Choosing Joy

 I have tons that I'm excited to update about. But this little boy has been on my mind so much recently, that maybe for the sake of my own sanity, I need to post about it. My feelings can be summed up in this quote I found from a friends blog, who is also the mother of an angel baby: 

“Death does not unmake a mother. If anything, we need to be more resourceful in our mothering. There are no parenting books, no theories on how to parent a dead child. But we still parent. We just make it all up, each day, as we go along, hurting and healing. Parenting is just tailoring maternal love to fit each child. We do that with our dead babies too. We wonder which flower would honor their lives, we relish speaking their names. We collect drawings of butterflies, quotes that touch our hearts, we write their names on the sand and in the snow.

We remember. We remember all the time. We remember the love. Also, the pain. That odd quality we have about us… it’s because we have something special. We have extra love in our hearts. Love that can’t translate into choosing the safest rear-facing car seat, so it becomes love that wonders and meanders, most times with nowhere to go. So this love with no port, it flutters about. Sometimes it bursts out through tears, stinging sobs. Other times it makes for a sideways smile when we remember our child. And it always makes us seem just a teeny bit off. Because we are. A little person is missing from our arms. But all the love for them is here, inside us, bubbling away in everything we do.”

Everyday, I remember. But today, I choose to remember the love. Even though the pain is just a thought away, I choose hope and joy.  It's a good feeling. 

♥♥♥♥♥♥

May 3rd - 1 year

Up until yesterday, I dreaded the 1 year mark of my baby's birth. I'm going to be honest, I haven't even been back to his grave since he passed away. I just didn't want to miss him anymore then I already did every single day. And I felt like somehow, it would be like pouring salt in the wound. 

But as May 3rd came and went, I came to understand a little more about what it means to heal. Saturday morning I was staying at my in-laws preparing for plans we had made with both families for the 1 year mark that night (more on that to come). Because they live so close to Primary Children's, I decided to go there, and my sister-in-law, Lise, joined me. I knew no matter how terrified I was, I had to confront my fear. Jon was studying for the MCAT he takes in a few days, and he told me later that he couldn't have done it, even if he wanted to. That surprised me; there are few things my husband admits to not being able to do. 

As we drove up the familiar hill past the U of U flags and the "Primary Chilrden's" sign, I suddenly felt a peaceful feeling come over me. We parked, and walked through the entrance and passed the front desk, and it felt like a déjà vu. My heart pounded as we made our way up the elevator to the NICU. We stopped at the locked doors that require you to call in and tell them the family you are with before they will let you in. I suddenly missed what it was like a year ago, when I had full access to anything I wanted because I was the mother of a baby there. But now he was gone, and I was a stranger to them. 

 I thought there was no way they'd let me in, but for my own sake, I had to try. I picked up the phone: "Reception, can I ask who you are here for?" came from the other end. Suddenly the thought crossed my mind: "You should have never come here." But I mustered up the courage and told them I wasn't there for anyone, but I had a son that was born exactly a year ago that stayed here and eventually died here and I just wanted to go inside for just a minute. She sounded confused and eventually said "Okay, but we can't let you go in any of the rooms." I told her that was okay, and the doors swung open. It felt surreal as I made my way up to the front desk, passing the room he died in on my way there. I was greeted by a nurse, asking how she could help me. The receptionist told her, "She lost a baby here last year." The nurse responded kindly, "Oh! Who was your baby?" Suddenly, the tears started coming before I could stop them. "My baby?" I thought. It threw me off guard how hard I had to try not to start bawling. I rarely cry just because someone brings him up, but the familiar feeling in that room, the fact that his incubator was right around the corner, and the room he died in was just a few steps to my left.. I couldn't speak without crying. 

It felt like no time had passed, like it was just yesterday I was here with Jon for hours at a time, worried about whether Jon Gabriel's condition would continue to get worse. I wanted so badly to be able to walk around the corner, see him in his incubator, tell the nurse I was his mom, and be able to hold him again. But that wasn't possible, and I knew the nurse that had greeted me was still waiting for a response, so I managed to whisper, "I'm sorry".  That was all I could say. "Don't you apologize," she said softly, "Take all the time you need." She gave me a hug and 2 other nurses came up and asked what the situation was. They both asked if they could give me a hug and told me how sorry they were, and it occurred to me that they saw this kind of thing all the time, but they treated me like I was the first. It reminded me how good the team at Primary Children's was to us when we found out about the defects and made plans for surgery, and how hard they fought to keep my son alive for those  5 days he was here. 

After a few minutes, we left. I went and sat in the lobby for a minute, and just let myself cry over how hard it was to go in there knowing he wasn't there anymore, and allow all the emotions to hit me all over again. But within a few minutes, something beautiful took place inside of me. I felt liberated, and a relief swept over me as I realized I had overcome a major obstacle. I left Primary Children's feeling whole, like I had done my part in allowing myself to be comforted. 

And it occurred to me that sometimes, the healing is in the aching.  

9 months

This Friday, February 7th, marks the 9 month mark of my baby's passing, and while I know that it may seem like a long time for some, there are days when it feels like just yesterday. 

I like the idea of being able to track what I have felt over the course of the past few months, so I can understand how my grief has changed over time. 

I still have people ask how I'm doing..

They will never know how much it means to me that they still acknowledge that even though it's been 9 months, 

I still struggle. 

The other day, one friend messaged me on Facebook and asked, "How are you doing, Madds, really??" 

It caught me off guard. 

I've spent 9 months striving to be at the point where I can feel completely back to normal. 

It caused me to really think about her question, and I think I've finally come up with an exact answer. 

To be honest, one day will be hard, then the next is even worse, but then one day i'll wake up, and  i'll feel more capable of moving forward and more hopeful that happiness is indeed in the future.

And then, bam.. 

I'm sad again, I feel scared and lonely, and I don't want to keep going. 

Literally a roller coaster of ups and downs. 

Can any of you relate? 

I am lucky to say that the roller coaster is beginning to even out a little more for me. 

But even though the heart ache and sadness come less frequently, there is one feeling that still comes back frequently, that I have not been able to pin point until just recently:

Fear. 

Time has begun to heal my heart, and in the process it's attempted to heal my memory.. 

But fear still remains. 

Yes there is fear of the future, but it doesn't compare to the fear of the past. 

The truth is, death is traumatizing. 

Some cases are more traumatizing than others, but to watch someone die.. 

Especially your child,

it changes you. 

There's nothing on this earth like it. 

And to this day, May 7th, 2013 still haunts me. 

I remember holding Jon Gabriel close and begging God to take good care of him for me, with the comfort of knowing we still had a few hours left with him.

But his heartbeat started to drop before we were ready to say goodbye. When that happens, the big machine makes this loud beeping sound that would put any parent into a panic. 

Jon and I both knew, no matter how much we didn't want it to be true, it was time to let him go. 

 Jon went to go get the nurse.. I remember I didn't envy what that walk across the hall to her room would have felt like.. 

Jon Gabriel was in my arms, and the nurse hurriedly removed the wires, the only thing keeping him on this earth, 

then she quickly left the room. 

 We were able to see his face completely for the first time. 

