Another Goodbye

    Dear Jeremy,

    The rain drizzles on this cold March day. Inside our cozy home, I'm cuddled in a soft blanket with my computer in my lap and an ache in my chest. Four and a half months ago, we lost you. A month and a half ago, your great-grandpa followed. I've often wondered at the timing. Grandpa had been declining for the last five years, but very rapidly since the summer. Did he wait for his 90th birthday? Did he wait until he knew that his family was all taken care of? Are you and Grandpa dancing together now? 

    You two had such a special bond. There were a lot of people involved in your care, but Grandpa was instrumental for a season, especially when your sisters were younger and we didn't have the nursing coverage we should have had.

I miss you, Jer-Bear. I miss Grandpa. I miss the way things used to be--before covid, before Grandpa's first fall. I miss the way we took things for granted, and even though we knew your time (and Grandpa's as he was getting older) was limited, we thought we had years and years ahead of us. I miss the problems I thought were problems. 

I look back on photos, even those from the last year, and wish to go back to that time--before you left. We thought you had time. We were prepared for you to grow up--even though you were already starting to look like a little man at thirteen. I was prepared to be your Mama, your caretaker, for all the years you lived after eighteen. I was prepared to never be an empty-nester. You were so strong and beat so many odds for so many years that it just didn't seem possible that you would go off to school one morning and never come home.

I was not prepared for that.

I was not ready to let go.

How do I let go?

How do I say goodbye?

    We finalized your headstone at the same time as Grandpa's (and Grandma's) headstone. Grandpa lies kiddy-corner to you, and we designed the headstones with the Sano family flower--so all can know that you are connected.

On Sunday, Grandpa's marker came in, and as a family, we all went to place it. As soon as the car stopped, River jumped out and ran to your marker. She misses you. So does Zuri, but she handles her grief differently. She won't go into your room or come to the cemetery--but I hope with time that will change. 

We miss you and we miss Grandpa. Nothing is the same. We are trying to adapt to life without you, but it is hard. One day at a time; it's all we can do.

Three Months Without You

 Somehow, three months have passed without you. So very much has changed in those three months, even as we are trying to hold the scraps of what used to be together, everything changes. Our routine was centered around you, and you aren't here, and it's hard. So very, very hard.

Often, my brain wants to believe that you're just at the hospital, and that you'll be coming home any day now. Denial. Then I get angry that you're gone. That I won't get to hold you. I won't get to see your smile and hear you air your grievances to the night nurse. I'm angry that we didn't get one more Christmas with you--one more family picture. One more day. I'd give anything to be complaining about you pulling out your trach five times in a row, or the no-nurse weekends, or how many appointments you have this week. Bargaining. The ache in my chest is vast and sometimes overwhelming. Every time we donate, return, or sell something that was yours feels like losing a piece of you and it is hard and I just want to cry and for everything to stay the same. Depression. But there is comfort in knowing that the items are going to be used by someone who needs them. That they will do some good rather than sitting unused in our house. We are turning your room into a game room--a room where we spend time and continue to bond as a family. We aren't erasing you; your memory will be with us forever, and we celebrate the time we had with you. Acceptance and hope. Your older sister can't bear to go into your room yet, but we're hoping that in time, she will find comfort in your space as I have. I spend much of my time sitting in your room these days. It's where I'm writing this post, on the chair I used to hold and rock you. Your bed still sits to my right, and I can almost imagine you playing next to me. Some day soon, we will donate your bed to another who needs it, but today is not that day. 

The stages of grief are not linear, nor are they complete once we've gone through them. Instead, they cycle like a tangled ball of string, sometimes caught up in more than one at a time. I'm very grateful for every person who has reached out to us, and especially those who continue to reach out even now.

It seems like your passing was just yesterday, and also an eternity ago. Your sweet, mischievous personality will live on in memories told with a smile. I wish I had taken more photos and videos of you this last year, but you had a knack of stopping and turning away from the camera whenever it was on. You were such a teenager in so many ways, and you were starting to look like quite the little man at thirteen. You even needed your face shaved, which ended up being quite the challenge every time we did it.

Despite the challenges we/you had, you were a light in our life. We are better for having had the opportunity to raise you, and grow with you. When you were first born, we had a lot of fear and sorrow, but a lot of love and determination as well. We are thankful you gave us thirteen and a half years, and wouldn't trade them for anything (well, for another thirteen and a half 😉). You are our Little Mister, and always will be.

When the Unthinkable Happens

 

Jeremy Robert

May 13th, 2011 - October 17th, 2024

It has been 84 days since I have seen Jeremy's sweet smile, since I have been able to hold him. The house is too quiet without him. He's not playing with his toys, his jiggly ball (wobble bobble) chiming and jiggling away. His car isn't banging against the side of his bed, or his toys aren't jangling against each other. His machines aren't whooshing and whirring and chiming. I can't hear his breathing sounds or his cooing or his laughter. His tablet isn't playing PJ Masks or The Amazing Spiderman and Friends.

