Wednesday, November 22, 2017

Thankful.........even though

I am thankful I got to hold you in my arms, even when you were seizing. I am thankful I got to snuggle your warm huge cheeks, even though they were stained with port-wine birthmarks. I am thankful I got to smell your sweet baby smell, even though it had hints of the 7 seizure medicines. I am thankful that I captured your first smile on camera, even though you had a feeding tube taped to your face. I am thankful for your dark chocolate brown eyes, even though the glaucoma eventually clouded them. I am thankful your sister Chloe got to spend time with you, even though her heart breaks about not remembering. I am thankful you taught me to fight for you, and now I have the skills to fight for a healthy life for myself and our family. I am thankful I see you in some way I am thankful you had one of your first seizures in front of the Director of Childrens Neurology at Children's Hospital. I am thankful that people live differently because of your life. I am thankful people will still listen to our story and want to know about you. I am thankful people still ask about you. I am thankful for those nurses and those doctors. I am thankful God gave me a love of writing so I can tell as many people about you. I am thankful to those who never met you, Austin, but still pray and ride this crazy journey with us. I am thankful for new person I am because of you. I am thankful, but hurting. It is all so bitter-sweet. All of it.

Sunday, April 23, 2017

That Sound

Two things seem to trigger my PTSD....and let me know how just human I am. 1) Something substantially good happens....a pay raise/a new big purchase/a successful month of health............. 2) Having a little bit of time to myself... On the surface these two things would seem wonderful! But, for me and my PTSD it seems to be a trigger. I often not get "too happy" because then I am waitin' for the bus of PTSD to drive over me.... Lately I have had both, many good things happening and a little bit of time on my hands..... The sound of Justin screaming my name and the ground of our second floor townhome shaking as he ran toward me..... jolted me awake, it was a flash back dream.....and as real as the day it happened. Jesus help me. I call to You because its 2am, and it would be rude to wake up Justin or call someone....I don't call to You Jesus because I am a good follower(I am not a pro at this faith thing yet)....I call to You because I have no other options ( Sorry Jesus you're a last resort sometimes....I'm working on that) That scream. My name. Screamed. From Justin. Calm, quiet, warm Justin. I will never forget that sound. It was not human. I know that sound. That sound came out of me when they told me Austin had cancer. It haunts me randomly. Sometimes as I take a shower I think I can hear him screaming for me. Sometime I even turn off the water and listen....Just in case..... I sit in this moment and let it wash over me because fighting it is useless...My therapist has taught me I am safe so I can feel it now....I don't numb it with alcohol or pills. Or hide from it under the blankets on sunny Sunday afternoon.... I just sit in it and let it take me where it will, because I know I am safe now, and I know Jesus. I know He's looking out for me, so I've got that going for me. It was a sunny day, I remember. Austin was about 7 months old. I hadn't slept for more than 20 minutes in 2 days. I asked Justin to hold Austin for an hour so I could rest. I did what every caretaker did of a chronically ill child. I spent 30 minutes prepping for my 1 hour departure. Feeding tube filled, oximeter on, oxygen ready, his 5 11am meds prepped, diapers/wipes, emergency meds ready if needed, seizure timer ready, right down to fluffing the pillow Justin likes to use under his arm when he holds Austin for an extended period. Check, check, check.......But most importantly I went over, in great detail, the intercom.....How Justin should press the red button and it will page me if he has a seizure and I will come running. It was very important that I made Justin feel safe and comfortable so I could feel safe and comfortable. (My job was Austin, Justin is an amazing dad but I knew the details of Austin's illness like no other).........Austin's seizures had become little strokes and it was imperative that these be stopped immediately to avoid further damage to his brain....Easy conditions to live under, huh? After everything was ready I remember thinking I should just lay on the would be easier, but I knew I wouldn't sleep. My micro management wouldn't allow it. I promised Justin one more time everything would be fine, and I went and laid down. I wrestled with sleep like usual. Hold my breath straining to hear downstairs.....Stress, exhaustion finally giving in to sleep............................................That scream. I flew out of my body and met them at the door. In my flight I looked over at the intercom and saw it was unplugged.....and an pillow rested beside the plug-in.....a pillow fell off my bed and hit the bulky black box plug-in and pulled the intercom cord out of the outlet.......I met them at the door, "Crystal! He's blue! I tried to page you! I tried to page you!" Austin's was limp and blue. His lips. That color. I sprinted past them and yelled bring him down....I don't remember my feet touching the stairs on the way down.....I remember saying in my head "God, make me quick." as I spun the top on the large green oxygen tank and grabbed the emergency meds off the wall and the breathing bag. Justin put Austin in the crib and I got to work. Mom hat off. Nurse hat on. Sternum rub, air way check.....emergency meds administered at 12:15pm, ambulance in route......We made it through that time, but not without some major trauma. To all three of us. I promised Justin it would be okay and I would be there. But it wasn't okay, and I wasn't there. We know it was an accident. He forgave me immediately. I never did, forgive myself, that is. Weird thing about grief. Someone will read this and feel bad for me....But I actually feel better...... Tired. But better.........sometimes you have to just get it all out and let it be where it lies........................................................................................................................................................................................................................... Thank you for letting me word vomit all over your day. I don't know why you read this but you do. And I still feel your love and prayers. So, thank you. With tired love, Austin's mom

