“Give me Jesus, you can have all the world,just give me Jesus” - Jermey Camp
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One year ago I woke up after a sleepless night of worry.  One year ago I fed my little girl, laid her down for an early morning nap and got in the shower.  One year ago I grabbed a purple long sleeve shirt from my drawer.  Black leggings.  Running shoes.  One year ago my husband walked in the door and I whisked past him.  I drove fiercely to the hospital and whizzed through the dark parking garage until I found I spot.  One year ago I put my car in park and for the last time walked the path into the PICU.  I rounded the corner and saw my son at the end of the hallway.  For the last time I rushed into his room, hoping to find that he had improved overnight but knowing that he had not.  One year ago I looked at Will and I knew that his time on Earth had come to an end.  On this day, one year ago, I held my little boy for the very last time and on this night, one year ago, he took his final breath.  

On that day and the days and weeks immediately following, it was hard to imagine getting to this day.  The day that would mark one year without Will.  How would I survive a year without my child?  How could I survive a whole year of this pain, this hurt, this grief?  A week, a day, even another hour seemed like to much to bear.  Over the past year this amazing, unsurprising thing happened - time kept moving on.  The minutes kept passing and weeks went by just like they normally do and now we have arrived at this impossible milestone.  One year.  

I recently listened to Rachel Hollis’ interview with Joe Biden.  He was discussing his new book, Promise Me, Dad, about his son, Bo, who passed away from brain cancer.  What I didn’t now about Joe Biden is that he also lost his first wife and young daughter in a car accident when he was about my age.  Unimaginable loss.  But he has gone on to lead a meaningful and purposeful life, professionally and personally, and it was inspiring to hear him talk about how he continued to move on, all these years after his devastating losses.  At one point in the interview he says, “There is hope to survive that kind of loss and I believe you survive by finding purpose.”  Nothing has been more true in my life this past year.  Finding purpose has enabled me to move forward audaciously into a life I never imagined I could live without my son.  Purpose as a mother and a wife that I never had before.  Purpose in building a way to help other children who don’t have access to the type of care our babies did.  Purpose in bringing together and impacting my community.  Purpose in sharing the Gospel with every single living and breathing soul I can find.  There is just one slight change I would make to Vice President Biden’s remark - I would change “survive” to “thrive.”  Finding purpose isn’t just about surviving, it’s about thriving.  I don’t want to merely survive until the end of my life, I want to thrive.  I want my family and my children and my friends and my community to thrive as well.  I believe we will.

When I think about the time passing without Will I often feel torn.  One on hand, each day represents one day further from the last time I saw him.  One day further from the last day I held him, kissed his sweet little face and wrapped his tiny fingers around mine.  But each day is also one day closer.  One day closer to when I take my final breath on this Earth and enter into eternity with Christ.  One day closer to being face to face with God.  And on that day he will be there, waiting for me to hold him in my arms again.  It’s hard to imagine the pain ever going away after a tragedy or a loss and honestly, I don’t think it really does go away.  I think instead of leaving, it just learns to lay dormant.  First, for short periods of time and then a little longer.  At first it occupies all the space in your heart and mind and it’s overwhelmingly present all the time.  Over time it slowly lets joy enter back in and makes room for laugher and happiness and fun.  The pain is still there but it learns to hide.  Sometimes predictably and sometimes all the sudden it comes back with full force.  It has to be always present because if we didn’t have the pain then we would have to give up all the love along with it.

Since I have young children and toddlers, my only illustration for this is, of course, a children’s movie.  My children love the movie Inside Out and recently I noticed how clearly this idea is illustrated as one of the main lessons in the movie.  In the beginning, the main character, Joy, is constantly trying to get rid of Sadness.  She sees sadness as pointless, always causing trouble and even tries to get her to stay inside a circle - a circle of sadness - so she doesn’t mess anything up.  Throughout their journey, Joy and Sadness experience a lot together and they have to work together to get back to headquarters (if you haven’t seen the movie I know this makes absolutely no sense!).  At the end of the movie when everything is fixed, we realize that Joy can’t exist without Sadness.  It’s even apparent in her physical appearance.  All the characters are represented by one single color - Anger is red, Disgust is Green, Fear is purple and Sadness is blue.  Not Joy.  Joy is mostly yellow but she has blue hair.  To me, that describes this past year more than anything.  Mostly yellow with blue on top.

