The school of faith

Today marks 376 days you have been gone, Austin. You were on earth for 376 days.376 and 376. Weird. How these two measurable times can feel so vastly different. My time with Austin, in my head, feels much longer....much longer than how long I have been without him.....I know its because of what I learned in my 376 days with Austin. I went from a freshmen in faith...clueless, uncomfortable and lost...(but hey! at least I was enrolled) ..... to a graduate student...still very much learning, but I now know my way around campus, the party phase is done, and I am focused..... As a freshman in faith, as I call it, talking about faith or God made me uncomfortable....I didn't know all the prayers that everyone else seemed to know....I didn't feel connected or moved like everyone else seemed to.....the people that I knew that were followers of Christ were.....ahhhhh....ok lets just say it, weird.......Then I met the man that would be my husband....then I met his family.........Regular people, fun people, athletic people, people with senses of humor and struggles and love and most importantly a faith that was so deep it seemed to radiate off of them.....I wanted that.....but wasn't quite sure how to get it..... I married into it, practiced it, and did all the things I was supposed to..But it still wasn't quite right.....I didnt feel what they felt no matter how much I wanted to, I just didnt..... My cynical side would perk up......and the controversy in the church only fueled that cynicism.... Then...... I had Chloe. My attitude softened some.... I was more pleasant attending church and became smidge more comfortable around people that spoke openly about God. Chloe's birth had opened the door, and I only needed to walk through....but I didnt. I hung out with the door open....peek through to the other side now and then.....but never step through........................................... Enter Austin................................ My newborn son picked me up and gently carried me through God's door. In that moment, I didn't fear what was on the other side... Its like love.....you cant describe it, it is just a feeling...all encompassing.....I haven't looked back since Do I still struggle with my faith?....Yes, absolutely. But I have learned thats okay. Do I still question certain interpretations of the bible?....yes I do, I have learned that is okay. Do I still rage at God in times of weakness?.....often....and that is ok. Today's service at EagleBrooke Church Woodbury was powerful and extremely difficult for me. It was about fear. Our worst fear came true. We were in the darkest of dark. But we didn't surrender it to... we continued to search for the light......we shifted, we reached, and felt for the light. Its warmth. Something to fix our eyes upon. As we did that we asked for help. We asked for the light. We asked for guidance...what we got....what we got was the brightest warmest light of them all. God's perfect love. That...... and that alone is what drives out our fear.

Your Birthday

HI Austin, This Saturday you would be 2 years old. I have danced around my feelings this week. I feel the lump in my throat at all times and the weight on my chest with every breath...... Just waiting to burst like a damn with a weak spot...... But I dont want to deal with it. Im not ready. It's there, tapping on the back of my head. I worry if I start to feel too much and I fall apart I may not be able to put myself back together. I worry I won't remember how to put the pieces back. I worry that this time....this time it will do me in. So I stay busy waiting for what feels like the right time to let it all out. Whatever that may mean.... I wish your birth and you death weren't so close together. It's confusing. I remember you had a seizure on your birthday. And I prayed, well more like screamed, at God so loud. I remember throwing my head back "Not on his birthday! You better not, not today." I called Justin to come home. Chloe was at school. We gave you your emergency med and then you slept. But this seizure was different. You eyes were fixed and distant and I knew you were looking at God. I knew you were checking it out up there. Seeing what heaven is about. Every breath....every moment.....it was me and you.... and I knew then, in that moment, it was you and God. I was just another person on earth....and you were becoming an angel on earth.... My duty of getting you to heaven was coming to an end...We spent the next few days recovering from that seizure...Then about a week later you were looking at God again. And that was the last time I saw your eyes............................................................................. But not the last time I felt you..... Or saw your signs.... Or smelt your baby smell.....Or felt your love.....Or saw the ripple effect of your life.....You bless me with these things all the time.......... So as we approach this day, the day of your birth I have a favor to ask......If I keep my faith high and my eyes open will you help my heart......I know it may shatter but please continue to help me put it back together again....... I love you so much........ Love Mom....... ................................................................................................................................................................. * A note to our followers....Please consider donating so I can buy fabric for a Blankets for Babies event in Minnesota. $5 $10 every penny helps!!! There is information on the left side of the page..... Click on the 'Give' button....next click on Austins picture....that will take you to the main page .....then scroll over the picture to see a video about Blankets for Babies...Chloe makes a cameo! Love you all!!! Here are some pictures from Austin's birthday.

