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February
11
2021

February 11, 2021

“From the complications of loving you
I think there is no end or return.
No answer, no coming out of it.
 
Which is the only way to love, isn't it?
This isn't a playground, this is
earth, our heaven, for a while.
 
Therefore I have given precedence
to all my sudden, sullen, dark moods
that hold you in the center of my world.
 
And I say to my body: grow thinner still.
And I say to my fingers, type me a pretty song,
And I say to my heart: rave on.”
                                                 by Mary Oliver
 

It’s been half a year since losing our Isla Bear. That seems like such a long time, but the pain of our loss continues to cut deep. Missing every part of that huge personality and that big, bright smile today.
 
Today, it feels like it happened yesterday.

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February
3
2021

The Hug

*I won’t be sharing all of my writing on here. But, this is one moment in the days leading up to her death I want to share. I feel it speaks to who she was all the way until her final breaths. She died a few days after this, but this was my last interaction with her and I continue to hold on to it on my darkest of days:

    ... Later that evening, I took a shift sitting by her bed. I listened to the clanging of dishes, the distant running of feet and the slow, rhythmic pump of the oxygen tank. Just sitting with the exhaustion. The emptiness. The weight. No, not even weight. At that point, the weight of things felt so heavy that I almost felt no weight at all. Like the weight of things had pushed down so hard for so long that finally I popped like a balloon. And there was nothing left but the shriveled remains expelled of its air. I was done. Shriveled and limp from the weight. No thoughts. No tears. No big feelings. Just limp and done. 

As I stared at this foreign figure laying in bed, I told myself I should feel a feeling. Any feeling, really. At some point it just became too hard to feel. The adrenaline from the year puttered out. The anger at the system that failed her, gone. The passion I had to find another way, to keep hoping- used up. And the weeks of rejection I felt from her having sucked away our intimacy. 

Now, here she lay- practically unrecognizable. Her skin graying, eyelids swelling, veins beginning to expose themselves, her body contorted into an unnatural position- neck stiffly down, legs sprawled open. Foreign sounds coming from her lungs. How was this my child who just weeks earlier chased nurses down halls and put them in “jail”? The child who filled a room with her laughter and clever antics. The child who engaged any awkward resident who entered formal and reserved and left with a belly laugh and a promise to return soon. Where was my Isla Bear? 

I released my phone I had been clinging to like a security blanket. As if escaping into it would save me from the moment. I inched toward this stranger. I lifted her sheet up to peek at her legs. No sores yet. I felt her skin still soft and warm. I ran my hands through her hair. It was a few inches now. Wavy and brown, curling up slightly over her ears. Another month and I would have been able to slip a clip in it. I pressed my lips against her still squishy cheeks. I reached for a book, The Sneetches and Other Stories. I flipped through the pages to find her favorite story, “What Was I Scared Of?” The one she called “The Walking Pants”. 

Maybe I was trying to find a way to connect with her. Maybe I was sick of not knowing what to do with myself. Maybe it was guilt for.. well, so many things. Maybe I felt this is what a good mother does at her child’s death bed. Whatever it was, I read. Letting the soft waves of her hair pass between my fingers, aware of her lungs gurgling, I read. I used special voices, inserted dramatic pauses and laughed as I exclaimed those things only she’d interject during a reading of this goofy tale. 

I heard the stairs creak and release, creak and release. Michael was coming to take his shift, but I kept reading. We were almost to the best part- when the pale green pants begin to cry. When he got to the top of the stairs, he checked the oxygen tank and quietly opened the door to take his place by the bed. I was just finishing up, 

 

And, now, we meet quite often, 

those empty pants and I, 

And we never shake or tremble. 

We both smile

And we say

“Hi!”

 

I closed the book and set it down. I leaned forward toward her bed to help my stiff body rise from the floor. As I leaned, her eyes- those big, beautiful brown eyes- flashed open. Her arms bolted toward me in tandem- almost robotically. Her hands grabbed my neck and, with what would seem like super human strength for such a weak body, she pulled me down toward her with a determination so familiar. She wrapped those pale arms tightly around my neck in the deepest, strongest, most desperate hug. As she hugged me, I looked up and locked eyes with Michael. Tears started streaming down both our faces and he nodded at me. We both knew it. This was her goodbye to me. 

In the moments I read to her, something must have stirred within her. The familiar sound of my voice, the gentle touch of my hand in her hair, the old jokes we told- they brought her back to me. Until that moment, she had been a shell of my child laying on that bed. Her true self long smothered out by opioids and anti-psychotics. But it was as though the familiarity of my love called her back to her body. It called her back to embrace me one final time. To remind me of who she was. To show me the rejection she put me through was not her but her body animalistically trying to survive despite the mind having already begun its retreat. She knew I loved her. She loved me. And she needed me to know it. 