Sometimes one year ago seems like a lifetime away and others it seems like yesterday that I was holding Will in my arms.  I can still imagine exactly what his little fingers looked like, how he smelled and how the indention above his lip looked like a tiny tear drop.  I can easily take myself back to that hospital room, sitting in that red plastic chair with the curtains drawn and lights dim, and feel all the same emotions I felt that day.  This milestone is going to come every year for the rest of my life and while I know it will always come with the type of acute pain that milestones bring, I want to use it as a marker to remember Will, all the love I have for him and all the ways that his joy has inspired others.  It will always be a sad day, I’m not sure I can ever change that, but I hope that it will also be a day of hope.  Hope in the future and hope in Christ.

When I was expecting our twins, I imagined their first birthday party, as I'm sure many pregnant moms do.  As the day approached, I realized that I had barely thought about it, which is highly unlike me - I love planning and creating and details especially for my children.  I thought maybe we should do something low key, Caroline was turning one after all and I didn't want to overwhelm her with a bunch of people.  On the other hand, her life is a miracle and we should celebrate that!  After some thought, discussion and encouragement, that's where I landed and planning a huge first birthday bash for our girl commenced.  I designed the invitations, made the guest list, choose the cake and made the decorations.  I distracted myself with every possible detail until I finally ran out of things to do.  I had to face it.  I had to face the one detail that I had been avoiding because it was too painful.  I had to face how I would include Will in her party.  

It was supposed to be some kind of twin theme with pink and blue decorations, something cute and fun.  I wasn't supposed to be coming up with ways to remember her brother because he was supposed to be there, crawling around, smashing cake and looking confused as to why so many people were staring and smiling at him.  Nothing seems right these days.  

We included Will in some really special ways and the day ended up being less painful than I had imagined.  I was prepared for the worst.  We invited many of the doctors and nurses who took care of our babies and it was really special to see them.  I could tell how excited they were to see Caroline, so big and healthy.  We had so many friends and family join us, giving me little hugs and sweet glances, saying what didn't need to be said in words.  I didn't cry or get emotional when we sang happy birthday.  I just focused on my baby girl who had survived a terrifying brush with death in awe of her presence, determination and perseverance.  I was reminded, as I am often, how blessed I am to be her mom and how much hope I have for her life.  Instead of gifts, we asked all our guests to bring a note written to Caroline for her to open on her sixteenth birthday.  I watched the notes pile up in a little wooden basket and imagined that day, when she is a bright-eyed teenager reading those letters for the first time.  I have wondered many times when she will realize what a treasure she is, maybe that moment will be the one.  

Our girl had a great day, she won't remember it but we have a lot of sweet photos, notes and memories to share with her when she is older.  It seems like a huge milestone that we are now past, but at the same time it feels like just the beginning of a lifetime of celebrations, milestones and special days that will always be missing one very important person.  Happy birthday, babies, you are loved and cherished.

A few ways we included Will - a photo collage displayed from the twin's birth and an actual height and weight bear made from Will's clothing and blankets.  We got three of these handmade from The Pretty Piggy and gave one to each of our children for Will's birthday.  I hope they will cherish them forever as much as I do!

The doctor who saved Caroline 's life and one of our favorite nurses who took care of Caroline and Will made the celebration extra special!

Some of the decorations - a yummy cake, monthly photos of Caroline and a special plate for her to have as a keepsake.  Whenever I glanced at the plate I seemed to always fixated on the number of days - 365 days - just the beginning of her life.  Will only got 96.

We got these sweet cookies made as favors from Bake or Eat Sweets.  She had the idea to do a "twin cookie," which I loved!  I choose the little hedgehog to represent Will because he had a hedgehog blanket that he used a lot in the hospital.