Sunday, February 28, 2016

How to be a Mom to an Angel

I know my work as a mom with Austin isn't finished. My physical job of caring for him is over. I will not change is diapers. I will not scare monsters away from under the bed. I will not take his picture before getting on the school bus with an oversized backpack and Velcro superman shoes. I will not embarrass him in front of his first girlfriend. I will not mirror the woman I would want him to marry. I will not guide him through the tough first weeks at college. These things I will not do. It sucks. But my work isn't done with him. Sometimes, for me, living like Jesus would is hard. Its too far of a concept. Its too unattainable. But to live like Austin would want me to seems attainable. Hard. But attainable. So I ask myself. Every.Single.Day. What would Austin want me to do? And for some reason I always know the answer. He would want me to go to therapy. Not just anyone. A specialist who deals with the death of children. He would want me to not follow my knee- jerk reaction to cancel the appointment the night before. He would want me to show up and recklessly throw myself into the hell, pain and fear of those days. He would want me to ugly face cry, be pissed off, stomp around and rage for that one hour in therapy. He would want me to then let it go on the 61st minute. He would want me to know I did good work. That I can sit with this pain. Feel it, purge it, digest it. And okay. It doesn't have to be Pandora's box. I can close it and open it as I choose. I am strong. I am in control. I can do it. Austin would want me to know this. This would make Austin happy. This would make Austin feel cared for. By taking care of my emotional self, I am being a good mom to Austin. That is how I will be his mom now. Would I rather care for him like I do my daughters? Of fricken course. So much easier. But I can't.......................................... So that's what I have been doing for the last month and a half. I have been in, what I would call intense, specialized therapy. I am reading Austin's caringbridge during my session. We are at the point when Austin was 12 weeks old and they found a mass near Austin's spine and we are just about to be told that it is cancer......It. is. hard. With my plethora of vocabulary I still cant think of a better word. Gut wrenching, perhaps? Pain and panic inducing? I don't want to go there I just want to leave it all behind. Leave it in the dust. But I can't. Its like my shadow. Coming out on the sunny days, blocking out the warmth. I have developed some ridiculous anxiety because I haven't dealt with or processed what I went through. Reading caringbridge to my therapist I am like a random Austin follower. I don't recall writing those words. I am reading them for the first time.........I follow her journey. She paints a honest and heartbreaking and beautiful picture. She is honest but strives for the light. I am proud of her. She, is me. I, am her. I am proud of myself. I have a hard time connecting the dots. That was me writing then and this is me now. Alive and still breathing. Austin wants me to not just live and breath though. He wants me to be the best I can here on earth until we are reunited in Heaven. He wants me to find my way back. And if that's what my baby wants, well then that's what my baby gets. I am on a mission. A mission of health. Mind, body and soul. There has been a shift in me. Those closest to me feel it and see it. This therapy, my hard work, my diet, my workouts are changing me. I am excited. I am refreshed. I am finally getting healthy. In every sense of the word. 949 days days after Austin took his last breath, I feel like I am taking my first. I am taking no prisioners. I am on fire. I am reborn. Who's coming with me. To all my friends who have been with me through this hell. Thank you. Thank you for never giving up and always seeing me inside my grief. Life is good. I'm taking it....................................................................................................................................................................................................................................................................................... For those of you who would like to read Austin's journey on Caringbridge here is the link:( you will need to copy and past it in your browser) ............ Some like to know it all, some don't and that's okay. Read at your own Risk. Its an emotional beautiful amazingly terrible journey that not all are meant to take..... Click 'Journal' and then Sort Old to New to start from the beginning