It seemed so unfair, he looked flawless from the outside. 

I put my face close to his and held him as he struggled.. 

I had assumed I would be able to handle it, but I was wrong. 

"I can't do this" I gasped, feeling void of strength. 

Jon took him out of my arms, and I jumped up, my face full of tears, 

and walked anxiously to the corner of the room. 

I ran my hands through my hair. The tears stopped, 

my breathing increased as my chest felt heavier, 

and for the first time ever, I had absolutely no answers. 

All I could do was whimper a short prayer. I had no idea how to handle what I was feeling. 

I've never felt so desperate; never so useless. 

There was absolutely nothing I could do, and it was the worst most humbling feeling.

"You have to hold yourself together," I thought, "Your son is dying, and you won't get this chance again." 

I took a deep breathe, and hurried and sat back on the couch with Jon, who had our baby in his arms and was whispering in his ear. 

When I sat down Jon handed him back to me, and I spent his last few seconds on earth kissing him good bye and telling him I promised I'd see him again I just didn't know when.

His body went limp, and he was gone. All within 2 minutes. 

The rest of the night was a b l u r. 

We bathed and dressed him. There was a big cut on his back from when they hurried and pulled him out during the c- section. 

"My poor baby.." I cried. I felt another sharp blow to the chest. 

I remember I would have been willing to give anything on the earth, to see him come back to life. 

Despite how horrifying yet beautiful it was to spend time taking care of him even though we couldn't do it for him while he was alive, 

I honestly know I was carried in those moments. 

Something made those moments with his lifeless body easier for us, and I couldn't shake the feeling that I knew he wasn't gone completely. 

The nurse had told us that when we were ready to leave, to just wrap him up and leave him on his little bed.. 

I don't know how I left that hospital room, but I did. 

It helped me appreciate the strength that comes from others prayers, because without them I couldn't have done it. 

I literally felt carried.

It's a strength that's indescribable, and it carried on to the days that followed. Even his funeral was surreal. 

That is why my first few blog posts about it didn't have these details, because the details didn't stand out to me. It was the feeling of hope and strength I had received that stood out to me most. 

But after a couple of months, the darkness came.

Slowly the demons began to take over. 

The trauma.. the guilt. 

Thoughts too scary to acknowledge, because acknowledging them would mean having to feel a deep and dark pain that I don't think I can handle. 

One of the worst fears is the fear of yourself. 

The fear that everything happened because of you.. 

Or that everything will happen despite of you.

That somehow, you are the cause, you are the reason for the pain, because you aren't capable of preventing it. 

Thoughts like: 

Why didn't I appreciate more the moments he was safe inside of me, as active as any other little baby? 

What would his cry sound like? Would he have had his dads smile? 

He had a distinct smell, I loved it, so why can't I remember it? 

Was I too quick to let him go? I remember feeling like I needed to get it over with, how could I even feel that way? 

I must have caused the defects, how else would they have happened?

I know so many people who have been through much worse, so why am I having such a hard time still? 

How could I not be strong enough to hold him the whole 2 minutes before he was gone? 

Why did I not appreciate his perfect beauty, why could I not be there for him more as he struggled? 

What if one day, the dark feelings get to be too much, and I snap? 

Will I get to be with him then? 

Will I ever get another child? One I don't have to say goodbye to before I get the chance to love them completely? 

The unanswered questions have led to a darkness I didn't know existed. 

Nightmares that cause me to wake up covered in tears and sweat. 

If I had to experience something this horrific, then my life must be free game and anything could happen.. 

On the worst days, it's enough to make me just want to sit in a corner, put my thumb in my mouth and cry like a baby. 

While slowly i'm healing, the fear, and the reality of the unanswered questions are still very much there. 

The terror of that night will never go away completely. 

How helpless and small I felt, watching him suffer and slowly pass away, while there was nothing I could do to stop it. 

It will always haunt me. 

And yet, I can feel myself changing every time I choose not to let the fear engulf me. 

I can feel myself growing a little stronger every time I hold on to the truth I have been given. 

Because despite the horror of that night, despite the pain and fear that have followed ever since, 

I know, I was meant to experience this. 

Like somehow, I agreed to it. And because I agreed to it, 

I have managed to find the light, despite the darkness.

I know that I wouldn't understand the power and the beauty of the light, if the darkness didn't come back to haunt me every so often. 

And while the light exists, and it offers peace and understanding, it is ok to acknowledge the darkness that's there too. 

It's in each of us, and it's not about how much is there, but about how we will overcome it.  

This picture hangs in my living room:

It was given to me by some good friends after Jon Gabriel passed away. 

It has always brought me comfort as I have pictured my son in the arms of our Savior, 

knowing he is safe and secure.  

But one day as I was having a particularly difficult time, my eyes graced that picture and  a voice spoke to my mind, 

"You're my child too." 

And those days when I did feel carried, when I did feel someone was taking the burden for me, 

it was Him. 

And just like little children have an inherent kind of trust in their parents, the Savior can offer us complete feelings of peace and calm, when we put ourselves trustingly in His arms. 

And when I let Him, he helps me fight the dark feelings.  

Because they don't come where He is. 

A few years ago, when Jon and I would study in his lab together, he had a playlist on Grooveshark that he would play over and over. 

The song "Demons", by Imagine Dragons was one of the songs. 

I had never heard it before, and I remember really liking it.

The song still brings back memories of those study nights in Jon's lab, but now the words have a deeper significance. 

The cover below is by Hearts and Hands, and it is amazing! 

I have to say I like it  better than the original. 

I went to high school with Garrett, the lead singer, and he has always had incredible talent.

The lyrics have a different meaning to me now then when I first heard it a few years ago.. 

But I guess that's how it works, 

 as more of your story begins to unfold, you learn how to relate to more people and experiences. 

And as difficult times continue to take place, you'll realize you can never go back to the normal you once knew.. 

But that's the price of greatness. 

And to me, it's a price worth paying.

♥♥♥♥♥♥

A New Year

As the New year got closer and closer, I couldn't help but think of last New Years Eve, 

a year ago:

We were making egg rolls at my in-laws house, one of their fun holiday traditions. 

Besides feelings sick to my stomach (because the smell of just about everything made me nauseous in my first trimester)

I remember as it got closer to midnight, I couldn't shake the question in my mind.. 

What will life be like exactly one year from now?

This wasn't going to be like any year before. 

I was newly married, which offered its own set of challenges, opportunities for growth and maturity, and exciting adventures. 

I knew we'd have a 6 month old baby come the end of 2013.

But that was about all I knew.

I didn't know whether or not the baby would be healthy, I just assumed they would. 

I didn't know if I would be able to finish school or continue to work with a new born. 

I didn't know if we would be able to pay for labor and delivery and all the extra costs that come with a new baby. 

I didn't know where we would be living, or what kind of health insurance we would find.

I wasn't sure how Jon's MCAT would go, or how the rest of his academic endeavors would pan out. 

I didn't know what we'd name our baby, or even whether it was a boy or a girl. 

I didn't know a lot of things, 

but I continued to let all of these unanswered questions occupy my mind.

Not only in that night, but a majority of the time, my thoughts found their way back to worry. 