I just finished listened to Learning to Walk in the Dark by Barbara Brown Taylor.  It was an interesting read in which Taylor explores our discomfort with the dark.  She studied the dark in many different ways, from exploring a cave to participating in a simulation of what it is like to be blind, and shared what she learned about herself, about God and about the world in the dark.  In this exploration of the dark she inevitably encounters light but in new and different ways than we may be accustomed to.  At the end of the book she writes, “Do I want the kind of light that shines on things or shines from them.”  I haven’t been able to get that out of my head.  On or from.  A simple preposition but it makes all the difference.  I don’t know if this is what she intended, but my first thought was in regards to people, specifically Will.  Light shone from him.  There was an undeniable quality about him that I can’t quite name but something about him could only be described as light.  Good, pure, innocent and bright.  I started thinking about people who shine light from within and when I really got to thinking about who I know that possesses that unspecific quality of inner brightness I could only identify a few.  Then I started thinking about what those few have in common, what it is that makes them shine light from within.  Maybe it’s joy.  Maybe the people who have the most joy somehow spill it over to all of us and that joy hits us like headlights on a dark night.  Or perhaps it’s strength.  The ones who are strong and incorruptible might beam their light upon us by showing their might.  It could be the generous ones.  The ones who are always giving, thinking of others above themselves and letting the generosity that lights their hearts on fire pour over into the lives of those around them.  I think it might be these people, they might be the ones who shine a light from within - the joyful, strong and generous.  But I think the brightest ones, the ones who exude the shiniest light with the most consistence, are the grateful ones.

This is Will, last year, on his first and only Christmas.  According to many, he shouldn't have even made it to Christmas Day.  He was so sick but had overcome a lot and we had so much hope that he would still be here with us today.

I have dreaded the day that I had to see his stocking again since the day he took his last breath in March.  I have thought about it, agonized over it and even tried to make plans and justifications to avoid it.  But I have young children and they need to have a magical, decorated home for Christmas.  On Sunday my husband unloaded bin after bin of Christmas decorations into our house.  I stared at them, lining the wall in my living room and knowing that the stocking was hidden in one of them.  As I began to unpack, I was relieved with every box that was emptied without the stocking.  Then, I saw it.  It was in a vacuum sealed bag at the bottom of a bin, smushed together with the stockings for the rest of our family, the ones still here on Earth missing Will.  I opened the bag and pulled out the stack, tears flooding my eyes and my face feeling hot as I kept moving, scurrying around the house hiding my tears from my son and distracting myself from the pain.  This was the moment.  I flipped through until I saw those four letters, the ones that together spell the name of my little baby who should have been napping with his twin sister while his mommy and big brother decorated the Christmas tree.  Will.  I hung it right where he belongs, with our family, between his two sisters, in the same place where it hung last year on the mantle.  I wanted it to be different.  It still doesn't seem real or right or fair but this is what it is and what it will always be.  Life, never the same, always missing someone, on the ordinary days, on the special days, on the days when his absence is emphasized just a little bit more.  For the next month I will see his stocking and sometimes I will cry, wishing that he was here to delight in the carefully selected gifts inside it.  Sometimes I will smile, remembering his sweet blues eyes and gentle smile.  Sometimes I will well up with anger, so mad that he’s not here to spend Christmas with us, to spend his life with us.  Mostly I will be thankful, that I had him, held him and knew him.  I will be thankful for the privilege of being his mommy and for the hope that we have in Christ, confident that I will see my little boy again one day as I join him in eternity with the One whose birth we celebrate on Christmas. ​

I have always been willing to figure things out on my own.  I tend to look for the answer myself before asking some else to find it for me.  I’m not against asking for help, but I like trying to do things on my own.  To be brutally honest and a tad bit arrogant, this is mostly because I think I can do most things better myself than having someone else do it for me.  I’m sorry if that hurts anyone’s feelings, but I share that to say that I feel I have always been relatively resourceful.  At least that's what I thought.  During the first few weeks that Caroline and Will were in the PICU, I didn't know how to be involved in their care.  I didn't know what to do or what to ask or what to say, so I would just sit on the couch in their room and cry.  Soon I realized that if my babies were going to fight to live then I better be fighting for them too and I figured it out.  I knew none of the medical terms, medications or technology used in the PICU but I figured it out.  I didn't know much about the human body, how to read blood work or understand test results but I figured it out.  I asked questions, so many questions.  I made lists everywhere. I called friends who were doctors and nurses and asked them every question I could think of, taking up way too much of their time but figuring out what I needed to know.  I googled and researched even though everyone told me not to because of all the scary and false information I might find.  One day, while Will was in surgery, I went down to the records office and insisted that they print over 2,000 pages of Will's hospital records.  This was on top of the 900 pages I asked to be printed for Caroline.  I then proceeded to read them, scouring them for details I had missed and questions I needed answered.  I took the report from every echo he ever had and researched every single term, graphed his results and brought them to one of the staffing meetings.  I'm sure everyone thought I was insane but in a world that I knew nothing about I learned everything I could as fast as I could because I had to, there was no other option.  I learned to be resourceful and use what I had to get what I needed for Will.