How can someone be here one minute and gone the next? It still doesn't feel real. Even just today, there was a sound that I could have sworn was his cough and my instinct was to rush into his room to suction him. Then the grief hits all over again, because he's not there.

But, I really should backtrack. So much to catch up on, so much to say, and where to start? I'll begin with what I talked about at his funeral: The Gift of his Last Day.

He came home from school Wednesday afternoon ornery, and I lost count of the amount of times I replaced his trach from him decannulating himself, which necessitated me staying in his room with him. He started to get sleepy, so I turned on PJ Masks to help keep him awake and soothe him while I started on dinner for the family. During the title sequence for the show, I heard the distinct sounds he makes when having a seizure, so I rushed back into his room. His oxygen saturation had dropped, so I increased his oxygen and started recording/timing the seizure (in case rescue meds were needed). I noted the moment he pulled out of the seizure, but he still seemed like he was struggling to recover, so I stopped the recording and put my hand on his chest and gently patted him. "Hey, bud, I'm here. Come back to me," I said to him. 

He took a deep breath, and in his Jeremy way, he looked at me and then looked away, but his oxygen saturation returned to normal. His seizure had scared me (they always did), and I picked him up and sat him in my lap in the chair next to his bed. I used to hold him like that all the time, but less so lately because he was getting so big--he was over half my weight. I rocked him, and just held him while he recovered. I can't remember if he put his hand through my hair like he only did with me, but I would like to think he did.

I wish I had spent more time, really soaked in those moments with him, but I had dinner to attend to, so after a few minutes, when he seemed calm and back to himself, I set him back in his bed. He grabbed his toys and played the rest of the evening. Nothing seemed amiss.

Thursday morning, Zuri woke me early because she had a permission slip due that she had forgotten about, so I signed it. Josh usually helped the day nurse get Jeremy ready for school in the mornings, but since I was awake, I did instead. I remember picking out his shirt, one of the blue ones I liked, and since it was a rainy day, I grabbed warmer sweatpants for him.

Jeremy, who is usually not a morning person (he definitely got that from me), was already awake. I grabbed a diaper and started to change him, when his night nurse said that he just put on a fresh diaper. I pointed out that he was wet, to which the night nurse playfully batted his leg and said, "Jeremy, you're making me look bad."

Jeremy raised his eyebrows (which is his way of saying "yes"), and we all laughed. Everything seemed normal. The school bus arrived, and the bus driver called a greeting to both the school nurse and Jeremy, and I remember smiling at the fact that Jeremy was included by name in the greeting (oftentimes, because Jeremy was nonverbal, he was overlooked). Small inclusions like that were noted and very appreciated.

Jeremy went off to school like usual. Once all three kiddos were off, I started making some calls on things that needed to be taken care of around the house. I was on the phone with a company, trying to troubleshoot something that I had been working on for almost an hour when Jeremy's school nurse called. I put the other company on hold, and Jeremy's school nurse said that Jeremy wasn't doing very well and I needed to come pick him up. 

To be honest, I wasn't worried in the slightest. I was actually a little annoyed and I told the school nurse that I would be there in about 20-30 minutes (which is about the time it takes to drive to Jeremy's school). I ended the call with the nurse and returned to the other call as I quickly changed from my wet pajama pants (I had been outside in the rain trying to solve the issue) to jeans and a hoodie, which I threw over my pajama shirt. I told the company to send out a tech and ended the call. I was already in the car and driving to the school when I called the school nurse back to find out more details. The school nurse said that Jeremy was pale and lethargic. I asked if he had increased his oxygen, and the nurse said he was at 2 liters (Jeremy was typically at 1/16th of a liter). I let the nurse know I was on my way and hung up.

There was a TON that happened in the next thirty minutes, and I'm not going to recount it all. The drive will be forever seared into my memory. It went from an annoyance to an outright panic when I received several calls from the school and Josh that the paramedics were at the school, there was no pulse, and then finally that he was being transported to Primary Children's in Lehi. I had been diverted from my route by construction that I didn't know wouldn't allow me to go from west to east, which ended up being fortunate, because the alternate route I had to take ended up having the ambulance pass me. I chased the ambulance to the hospital, arriving just behind them.

The next ten minutes felt like an hour--I still don't know how it was only ten minutes--as I watched helplessly as they worked on Jeremy, but he was already gone. His poor little heart was tired and had had enough. And just like that, he was gone. 

It was forty-eight minutes from the first call to me to the official time of death at the hospital.

Cardiac arrest.

He was in no apparent pain when it happened. He wasn't upset. He just slipped peacefully away, and I can't ask for more than that.

But...how I wish he was still with us...