Friday, September 4, 2015

Nothing Changes if Nothing Changes

Well, everything is changing. Which is bitter sweet. When things change, time moves. When time moves, I feel like Austin is getting left behind. When nothing changes it feels like time hasn't passed and Austin is still here. I look around my home and every inch of this place tells a story. A seizure here. A strong PT session lifting his head over there. Fetal position tears on the floor over here, and joyous giggles over there. I have lived in this beautiful, clean box of memories with Austin. Everywhere I look in my home I think of Austin. Some good, happy times, some pure terror.......We are currently building our dream home which will be completed in 60 days. I am reaching a goal I have had all my life. I have pinned thousands of pins on pinterest on home design never really believing I would have.......well now we are...... My husband has worked so hard and we have been conservative with our money for this goal. Building our forever home. We are so blessed to be able to do this. We are so ridiculously lucky. As this day comes closer, I realize there will be no memories of Austin in this new home. I know new, amazing memories will happen in this new home. Chloe's first day of kindergarten, Charlotte's first steps....tears about boys at the kitchen table and midnight snacks by the glow of the refrigerator, Christmas morning and Sunday football...... I know this. I also know I will always look at my family eating supper at the kitchen table and wonder where Austin would sit, how tall would he be now, would he like carrots? Wonder how he would interact with his sisters, and what color he would want his room to be......Symbolism is everywhere for me, always. This new home represents my future. I once again have two choices, to carry pain and hurt, and heaviness into a brand new, light, untarnished space......... Or I can find new ways to remember. I can sprinkle good memories in this new space. I can find new ways to thrive. New angles to see....... It easy right now. I just look around my home and I am reminded. Now, I will have to work a little harder to remind myself of the blessings. Paint and design my future how I choose. My home now has held all my firsts.... College degree, marriage, my first reliable car, my first real job, pregnancy, my first born, her first steps, Austin, and Charlotte Mae.... In the future when I drive by this lovely, end-unit townhome I will only think of one thing. My sweet Austin.

Monday, June 29, 2015

She's Here!

Just a quick post to say Charlotte Mae Friesz made her grand entrance on Tuesday June 9th at 4:10am. 8 pounds 15 ounces of pure beauty! She is doing really well. She sleeps pretty well for a newborn. She is gaining weight and showing no signs of any issues. She was born with a birthmark in between her eyes and a stork bite on the back of her neck ( scared the SH%* out of me the first 2 weeks) but now I think its a nod to Austin. I am working through my anxiety. I am waiting for the other shoe to drop, so to speak. But I am leaning on my faith and Austin to work through that. I love her so much already it scares me....Last time I felt like this it didn't end well. But again, overall I am doing well. Happy and scared something will come up at the same time....Its a weird combo of feelings, but I still feel so blessed. Chloe is the best big sister. Just like you would imagine, but even better. She is so gentle and is able to calm Charlotte in the car! Justin is completely head over heels......Another lady with her daddy wrapped around her finger.....I have so much to post but sleep deprivation is not allowing time to sit and write but I will soon.....I've learned so much about myself the last 3 weeks...... With newborn spit-up and snuggly nervous love, Chloe,Austin, and Charlotte's mom (holy crap I have 3 kids!)