If I could go back to that night..

If I could just have one hour to talk to that girl I was one year ago, from the perspective I have now.. 

I would tell her this: 

"Stop. 

Stop wondering.

Stop worrying.

No amount of questioning,

no amount of worry or stress will prepare you for what is about to come.

You have to change what you think about, because you are not meant to be in control of what happens to you.

There will be multiple occasions in 2013 when you will hit rock bottom, and you will be angry that you aren't in control. You will think that surely you know what is best.

I can tell you that the things that are about to take place..

even though you may not see it, 

they are a tender mercy.

You won't understand it, you will be pretty miserable, pretty heartbroken and hopeless..

It will take time..

But I promise, you'll start to see the light again.

You'll start to see that through those moments when you were completely lost and alone,

they were leading you closer to home.

Without those moments that brought you to your knees,

your life would be mediocre at best.

Never too happy, never too sad.

Never really knowing your limits, because you've never been close to them.

And there's one thing you need to know, 

the mediocre don't make it home.

Yes, it will be incredibly hard. 

Harder then anything you've experienced up to this point.

You'll question yourself. You'll question God. You'll question life in general.

But in the end, you'll be grateful you aren't in control.

You'll be grateful He loved you enough, to lead you home."

If I could go back to a year ago, that is what I would tell "me"..

Not because it would change the outcome, but because it would have saved me a lot of time and energy that went toward worrying about things that I couldn't control anyway.

It would have reminded myself to put that same amount of energy toward things I can control, like my own personal development, and my happiness in the moment.

I've always wondered what people mean when they say "Live each day like it's your last".

To me, that's stupid.

You'd be like, crying.

Just take every day for what it is: a new day.

A new opportunity to work toward the person you want to become.

I don't believe living life to the fullest means you have to embark on some incredible adventure everyday. 

I think learning to control your thoughts, choosing to think about things that motivate you, drive you, and make you happy.. 

and working hard toward the goals you've set,

that's what it means to live life to the fullest. And consistently doing this will lead to happiness. 

And you may end up realizing you were on an adventure all along. 

I've learned this year that happiness take incredible amount of effort, both mentally and physically. 

And I've made a few resolutions that can take me one step closer to embracing each day in 2014.

Taken the last day of 2013, after he almost killed us both with fireworks:) 

I won't tell you all of them, because I know you probably don't care,

But I have three that I'm pretty stoked about.

1. Let it go.

Forget about the what if's and maybes. All those do is create expectations that make it impossible to be happy in the moment. Instead I want to focus on things that I have control over, like how I can become better, physically, emotionally, and spiritually. If I recognize that some things I just can't control, I won't stress myself out attempting to. 

I have this goal, and it's probably dumb. 

But the goal is that one day I want to be that mom that just found out there was a bill that forgot to get paid, and there was a huge late fee. Even worse, it will be when Jon is in residency and the majority of that small income will be toward paying off student loans. At that same time, I picture one of my kids coming up to me telling me he forgot to do his homework, while another knocks their plate off the counter leaving shattered glass and food everywhere. Jon won't be around much, and I will feel pretty lonely and worn out.

One day, my goal is to be able to take all that little stress, and remember this moment and think to myself,

"You knew this would happen." 

And then, I want to be able to take a deep breath, maybe laugh to myself because it will be the last thing I want to do, and let it go.  I want to put that energy toward taking it one step at a time, rather then focusing on the stress and worry. I know my reaction will have a far bigger impact in the long run, then a missed assignment, a late fee, or spilled food. 

This may not seem like a worthy goal, but I see it benefiting far greater things. 

2. Be honest.

No, this isn't because I'm a cheater or a liar. This is because I want to be more honest in my blog posts. 

The truth is, losing my son was devastating. But it's not the only part of my life that is hard. There's actually a lot more to it. Those things you read above about the "moments that brought me to my knees" those moments didn't just involve losing my baby. 

But you probably didn't know that huh? 

I want to be more honest, because reading blogs that share perfect pictures with perfect stories do nothing for me. Those moments, that I can guarantee almost everyone feels at some point, yet you think to yourself, "Am I the only one who feels this way?" I want to articulate those moments, so people leave feeling a little better, knowing they aren't alone. 

No, I'm not going to give you all the details about arguments Jon and I have. But I'll tell you there are plenty. I won't tell you about the family issues, but I'll let you know their there. 

Because I want to be honest. I'm human, and you are too. Now that we've acknowledged that, lets make each others journey a little bit easier. And we can start by not making one another feel worse with unrealistic portrayals of our lives. 

3. Put Jon first.

Does that sound sexist? I don't really care. That boy is so good to me. I care about him more than anything and I want to be better at showing it. I know that putting my marriage first is the best way to help me become better. Whether it's a better student, a better employee, a better mother, putting Jon first will help me get there. 

There you have it. My 3 main goals.

2013 was hard in every sense of the word, and I wouldn't trade it for anything..

But I am definitely grateful for a new start! 

And so far, 2014 has already started off great:) 

We've set off fireworks, saw the second movie of The Hobbit, and talked ourselves into taking the week off.. 

 I know the challenges of 2013 aren't over yet, but I've chosen to approach them in a new way. 

What have you learned in 2013? And how do you want to make  2014 better?

Happy New Year!:)

This post has no title.

Warning: This probably isn't that uplifting. Well the amazing music video at the end is! But this is my place to talk about my heart, which includes both the good feelings and bad, and if you relate, that's amazing. If you want to comment about how much you relate, I probably will want to be best friends. I am not complaining, I'm really just... expressing. 

Lastly, if you are sick of hearing about this, I totally understand. I honestly don't blame you in the slightest. I sure wish I was over it too. 

What does depression feel like? 

I'm legitematly wondering. 

I googled it, to see if that's what I was feeling, and it wasn't quite it.. 

What I found on google was most depressed people feel as if they wish they never existed in the first place. 

That would be so difficult to deal with. 

I haven't reached that point yet, thank heavens. 

If I never existed, I would have never got to meet my son, or laugh with my husband, or know what it's like to run into an old friend. 

I'm glad I get to experience these things. 

But I have had the toughest time lately. 

Why now?

During those couple weeks of constant ultrasounds and praying and hoping, one of the messages I received was from someone who had twins and lost her baby girl to HLHS. 

I can't even express how much it helped me to have her reach out to me. 

We have exchanged lots of messages since, but something from that first message still stuck out to me: 

"After a year, I finally went to therapy." 

I remember thinking, a year? 

There is no way I will have to do that. 

Her situation was different from mine (for certain reasons) so I was sure I wouldn't need that.  

Now I totally get what she was saying.

They say time heals all wounds.. 

I'd say time is a living hell. 

But I guess it's all part of the deal. 

The 5 stages of grief: denial, anger, depression, bargaining, acceptance. 

I don't even know which one I'm at anymore.

I feel angry/lonely/scared a lot. 

I'm not angry with God. 

He's only given me an opportunity to prove myself, and to be 100% honest, I'm grateful that he trusts me. 

Mostly I just feel anger at myself. 

Why? I honestly can't even tell you. 

Most times I just regret not appreciating certain moments with him more. 

