sand..........now we are waist deep.....ready for the wave.....strong with breath.....the tide recedes again....now we are free of sand......... we step back.......way back...... but we don't run away from it like it didn't happen.......we take in how small we really are..how close to loosing it all we were........we see the massiveness of the ocean.........We had two decisions....continue to panic, loose all our energy and be drown by the consistent, relentless tide, or we could learn about the tide.................how to manipulate it, how to prepare for it, how to move out of the sandy danger.....

Someday we will see the ocean and not re-live the pain of almost being buried alive.....but appreciate the beautiful, complex, God made ocean for what it is.........Life

Fresh Air

Hi Austin
I feel you everywhere today. I feel you breathing life into me, expanding my lungs and chest. I physically feel the weight lifting. I feel you from the inside out, just like I did when I carried you. A beam of light, a warm glow, a deep breathe. You taught me so much when you were here. But I am getting the feeling you are just getting started with me. I continue to learn from you, more than ever before. Everything looks different today. We have a beautiful picture wall of our family. Today, I stopped and looked at it for a very long time.I walk by this wall 94 times a day, not stopping to look at it. Like many things in our home, we become so accustomed to their presence that we no longer notice them. I admired your little face and Chloe's beautiful eyes and smile. I drank in your Dad's good looks. I saw myself with you. I felt my protection over you in these pictures.

I can not thank the two amazing photographers who captured the images you see on this page.

Letting go of control........ What a terrifying amazing thing. Thanks for helping me do that, Austin.

Thank you to all the people that continue to facebook message me. It's as if each of you reach out to me a the perfect time, with the right words. I cant help but think that is also not a coincidence.  

Haunted

I know it's time to write again when I shut my eyes and I play back Austin's last 4 hours of life. I am feeling haunted. We went to visit Austin late last night. We shone our car headlights on his grave. It was chilly out. It was dark. All I wanted to do was dig him up. Fuck a shovel, my rage and pain could drive my hands through the dirt 6 feet. He's all by himself down there, he's cold, it's dark. No Crystal his body is there but his soul is not. But he's right there. I just want to hold him and tell him how sorry I am. You did nothing wrong Crystal. He is at peace, he is healed. I am feeling haunted. Haunted by leaving him in that hospital bed after he passed and walking out with my empty car seat. I am haunted by positioning his lifeless body in that big bed. I am haunted by folding his blue cold hands in prayer and propping pillows around him to keep him in place. I am haunted by walking out without him. I pushed his empty stroller down the hallways. I pressed my forehead to the handle I had no strength to lift my head. I couldn't bear seeing peoples facing as they came to realization what we were going through.  I am haunted by Chloe laying in Austins crib when I got home and her kicking his toy which made his song play. I am haunted. I am haunted by seeing Austin in his casket and his pillow slid down a little exposing his 21 staples holding his head together. I am haunted by seeing some embalming fluid leaking on his white sheet in his casket. I am haunted by how cold he was as I kissed him in his casket. I am haunted by the fluid coming out of his nose after we held him for 4 hours after he had passed.  My energy is gone. My smile is gone. My peace is gone. I have no idea who I am. I am no longer excited about reinventing myself. Everyone, including myself, loves a come back story. But I am just lost. I am the opposite of numb. I feel everything, and it is amplified. Things that used to bring a sign of peace like someone named Austin, or a superman logo, just regurgitate the pain. Waves of nausea. Why does everyone else with Sturge Weber live? Why? Why was our case so bad? We donated Austins brain and neuro cells to the Sturge weber foundation. I pray they find more about why we had it so bad.
      By nature I am not a trusting person. Some people trust until there is a reason not to. I do not trust until you show me you are trustworthy. How can I trust you God? How can I have faith? Sometimes I reach for signs and give you credit, but it is not you. It is just my wishful thinking. I was not a person that needed to "slow down and enjoy the small things" my dad taught me from a young age that life is short and to drink it all in..........I didn't need that lesson God. What are you doing? I have been through enough in my life before this. How dare you. My heart could start a thousand fires. I do pray that my feelings change. But this is where you and I are at right now. So deal with it.

  

In the still.... everything echos

We received a bereavement package in the mail recently. It is overwhelming. It has been sitting on the table for several days. My eyes catch a word here and a sentence there as I rush by in my day to day housework. I'm not ready to look at it. I don't want to put it away, I don't want it to be out of sight out of mind. So there it sits. I need to digest it slowly. A front page of a pamphlet here, a foreword of a book there.
Austin has been gone for 52 days now. I wonder when or if I will ever lose sight of that number. Will that be like forgetting him? What will happen when I don't think of him 94 times in a day? What happens when it's only 52 or 17? Things are really beginning to hurt now. I am finding it harder to step away when I feel that lump in my throat. I almost broke down in tears at my gym/bootcamp. Like the physical exertion is taking away the energy from being emotionally tough. The everlasting question "why" has returned. Now we just sit in that. Chloe and I had a beautiful time in California with JoLynn and Nicole. It was very important we went to visit them and clear our head. Now upon my return, I feel forced to deal with the weight of everything. Chloe is becoming more emotional when we go visit Austin. SHe says she "misses her daddy and her austie." Dad, of course, is at work. She asks more intelligent questions. More like statements. " I want him to come back into my house." Breaks our hearts. She so simply and purely articulates our pain. I think its time to bring in some help. We will attend a support group. Maybe they can help us from there. I still see you, God. I am still in tune with your signs. We received a beautiful gift (one of the many) on my toughest day. I know that wasn't a coincidence. These gifts are so beautiful and so on point. We are so blessed but still so broken.
   

A letter to God

A letter to God

As you know, our relationship is still in its early stages. With most relationships the majority of people are on their best behavior, they are polite, they show their best side. Not you and I. We began our relationship in the middle of a shit storm. I had just given birth to a very sick baby with an incurable disease that would take his life. How could this happen? I found you God, Oh, I found you. Not in the beautiful angel singing, dropping to your knees and testifying kind of way, but in a rage. I needed to direct my pain and rage at you. I had nowhere else to dispense it. After all, you did this. You took my dreams and you ripped them apart. I watched my husbands beautiful, youthful heart break right in front of my bloodshot eyes. You hurt my child. You tried to give me signs, always. Some days, I pretended not to see them just to spite you. So your signs became more dramatic. Such as the one below...this was the view from the ICU. Visible sign says "Heaven"

You must know me, I need it in my face. I wasn't able to chalk up these signs to coincidences any longer. You made it too clear. You made it clear you were here, and you weren't going anywhere, no matter the volume of venom I spewed at you. A short time passed and in between the panic, seizures and glaucoma surgeries, Austin had his first smile. This was his first smile.

He developed a personality. He knew who we were, he did cute baby things, he loved us and we felt it.......

. and my sharp edges of rage blurred. Would I have been so excited about all these things if he wasn't sick? Probably not. When you have the basics taken from you. (water, shelter, a healthy child) It is so much sweeter when you get it back. Every single thing Austin did was amazing. The doctors continued to paint a gloomy yet "realistic" picture, Austin continued to shine through. Here God, is where I began to see your work.

Someday I will share with everyone else all the signs you  have given me, and continue to give me. Most will not believe, but I don't care. A spiritually journey is an understatement. How can our relationship (376 days of Austin's life + the 42 days since he has passed) feel so much in fast-forward? I feel like we have been through so much in such as short time........But..... we are still together.......I am not sure we are BFFs yet, but Austin wants me to learn to let go and trust you. So thats what I will continue to try to do.

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.