She weakened again. I laid her back down, kissed her forehead, and told her I loved her as she looked hard into my eyes. Finally, her eyes fluttered, and she drifted back to sleep- falling into her lung gurgling pattern of uneven breaths. It had been just a moment, but it was more than enough. 

January
27
2021

January 27, 2021

Some days, I have endless energy.  Motivated, confident, moving forward with a purpose. Yesterday, I was killing it. Burned through my to-do list- even added some tasks. Then I discovered gorgeous, finished hardwood flooring under our stained bedroom carpet. Within a few hours, I managed to rip the entire thing out, clean the floor, and get a new rug placed under the furniture all while still making dinner, playing a round of Monopoly Jr. and cleaning up the kitchen. Yesterday, I was exceptional. 

Today, I’ve wandered the house, blankly staring at the piles of things to tackle- unmotivated. It’s almost 4pm and the lunch food is still sitting out on the counter. At school pickup, I hid under my face mask, sunglasses, and hood to avoid interaction. While folding laundry, I got triggered by listening to a favorite podcast that included content about hospital stays in its latest episode. A rush of memories. So much for the laundry. I struggled to connect with my boys- my mind elsewhere. I scrolled through pictures and videos of this time last year- weeping. She was getting some hair back, playing with her baby brother in the hospital room- reading to him with the sweetest little voice, handing out Valentines to the hospital staff in her “fancy hat”, braving her way through her first NG tube with the help of Mr. Potato Head who just so happened to also have one. Lighting up each day with her fire despite her suffering. 

Today, there is a weight pressing down on my chest. A tightness in my throat. A low buzzing through my body. A fog. An ache. An ache the never quite goes away, really. But an ache that occasionally intensifies without warning- triggered by nothing but a fresh look at the picture of what our family is now. A family glued together through love and suffering. A family reeling from a loss, trying to find it’s footing. 

Sometimes I’m doing alright.
But then days like today hit me, and I remember I’m still very much doing this day by day. 

And days like today are what takeout is for. 

January
2
2021

Hello, again.

Here I am. Coming back to this terrible purple and white platform. 

It’s been almost five months since Isla died. I’ve given myself and my family a whole lot of space. Something we’d had none of for over a year. But, now I’m in a place where I’m drawn back to writing. During what was the most traumatic year of my life, when my mind felt like a wasteland after each day’s war, I found some semblance  of structure in my thoughts. During the loneliness that extended hospital stays conjured within me, I found a community of support outside the walls of the unit. Toward the end of that year, I began to find my voice. A voice I realized had been silenced for most of my life. Through writing, I began to find a part of myself that I lost and a new part that had not yet been discovered.

Writing was comforting,  healing, revealing- all things I could use a bit more of these days.

So here I am. Back at it. I can’t say that I will stay on this platform for most of this journey I’m about to embark on. At times, I may share. Probably not most of the time though. I’m making no promises- trying to keep the pressure low. All I know is this: I need to write again. There’s a hell of a lot to work through and this is the way I’m choosing to move through it. Facing all there was and maybe some of what could be as I hammer away on my keyboard. I don’t know if my focus will be the past or the present. I’m trying to not trouble myself with it. 

I’ve dreaded this. I’ve avoided it for months really. I’ve been going to a therapist because, well you’ve read about the last year.  Clearly, that’s necessary. But I honestly found it easier to speak with a therapist than to write. When I’m talking, I still find that I’m working at the surface. This isn’t a knock on my therapist- just a reality of who I am. For these thoughts, feelings, traumas, and questions to rise to that surface, I know I need a slower, more meticulous rate of processing in my own private space. I’m working to carve that out for myself now. (Of course, I will continue to work with her- this is just bonus work.)

I’ve claimed space on our family calendar today. Today I will start writing again. I retreated to Michael’s COVID year workspace in our depressing dungeon of a basement. I set up a candle, grabbed a drink, turned on the space heater, even took off my bra to get real comfy with it. Ready to type.

Hmm maybe turn on some Christmas lights for mood?

Do I need music?

Scroll instagram for a few minutes.

Avoidance.

Opened up my laptop.

Went through emails.

More avoidance.

Now I’m just forcing myself to type. I know this is going to be hard, but I need to rip the band-aid off and just type. 

Here I am typing. I’m trying. I’m typing.