There was no big decline in his health--in fact, after a semi-rough summer, he was actually on an upswing. We knew--it was always something in the back of our minds--that the day would come. I always thought I would know, or somehow intuit, when that day would be. I thought there would be some sickness, or a general downslide. I never expected him to go off to school like any other day and not return home.

The days pass, and turn into weeks. The weeks have turned into months. Two and a half months and there is still a part of me that wants to believe he's just at the hospital, and will be returning any day.

I call the last 24-hours with him the Gift of the Last Day, because had he not been ornery and pulling out his trach, had he not had that seizure, had Zuri not woken me up early, I would not have spent that extra time with him. I would not have held him and rocked him. I would not have picked out his last clothes or watched as he teased the nurses. I am grateful for that time. I am grateful for the last thirteen and a half years we had with him. I will always treasure the memories.

"Grief is just love with no place to go." --Jamie Anderson

Goodbyes are not forever

Goodbyes are not the end

They simply mean "We'll miss you,"

Until we meet again

Blog Update

 

Over the years this blog has been many things, but always, it has been a special place to post about our adventures, our kiddos, and our life. As life tends to do, it got busy and this blog was neglected. I wish more than anything that I had kept up with posting. Phone cameras became more sophisticated and I stopped using a separate camera. The number of pictures I took increased, and it became overwhelming to trim our adventures into ten or so pictures. Social media became an easier way to post, and this blog fell by the wayside.

I've thought many times about resuming this blog, and I'd start a post, only to save the draft, where it'll forever sit, unfinished and unpublished. But for now, for me, I am going to write, even if I am the only one who will ever read this.

When I created this blog, I used my children's real names. Then, when it started becoming popular and receiving worldwide attention, I grew worried and changed their names to pseudonyms to protect their privacy. I'll no longer do that with Jeremy, but with my girls, I'll still refer to them by their "nicknames."

I don't know where this blog will go from here, but I have the need to write about my sweet little boy, so for now, I will.

We're Still Here

   (Drafted February 10th, 2024)  I've said this before, but time really does have a way of getting away from me. I always thought that when the kids got older, that I'd somehow have more time. I now laugh at my naiveté. 

    Zuri is fifteen, a black-belt in karate, on the demo team, and in leadership (CIT). She has her learner's permit, and a boy she talks with non-stop.

    River is ten, sassy as ever, my little homebody, and quite the story-teller. Along with creating stories, she loves to read, and can outpace me in reading and comprehension. She's skilled at math, and nearly as outgoing as her sister. Her love of water and swimming is nearly eclipsed by her loathing of hiking. She claims that her "body is not made for hiking." She has left dance behind and taken up karate with her sister, and is currently a blue belt.

    Kai is twelve, and getting big enough that lifting him has become a bit of a struggle. He's full-on hit puberty and sports a little mustache. Developmentally, he has pret
ty much remained the same. He has advanced on some interpersonal communication and is mischievous as ever, but he still lacks neck and trunk control. 

    We have some new devices for Kai to help with his increased weight and size. First off, he will not grow much more, as his growth plates have pretty much closed and in 2023 he had the MAGEC rods taken out and the permanent rods put in. His spine was fused in the same procedure. He also had his salivary glands removed, but that didn't seem to stick, because less than a year later, his drool is nearly what it was pre-surgery. He has a new wheelchair, but it needs some serious adjustments, so we are not as excited about it as we originally thought. Getting an appointment to get it adjusted has been a lesson in patience, though. 

    We've been doing some serious remolding to his room to accommodate a ceiling lift, which goes from his bed into the adjoining bathroom and over the bathtub. We gutted the bathroom, replacing everything except the toilet and the door. There are still some things that we need to finish, but I love the updates. One of these days it will be completely finished.

    Our favorite contraption has been the hiking carrier. Joshua and I were hiking the wind caves near Logan and came across a man and his daughter. He was hauling her in a device that allowed him to go through the rocky, single lane trail, and we were completely in awe. We stopped him, full of questions and learned that he just quit his job to make them full-time. We jumped on it and have become beta testers for Huckleberry Hiking. It has literally changed our lives. We can take Kai on trails and places we never thought we'd be able to go. Spring cannot come fast enough so that we can continue our adventures (Kai doesn't do well in the cold).

    As always, 2023 brought many adventures for our family. We won the lottery and got backcountry passes to hike the Wave (on our first try!). I know people who have tried for over a decade and still not gotten it. We also hiked Angels Landing with the girls--in the snow. That was an adventure. We went to Glacier National Park, spent more time in St. George. I'm planning on detailing those adventures more, so I won't go into too much detail now. 

Calm Amidst the Storm

Covid drive-through testing tent at Riverton Hospital

The only thing constant about life is change.