During the first few weeks our twins were in the PICU, one of my mom’s nurse friends told her how important it was to spend time with the babies - talk to them, touch them and just create a loving environment as best as we could in the midst of all the chaos to let them know we were there.  I really took that to heart.  Even before we could hold Will I would sit at his bedside and hold his hand or touch his head and talk to him.  I got really protective of his environment.  I know it might sounds silly, he was a baby and I know that he didn’t understand what was going on or what people were saying, but it mattered to me.  I wanted to keep his space positive and peaceful.  No hysterical meltdowns, no negative words, no one telling him that he was going to die or what he couldn’t do.  It’s all I could do for him.  I couldn’t make his heart function better, I couldn’t make his kidney’s work and I couldn’t fix his body.  I couldn’t take care of him.  He needed doctors and nurses and therapists to take care of him.  All I could do was love him and protect him.  Sometimes that meant saying no or making people upset.  I didn’t care then and I don’t care now.  All I cared about was Will.  I learned to protect Will from people who we found to be untrustworthy or irresponsible.  On December 13, 2017, Will went on ECMO and came off within 24-hours.  He had a brain bleed.  He was swollen all over his body because his kidneys had shut down.  His heart function was poor.  A doctor came to us and said that Will was in a vegetative state.  He told us that Will was brain dead and offered us the option to remove all his support so that he could die.  He was wrong.  Will was not brain dead.  Will’s brain stem was completely in tact and while low, he did have brain activity being recorded on the EEG.  His brain activity steadily increased until ten weeks later when he had a seizure.  A few months later the same doctor told us that Will’s kidney’s would never work again.  He said that the nephrologist told him with 100% certainty that Will’s kidneys would never function on their own.  Again, he was wrong.  The nephrologist said that while highly unlikely, he would never say with certainty that Will’s kidneys would not start working on their own.  We still had a small sliver of hope as well as other options to look into.  It wasn’t only this doctor, but others too that I developed an extreme resistance to.  It wasn’t simply poor bedside manner or an uncaring attitude, it was flippant, irresponsible and disrespectful comments that made him and others untrustworthy.  There was the surgeon who described graphically to me how Will would bleed to death on his operating table if he attempted a certain surgery.  It was the calloused, persnickety doctor in the hallway laughing when Will urinated and claiming that it wasn’t real. I have always had a strong intuition and although I do tend to see the best in people, I can pretty much call who someone is after only a few interactions, or just one extremely telling one.  I usually know who to trust and not trust not because of anything they say or do, just because I know.  So when I encountered people like this, I guarded Will from them with a passion.  I would literally block the door and make these types of doctors talk to me before entering Will's room because I knew they were going to come in and be negative.  I didn’t want Will to hear that.  I met a new surgeon and refused to let anyone but him operate on Will.  I relied on doctors and nurses I trusted and didn't pay much attention to the others.  I was more protective than I have ever been over anyone or anything in my entire life.

​Being Will’s Mommy has made me more brave, bold and confident.  I am sure of what God has called me to do and I will not take “no” for an answer from this world.  I will always and forever wish that Will was still here and that I had never learned any of these lessons and had never grown into this new person I am today.  I would willingly and gladly take the less bold, less brave and less confident version of myself if I could have Will back.  Since I don’t have that choice, I will choose to make something beautiful out of this tragedy, drawing the strength and courage to do so from the strongest and most courageous person I have ever known - my son, Will.