Opportunity to donate for Blankets for Babies MN

Please copy and paste into your browser

www.giveforward.com/fundraiser/n905/because-we-can-society-blankets-for-babies

Angels (Nurses) Part 1

Nurses
You looked at me through a mother's eyes....not an experienced-put-my-emotions-aside person....
You felt my love, my fear, my drive........
 You took time to sit with me......and talk with me about things other than the pain
 I saw you hold Austins hand and gently rub his face, I saw you stop and stare at him for a long time and look at him as if he was your own.....I wasn't sleeping. I felt your love.
You asked me if I want a burger...and brought me one
 You tweaked things to fit our need....
 You weren't working, you were just my friend
 You lovingly argued with other nurses because you wanted to take care of Austin
 You stood firm with me as I debated with doctors and challenged them
 You took the time to get to know me, my personality, and my passion for my son...and you saw me as a mom trying her best.....
 You could read my face in a single glance and knew that the blood pressure check would need to wait
 You hugged me as Austin Coded
 You cried with me
You shared things about your family
You hugged your children tighter
You celebrated Austin's accomplishments
You followed us on facebook or caringbridge
You  prayed for us
You came to pay your last respects as Austin got closer to God
You came to his funeral
You loved him
You lay in bed and think of him
You worry about me
You dont feel like an angel......You make mistakes and you find flaws in yourself......you second guess and stress.....You are overworked and exhausted
..But you
You are my angel just as Austin is yours

Thank you
Please take a minute to thank the nurses you know.......
Here are a few of the many nurses that saved my life and Austin's
Angels

Eh, Skip this one...read the next one

Why do I write now only when I am in pain. Surely it would be much better for people to read if it was happy or upbeat, but then I remember grief doesn't care. So I guess I dont either. I can't be the only person feeling this. I just can't.

Just as every day has a night, so has my grief. The dark is inevitable and cold, and lonely. Does it feel better knowing the day will break....no. It doesn't help me right now. The rumble of the clouds wash over me, and I am again reminded of the ocean. My thoughts go to the ocean often during both times of joy and sadness. But the difference is the ocean at night verses at day....Same location two very different looking landscapes. Washing relentless waves, beating my skin raw. It doesn't care my flesh is broken and stinging from the salt. It doesn't care. When do your tears dry up? I used to think it was when my mascara was completely wiped off and freshly absorbed into my sleeve and shirt collar. But they dont. They keep coming. They dont care.  Its Easter time and what is everywhere? My Kryptonite. Little toddler suits and bow ties and suspenders. Twinges of jealousy. That is a new feeling. Jealousy. Not with people I know. Just on commercials or random people at Target with their healthy happy babies. Yes, I know everyone has a story or battle blah blah blah blah. That is not helping me. I dont care. I am selfish in my pain right now. I hate this side of how I feel. I avoid it and try to ignore it. But apparently that is not healthy in this process. I can't see all my gifts in my life through all my tears. Its blurring my reality. These damn tears. They dont care. The song at HomeDepot. The boy named Austin ringing up my purchase. The Bow ties and suspenders. The new babies. These damn tears. They dont care. People care. I DO know people care.    

Flat

I went to a catholic retreat a little over a week ago. It resolved many of my issues I had with God. I remember Momma J asked if I would come to this retreat and I said "I'm pretty upset with God Im not sure if that is a great place for me to be. We are not really friends right now God and I" Her response was "then you really should come." So I did. It was amazing. I feel a peace with my relationship with Him. I am so grateful for that.
I have been struggling. Im tired of struggling. Two steps forward 2.5 back. I need to go back to Austin's birth, relive that and feel that worry and stress and the unknown. I need to go back to Austin's first seizure at 12 days old and relive that. I need to go back to walking, with my tiny new baby in my arms, into the ICU...the smell....the sounds......the temperature....the blood draws.....I need to go back to bringing 5 medicines home trying to get him to drink them and watching him choke and gag and aspirate. I need to go back to him stopping breathing and turning grey and then blue. I need to go back to all of these and thousands more of these events. This is painful and I dont want to. But I have to. I have to walk through these things, but I feel I have God with me to help me through now......maybe thats why I haven't began this process yet.....I wouldn't have been able to do it myself. I need Him and His divine help. The longer I wait to process these things the more panic I feel. I lay in bed and I see terrible things we went through.....terrible specific things.. like how his face looked when he was seizing...the panic in his eyes when he would stop breathing, his cry drown out by the bag when I would resuscitate him and he was coming back around.....The time I couldn't find the bag and did mouth to mouth...watching them take him away before surgeries...........These images seared into my mind flare up, and burn down days at a time. Catching a glimpse of the newspaper headline 'Seize the day'....the word Seize......twinge in my heart......well, there goes that day...
I am learning that just one of the hundreds of events we endured would cripple a person.....How am I going to sift through all of this?
I want to be done now. I don't want to get knocked on my ass over and over and over again.....Yes, I get back up...every time.......big deal.. but now I am like beaten puppy flinching at everything anticipating the next blow.......its been 8 months......why does it feel like month one.........time sucks...................Going to Austin's grave used to give me a sense of peace....now it makes me sad....WHICH IS IT? now that isn't even consistent for me?
How can I feel at peace with God, and comfort in His love....Yet struggle soooo much.......I know the cross I bear is heavy and I know God helps me carry it....makes it lighter for me.....but I think, up until now, I have not admitted I even had a cross......so no matter how much God helps me lighted my cross.....it still is a cross.......