Or because I don't think I'm being strong enough. 

 I still wish things could have turned out differently. I still wish my son didn't have to feel so much pain. I still wish he was here, and I could hold and kiss him whenever I wanted. 

I still cry. I still hurt.

More than I think I should.   

People tell me how strong I am. 

But I'm feeling less and less strong as the days go by. 

So I did this really dumb thing, that I'm now regretting. 

I thought, "This fall Jon's gonna be busy (he's always gone.. poor guy) , so I'm gonna make myself so busy that I won't have time to be sad or lonely." 

17 credits, 7 hours of internship, and 20 hours of work later, and I'm dying. 

I've learned, nothing can keep me from feeling things. 

If I feel sad, I have to allow myself to feel sad, and not just go about my daily routine just pretending it's not there. 

Luckily I'm getting by. 

Getting somewhat close to A's.  

Jon submitted a story I wrote about our son, and just a few weeks ago I found out I won a scholarship from some pretty amazing people.

That was a really big blessing. 

I got to go to a luncheon and meet the couple who gave it to me. 

It was a really cool experience. 

It makes me want to be more giving of myself. 

After all, everyone has their own story. 

And if this music video doesn't make your whole day, then I just don't even know..:)

Also, do you see why this post doesn't have a title? 

Because I don't even know the point i'm trying to make right now. 

I guess sometimes, it's ok to be sad. 

You don't always need a point. 

♥♥♥♥♥♥

This moment..

        

I'll never forget it. 

National Pregnancy and Infant Loss Awareness Day

My emotions have been all over the place lately. 

(If you are new to this page, and have not read my sons story, you can read about it here, and here) 

Sometimes I'm happy with my life and grateful for everything, including the good and the bad. 

Other times I feel emotionally .. heavy. 

Like I'm carrying around an emptiness that actually weighs tons. 

And I think, "What's the point?" 

I now know what people meant when they told me the pain would never go away completely. 

But I never knew that even 6 months later, I'd still feel a stab in the chest when I see his picture. 

That I'd still get tears watching video footage of him.  

That I'd randomly be walking to class, and just wish someone on the way knew him like I did. 

Or just had been through the same thing, so we could talk about it. 

These feelings are not always there. 

And that's what makes it hard. 

Why all of a sudden? I often wonder. 

However, I do know what caused the emotion the past few days.

For over a week I have felt major pregnancy symptoms. 

I brushed it off.. I knew it was probably just hormones.

Still, I secretly enjoyed the symptoms. 

It brought back a reminder of being pregnant with him, and with it the comfort of experiencing a little piece of the past. 

I was too terrified to take a pregnancy test. 

I knew my heart couldn't handle having another baby right now, 

yet I knew I'd be disappointed if the test was negative. 

I know it sounds complicated. 

I guess dealing with the loss of your baby is a complicated recovery process.

Today is National Pregnancy and Infant Loss Awareness day. 

In fact, Ronald Reagan proclaimed the whole month of October as Pregnancy and Infant Loss awareness month.

This day was dedicated by Robyn Bear, who had 5 miscarriages and had little to no support, because it wasn't something people acknowledged..

Read more about it in the NY times here

Luckily, this is no longer the case. There are great support systems for women have lost children, and some of the best support comes from family, friends, and neighbors.

In honor of that day, I'm working on a post: 

"What to say to a woman who has lost a baby"

Not because I'm an expert, but because I would want to know what to say if someone I knew had lost a baby. 

And I know what helped me specifically.

A few weeks ago I had emailed one of my prior neighbors, whom I have always admired, and in her reply she mentioned how she had suffered multiple miscarriages. She said something I will never forget: 

"You have a good sense of the pain a mother feels at the loss of a child. I've often thought that in the next life, I want to stand with all the mothers who have felt this pain. I would proudly stand next to you there." 

To all the mothers out there who have had to say goodbye to their son or daughter in this life, I echo my friends statement: 

In the next life, I would proudly stand by you. 

Knowing that despite the tremendous heartache, we overcame.

♥♥♥♥♥♥

August via Google

As you can see, the month of August was filled with trying yummy recipes, getting my craft and decorating on, finally deciding to try snap chat, and dreaming about the future. Particularly in the category of our future babies. 

Baby hunger is real thing people. 

I've always thought it was one of those things that you THINK you want so you use it as an excuse.. 

Boy was I naive..

Definitely real. 

Also, you would think losing my own baby would cause me to not want to be around other babies. 

Nope, it's the exact opposite! 

I absolutely love it. 

How does that work? 

I have no idea.. 

I miss Jon Gabriel ALL the time. 

And I guess being around babies reminds me of him in a good way?

Who knows..

I guess I'll just have to spend my time holding everyone else's babies and being content with my life as it is right now:) 

That's hard to do. 

But hey, maybe I'll learn something from it. 

Not that I haven't already. 

Wow this post went no where near where I intended it to go!

So there's my month of August via Google search:)

What was yours like?:) 

Reflection

July 10th. 

A year ago today Jon proposed. 

We were on a morning walk looking for seashells and talking. 

His plane had come in late the night before.

The ring wasn't supposed to be here yet.

The surprise, being with him on the beach after not seeing him for a few days, the good feelings, wondering what the future held, my dream ring..

It was a great day. 

 I was so excited to start a new journey with him! 

I had no idea what would lie ahead.

July 10th. 

My son's due date. 

26 weeks along, before we knew about his heart defect

I had an app on my phone that would give me information about the baby as I hit certain milestones. 

 I stopped checking it after Jon was born two months early and passed away.  

Today my phone buzzed. 

"Congrats on your new baby, Mama!" 

It brought back the sad feelings. 

But it also brought a little bit of joy. 

Jon Gabriel Bowen is our son, and he's the most beautiful boy in the whole world. 

 He is still very much apart of our family. 

We will see him again. 

Because of that, today is a good day. 

Beautiful Heartbreak

A journal entry: 

Dear Journal, 

It's been 26 days since my beautiful baby boy was brought into the world. 

And 22 since he passed. 

I've made it through 22 days. 

 Sometimes I miss him so much it makes my heart ache and breathing seem difficult.

Everyone has moved on, I don't blame them.

They didn't know him like I did.

While life has gotten back to normal, in a way it hasn't.

I'm not the same. I'm completely changed.

But it's a good thing.

People ask, how are you? 

It's a valid question.

But I don't know how to reply.

"Good" just doesn't seem adequate.

"Ok" isn't accurate either.

I'm better then ok. I'm better then good, even.

But I'm still hurting.

My son has changed me.

Everything Jon and I do, our son is on our mind and in our hearts.

Instead of seeing life as stressful, or monotonous,

now I see it's just beautiful.

I try and see life through my sons eyes.

Every detail.

And the most beautiful part is the unseen.

What we don't see, but know is there.

And somehow this experience has brought me closer to the unseen.

"Prove you believe in things not of this world.." 

A feeling that came over me as I laid in a hospital bed and found out I would have to say goodbye to my son in this life.

Proving is a painful process. But it is also a rewarding one.

The whole experience, if I had to sum it up in one word, it would be:

Defining.

Every detail about the experience has defined my life.

Do I really know I will see him again?