———————————————————————————————————————————————————————

Well, I guess the best way to start this is an answer to the question I dodge every time. “How are you?” It’s just the worst. The absolute worst. I’m no hero. I’m guilty of doing it too. But truly, it’s just the worst thing to ask someone going through “it”- whatever “it” may be. The question is so appreciated. It reassures me that the island I’ve made for myself over the last several months is seen and reachable if I open it up. Yet, those messages, no matter how well-meaning and appreciated simply remain unanswered. The short answer is, “I don’t know.” The long answer is this:

Over the last several months, I’ve done nothing but hide from what has happened. I’ve done a thousand house projects, threw myself into Sawyer’s hybrid schooling, created schedules, systems, weekly traditions. I’ve done every thing I could to avoid feeling. Whenever I feel, it’s too much. I’ve been super successful at it too. Which, ya know, makes me feel like I’m really killing it at this whole grief thing.

Most days, I can glide by with every imaginable distraction. My perfectionist tendency has come into play quite well these days. We need to get this house in order after a year of disarray! We need to revamp our meals after a year of meal train casseroles and takeout! Fifteen pounds decided to snuggle into my body during a year of sitting in the hospital, eating takeout, stress snacking, maintaining the stress of crisis, being unable to breastfeed my baby (because stress), and bearing the weight of unimaginable grief. Clearly, it’s time to whip myself back in shape. Daily Pilates it is!  We need to fix this door and clear out this closet! Clear out the basement for an office space! Sawyer needs some structure to get him through this time. Maybe he’ll take up karate! Maybe it’s time for a capsule wardrobe! Probably about time to start composting again! Let’s renovate part of the kitchen! Time to paint the living room! New book reading goals! 

From the outside, I must look like I really have my shit together.

But the truth is this. I’m a fraud just like everyone else. Putting on a brave face to avoid the sad eyes looking back at me when I say how devastated, how throughly destroyed I am.

Every day there is a project, a distraction, a something to distract from the reality that my daughter- my daughter that we dumped our lives into, who we fought so very hard for- died. I felt a rush a hope that a trial was working and then suddenly, overnight, she lost her ability to walk, fell into an incredible degree of pain, and died a slow, miserable death.

It was not sweet.

There was no closure.

There was pain, rejection, and then slow, slow death. 

To be clear, we have experienced trauma upon trauma upon trauma. There has been nothing beautiful or meaningful or poetic about our experience. It has been hell. 

How are you?

Not good.

Some days, I can forget anything happened. There is a new normal. I have Michael and my boys and we are happy and we are fine-ish. Nope that doesn’t make me terrible. It means I’m surviving.

Some days, I struggle to get out of bed. Not most days. But there are those days when I hear the sound of my boys running but my mind only tunes into the absence of her little feet- running and then jumping into my bed. Sliding under the covers because she was my “snuggle girl.” 

Some days, I wish I were waking up on the hospital pallet they attempt to call a bed. Waking up to beeping machines and a young nurse (one who is still doing her time working the night shift and is still oblivious to the struggle of real parents sleeping in a hospital room) whipping open the curtain saying, “Can I get you anything?!” Wishing I were waking up for the umpteenth time in that way because past that smiling nurse is my daughter, wide awake and smiling. My girl patiently waiting for me to wake so she can ask if she can turn on Daniel Tiger. Did you know that once, I woke up to her saying, “ Good morning! How did you and your vagina sleep last night?” She was the best. 

Some days I want to scream, “I don’t actually believe that!” People can be really great in assuming that I am the same person I was fifteen years ago. No, I don’t believe in heaven. Is that okay to say? Am I allowed? I most closely align with Christianity and am a follower of the way of Jesus, but that doesn’t mean that I line up with every traditional view of that religious belief system. When you say, “At least she is free! Dancing in heaven with Jesus!” That actually makes me feel angry and unseen. No, I don’t believe in heaven- at least not in the more traditional way I grew up with. Does that still make me acceptable to all the people who have cared for our family? When I hear those words, I don’t take them as comforting. I take them as dismissing the pain I’m feeling. Sometimes, it feels like a way of dodging the uncomfortable truth that there are some things we just can’t know and that, yes, that does make a loss so much harder. 

Some days, I want to move our family forward. Not away from Isla. But forward. I want to have another child. To give Ellis a sibling who is near in age to him. So he can experience a sibling in the way that Sawyer experienced that sort of relationship. Is it to soon to have those thoughts? Probably. But they are my thoughts. Isla is not to be erased but I want there to be life ahead of us still. I just don’t know how to navigate that and there is guilt. 

Some days, I just scroll through my phone staring at pictures. Watching videos of her. Evenings are the hardest. I can distract myself through the day; but when all grows quiet and still in the evening, when I look up at the photos on the wall, that’s when I lose it. When I feel the deep absence of her. 

