Good Grief

In Fall 2014 I was initiated in the worst way possible to a club I never wanted to be a part of.  Upon entry into this club I felt lost.  The journey to get here had left me exhausted, confused, angry and broken.  My faith had been simultaneously shaken and strengthened and I didn’t know what to think or believe anymore. Continue reading “Good Grief”

The Last Day

3 years ago today, on a beautiful Thursday in September, I stopped being the parent of a chronically ill child began a new journey as a bereaved mother. It’s taken me three years to write this down, so I may have forgotten some minor details, but I’ll never forget that morning.

It was around 6am I woke J up and pleaded with him to hold Kate.  She had barely slept that night and I was exhausted and just want an hours worth of sleep.  I didn’t recognize it then in my sleep deprived state, but I later realized her restlessness was most likely due to her increasing struggle to breathe as her already tiny lungs got weaker and weaker.

Later that morning I begged J to let ME take Jack to the store.  I needed to get out of that house.  I needed to feel like life was “normal” for a moment.  I needed to escape the medical world I had been living in for over a month. Jack and I set off on a mission to buy an ink pad so I could get Kate’s hand and foot prints for keepsakes. I don’t even know what else I intended to buy that day, I guess it doesn’t really matter.

I talked to Kate’s pediatrician as I pulled into the parking lot. I told her that it had been a rough, restless night, but was ok when I left her. I put Jack in the cart and walked into Meijer.

The trip didn’t last long. I was walking down the baby aisle when I got a panicked call from J.  He was asking if the numbers on her monitor could falsely read low for a moment. He told me her heart rate had dropped but everything looked good now. We quickly left the store, ink in hand, because my gut told me it was now or never if I wanted those prints.

When I arrived home and saw Kate, I knew it was THE day.  I don’t know if she had drastically changed while I was gone or if I was just seeing her with fresh eyes, but I could tell. I looked at J and told him I didn’t think it’d be long and he agreed. I had been simultaneously dreading this day but praying for her struggling to end since the moment we decided on hospice and now the moment was here.  I called hospice, but only got our nurse’s voicemail.  I left a message and waited for a callback.

As I waited for a callback, I decided that if this was the day, then I wasn’t going to waste anytime and I was going to get her prepared.  I felt this sense of urgency to get things done before I just sat and held her. Every time I walked past her as I did my tasks, I felt guilty, yet I couldn’t stop just yet.  I put Jack down for a nap.  I went into NICU nurse mode and started to create some final keepsakes. I took out the ink, grabbed some paper and made a few copies of her hand and foot prints. Her feet were hard to do because her foot drop had become so extreme and her tiny fingers were so tightly clenched from her disease that I had to pry her little palm open. It was messy, so when I finished I decided to bathe her. Because of her short oxygen leash, I brought the baby bathtub into the living room and bathed her one final time. I dried her and wrapped her in a blanket because she felt too clammy to dress.  In hindsight I wish I would’ve just stopped and soaked in every second I had left with her.

By this time a good hour or so had passed with no callback, so I decided to try the main number.  Upon reaching them I learned our regular nurse was stuck in Port Huron so they sent another nurse over right away. She arrived quickly, pregnant belly and all. I’m ashamed to say that I don’t remember her name, but she was kind and I actually preferred her to our original nurse.

She immediately assessed Kate and asked if I had taken her temperature(I hadn’t, why hadn’t I thought to do that?!). When she checked it, it was low. She looked at me and in a soft voice confirmed that  Kate was actively dying, this was THE day. She stepped outside and called the hospice physician and we texted our families that Kate wasn’t doing well.

Before we knew it family started arriving. It all felt very unreal.  I never stopped praying for a miracle but I had also secretly been praying since we entered hospice for God to take her while she was peacefully sleeping on my chest in the middle of the night. Yet here I was, middle of the day with a room full of people and I didn’t really know what to do.

So I held her.

