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”
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.
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.
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.
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.
“You are my sunshine, my only sunshine
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).
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.|