Some days, I grieve the loss of my other family. Over the course of last year, Michael and I often described ourselves as parenting not one family, but two. There was home family (us and the boys) and hospital family (us and Isla). And we each took turns parenting each family on our own. This loss is not just like losing a child, it’s losing a whole family. Home life didn’t initially feel greatly different. That “family” was left intact. But there was the other family that was very much removed from the boys- the one made up of Michael, Isla and I with our hospital rhythms and culture and traditions. That family is gone. Yes, that family was defined by living in the hospital. But, I’d do that forever, if it would only bring her back. 

Some days, I get angry. It’s incredibly frustrating to have the resources brought to us be primarily labeled as “pregnancy and infant loss”. I feel deeply for those who have lost a pregnancy. I feel deeply for those women who have carried their child full term and experienced their beautiful child for a few short hours, weeks, or months. It is traumatic and awful. But it is not the same. Their loss is deep and great. But not the same. They grieve a life that wasn’t. Our grief is different. Where is our support? There really is very little offered. And with Covid, what has been offered, is all on hold. There is no support. It’s us holding each other up within the walls of our home. 

Very few parents have the opportunity to experience their second child in the same way they do their first. One on one. All day, everyday. With Isla, there was a different intensity of relationship. It was a full year in the same ROOM as her. Can you imagine being in the same room as your three year old for a full year? It is an experience. And a three year old with cancer. Cancer kids have a different level of maturity. They just do. They get things in a disturbingly clear way. I have a memory of Isla, when she was sick with an infection and fever for several weeks. She said to me, “I just dreamed that I grew wings and I flew far away from this place. I was strong and could go anywhere I wanted. Why can’t I grow my wings?” Right after she said that in her feverish state, Nurse Becca walked in the room and I wept on her. I told her what Isla said. She hugged me and explained that strangely many cancer kids have such maturity and clarity of thought and it can be disturbing. The thing is, we had a deep, deep relationship unlike a relationship a normal person would  have with their three year old. There was an intensity to it. And now, there is an equal intensity of loss. So no, this is not the same as losing an infant. I had 2.5 care-free beautiful years of getting to know her and then one year of intense one to one relationship where she was my person. She was my everything and there was a depth of relationship that is not normal for a mother and a three year old. A depth that can only exist through pain. 

Some days, the thing I grieve most is not knowing her as a young adult. The force she was as a three year old... I just wish more people could have had the opportunity to experience it.  How would she have been as a 23 year old? The world never will understand its loss. 

Some days, I try to reach outside my bubble but usually regret it. I find far too many things triggering. I know I’ll eventually move past this hypersensitive space but not quite yet. What I struggle with most is being around young girls Isla’s age. It sends me into a spiral. The life she lost. The girl she would have been. It’s too much. I’m home with my boys for now. Hiding. I can’t do it yet.

Some days, I feel that if I hear one more person complain about how hard 2020 has been, I will lose my mind on them. I would give anything to be quarantined with my family of five. Absolutely anything. Truly, I’m still holding back a lot here. 

Some days I’m just on edge. There is just this low grade current of rage humming  just under the surface. There is no direction to it. Nothing that seemingly initiated it. But it’s there. Apologies if you end up being the one who unknowingly comes too close to it and gets zapped. 

Some days, I’m angry at cancer survivors. Why not her? Why them? Why not her? Why the fuck not her? Maybe that’s my darkest thought.

Actually, probably not. There’s been darker. 

Some days, I find a great deal of comfort simply knowing I knew her. Looking at the rainbow prisms scattering their light around the living room and I’m at peace. I smile to myself remembering her sweet light and I’m at peace. 

Some days, I see Isla when Ellis smiles. They have the same smile. Exact same. It’s a gift. A terrible, beautiful, tragic, sparkling gift. 

Some days, I’m having the most peaceful of mornings and then I hear about a child turning four. I cry. It’s instant. The tears don’t wait a beat. They just happen. It’s not fair. Life’s not fair. But this is really, really just not fair. Four shouldn’t be seen as an achievement. But now it is. She didn’t make it there. 

Some days, I want to say everything but to total strangers. Talking with people I’m close to is too hard. That’s too personal, too jarring, too cutting. Much like writing, I guess. But somehow it’s easier to announce our trauma to strangers. Just to get it out and walk away without consequence.

Some days, I feel nothing. 

Some days, I’m just tired.

So, in answer to the question “how are you?” I guess the only response I really have is a shrug and a “meh”. Today could be better. Today could be worse. Today, I’m here. 

