Without the Birthday Boy…

Ten years ago, at this moment, I was in labor. I was 4 hours and 35 minutes away from bringing my beautiful son into this world. I was rocking permanent dents into the carpet of my bedroom with every contraction.. trying to stay quiet in my new rocking chair so my family could rest, elated that my baby boy would soon be snuggling in my arms. No matter how many crazy worries went through my head, I never imagined I would be here tonight without my son.

Josh would be SO happy to be celebrating double digits. And we would be happy to do anything he wanted for his birthday. The January before he died, we started the tradition of decorating the dining room with birthday streamers and a banner and balloons and really going all out in the simple ways that make a kid feel special. I could tell he was a tiny bit jealous of his little sister that day, and I was so looking forward to spoiling him in that same way for his birthday 6 1/2 months later. We never got the chance. We spent the days leading up to his 9th birthday trying to wrap our heads around the fact that our son would not be there to celebrate. Our little boy was dead. Forever 8 years old.

We spent his last few days making promises to him- ways we would celebrate his birthday and spoil him when he woke up. Not “if.” We would help him build the treehouse of his dreams. We would even call Pete from Treehouse Masters if he wanted. I would let him skip the next year of school if he wanted, and just spend time doing everything he had ever wanted to do. We meant every word.

On August 3, 2015 at 5:35 AM, Joshua Quentin Kaye will be 10 years old, but he won’t be here to celebrate, to hug, to spoil. I will do my best to hug and love and spoil whoever I am with- all day. I hope you will do the same. #ThisIsForJosh

Josh at NEWC fence JKF Stamp

 

 

 

 

Marking A Year…

We lost Joshy just 27 days before his 9th birthday. Those were the some of the saddest days of the saddest year of our lives, but so much love was shown to us. Losing a child forces lessons on parents, siblings, and friends. We realize that life is short and tomorrow is not guaranteed. The little moments with our children matter more than anything. And telling someone you love them shouldn’t wait!

As we mark our first whole year without him, we’d like these next few weeks to be filled with love. Tomorrow, 7/7 through Josh’s birthday, 8/3, we’d love it if you’d join us in spreading joy and love by sharing how you stay present in the moment, share your love, or spread kindness, using the hashtag #ThisIsForJosh on social media.

Joshy Tying Little A's Shoe

Joshy Tying Little A’s Shoe ❤️

Almost a Year…

It’s June already. Soon enough, I’ll be marking the one year anniversary of the day he got sick. The day we went to the ER. The day he was transferred to ICU. The day he coded. The day we learned he would never come home with us again. The day we left the hospital without our boy.

Joshua Quentin Kaye was born on August 3, 2005. 10 days after his due date, after only 8 hours of labor. It was the perfect-story labor; a little funny and completely sweet. After several years of infertility, with a big sister begging for a little brother, it’s possible there had never been a baby born who was more wanted and planned for than him. He weighed in at 8 pounds 3 ounces, which was a shock, because he was so skinny- and then they stretched him out. He measured 22 1/2 inches long. He was an adorable string bean. I remember being stunned when he lifted his head off of my husband’s shoulder to look around the room as Andy carried him to me. He was perfect. Much lighter than I had expected- blonde hair and blue eyes?!- but gorgeous. His big sister was so happy, proud, in love. She beamed with joy as she held him. And our family was perfect.

Our boy was engaging and funny from the very beginning. His eyes like gorgeous pools, reflecting love back at everyone who saw him. He loved to meet people, but was happiest at home with his family- especially his doting sister.

Baby Josh, before his eyes turned green.

Baby Josh, before his eyes turned green.

He did everything early. He stacked a set of wooden blocks when he was 5 months old. He pulled himself to standing at 6 months and was climbing stairs a few weeks later. We had to be ready for anything! And he loved to laugh!

When Josh became a big brother at 3 1/2, he was concerned and a little jealous. But, he spent his mornings building giant towers for his “Baby A” and playing songs for her on his harmonica.

We moved to a new house a few months later and when we got new furniture for the living room, our sweet boy mourned the couch he had found comfort on- while nursing, snuggling, napping, and playing- for days and weeks. He was passionate, loyal, sentimental, and connected strongly to things he cared about. Even couches.

When Josh was 5, doctors discovered a Chiari malformation. Basically, his skull was a little to snug for his brain and they needed to perform a major surgery, cutting through all the muscles and bone at the base of his skull, to alleviate pressure on his brain stem and spinal cord. He sat himself up in bed 4 hours after his surgery and was walking around the hospital the next morning. The Chief of Neurosurgery was astonished. This child knew no limits. He didn’t know how to let things hold him back.

Joshua’s friends were happy to have him back at school. He was the planner of games, the peacemaker among arguing friends. And, as his friends have told us over the last 11 months, the boy who stuck up for his friends, stopped others from teasing, listened to what mattered and showed love- always.

He was not perfect at home. He pushed and he argued and he refused to do homework on anyone’s timeline but his own. He got mad when his big sis needed quiet time do focus on school work and wasn’t always kind to his little sister when she wanted his attention. But he made us laugh. He did the cutest little tushy shake you could ever imagine and he would sing along to whatever songs he and his sisters had on repeat with his sweet, sincere voice.