My therapist told me something beautiful.... "Crystal...before.... you were a lovey, purple, mold of clay in the shape of a cup.....This trama has smashed you down flat.....but guess what........ you're still clay...you're still lovely....... and you're still purple....who knows what you'll be next?......maybe a beautiful vase?...maybe a figurine?....will you ever been that cup that you were before?.....no.....you may become something even better......." (I'm paraphrasing)

Right now I am the flat part before I am formed again....I ask you for your prayers for God's hands to mold me into what he want me to be...........perhaps a tea cup?
 Thanks for listening.....I feel a little better....I love you all

Dear Chloe

Hi Chloebear
You are 3 years and 4 months old
     You are asking very intelligent questions/statements about Austin these days.
      " When is Austin coming back from heaven...to my house?"
      " You said I would see him again but its been a really long time, its been like two weeks."
      "I want Austin to come back from heaven and come back to my house, because he is my best friend."
       " When can we take him out of the grave and bring him back with us?"
      Most times I can field these questions without flinching giving you an age appropriate loving response, but sometimes Chloe you may notice mom changes the subject or calls dad at work to help us with some of your questions.....Sometimes you wisdom and innocence clench my chest so tight that I can't breath let alone respond.....but I am trying my best.
   
    You are obsessed with drawing faces and as of late you are drawing our family....You never once  have forgotten Austin......
      He is always the smallest little face.....you always use a red marker to make his face because that is Austin's favorite color.
      Every night at prayers we ask you to finish the statement "God bless...." you finish.....
          "Mom, dad, Chloe......(here I hold my breath every time) and Austin......." "and fluffy puppy"....."and Scott" ........."and cookies" I am so glad you say Austins name.

I was looking through some picture to put on Austin's headstone........99% of these pictures you are right there with him....not because I asked you to come over for a photo opp, but because like me, you wanted to be near him and feel his soft skin.....I was looking at these pictures when I realized you not only lost your brother but your first real best friend......I bet you are confused and I can't image such a complex feeling as grief at 3 years old......but you seem so articulate and an old soul and managing well..........

       You are also very much a 3 year old.......You test me constantly. You are pushing the limits to see what you and your cute animated face can get away with...... I am learning how to teach you right from wrong without squashing your spirit and light......I love how outgoing and friendly you are.....Ever thing with Gusto......Ev-ery-thing! At gymnastic other moms make comments about you.....I hear things like "born leader, its in her blood"........"she has so much expression"........"shes only 3, she has great vocabulary".......I glow with pride......always....except when you throw a fit when it's time to leave good times park.....as If I am a stranger stealing you......we gotta work on that one.....

There is 6 weeks until the Because We Can Blankets for Babies event in Bismarck....You are so helpful, with fabric and folding and snuggle testing the fabric for the babies........I hope when you look back at this time you are proud of your dad and I. I hope you understand how important being humble and having a philanthropic drive is........Your dad and I exchange glances all the time at each other when you talk.....we look at each other as if to say..."oh my god she is the cutest, smartest, little lady I have ever seen.....can you believe we made her?!!!"