 

 

 

October
2
2020

October 2, 2020

We had an absolutely overwhelming response to our toy drive for Isla’s birthday month! The entire list sold out in less than 24 hours! Thank you, thank you, thank you! I’ve received messages from many who never got a chance to get to the list who would still like to contribute. Because of this, I’ve added some items to the list:

https://www.amazon.com/hz/wishlist/ls/2HWJQ8W3UUR6F/ref=nav_wishlist_lists_2?_encoding=UTF8&type=wishlist&fbclid=IwAR2DovghZlvyuLbNdrxZlxF7XtAuvExNvyyf6NMhwLahoKS6PaU7v9uwJ2o

I don’t want to overwhelm the small closet so I don’t want to collect too much beyond this. However, we can also still collect Amazon and Target gift cards. These can be given to the families in the unit for various needs. When Ellis was accompanying me to the hospital in his first few months, he was extremely colicky. It was awful. I remember in one of my lowest lows up until that point, the child life specialist handed me an Amazon gift card so I could buy him a swing. Such a simple gift was such a relief to me. I’m confident that just about every family in the unit could use this sort of help in one way or another.

These gift cards can be mailed to me at:
7804 W. Clarke St. 
Wauwatosa, WI 53213

Again, thank you so much for all of the love. Our hearts are full. 

October
1
2020

September 30, 2020

Tomorrow will be the beginning of October, Isla’s birthday month. It’s a time I’ve dreaded. Every milestone, event, special occasion without her has been— well, on those days I just don’t feel like I can breathe. 

Sawyer is determined to celebrate Isla on her birthday. So celebrate we will. He said we should do something that Isla would want to do. What would Isla want to do on her birthday? Go to the hospital of course! No, but really. Last year on her birthday, when given the choice of doing anything she wanted in her precious time at home, she said she wanted to go to the hospital to visit her friends (nurses and therapists). And that’s what we did. We visited her friends and she loved every minute of it. 

This month, in her honor, we would like to collect toys to bring to the MACC Fund Unit. This was Isla’s unit. The unit for cancers and other blood disorders. In this unit, they have “the toy closet”. This was everything to Isla. Any day that she had a difficult time, hard procedure, or needed a little extra something, the child life coordinator or a nurse would bring her to this sacred closet where she would pick out any toy she wanted. The girl liiiiived for the toy closet. Near the end of her treatment, she so had the unit wrapped around her pudgy little finger that she would straight out just say, “I’d like to go to the toy closet, please.” And they’d bring her immediately.

That girl. 

Anyway, this toy closet. We want to stock it up to brighten the days of all those kiddos fighting their fights on the fifth floor. We want to pack it out.

I’ve made an Amazon wish list with items for a variety of ages in the unit. There are kids there from infant to eighteen. We will deliver the items to the hospital the Friday before Isla’s birthday (10/23). Please DO NOT ORDER ANYTHING AFTER OCTOBER 20.

https://www.amazon.com/hz/wishlist/ls/2HWJQ8W3UUR6F/ref=nav_wishlist_lists_2?_encoding=UTF8&type=wishlist

Isla would love this so much.

August
19
2020

August 19, 2020

Today, at 6pm central time, we will be holding a private service to remember the light of Isla (“eye-la”). Because of COVID-19 restrictions we are limited to 50 people.  

If you would like to join us in spirit, please light a candle at 6pm in remembrance of this radiant child. 

Her time with us was far too short and her death a true tragedy. 

But may we remember her light, her deep, endless joy, her engaging spirit, her compassion, her humor, her maturity beyond her years, her zest, her stubborn passion, and her grit. 

She was everything I ever dreamed a daughter to be and so much more.

May the fire she lit in this world never go out. May it blaze.

Please join us tonight in remembering that fire. 

August
12
2020

August 12, 2020

Isla Arden Gentry

10/25/16- 8/11/20

 

No more pain.

No more pokes.

No more beeping.

No more “tubies”.

No more “BoBo”.

No more procedures.

No more blood.

No more platelets.

No more isolation.

No more swabs.

No more scans in the big doughnut.

No more medicines.

No more chocolate syrup.

No more “be careful”.

 

You are free. You are free. You are free.

 

Run wild, sweet girl. You are free.

 

**In lieu of flowers, we request you donate to the MACC Fund. Direct the donation to AML (Acute Myeloid Leukemia) research in memory of Isla. Pediatric cancer research is horrifically underfunded. Only 4% of federal funds toward cancer research goes to pediatric cancers. Even less to more rare cancers like Isla's. No child should have to fight like Isla. No family should suffer like this. 

 https://maccfund.org/donation/