Thursday, April 30, 2015

This is Tougher than I thought

I have between 2-4 weeks left of my pregnancy. I have sailed through this process with the exception of the 20 week ultrasound week. That was stressful. The ultrasound came back, great, normal. Now I have hit a wall. Pandoras box is open. I am imagining the worst. ALmost preparing my soul for terrible terrible things so it won't come as such a shock to the system like Austin was. With Austin we had clear check ups and a perfect ultrasound. Everything was kosher with him. Until he was born..... I remember the last 5 weeks of my pregnancy with Austin feeling a weird repetitive kick. Justin and I were watching Americas Got Talent and I called him over...."You feel that?" "Yeah." "That feels weird, its not hiccups, I don't like it." And that was it. I never talked about it again. When Austin was 12 days old in the NICU and I watch his foot, tick, tick, tick, in a fast motion.....I knew in my heart what I was feeling those last 5 weeks, he was seizing in utero. There is not any documentation (besides 3 cases in Japan) of seizures in utero. But I knew in my heart. I knew that is what was happening. All through Austin's life I had such a feeling. I just kinda knew things, my motherly intuition, no matter how terrifying, was ALWAYS right....ALways. Fast forward to today. I knew that when this baby girl would start having hiccups I knew this would be a trigger for me....It's rhythmic, repetitive...Sure enough at the end of March I started feeling them. It was terrifying. I would pause the TV. Hold my breath. Count. Wait. Painfully wait for them to stop. Then I would have this little worry in my head for the rest of the day. As the month of April progressed I forced myself to the accept the hiccups. I would say a little prayer every time and take all my energy to not let it taint my day. Now this little girl decided she wants to press out with her foot in a somewhat rhythmic pattern. Not like Austin did. Austin's felt like a tick, tick, tick......She likes to tiny push, tiny push, tiny push..... But enough for me to lose it. I've talked with my midwife about it. She is not worried. Shes wants me to be emotionally okay. She wants me to stay calm. It happens sometimes several times a day, this foot push thing the baby does. Somedays not at all. There are not 2 Sturge-Weber babies in a family. It is not hereditary, it has nothing to do with egg or sperm quality. Doctors call it a biological anomaly in the early stages of development. Biological anomaly, I hate that word. I met with a high risk doctor, had a battery of tests, and was cleared and deemed "unremarkable and boring" in terms of reproductive health....which I, of course, found great comfort in....... So, I do not think this baby girl has Sturge-Weber. I am just worried about EVERYTHING else that could be wrong. Epilepsy, or some other terrible neurological disorder, or maybe the delivery goes wrong, or the I said, pandoras box is open and its ugly.... There's no shutting it for me. I find no comfort in you can handle whatever is thrown at you.... or, Im sure she's fine... I would say the same thing to myself....but my anxiety has completely taken over reality. I am not thinking rationally... I am trying to stay calm because I share a body with this baby. But there is a small cloud of doubt and darkness following me. I have been through hell. And being pregnant again is bringing out all my fears. I am hoping for the best and, in a way, preparing for the worst. It's sad the write that. What a crappy place to's not me....... But it is real. It's where I am at. My midwife said it will be 6 months before I will exhale. Before I will believe that she is okay. I can see that. I've made it though 90% of what I knew would be one of the most difficult things in my life...and thats saying a lot after all I've been through....I just need to push through this last 10%.....everything is out of my hands......and in God's....what will happen is already written......Just please Jesus, let her be healthy. Let me look back at this time, as a time of insecurity ....and let it only help my faith grow stronger.... God I thank you for Justin. Thank you for picking him for me to journey with... He has held me up, let me cry, let me be weak, and been quick to forgive, and always willing to listen...Even in my darkness I am still in awe of all the light you have given me.................................. With weary love, Austin's mom

