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.

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.

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.