Three weeks ago on March 1st--before all the insanity of Covid-19 hit the United States, before the shut-downs and social distancing, before the hoarding of toilet paper, water, and hand sanitizer--we took Kai into the ER at Primary Childrens. He had two different infections running through his body. One in his ear and another on the hardware of his MAGEC rods. They kept him at the hospital for a week. 

While everyone was starting to hoard supplies, we were working out schedules to take care of our children and spending most of our time in and out of the hospital. We didn't have time to panic or worry about some virus across the world that we thought would end up being more hype than anything. 

feeling better at the hospital

Friday, March 6th, Kai came home from the hospital. By the following Friday, all schools had cancelled school for a minimum of two weeks. All extracurricular activities cancelled, all church services suspended, and social distancing became a thing. 

Wednesday morning, the 18th, Utah experienced its biggest earthquake since 1992--magnitude 5.7--and the epicenter was about ten miles from our home. Thankfully, the damage was minimal: two small map tubes rolled from my bookshelf, and a package of diapers and a notebook fell off Kai's shelf. We have continued to feel aftershocks throughout the week, including one this very evening.

Yet, through all this upheaval, we remain optimistic. The pandemic is very real and we are doing our part to flatten the curve, but it is also giving us time that we wouldn't otherwise have in our busy lives. We laugh, play, take walks, watch movies, and do online schooling together. My girls are in year-round school and as of Friday, they are officially off-track until April 20th, so thus far they are only missing one week of school instruction.

chatting with friends

The girls have handled all the changes with the adaptability and spunk of youth. They love not having school, and hate not being able to play with friends. They are more worried about another earthquake than the virus. With the awesomeness of modern technology, Zuri spends much of her time video chatting with her friends. She is able to continue her karate through live video streaming through zoom, and for volleyball they have videos prerecorded to help the kids with technique. The girls' dance hasn't done anything yet, but they will put the girls' individual dance choreography online for them to practice in the next week or so. 

Kai even has homework along with school check-ups via email. We need to continue going to the hospital for weekly labs to make sure the infection in his rods is kept at bay. It's all a whole new temporary normal that we're navigating, and it hasn't always gone smoothly, but we're figuring it out as we go. 

With all that's happening right now it's really easy to get caught up in the anxiety of it all, and we are not immune. Most of the time covid-19 is just something in the back of my mind. But in the cracks between moments, fear of what's inevitably coming sets in. I've done the research. I've seen the graphs. I've watched the recordings coming from the overcrowded intensive care units in Italy. I've read the reports of doctors and nurses having to choose who has the most chance of recovering and treating those people, dooming the others because there are too many people and not enough resources.

working on school work

That could be us. It could be a choice between my grandparents or my son. We need to do our part to slow the curve so that our healthcare system is not over capacity. No, it doesn't stop the infection or the number of people who contract it, but it slows the rate so that everyone who needs care can get it. Thousands of lives can be saved if we slow the curve. But it will only work if the majority of people comply, and I know people--good, decent people--who won't, because their family is not "at risk," and they don't see anything wrong with socializing if everyone's "healthy." They don't understand--you can be a carrier for up to two weeks and not have any symptoms. It both infuriates me and breaks my heart. 

Then there is the other part of this that not many people are talking about. The virus is mutating. To my knowledge are at least two different strains, and younger people are starting to get sicker. An otherwise healthy woman in New Orleans died of covid-19, and she wasn't much older than me.

This is real. This is coming. And there is nothing I can do except hunker down and do my part in protecting not only my family, but my friends and neighbors, and all others around me. 

And that is some of the good that I have seen come out of this. I've noticed people have been friendlier--they'll smile and wave as we pass each other (at a respectable distance of course) on my daily walks. We appreciate everyone who has reached out to check on us; friends and family who live both near and far. We are very blessed to live in a community that truly cares, and be surrounded by so many wonderful people. We're all in this together, and I think we feel it. 

There's a sense of peace, and it calms the storm of fear that wants to rage.

I don't know what the coming weeks will look like. In many ways it feels like when Kai was first born--all we could do was manage one day at a time, until we realized a month had passed, then two, then a year. We are all going to need to support one another in the coming months, especially in the aftermath of the virus, as we pick up the pieces of our lives, our economy, and our dreams and start to put it all together again. May we all be a little kinder and lift one another through this.

As for me, I'm going to hold my little ones close and weather the days ahead. 

One at a time.

...And then she was 10, and he was 7...

Life moves too quickly; you blink and the years fly by.

Somehow, I thought as the kids grew older I would have more time, not less.  Yet, here we are, another day, another month into the year.  May is always incredibly busy for us and this year is no exception. Zuri turned ten--TEN--this year, and Kai celebrated turning seven with a smile.

It never ceases to amaze me how long the days seem while I am in the middle of it, but I turn around and years have elapsed. I know it's a common saying and I never really understood it until I look at these kiddos growing up.

They have my heart and I wouldn't trade those long days for anything.