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.  

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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? 

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, 


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.



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.