Because We Can presents Blankets for Babies
OPEN TO THE PUBLIC
Saturday April 12th 5pm
Sixteen03 Event Center Bismarck ND
Join us for a night to remember

Grief Sucks

We went to get our taxes done on Monday. We took the exact route past the hospital to get to the appointment. I have driven this route, realistically, about 500 times in a year. To and from for quick showers and kisses from Chloe. To and from for clean underwear and my phone charger. To and from for fresh air and to remember what the "real world" felt like. Sometimes I was optimistic. Sometimes I would scream at the windshield and slam my fists so hard on the steering wheel I thought for sure the air bag would go off. Sometimes I would drive, get home, and not recall driving, as if I was sleeping with my eyes open. We took this route on Monday and I felt it coming on, a mini panic attack. I didn't let Chloe see, which I was happy about....Justin held my hand....and told me it's okay.....As soon we passed the hospital I felt exhausted and wiped out. Sunday, the day before, was tough for me too. Sundays are hard for me......I cried at Austin's grave for awhile.......
Which brings us to tonight. Therapy went well.... I learned a lot about myself.......I am Not Superman (Superwoman...whatever) As much as I feel like I am(or want to be).
I am not immune to pain and emotions......I am not indestructible.....
Once I figured that out I allowed myself to feel what I feel and not fight it.........This, I think will be revolutionary for me........I need to ride the wave and not fight it......It will only make it worse.....
Another thing that has been heavy on my mind is the more I learn about grief, as a whole, the more it freaks me out........I read something that said.."some of your friends will get weighed down by your grief, and sadness....they may begin to distance themselves...because the weight of your situation may be overwhelming to them"
Well that sucks....I have made some real, amazing, authentic, friends......and I am going to be honest I am terrified to lose those relationships...So I learned I have a tendency to distance myself from people when I am feeling low.....What I learned tonight is that some people are in your life for a "season" some part of the season, some all and after the season......But what is beautiful about that is they are here ( or not here) for a reason to give you ( or not give you) the perspective you need......
I also learned that I am a caretaker.....I take care of others first.....which when it comes to grief...Is not the best thing.......Caretakers have so many great qualities, but they don't put themselves first......I am thinking of my friends feelings.....when I need to feel what I feel, and not worry how it affect the others.....but I don't want to be a burden.............The one time I did REALLY let my friends in......I felt so much better and so much closer to them......After a night of fun with my girlfriends.....I spilled the beans about Austin's last day..All the details that haunt me.....I remember them being there with me.....on the floor, crying with me.....hugging me.......wiping my snot.......and just listening.........I haven't felt that close to anyone (besides my husband)....let alone a handful of friends......in a really long time........I am lucky to have them.....I love them so much.......
On another note! I have mailed out the invites to the Because We Can Blankets for Babies North Dakota Event! This blessing has occupied my mind and allowed me to pour my busy energy into this....and feel so close to Austin......If you would like an invite/don't receive one in the next day email me crystal.friesz@yahoo.com

Justin and I went to the Gary Allen concert last week.......It was amazing......I sobbed most of the concert.....Here was my view

.....Just little man saying "Hi Mom, I'm Okay"

Jar of Hearts

     How to live with no fear.......after being terrified for a year straight......

     As I sit here and write, Chloe is taking a nap with Justin. Naps with Chloe are the best feeling ever. If she could climb into your shirt to snuggle you, she would.....and just when you think she sleeping she gently reaches out and softly touches your cheek and says "you're my best friend." Talk about melting my heart.
     I have no idea what 2014 will bring. It doesn't feel like a new year for me........My New Year was 7/12/12 when Austin was born.......and then I had another New Year on 7/23/13 when Austin passed. These were pivotal times in  my life. That ever present fork in the road.......Take the right way, the tough way, the rough way.......or the easy way.......I'm proud of the road I chose. I chose this road. I believe I had two separate destinies.... One with a positive outcome and one with a not-so-positive outcome..........I look back at those two dates......376 days apart and I am proud of the conscious decision I made, we made, after being dealt such pain. People often say to me, "I couldn't handle that" or "I don't know how you do it," or "I'd be a ball on the floor." But the truth is actually quite simple "YOU'RE STRONGER THAN YOU THINK YOU ARE." - quote by Scott Sutherlin.....
     When you cut the tethers, either physical or mental.......there's really is nothing you can't do. You just have to be sharp enough to know you have the scissor to cut all your preconceived ideas.
       This year we will keep a jar on the counter.....This jar will hold little memories of good times and accomplishments........We will look at these at the end of this year......this Jar will not hold bad memories or disappointments ........This jar will not hold regrets or rejections........This jar will be our attitude. This jar will become us.  
       So I ask you, What will your jar hold? Pain or Proud? Tears or conquered fears? Tethered dreams or plans coming to fruition. Cut the tethers and lets see where we go.
Happy New Year Austin. I love you so much.

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.