I rocked her in our big, black recliner and I talked to everyone like it was an ordinary day. In between normal conversation we talked about funeral homes and final plans.  At one point I shut off her feeding and removed her NG tube. They started giving her morphine to keep her more comfortable and it stained her mouth blue. Every so often I’d look down at her and caress her face, kiss it and tell her it was ok to go. When her numbers began to drop slowly, we turned off the monitor. I let J hold her for a bit and offered for others to as well, but they all declined so that we could have our time.

I asked about removing her oxygen. I was  told me it was up to me, but some believe it makes them more comfortable. I waited until her breaths slowed a little more then finally took it off so I could finally see her face free of tubes for the first time in almost a month.

I marveled at how perfect her little face was. The way her hair swirled in the front of her hairline and how her eyelashes perfectly kissed her cheeks as she slept in my arms. I caressed her long fingers that had began to relax a little and her skinny little feet that had started to lose color. I continued to kiss her every so often and tell her it was ok to go. I took a few pictures of her so I could remember what she looked like one last time free of tunes. This went on for a couple of hours, but it felt like forever.

Some family members sat outside and kept Jack occupied, while others stayed inside with us. The social worker from hospice had come in at one point and would venture out of the kitchen to check on me sporadically. The nurse sat on the floor next to me, but didn’t feel intrusive at all. She checked Kate’s heart rate periodically and offered to give her morphine whenever enough time had passed since the last dose. Finally just after 4pm, she listened to Kate one final time and told us she was gone.

I don’t remember having a profound react in that moment, it was almost anticlimactic for me. Perhaps I was in shock. I just continued to hold her and kiss her face. The social worker offered to do some more keepsakes and we made some colorful handprints that included Jack, J, and I. She offered to help me bathe her, but I confessed that I already had.

Kate’s neurologist and pediatrician called and I spoke with both of them. Her pediatrician was in shock that it happened so quickly. Her neurologist informed us that her testing for SMA had come back negative but the SMARD testing was still pending(we would end up waiting another 2 full weeks). We discussed autopsies and muscle biopsies. She offered to come over if we needed her to, but we told her we were ok.

After sometime, family said their final goodbyes and left. It was then just the nurse, the social worker and us.  I remember rocking her and wondering, “now what?”.  I continued to hold her for a couple of hours. I just couldn’t put her down even though I just felt like I was prolonging the process. We let Jack say goodbye and J put him to bed.

We finally agreed to have the funeral home pick her up around 8pm. We had decided on a muscle and diaphragm biopsy to help obtain more answers, followed by cremation. I dressed her in her pink, lamb pajamas, but was then told that whatever I dressed her in likely wouldn’t be returned, so I changed her into a white onesie and wrapped her in a white muslin blanket. It seems silly now that I wasn’t willing to part with any of her other things(and the items did end up being returned to me).

When the funeral home came, they arrived with a black van. When we were ready, they had me place her on a gurney in the back. They gently strapped her in and offered their condolences. They then drove away with our baby girl and a huge piece of our hearts.

J and I stood on the driveway for a moment as I sobbed in his arms before going back into the house. My best friend came over briefly to offer condolences and check on me, I updated her Facebook page with the news of her passing, snuggled Jack for a bit and then headed off to bed. I curled up with her pink knit blanket and J and cried myself to sleep sometime after midnight. For a moment I prayed the sun wouldn’t rise that next morning because I didn’t know how I could face a day without her in it.

3 years later I have faced over a thousand days without her in it, yet there are parts of that day that are as vivid as they were in real time.  Other parts I have begun to forget.  It seems impossible that I have made it this far at times, but I know this part of my story is still being written.  Grief and I are still getting acquainted and my journey into it has only just begun.