Sunday, February 1, 2015


The message at church today was titled "Unstoppable." It got me every good church should do. Growing up I always felt unstoppable. I always had an I-got-this an Eye-of-the-tiger kinda of mentality. Growing up wasn't at all easy and I was given an extraordinary amount of responsibility at a very young age (as the oldest children of divorce tend to have) My childhood only amplified my Eye-of-the-tiger..I-got-this mentality. Somewhere along my life this mentality morphed into me doing everything for myself. EVERYTHING. If you are close to me, you have offered help in some way or another. And what have I said? "No, but thank you though!" Sound familiar? I had a friend finally say, "JUST LET ME LOVE YOU!" and it hit me... I have not only done this in my relationships with close friends but with God and my faith too.... "I got this".....push the fear and anxiety down...."No thanks, I got this"....I'll figure something out all by myself...."I got this" For those of you who may not know, I am 6 months pregnant with our 3rd child. (its another girl!) And as you can imagine this time has been laced with fear and intertwined with anxiety....Having a normal pregnancy with Austin and then having everything fall apart the way it did.....All of it.....being pregnant again it just instills a fear....BUT I would be crippled by this process if I didn't hear His words recently... "Just let me love you....let me help you...." I know if I didn't have my faith this process would be completely unbearable. The fear would swallow me whole. No doubt. But God's persistence and love and by allowing Him in, has benefitted me tremendously. I know my faith in God doesn't mean I will get a perfectly healthy baby, and my delivery will be perfect and everything will be perfect perfect perfect....what it does mean is no matter what happens, I will be okay. We will be okay. For me, letting others love me and take care of me is not easy. I will continue to work on it. But I am so grateful for those in my life who show me how. Namely, my husband. Talk about an exercise in persistence. You, sir, love me at my most unloveable. 11 years of work and deserve the worlds largest, prettiest, most fantastic metal....but I guess you will have to settle with your 3 children and my love that will have to do...............Sarah, Nicole and Shelly, Thank you for your persistence, INSISTENCE, and patience with me. I have learned so much about myself through your love. I will let you love me!!!!
With Unstoppable Love, Austin's Mom

Thursday, December 11, 2014


I have not posted in quite a while. There are a lot of reasons for this. I am scared of what I might say. Having a record of it, reading it years down the road and then cringing. But this is reality. It is unavoidable. It is my life............ You know when a kid falls down....hard.................. and every mom gasps and holds her breath.................... and the kid doesn't respond right away......then BAM the kid loses it,... like snot-dripping, red-faced, blood-curdling-screams loses it........................ We all knew it was coming, the kid fell hard, there's no way that didn't hurt. Well, I am that kid. And after a year and four months, 506 long days,... I am that screaming, snot-dripping, red-faced kid. I am feeling the full and absolute effect of this pain. Is it because others are no longer acknowledging my son? Is it because this is just the cruel progression of grief in the loss of a child? Is this just me, and how long it takes for me to process things? The Holidays? What!? So many questions and still no answers. I have forgotten who I was before this. Completely. Until this afternoon. I was cleaning out a my desk drawer when I came across a small hand held video recorder we purchased after Chloe was born. I found the USB cord and watched the videos on my computer. And there I was, in all my glory.... She was pretty, and lively, and stoked about everything... almost annoyingly so. She was full of life, but not naive. Smart, and quick witted. Just happy and unapologetic. She was genuinely happy. Not the kind of happy people fake when the camera is on....but a happy you could feel, a bright yellow light. I envied her. My mind didn't make the connection that we me. I watched it as a third person not even on purpose, simply because I didn't recognize her. I cannot believe that was me. She was me. I ache to be that girl. I am so worn and tired compared to her. I got a glimpse into how I used to be. And I was awesome. I dont even care how that sounds. I had it together. A blossoming career, a new baby, I was looking fit and trim, and had a good man. I had the world by the cojones.................. I know it was a few quick glimpses into the past. I know there are such things as rose-colored glasses. I know there was struggles then too. But I didn't wear them on me like I do now. How do I get back? Is there any going back? Can I just have it a little? I knew who I was when Austin was here. I was that same awesome girl, with a hell of a responsibility. I dont know who I am now that he is gone. My faith has waivered. After all this time. In hard times with Austin my faith was untouchable. And now it is shattered?? I don't understand it. I don't understand much anymore. But I do know a couple things. I have a husband who loves me, a daughter who amazes me everyday, and a very few select friends who will not let me go. No matter how much I want to be left alone. That is all I know. That's it. And I guess I have to learn to be okay with that right now.

Sunday, August 3, 2014

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 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.

Tuesday, July 8, 2014

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 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' 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.

Wednesday, July 2, 2014

Opportunity to donate for Blankets for Babies MN

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Tuesday, May 6, 2014

Angels (Nurses) Part 1

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 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

Friday, April 25, 2014

Eh, Skip this 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 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.    

Tuesday, April 1, 2014


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 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 no matter how much God helps me lighted my 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'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? 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

Thursday, March 6, 2014

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 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 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 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
Saturday April 12th 5pm
Sixteen03 Event Center Bismarck ND
Join us for a night to remember