Do I truly believe in an all powerful, and all knowing God?

Is the power of the atonement, unconditional?

And the answer?

The truth is, this experience caused me to question these things more then ever. 

I never doubted it. I just needed to be reminded, because so much was on the line. 

And now, I know it so much I can't imagine questioning it ever again.

This rings true in every detail of my life.

Before I make a choice, I think, what would my son think of me?

If he was watching, would he be proud to call me his mom?

I hope so.

And when I am tempted to complain or feel sorry for myself, I think of his tiny body on that table.

Fighting to be on this earth for just a little bit longer.

He was our little fighter.

Something he got from his daddy.

Guilt still tries to find it's way in sometimes.

But the what if's don't matter now.

He wasn't meant to stay. 

And even though I struggle everyday to accept that fact, I have managed to, for 22 days. 

No matter how many tears it requires, or how painful it is. 

I know he wasn't meant to stay. 

He is healed, and he is happy. 

And through tender mercies given by the Lord, I have come to know that my son knows I love him so much.

That brings more comfort then I thought possible,

       and more joy then I thought I was capable of feeling. 

It's a beautiful heartbreak. 

Tomorrow, Jon and I go to Cali with my family.

Our days have been filled with working full time, emotional ups and downs, and lots of phone calls and meetings trying to figure out hospital bills, medical records, and getting signed up for fall classes/internships. 

We need to get out of here. 

And now that most of it is finalized, we are!

Can't wait:)

Our Angel Baby

Friday night, May 3rd. 

Jon and I got home from work, and I was laying in our bed trying to think of ways to get the baby off my sciatic nerve. 

Heating, ice packs, and Tylenol had become my best friends. However, that night none of them seemed to be helping. 

I finally dozed off and woke up around 9:40 pm. Jon was sitting next to me on the bed studying for the MCAT. 

I remember we were laughing about something. I don't remember what. 

All of a sudden I felt what seemed like a waterfall coming out of me. 

I didn't know what it was at first, and I started to panic. 

Jon called the Utah Valley hospital immediately while we ran out to the car and explained my water broke and we were on our way there. 

"We're supposed to deliver at Primary Children's, we can make it!" I kept saying, my teeth wouldn't stop chattering

 "Otherwise he won't be ok, we have to deliver there right?"
(Read the story about the birth defects here)

Jon just kept telling me to stay calm and everything would work out. 

I remember looking down at my stomach and being so freaked out because it wasn't big and tight anymore. 

Is he in there?? 

I couldn't tell. 

We drove up to the hospital doors around 9:45 P.M. 

There was a team of nurses waiting at the doors with a wheelchair 

I was shaking as they wheeled me past many people that were staring, and all I could think about was how I felt so small.

"K hunny I need you to focus, how far apart are your contractions?" One of the nurses asked me multiple times as I was rushed through hallways

"What contractions?!" I replied. 

I felt nothing. 

It freaked me out. 

Suddenly I was in a room laying on a bed and I couldn't stop shaking. I was starting to get light headed. 

All I could do was pray. 

I was having IV's shoved into me and none of them seemed to stay.

All the nurses were in a hurry talking to each other but I wasn't listening, I was too worried about my boy. 

I did pick out that the nurse with the stethescope was trying to find my babies heart beat. 

"I'm not hearing his, I'm only getting her heart beat" I heard the nurse say to another one. I think she thought I couldn't hear her. 

I heard the words, "Possible HLHS" "esophageal atresia" "supposed to deliver at Primary Children's" "30 weeks" "need an immediate C section" 

Jon kept telling me to take deep breathes, I guess I stopped breathing without even realizing it. 

Finally a male nurse took an ultrasound, found the heart beat, and explained that they were going to take me to another room.

The babies heart beat was dropping fast and they needed to get him out now.

I remember having my bed brought to another room within seconds, told to slide onto the table, and having painful things shoved all sorts of places. 

Within a minute of getting on the table I had a mask being held over my face while a nurse with short blonde hair and a worried look on her face told me everything was gonna be ok, I needed to try to stop shaking and relax. 

It was a feeling I'd never really felt before. Knowing I was laying on a table and they were going to cut me open in a matter of seconds.

Yet, all I cared about was whether he'd be ok.  

I remember the last thing I thought about before they put me out: "Where's my husband.. I want to see him" 

Everything went blank. 

I had no idea of any time that was passing.

I remember waking up and feeling like the light in the room was as bright as the sun. 

I was unable to focus. 

The pain.

It was tormenting. 

All I remember was hearing myself moan and feeling hot tears run down my face for the first time that night. 

My son. 

Was he ok? 

Where's Jon.

My stomach. 

This can't be normal. 

3 nurses were taking my bed to another room and explaining that I was going to get hooked to a morphine pump any minute. 

They stopped my bed in a room. Suddenly Jon had my hand and was standing by my bed. 

The chaos stopped. 

He was speaking to me, but as soon as I tried to reply the pain I thought couldn't get any worse managed to.

"Don't speak sweetie just rest the morphine pump will get here any minute"

"Tell me about him" I managed to whisper through the torture 

He explained that he is doing good and how cute he was etc. 

I was pretty out of it so I don't remember most of it

Jon later said I asked the nurse for the morphine pump over 25 times

I'm sure the nurse understood:) 

I vaguely remember them finally wheeling my bed over close to where my son was laying so I could see him before he got life flighted to Primary Children's. 

He was pink. That was a good sign.

He had his back to me. 

Jon took this just minutes after he was born, came out 3 pounds:) He said he was squirming around and when Jon grabbed his hand the baby held onto his finger. 

I wanted so badly to reach out and touch him but it was too painful. 

I was still a little out of it. But I smiled and looked up at Jon, 

"He's perfect." 

 Jon had tears coming out of his eyes 

"What's wrong?" I was worried

He was helping the nurses pull my bed through some halls 

"Nothing don't worry about me, we're gonna get you to a room Madds, and you can start to a lot feel better ok?" 

We finally got to a room, they hooked me up to a morphine pump and I stayed there for 2 days and then asked to get discharged early, even though I had not recovered fully.  

The doctor that delivered my baby came to see me a few times during the course of those 2 days. 

The first day in the hospital the morphine took a toll on me..

 I was always drowsy and it was so hard to focus! 

All I remember about the first time the doctor came was that her voice was really soothing to listen to. 

However, by day 2 (Sunday May 5th) they took the morphine pump away and put me on pain meds, so even though it hurt a lot more, I was a lot more alert and able to focus. 

The doctor came to see me and I was able to hear the story in more detail. 

She said the time between when Jon called the hospital because my water had broke, and when they finished delivering the baby was 18 minutes. 

The time between when she got the call at her house and when she delivered the baby was 9 minutes. 

The time it took to deliver the baby after they put me out was less than a minute. 

"We literally just had to rip you open and get him out."

Rip. That word just makes me queasy. 

"Because we didn't have much time, we had no time to prep you for it, so I was worried about infection but you look like your healing just fine. Also we wanted you to be able to see your son before he was flown to Primary Children's. "

That explains why I'm stapled together.. 