One, Two…Three

My dear sweet Kate,
Three years ago at 20 minutes after three in the afternoon we finally laid our eyes on you.  It was an amazing moment.  Just a couple hours before I didn’t know if my all night labor would lead to the successful VBAC I was hoping for. I was stuck at 5cm, just like I had been with Jack.  And just like with Jack, that epidural didn’t work for me, so when I rapidly hit 10cm, I felt every.single.thing(and I was pretty vocal about it too!)  There was screaming, tears, and moments I felt like I couldn’t do it, but then there you were on my chest, dark haired and wide eyed-it was simply amazing.  Very few moments in life will ever make me feel as accomplished as I did in that moment.  You were my only baby I got to have that moment with, the only one I got to hold skin to skin right away, the only one I got to latch immediately after delivery.  Everything about your entrance was so normal and perfect, yet your life was anything but.  I remember looking at your dad an hour after you were born and telling him that I was good with two because life felt  so complete in that moment.
And yet, here I sit 3 years later and life looks so much different then I pictured it while holding you in that delivery room.  Instead of planning a birthday party for you, I decorate your grave.  I don’t know what your favorite color would be, if your hair would’ve stayed dark and your eyes blue.  I don’t know if you would like “My Little Ponies” like I did or if you’d prefer something a little less girly.  You are my child and there is so much about you that I don’t know, and never will.  What I do know is that I miss you like crazy and time doesn’t heal wounds like this.  I don’t have as much time as I’d like these days to sit quietly and think about you, grieve you.  It tends to come in intense bursts instead these days, often sneaking up on me.  It’s triggered by random sights, smells, and memories.  Most days I can talk about you without an issue, but sometimes I can’t get the words out without feeling my eyes fill with warm, salty tears as the lump in my throat quickly expands.  Some nights I sit in bed, long after everyone is asleep, and just weep for you.  The air escapes my lungs and for a moment I feel as if I can’t catch my breath again amongst the tears.  And yet other moments I feel numb, like my brain is so exhausted from the grief it can no longer process a single emotion.  Time does not change the feeling in these moments, it just spaces them out and brings them on at random intervals.  I’d like to say that 3 years in I feel like I’ve got a bit of a handle on this all, but I don’t.
Today we tried to celebrate you by doing things we think you would’ve liked or that reminded us of you.  Jack chose to add purple to your decorations this year(because you know how he loves it) and we tried to make your grave look beautiful and magical like a 3yr old little girl would love.  Nate didn’t want to send you your ballon and every time we tried to release it, it got stuck in the trees in the oddest ways, like you were playing a game with us, it brought humor to our visit with you.  He finally let it go when he spotted a toy car on another child’s grave and when we looked back, it had vanished without a trace.  Again, very odd-I hope you were amused by our confusion .  Next year perhaps we’ll try a butterfly release.  We then headed to the zoo, a place I fondly remember taking you a couple of times in your short 90 days on Earth.  We looked at the animals, ate where I used to nurse you, visited your brick and rode the merry-go-round.  We drove past the hospital on our way home just minutes after your birth time, and I felt a little sad thinking back to that moment.  We then stopped at Yates for a donut sundae(your dad’s idea)and discovered it was free donut day!  It was a busy day full of conversation and memories of you.  We also talked about how much has changed just in the last year…new jobs, new house, new car, new dog.  It was a big year, full of transitions.  I wish you were here for all of it. I wish I could just see your face again, even just for a moment, wrap my arms around you and tell you how much I love you.    Someday I will, just not on this side of Heaven.  Until then, I love you and miss you more than you could possibly know.
Love always,
Mom

