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!)

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 cord.....like 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 be.....it'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

Unstoppable

The message at church today was titled "Unstoppable." It got me thinking....like 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 patience....you 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

Reminisce

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.

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