It was then I realized that even though I went through a lot pain, the whole experience had to be pretty difficult for Jon. Having them whisk your wife into a room and rip her open, and then take your son away so he can be life flighted, all the while wondering who will be ok.  

"I want to get you out of here so you can get to Primary Children's as soon as possible and you can see that sweet boy." 

"Thank you. That's all I've wanted since the beginning."

"If things continue to go ok you should be able to leave tomorrow."

I was so relieved. 

They had told us our baby was doing ok, and that he did not have HLHS. They said he was scheduled for his stomach surgery that Sunday afternoon. 

However Sunday he took a turn for the worse and was unable to get surgery. 

It's hard to do any type of surgery on a 30 week old baby. 

Later that night, Jon went up there because a team of surgeons wanted to meet with at least one of us and I was in no condition to go. 

Jon came back with bad news. There were a lot of complications. 

It was heartbreaking. 

Jon recorded the hour long discussion with the surgeons, so that I could listen to it. 

The heart condition was not HLHS, but it would require the same type of surgeries, including being on a waiting list for a heart surgery at a young age. He also may not even qualify to receive the surgeries because he's only 3 pounds. He had a Pneumothorax (hole in the lung) that morning, and also had low PH levels. Because of that he was unstable for a stomach surgery, which he desperately needed so he could start to gain some weight. On top of that his head was swollen, and the risk of surgery was too high for a premature baby. 

Basically they told him that our baby's time was coming to an end, there was not a lot they could do at this point. 

Jon had remained strong until they brought up that he needed to tell me so that we could make a decision of how aggressive we wanted to be with this. 

"How do you tell your wife that?" Jon said through his tears. 

"We understand that no matter how much sense it makes to let your son go and relieve him from the pain, a bond between a mother and her baby is one none of us can comprehend. We are so sorry you have to tell her this." 

I knew something was wrong as soon as Jon stepped into the hospital room. I have only recently seen what my husband looks like after he's been crying. 

I shed a lot of tears that night. 

Where was the miracle? 

I'm  21 years old. I got pregnant on birth control. And you're telling me I will have to bury my first born child, who I haven't even met yet?  Why me? 

After a few minutes, I felt an extra dose of strength. 

Literally, as if someone was taking the pain on for me. 

Someone is making this easier than it should be.. 

I was able to strengthen my husband that night. I think half his battle was breaking the news to me, and once I was strengthened it helped him. 

I wanted to leave that night but the nurse said no way. 

Jon gave me a blessing. I needed peace of mind. Otherwise there was no way I was gonna make it another night stuck in hospital bed while my son suffered just an hour away, and while his time here got shorter and shorter. 

After the blessing I felt calm. 

I knew the Lord was aware of my circumstance. 

One thing I couldn't get out of my head: 

"There is purpose in all things." 

"Prove you believe in things which are only hoped for, but not seen." 

Purpose. Hope. 

There was a reason my son was born this way. I didn't know what the reason was yet. 

I was able to leave the next morning even though I could barely walk.

We took this pic right before leaving the hospital. We hadn't gotten any pics of when I was in there so we figured we should take one. Usually it'd be hard to smile during those times, but my husband gives me a lot of reasons to.  

We got up to primary children's and I was able to touch my son for the first time. 

There are few things as heart breaking as seeing your tiny child hooked up to machines. 

I was nervous, because Jon had said when he came to meet with the surgeons that the nurse told him that he only responds to pain, other then that he doesn't do anything. 

Am I too late?  Was there nothing left in him? 

However, when we got there, I held back my tears and stayed strong enough to talk to him. 

His head was swollen so he was unable to open his eyes, but at the sound of my voice he moved his tiny head around. 

He grabbed my finger. 

We both spent time talking to him and holding his little hand. 

I ached to be able to hold him. 

I could feel how pure his spirit was. How near perfect he was, though he was born into an imperfect body. 

The thought of leaving him was overwhelming, but my medicine was starting to kick in and I started feeling really light headed. 

Jon said, "The nurses said he'll be ok, we'll come back first thing tomorrow." 

We went home and I fell asleep. After a few hours we got a call from Primary Children's. 

He had had another Pneumothorax on his left lung this time, just an hour or so after we left.  

They wanted us to come down there immediately. 

Jon and I both feared the worst. 

We realized we may have to say goodbye to our son that night. 

We chocked back tears while we called our families and told them to meet us there. 

Jon and I arrived first, and they had opened his bed so we had full access to him and didn't have to reach through tiny doors in order to access him. 

Because of this, we were able to see him in better light. 

I started talking to him, and he opened his little eyes! 

The nurse couldn't believe it. 

He hadn't opened his eyes since the first few minutes after he was delivered, before they put him on the machines. 

He had blue eyes like his dad. And cute blonde hair. He had my nose and my asian eyes I've had since birth. He is the most perfect and precious boy I've ever laid my eyes on. 

He opened them a lot bigger, but I was too excited that he was looking at me that I forgot about the camera. 

Jon and my dad and father in law getting ready to give him a priesthood blessing 

I would have done anything at that point to hold him and take away the pain he was enduring. 

His cute daddy 

I wish I had more pics of when both our families were there. The spirit in the room was so strong, as if angels themselves were present. 

The spirit testified of the plan of salvation and that this pure spirit was given an imperfect body for a reason. 

The nurses had stabilized him again, and we were relieved that we would not have to decide to end his pain that night. We would get to be with him tomorrow. 

Our families gave our son a final kiss goodbye, and Jon and I stayed a few minutes longer. 

We decided to name him Jon Gabriel Bowen. 

The meaning of the name Jon is "God has Given" or "God's gift" 

The meaning of Gabriel is "God is my strength" 

Sleep was difficult that night. All I saw when I closed my eyes was his face. 

The next day, they took him into a private room where we got to spend all day holding him. 

He opened his eyes a lot more, he watched me as I told him he was the most loved boy in the whole world, and I told him everything that we would do together when I got to see him again. 

It was hard not to cry. 

But I didn't want him to hear sadness. 

The more I held him, the more I thought 

I don't know if I'm going to be able to do this

But I had to be brave. 

Jon Gabriel was slowly starting to go as the day progressed, and it would have been pure selfishness to have the doctors do everything they could to keep him here, just so he could suffer longer. 

God is my strength..

I was reminded. 

We talked to him for hours. We cried. We held him as close as we could while he was on the machines. 

His heartbeat started to drop before we even had the nurse take him off the machines. 

Jon and I both knew it was time. 

But it didn't make it any easier. 

It was the hardest thing I've ever had to do. 

They took him off, and I let the tears fall freely onto his tiny little body while I held him close. 

It's amazing how much power came from just a tiny little body. 

I could feel how pure his spirit was, and for a minute I felt almost inadequate to be his mother. 

He came to receive a body. And was needed back in heaven.

I know with all my heart he was not meant to stay here. 

My sister Annie sent me this quote the next day. It's by Elder Bowen who had recently lost a 3 year old son: 

"I was reminded of the teachings of the Prophet Joseph Smith, who taught this comforting doctrine: The Lord takes many away in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth; therefore, if rightly considered, instead of mourning we have reason to rejoice as they are delivered from evil, and we shall soon have them again." 