Home

Those of you who know me in “real” life know I have wanted to move for quite some time.  My “plan” was to stay in our first home for no longer than 5 years.  We’d have a couple of kids, outgrow our space, and move on.  Simple as that.  Well, we all know man plans and God laughs.  And much to my dislike, life certainly has not followed my simple plan.  However, I am constantly amazed by the little pieces of the puzzle God lets me see.  
The story of how we came to find our new home is a long one, and probably will sound crazy to some.  I promise though, if you are a person who believes in divine intervention, you are going to want to keep reading.
I have always been the type of person who likes to gather information.  This means that for several months(ok years) before we were actually ready to move, I’d been looking at houses online.  Sometimes everyday, sometimes once a week.  I just liked to see what was out there.  I also was always trying to make plans to get our house ready to list when the time was right.  One day I posted in one of my “mommy” groups(many of you know the one) about our kitchen and whether I should redo the counters.  A fellow mommy sent me a message letting me know she was a realtor.  I told her we weren’t quite ready to list, but I’d keep her in mind.  Later I learned through the group that we shared something in common, we both had lost a child.  A connection was made and I knew that when I was ready to sell, she was my girl.
Then this summer I found a house in a neighborhood I loved with a 3 car garage(background: a big garage was on my husband’s must have list).  The only problem was there were no interior pictures of that house.  I contacted my fellow “mommy” realtor and asked her if she could help because for some reason I just had to see this interior.  Meanwhile I decided to go drive by this house.  No harm right? Wrong!  As I was preparing to exit the last street of the subdivision I got backed into at the stop sign(yes you read that correctly).  The driver of the van in front of me lived in the corner house.  He was a young man on his 2nd day of work and had forgotten his directions, so he attempted to back into his driveway and didn’t see me and I couldn’t move out of the way quick enough.  
As we sat and waited for the police, I began talking with him and his mom, who came out when the accident occurred).  As I spoke to them, things started to get more and more ironic.  He worked for the company my husband worked at when we started dating. His mom was battling throat cancer, which is what my dad died from and her name was Kathryn, which is Kate’s full name.  They were very kind and told me all about the neighborhood and it’s history.  It was very informative (and embarrassing when I had to explain why I was driving through their sub!).    I eventually saw pictures of that house interior and it wasn’t for me, so I chalked the experience up to just a funny coincidence.
About a month later a house posted directly behind the cemetery Kate is at.  It was a quad level which I’d never considered before, but I was suddenly drawn to it.  I could imagine exactly where I’d put all our things, where the boys would play and loved the idea of being so close to Kate.  I was able to get my husband to agree to go to the open house, but sadly it sold the very next day.  I was so upset I cried!  But that was the moment he told me we could get serious about looking and getting ready to sell(although in typical fashion, nothing happened for awhile still).
Then this fall a house posted in the sub adjacent to the one I had gotten hit in this summer.  Ironically it was a quad with the same layout as the one I had cried over, only this one was completely updated.  Much to my surprise I asked my husband if I could go look and he said yes!  I just happened to be off the next day.  I went and saw the house and immediately loved it.  But I knew our home need some work before listing so I assumed it’d be gone before we could get our ducks in a row.  A week went by and I looked at the listing everyday to see if it was pending.  
Then one day a Facebook friend commented on a shared link of the house.  I didn’t know the original poster, but I commented on how much I loved the house.  A few days later the seller contacted me via Facebook just to say she hoped that somehow the timing would work out.  I immediately told my husband it was fate and he laughed.  We started getting things ready to list our house and I convinced him to finally go look at this house that I loved.  
The morning of the showing I had a counseling appointment and decided to stop and visit Kate afterwards.  As I was driving from the cemetery to the house, the song “Home” by Blue October came on and caught my attention.   As I listened to the lyrics,  I felt like it was a sign.  Much to my surprise, after seeing the house, my usually hesitant husband said we could put in an offer!  There was no debate, no convincing needed, just yes.  I was shocked and elated, but I knew we still had many hurdles to tackle.
Selling our house presented its own set of challenges.  We had some repairs that needed to be done and hiccups along the way but we managed to get them handled, each one just in enough time.  One project required us to hire an engineer.  I spoke with the man several times and when I went to pick up the report in person I was taken back by how much he resembled a white haired version of my father, who had died in 2006.  It felt like another sign.  
On the day of closing the father of the buyer and my husband were talking and coming up with several people they mutually knew when the dad asked my husband if he knew a “Rick Smith”, which happens to be my dad’s name.  It wasn’t my dad he was referencing, but the mere mention of his name was just one more piece to the puzzle.  
Finally our amazing realtor presented us with a beautiful sign for our new home.  It had a beautiful tree and said, “The Bamford Family” and listed all our names individually, including Kate.  It was perfect.  For me it was the final piece to our home puzzle.  This whole process has felt like we were being guided, by something, someone.  Even though I have wanted to move for so long, I have always worried that moving would be difficult because that was the only house Kate ever lived in.  Her life began and ended in that house.  I know she is with us wherever we go, but I have added reassurance that she had guided us perfectly into our new home.  It may all sound crazy to you, but I find great comfort in it.  I am thankful that God has given me glimpses of the puzzle along the way the remind me there is a greater power at work always. 

Halloween

Halloween 2016 marks the 3rd Halloween without Kate, and I can honestly say it hasn’t gotten any easier.  Halloween is a tricky holiday, it sneaks up on me and knocks me down every year.  You’d think I’d learn by now that it’s a tough holiday for me, but every year I’m still taken aback by how sad it makes me.  Maybe it’s because one of the first things I do when I get pregnant is to start to imagining adorable Halloween costumes for the baby growing in my belly.  Maybe it’s because I told our family I was pregnant with Kate on Halloween in 2013.  Maybe it’s because no matter what the group costume, it’s always missing a member.


From the time we knew Kate was a girl I had started to envision a coordinated Halloween costume for her and Jack.  Literally months before she was even born.  Charlie Brown and Lucy, Pebbles and Bam Bam, Prince Charming and Snow White(especially once I saw her dark hair!), the list goes on.  I also really wanted to make her a Cabbage Patch Kid with a little yarn wig.  Once she got sick I decided I could roll with it and make Jack a doctor and Kate his patient.  I had it all planned out in my head even when hospice entered our lives.  

Then she died before her first Halloween.  I hadn’t planned on that.  All my silly Halloween visions left with her.  Jack was still a doctor, probably because our life had been so consumed by medical stuff at that point.  I didn’t realize how much it affected me though until Halloween actually came that first year without her.  That night we had all of our nephews and our niece over.  Suddenly everyone grouped their kids together to take a picture in their coordinated costumes.  And there stood Jack, alone in his doctor costume.  He had no group, he was alone. In that moment my heart shattered into a million pieces.  It was the first time I realized just how screwed he got in the whole deal.  His sister was gone and he was alone.  It wasn’t fair.  Not to him, not to me, not to J, and certainly not to Kate.  In that moment I hated Halloween. 

Last year, I thought Halloween would be better because I had a baby to plan for again and Jack would finally have a “group”.  I let Jack pick the theme…Mickey Mouse Clubhouse.  Perfect!  He was Mickey, Nate was Donald(the most adorable Donald ever I might add), J was Goofy and Jack made me be Minnie Mouse, even though in my heart that role belonged to Kate.  I took their picture with Kate’s Minnie to help me feel like she was still included that year, but it wasn’t the same, she was still missing and it still sucked.  

This year I once again let Jack pick and in my mind found a way to include our girl.  He picked PJ Masks and he was Gekko.  Nate was Catboy and in my heart Kate was Owlette.  It still breaks my heart that she wasn’t here to wear the costume though and complete the group picture.  There’s always a character missing and it’s never any easier.

Halloween 2014

Halloween 2015

Halloween 2016

Challenges and Changes

As our plane prepared to take off, these familiar instructions were heard overhead, “…in case of emergency, please secure your own mask before assisting others…”.  As I sat there,  I thought about how this not only applies to an emergency on a plane, but life in general.  We cannot assist others without first helping ourselves or we will lack the strength and ability to truly do any good.  I feel these past few years I’ve forgotten these instructions in my own life.  I have been trying to help everyone else without first making sure I have what I need to survive. It’s impossible to live that way for very long.  I’ve been slowly suffocating between trying to be a wife, mother, friend, nurse, and still make time to acknowledge my grief.  I’ve done them all, but I haven’t done any of them well because I haven’t considered my own vital needs first.  