Jon Gabriel's purpose for coming to earth was to bring souls closer to Christ. 

He did that in his short time here. 

And the miracle? 

The miracle is the prayers and the fasts that have strengthened us and our families during this trial. 

The days when I thought to myself, "This should be more difficult. I should be struggling much more than I am." Yet I could literally feel strengthened from something unseen. 

The miracle is the fact that after he passed, my husband and I have been able to be productive, find things to laugh about, and feel my son's sweet presence during the really hard moments.

The miracle is that while experiences like this sometimes cause couples to turn to anger and find blame, this has only made me love my husband more than ever before. 

The miracle is that even though he's not with me, I will be able to see him and be with him again, because of one that died long ago so we wouldn't have to say goodbye forever. 

The miracle is that our family now has a sweet little angel watching over us. 

 

Our hearts are still hurting, but it helps to know my son fulfilled his purpose here on this earth. 

Sometimes I wonder if he misses me as much as I miss him. 

Jon says without a doubt. 

At first, I didn't feel like a real mother. 

Getting put in a hospital room, pumping milk my son would never use, and hearing babies in the other rooms cry, while I felt helpless knowing mine was hours away hooked up to machines. 

But maybe the fact that it was nothing but the sound of my voice that caused him to open his eyes and look calmer than any other time..

Or the fact that I laid on a hospital bed, with no worry of how the surgery would affect me, but only whether or not my son would be ok.. 

Maybe that's what it means to be a mother. 

May we all take time this Sunday to honor those who have sacrificed so much to give us life. 

For those who have been praying, sending emails and texts, and have brought gifts and dinners, how needed that is and how grateful we are! 

Every message and gift has been and still is deeply appreciated. 

I felt so uplifted by so many of your kind words, and cannot thank you enough. 

Jon Gabriel Bowen is not gone forever, his spirit it still very much felt. 

My hope and prayer is that his story will push people to act. 

Anyone that hears my story, and is wondering what they can do, there is one thing. 

Turn to the Lord, and ask him to strengthen us during this difficult time, and I know that as you do, he will give you strength as well. 

Let my son's short life be a reason for each of us to be a little bit better every day, so that we can return and live with those we love once again. 

I love you sweet boy. 

I'll see you on the other side. 

♥♥♥♥♥♥

The Will of God

It's been an emotional week. 

I have stopped feeling sorry for myself, but for that first day, I kept thinking there is no way this is really happening. 

I felt like any minute someone was gonna wake me up and I would realize it was just a bad dream. 

It's one of those experiences that happens to everybody else.

Tuesday. 

April 23rd.

My sweet husbands birthday. 

We had an appointment to see a specialist at Maternal and Fetal Medicine. 

The reason for this was because at 20 weeks, everything on my son looked perfectly fine except they couldn't get a good enough view of the heart and stomach.

"Everything's probably fine but come back at 28 weeks." 

At 28 weeks, no stomach and they couldn't get a good view of the heart. 

But she also took another 12 mins just to find the gender again, so Jon wasn't worried, and I tried not to worry too much about it. 

Or maybe I'm just naive. 

I did call the nurse a little worried, and the nurse said, 

"Oh everything is probably fine we'll send you over to a specialist just to make sure." 

Tuesday, April 23rd. 

We sat in the waiting room, I quizzed Jon to help him study for his last final.

The final was Chronic Disease Prevention, a class I was in also, and I had taken the final already. 

I teased him about how he was over studying. 

I had gotten an A on it, I knew he could no problem. 

Finally my name was called. 

Deep down I was a little nervous, but Jon kept reassuring me it would all be OK. 

"He's our son Madds, he's a champ. What could possibly go wrong?" 

I agreed. 

We walked  into the dark room. I laid on the all too familiar chair. 

I didn't like that we had to be there, but I was happy I got to 

see my baby on the screen again. 

The nurse doing the ultrasound explained she was only there to take all the measurements, then the doctor would come in, explain what she found, and answer all the questions we had. 

Should there be that many questions? I got worried 

She started the ultrasound. 

I love seeing him up there. 

After a few mins the nurse said "Wow he does not want to stay still.. "

I smiled at Jon. She had no idea.. This happened at the three other ultrasounds too. 

He's a little squirmer. 

Finally he stayed still just long enough for her to get some good shots. 

She showed us what he looked like 4d. 

He looked flawless up there. 

"Yep I was right, he has your nose." Jon whispered to me.

I smiled. He did have my nose. 

She spent a few more mins taking pictures.

It was taking longer then I thought, and I forgot I should hold my questions for the doctor.

So I asked one of the million I had running through my mind at that point,

"Do you see the stomach?"

"I'm gonna have the doctor answer all of that when she comes in. "

Oh no.  

That was when the tears started to come.

It was only the beginning.

As the nurse was getting ready to leave, she made eye contact with me, and I saw the sympathy in her eyes. 

There was nothing she could do to help though.

She left the room and I immediately brought my hands to my face, I had to stop crying before the doctor came in.

Jon said softly, "Madds we don't know anything yet, it might not be that bad, everything's gonna work out, it has to."

I nodded. I wiped the tears and took a deep breath.

We don't know anything yet.

After what seemed like an eternity, Dr. Helen Feltovich entered the room.

She had long legs and hair that went past her shoulders. 

I had no idea the role she would play in my life at this point.

"How are you two doing today?"

You could hear in her voice she genuinely cared, you don't find that in a lot of people.

"We're ok just want to know what's going on."

"Well let me ask you two first, what do you think is going on in this little guy?"

Hearing the words 'little guy' made me want to start crying again. I held back.

Jon spoke, "Well, the fact that we can't see a stomach is cause for concern. And I know when I look at the heart the left ventricle looks smaller then the right one."

I looked at him, that was the first detail I heard about my son's heart, and it came from my husband. 

I thought we didn't know anything yet.. was what went through my mind.

He just grabbed my hand, I understood that it would've done no good for him to tell me that.

"What do you feel deep down Maddie?"

I was surprised to hear my name, she hadn't asked, and the name on my records was Madeline.

"I can feel that somethings wrong and I need to know what it is."

"Maddie, I need you to look at me."

"What I'm about to tell you, there was nothing you could have done to cause it. Do you understand that? You are not to blame, this is a thing of nature."

I wanted to believe her.  

Finally, she began.

"You are both correct. The truth is, and this is going to be hard to hear, are you ready?"

Say it.

"Your son has a serious heart defect. He also has what I think may be Esophageal Atrasia. This is where his esophagus is not connected to his stomach. Our ultrasounds indicate that there is an abnormal amount of fluid around his face meaning he is unable to swallow it. Because he can't swallow it, the stomach isn't showing up on the ultrasound."

I stared straight ahead as she continued. 

"That can be a quick fix through surgery, however the fact that he has a heart defect along with it makes this much more serious."

My son has a heart defect. 

I stared straight ahead and let the tears flow freely.

She went on to explain that it could be a chromosomal disorder, Jon spoke to her mostly at this point. She knew he was pre med so she could explain it in much more complex terms. He understood it better then I did.

She asked if there was any history of this in either of our families,

"No neither of ours," I managed to say, "I've never even heard of this."