So I decided it was time for a change-a big one, a tough one.  For 5 1/2 years I have put my heart and soul into my work.  For almost 2 years now, that has been increasingly difficult.  I know personal life shouldn’t enter professional life but that is near impossible when you work in the NICU after your baby has died.  In many ways my personal experience has helped me grow as a nurse. I’m less quick to judge, more confident in my skills, and much more empathetic.  These are all wonderful qualities in a nurse, however the last one can be rather exhausting when it’s done day in and day out.  I tried shifting my focus at work, avoiding the really sick babies when I could.  I tried to lessen the emotional fatigue, but it was still too much at times.  So I started looking for something different.
I’ll be honest, I’ve been on a few interviews since returning to work after Kate died, but none of those jobs ever felt right.  A large part of that resulted from wanting to stay close to those who have supported me through her death and the place I spent so much time with her.  But recently that has become more of a challenge, so I finally decided I was ready for a change.  I decided that I needed to focus on what works best for me and my family. That is no longer 12hr shifts with flip-flopping between nights, days, weekends and holidays.  So while I’m saddened because I truly LOVE the NICU, my coworkers, patients and families, it’s time for a change. Mid-October I will be starting a new journey as a Nurse Clinician in a Pediatric GI Clinic.  To all of you I have met on my journey in the NICU-I will always cherish the many, many amazing connections I have made as a nurse in the NICU.  I cannot adequately put into words how grateful I am for the support and knowledge I have received from each and every person I’ve encountered on this journey.  Each one of you has shaped me in some way and helped me become the nurse and person I am today.  I still plan to visit the NICU on occasion as a contingent and I fully intend on continuing to honor Kate’s memory through donations to “Kate’s Comfort Project” and volunteering with the bereavement program.  For months I have agonized about how leaving the NICU would somehow feel like I was less connected to Kate, that I wasn’t honoring her memory if I did something different.   Then I realized that I don’t have to give up her project or volunteering.  And that through everything I do, no matter where I am, I do it with her in my heart.  I can’t describe it, but I know she’s help direct me on this new path.  
Change is often exciting, sad, and a little bit scary.  I know that my family needs this change, but more importantly I need this change.  It’s time to allow myself to breathe alittle.  I am nervous, but also excited for this new challenge.  I was asked in one of my interviews where I see myself in 5 years, and quite honestly I don’t really know.  I hope that wherever this journey takes me, that 5 years from now my soul is less stressed and more at peace.  As always, there are many plans forming in my head, but only God knows the direction my path will take.

This is a page from Kate’s scrapbook that I created for her funeral.  The quote is from the Broadway Musical “Wicked“, the picture is of John and I holding her hands the day she was baptized, and the handprint was taken a few hours before she died.  This is one of my favorite quotes, as it beautifully describes how we carry those we love with us. 

T-W-O

My Sweet Kate, 

Two years.  I can’t believe it’s been two whole years since I woke your dad up to tell him he better shower because you were coming.  Two years since he went to the car for his iPad and texted everyone to say I would probably need another c-section just before he received my message telling him he better hurry back because I was ready to push.  Two years since I felt embarrassed by the screams that came out of me as I delivered you with my(second) faulty epidural. Two years since they placed you on my chest and I couldn’t help but dry you off and stim you because that’s what the NICU nurse in me does to babies. Two years since I glanced up at your dad and saw tears in his eyes as he looked at us(I’m sure it was a combination of joy and fear resulting from what had just taken place). Two years since you opened those beautiful eyes for the first time to take in the world. Two years since they put that little hat on you complete with a bow because you were a girl, MY girl.  A lot has changed in the two years since we first laid eyes on your beautiful face, but one thing remains the same-love. 

My love for you is just as strong today as it was on this day two years ago-it may even be stronger now because it has to cross the divide between Heaven and Earth.  I can’t help but wonder who you’d be today if life hadn’t taken us down such a rocky path.  I wonder what life would be like if you hadn’t inherited a faulty gene from your dad and I, but then I guess you wouldn’t be you.  But I still can’t help but think of all the what if’s, should have’s and might have been’s. There are at least 50 different versions of life with you in my head and the only one that involves you in Heaven is my reality.  How I wish I could trade this story for one of the versions where you live happily ever after with us here on Earth, if only for a moment.   
Somedays it still doesn’t seem real and the only way I know you truly existed was this gaping hole in my heart.  Not even nightmares can leave behind that kind of wound without having been reality.  I hope you always know that I wanted you so very badly, even before I knew you’d exist.  I dreamed of you, I hoped for you, and I prayed for you.  When I had to let you go, it shattered me.  Never in a million years did I imagine in the moment I first held you just two years ago that I’d have to give you back.  Life is cruel and unfair, but I know you got the better end of the deal.  You passed through this life and into eternity knowing only love.  Even as SMARD stole your strength and eventually your breath, you knew nothing but unconditional love.  
You lived 90 days, and spent the majority of those days in my arms. I am blessed that I was able to hold you for hours and hours each one of those days.  I am thankful that you were the one I got to experience a “normal” birth with.  I am grateful I was chosen to be your mother, it has been an honor.  I am proud of all the gifts you have given me, both in your life and in your death. 
There is no doubt that your 2nd birthday has hit me hard.  It’s crazy to think that in 3 days you would be the exact same age Jack was when you went to Heaven.  It’s so hard not to get swallowed up by the sadness of your absence, especially on significant days like today, but I know you wouldn’t want that.  Two years ago you brought so much joy into our lives when you made your entrance into this world and I will continue to make it my mission to spread that joy until the day we are reunited again.  Happy Birthday beautiful girl.  I’m sure the Heavens were celebrating you today just as we were down here on Earth. I love you, I love you, I love you.
Forever and Always, 
Mom

You Are My Sunshine

“You are my sunshine, my only sunshine 

You make me happy, when skies are grey 
You’ll never know dear, how much I love you
Please don’t take my sunshine away”
I’m not sure of the story behind this popular children’s song, or who it’s originally written about, but I do know who it’s about in my story.  
They say a child born before a loss is known as a “sunshine” child.  My sunshine is my yellow haired, bright eyed boy, Jack.  The words of the song ring true for him in every way, especially in the wake of losing his baby sister.  
Jack is my only sunshine, the only one of my children who will ever know me before and after Kate.  The only child who survived the storm with us.  I often feel like he is blessed and cursed to have known what his mother was like before her heart was shattered.  Nate will never know me as a mom who doesn’t have a gigantic scar on her heart.  And while Jack was so young when it all happened, he still had a much different experience in those first 2 years then his siblings ever will.  
Jack truly made our days happier when the skies were so grey, they almost looked black.  He was the reason I needed to get out of bed and his sweet face saved me from drowning in a sea of tears in those early days.  He can make me smile in any circumstance.  I am so blessed that God put that little blonde boy in my life first.
Jack will never realize how he saved me and how much I love him for that.  He will never know the impact his existence had on getting me through what I thought would surely kill me.  And although I’ll spend my whole life trying to show him, I know he will never fully understand how much I love him. 
The love between a mother and son is unique, and so is the love between a mother and her first born.  I hope Jack realizes someday what a beacon of light he is to me and how special he is.  I have never known a child quite like him and he holds his own special place in my heart, right next to the scar left by his sister and the place I hold onto Nate too.  

Parenting Through the Pain

Pretty much every morning I’m off work since Kate died(which is 5 out of 7 days now), my 3yr old wakes up around 6:30am and climbs in my bed.  He wants breakfast, the TV and my attention.  But I’m still tired, mostly from staying up too late or not sleeping well because I can’t turn off my brain, or the baby woke up a lot.  So I turn on the TV or tell him to grab his tablet and play quietly next to me until I’m ready to get up(or his brother wakes up).  