"Well the chances that it has anything to do with either of your genes is less then 1%. Jon in Medical school you'll hear the saying "When you hear hooves, think horses not zebras." We could jump to the conclusion that this is a genetic disorder and even go so far as to say it is down syndrome or another chromosomal disorder. But the truth is, that's most likely not the case."

My son has a heart defect.. But he's moving around all the time.. I don't understand..  

She went on to explain some genetic testing that could be done so we could get to the root of what caused it, even though if she had to bet she'd say it was just a random defect that rarely occurs when babies are developing.

I was one of the rare ones that got pregnant on birth control. Now there was a rare defect.. 

"Now what I'm going to tell you is going to be really hard to hear, are you ready?

No. 

"This is something that will require pretty extensive surgery. To the point that many parents choose not to do surgery because of the quality of life that comes with it. You may choose to go through with surgery after surgery, each of which have very high risk of death. And after the surgeries he'll have many complications for his short life span."

Short life span?  

"What I'm telling you two, is that when your son is born, you are going to have to play God. Do you want to go through with all the surgery and lead him down a path of pain, and high risk?"

"Or after he's born, do you want to say, take him off the machines, let me hold him for the few moments he has left?"

I looked up at the ceiling, the tears wouldn't stop coming. 

Give me strength. Please. 

 "What I'm saying is that, you won't have much time with your son."

He has my nose. I feel him move all the time. I don't even know what it's like to hold him. Now you're telling me I won't be able to for very long? 

I stared straight ahead, convinced at any moment I was gonna wake up and realize it was all a dream. 

She went on to explain that she was going to have me go to a cardiologist, who could clarify that the heart was indeed as bad as she thought it was.

"I can assure you, you won't be alone in this process, you will have lots of support from many specialists."

I don't want your support. I want my baby. 

I looked at Jon who was crying at this point.

I've only seen him cry once in my life. I wished I could take away his pain.

It made me cry more.

"What questions do you have for me?" She asked.

Questions. I had a million but they all seemed to not matter now.

I spoke.

"Let me clarify. No matter what, even in the best case scenario my son will have complications for the rest of his life?"

"That is correct."

I just nodded as I wiped my tears. I understood. Well, no I actually didn't at all. But I was trying to. 

I don't remember how the end of the appointment went.

I remember her hugging me, telling us to just leave the hospital, take the day off, and go home so we could process everything she just told us.

Basically so we could go home and cry.

Before I left she put one of her hands on my shoulder and said, 

"Promise me you will not forget, you are not to blame."  

Then she assured us she would get the next available appointment with the cardiologist.

We left.

The walk out of the hospital seemed to go on for miles.

When we got to the car, the first thing Jon said through his tears was,

"You don't deserve this...You don't deserve this."

I was thinking the same thing about him.

Fast forward to the next day. 

I was at work, and started researching everything I could, trying to remember every detail she gave me yesterday. 

Dr. Feltovich had said she would get me the next appointment with a cardiologist, so I was supposed to hear from her any minute. 

Finally, her secretary called me. 

She explained the cardiologist was booked for over a week. 

Are you kidding me. I thought. 

No answers for over a week. 

She told me she was working on it and would try to find me a sooner time. 

2 hours later she called back. 

Dr. Feltovich had pulled some strings, we were going to be seen at 9 AM the next morning at Primary Children's. 

I thanked her, and immediately called the BYU health office so we could get things covered through our insuarnce. 

They were going to be covered. 

2 small miracles I needed badly. 

Jon and I slept at his house in Sandy that night so we could beat morning traffic to Salt Lake. 

There was a little lighter feeling in the ultrasound with the cardiologist. 

Mostly because we had gone through hell 2 days before so everything from that point forward could only get better.  

I think the baby was just sick of ultrasounds at that point! 

Because when the doctor had the perfect shot at his heart, he all of a sudden flashed his bum right in her face! 

"Did you see that!!! He just put his butt in my face!"  

Haha we were all laughing so hard!

He really was just so sick of it. 

He has been breech for a few weeks,  and was breech when she started this ultrasound. 

But towards the end she had another good view and he suddenly flipped completely over and his little body went right off the screen!

"What, where'd he go!?" She laughed. 

He's smart. When she found him again he had made sure to put his back to her, almost as if he knew it would make it more difficult...

"At least he's not Breech anymore Madds!" Jon said. 

I was glad, I liked feeling him kick up toward my stomach instead of on my cervix.. 

It took the cardiologist 45 mins, but finally she took us in a room to give us details. 

As we sat down, I saw a box of tissues on the table and was reminded of the appointment just 2 days before. 

I worried we'd leave feeling the same way. 

We didn't. 

There is hope. 

She explained everything. 

Basically there is a condition called Hypoplastic Left Heart Syndrome. 

It's a rare congenital heart defect where the left ventricle does not exist. 

My son does not have that, yet. 

He has both of his ventricles, but the left one is a lot smaller then the right.  

 However, his heart still has time to continue to grow. 

It all depends on which way it grows. 

If it grows the bad way, it will close the left ventricle and he will end up with only one ventricle. 

This is where there would be multiple intense surgeries required, including needing a heart transplant eventually,  and in her words, "The chance of him out living you two is     close to nothing." 

She said, "I'm going to take the extreme and say that is what's going to happen."

Of course you are.   

 "I hope I'm not right, and if I'm not then here's the other option.."

She went on to say that basically if his heart grows in a way that continues to open his left ventricle, 

if his heart grows the good way, 

he could be fine. 

He will require a small surgery after he's born that will keep him in the hospital for a week, and then another one when he is 3 years old. But then he can live a normal life.  

I asked what activities he would be restricted from if it grew the good way. 

She said basically none, he could play competitive sports he'd just have to do check ups with a doctor every year. 

I asked about the stomach surgery he'd have to receive (where they connect the esophagus to the stomach), if that would make him at higher risk. 

She explained that it does make it complicated and that a stomach surgery on top of a heart one all within his first week of being born would put him at higher risk. 

But if his heart is growing right, there's a good chance he'll be fine. 

That was if his heart grows the right way. 

I have an appointment with her again 4 weeks from now. This is so that she can get a better feel for which way the heart is going, but they really can't know for sure  until he is actually born.

When we left, we weren't totally convinced he'd be ok, but we felt a lot better then after we left the specialists office on Tuesday. 

It is hard to not know if you will bring your baby home with you after the hospital. 

But after we left the cardiologists office, we both decided we  could only benefit the most by believing his heart would heal. 

I know the Lord is capable of healing my son. I also know if that's not in His plan, he'll give Jon and I the understanding and strength needed to cope. 

Since these appointments, life has gotten happy again. 

We appreciate all the love and support that have been shown, as it is much needed at this time. 

We also got all moved into our new place, and we absolutely love it! 

Baby continues to kick like crazy. 

At least I know I get to meet him:) 

We are fasting and praying with all our hearts that his heart will heal, we need a miracle! 

We'd like to ask all our family and friends if they would be willing to keep him in their prayers. 

I saw this video today. 

I know with all my heart that the Lord has a plan for each of us. As we seek His will, our faith will grow and He will make more out of us then we ever could ourselves.