Once everyone is awake, we do breakfast(usually in bed) and I start to mentally plan my day.  I always have these grand plans to clean, do laundry, go shopping, start working out…just be productive.  And almost everyday hardly any of that gets done.  I do what MUST be done and I’m tired.  The baby is needy and my 3yr old doesn’t listen 90% of the time.  I spend more time than I’d like to admit yelling, getting frustrated and then going on my phone for a mental “break”.  I spend far too much time going on Facebook, reading nonsense, looking for advice and searching for support from others who “get it”. Then I feel guilty for not being a better wife, a better housekeeper and a better mom to my children.  And simultaneously I feel gratitude for what I do have-2 healthy children to be frustrated with, the most beautiful angel in Heaven watching over us, support from family and friends, and for the ability to get out of bed, even if it feels forced most days.  Regardless of what I’m doing, I am reminded of her, the one who isn’t here.  
I go to the store and I see the adorable little girl clothes I can’t buy for her, I go to the zoo and I see a little girl about her age, I go online and see someone post a picture of their little boy with his baby sister or announce “it’s a girl” and I’m reminded of what I’ve lost.  
And then the anger and jealousy hit for a moment.  It doesn’t last as long as it used to, but it still stings.  Nowadays it is usually interrupted by one of my boys crying, or seeking attention in someway and I’m forced to stop thinking about the pain, and focus on parenting the living children who need my attention right now.  Before I know it, things are going wrong left and right, and all I want to do is cry, for no good reason other than I just can’t seem to get my shit together.  Because the universe quite often feels like it’s against me. MY child died and everything just seems so unfair.  I should get a free pass on some of this other stuff, the stuff that’s supposed to be easy, but it’s not in the wake of her absence.  But life doesn’t work like that.  You don’t get a gold star or bonus points for enduring the hard stuff.  You just have to let yourself grieve. Feel every ounce 
of the pain. Breakdown when you need to. And then you have to keep moving forward even though it feels impossible. Because there’s someone else on the Earth who still needs you to be their mom, and thank God for them.  Because just as quickly as I can be driven to the brink of tears out of grief and frustration, they can bring me back with a smile, or a hug, or an”I love you”.   
It’s a constant battle between my emotions.  I flip flop through them all day long. Sadness and joy, anger and guilt, frustration and gratitude.  There are days I feel crazy because my emotions are so all over the place, but this is my reality now.  It isn’t pretty and everyday I tell myself I’ll do better.  But this is me, parenting through the pain.   And at the end of everyday, one thing remains the same.

I miss her.

The 2 beautiful boys who simultaneously make me crazy and keep me sane


The Aftermath

Those who have experienced a life altering event, such as a substantial loss or devastating diagnosis, would agree that your life suddenly becomes defined, forever separated into two parts, “before” and “after“.  For me, that event wasn’t Kate’s death, it was the realization that she had a progressive, debilitating, illness.  That’s when the storm first rolled in for me. In that moment, life as I knew it ended.  Dreams shattered and all I saw was darkness.  Now that the initial storm has passed and my days aren’t constantly dark,  I am left to live with the aftermath.  There are broken pieces of my former life scattered everywhere.  Hopes and dream were torn apart, ripped into unidentifiable shreds.  No matter how hard I try to rebuild what once was, I know it will never be the same again.  It’s still incredibly hard to wrap my head around that.  Some days I just stand back and look at the wreckage and wonder if what I’m seeing is real, if this is really MY life?! Some parts are so damaged beyond repair and I must learn to let them go and toss them away forever.  Others parts can be repaired or rebuilt, and with a lot of love and time, they will resemble what once was.  Even fifteen months later, there is still so much debris. I am learning it will take years to fully assess the extent of the damage and a lifetime to rebuild.  It’s hard to say what’s salvageable and what’s not most days. Sometimes I don’t even want to deal with it because it’s too overwhelming.   Parts of me that seemed spared initially and were still standing strong, have begun to feel like they could crumble at any moment as the weight of world wears on them day in and day out.  Then there are other parts that seemed weak and unsalvageable initially that have found new strength when given a little TLC.  Just as everything else in life, this process is unpredictable and full of surprises.  I am not sure what this new person I am building and repairing will look like yet.  Some days I don’t want to be her, but I am learning to accept her. She will never be perfect or what I had originally imagined her to be, but I am slowly realizing there is beauty in her brokenness. After all, a mosaic is not a perfect work of art free from defects, but rather a piece made up of shattered pieces reassembled into something that is beautifully imperfect and still sparkles.  

Our first professional family photo taken with Kate’s bear made from her blanket and clothes.