Our silly boy!

Our silly boy!

He was an animal and nature lover. I think a wild lion would have laid down and rolled over for a tummy rub if Josh asked him to. He would spend hours with his friends or little sister, looking for cool bugs or standing still so a dragonfly or butterfly could land on him. He loved to go for long walks and just be out in nature.

When Josh was 6 1/2, he heard about mass dolphin strandings on the Cape and he asked if we could go and help. It was winter and the beach where the dolphins needed help was 2 hours away. He insisted that we find a way to help, so we called IFAW to find out what they needed most and then planned a fundraiser. Joshy spent hours cutting out pictures of dolphins and making a poster to bring to school. He told all of his friends and teachers and raised over $1000 for IFAW. He was so proud when he received a thank you note from, then president of IFAW, Fred O’Regan.

Joshua loved to build. He used to get so frustrated when I said no to buying actual bricks and mortar so he could “build stuff” in the back yard. He settled for Minecraft and hand-drawing plans for furniture, buildings and tree-houses. When I told him about Habitat for Humanity one night, he couldn’t fall asleep. The thought that he might be able to help build a real house for someone who needed one was too exciting!

He never felt like he was too young to do anything, but he was definitely too young to die.

Joshy squishy face JKF stamp

 

 

 

 

 

 

 

 

 

 

Mother’s Day- After Losing My Son

I’m sitting here trying not to fall apart. Friends and family members have been sending sweet messages since last night. It has been a busy week, with dress rehearsal and Little A’s dance recital, so I kept my mind on those things as much as possible. I cried my way through her recital. So happy and filled with love watching her dance. And her friends- and Joshy’s friends. And so incredibly sad that he was not there to see. He loved music and dance and really enjoyed the recitals.

My mother-in-law came to stay with us this weekend to be here for A’s recital. I made her change her plans so she would leave today. I don’t want to be with anyone today.

My mother called this morning. I let her go to voicemail. She just called again, so I answered and regretted it instantly. “Happy Mother’s Day” she said, trying extra hard to sound cheerful. “Thanks. I’m not really doing Mother’s Day.” She paused and replied with “Well, you could at least say Happy Mother’s Day to your own mother” in a voice that I know was trying to cheer me up and shake me out of my misery. I think she thinks I am sitting alone in a dark room, ignoring my other children. “You still have two girls…” she started, but I told her I didn’t feel like talking. I can tell she feels badly. And maybe I even hurt her feelings, but I can’t help it.  Little A immediately said “Why don’t you feel like talking to your mom? Is it because you’re missing Joshy?” Jesus, this kid gets it. She does not miss a thing- ever.

Joshua Laying on Grass JQK

Today is my tenth Mother’s Day as Joshua’s mother and he is not here to make me a beautiful card, do the silly dances he was famous for, or fight with his sisters, forcing me to say “Guys, it’s Mother’s Day- try to get along for me.”

I have lived 10 months and 3 days without my boy. Rarely has a moment passed that I haven’t been actively thinking of him. When I watch the girls together, I think “oh, how sweet” and half a second later “Joshy should be there, pulling pranks or reading stories.”

Life after the death of your child is unbearable at times. I could end this post with a positive It Will Get Better message, but I’m not feeling that way right now and I know there are lots of other moms missing their babies today. I’m thinking of you. I’m crying today and trying to smile a few times for my husband and my girls, but mostly- I’m missing my boy.

Taking Down the Tree

Josh's ornament
We’re taking down the tree.

The tree that I delayed putting up. That A practically had to beg for this year. That we cried, decorating.

That Josh would have loved and sat near and gazed at with such joy.

The first tree without him.

We have lived through our first holiday season without our boy. Should I be relieved?

I’m not.

I feel like it would be better, easier, if we had melted down. Exploded. Imploded. If the world had just stopped.

It hurts more, somehow, knowing that we can go on without him.

Trigger Warnings & Facebook’s Year in Review

About a year ago, I read an article about high school and college students wanting trigger warnings for material on the syllabus. I was irritated and thought it was unreasonable. I understood that if someone had PTSD or had been raped, that certain material may trigger some awful memories and emotions. At the same time, I assumed that these students participate in the real world to some degree, if they are able to sit in a classroom and do homework. If that’s the case, these students are probably watching TV and skimming Facebook timelines, where they will see movie trailers, commercials, headlines and video clips that may cause similar distress. My conclusion was that if schools agreed to label the reading list with trigger warnings, it would become a never ending list. The best literature is often packed with the hardest things in life. Reading some of the things might be hard, but working through the book may be good therapy. Or not. Student’s choice at that point.

This past week, as each Facebook friend’s Year in Review popped up, I felt a little kick to my gut every time I read the words “It’s been a great year. Thanks for being a part of it!” In fact, the first time it popped up, I felt a little hurt- how could someone close to me say that it had been a great year? My son died on July 7 after a nightmarish 13 day battle with E. coli. It was sudden and shocking. We watched our child suffer in ways no person ever should and we witnessed things that replay in our minds every day, like nightmares on a movie screen as we try to live without him.

Trigger Warning
So, when I read a Huffington Post article yesterday, saying that Facebook had apologized to a dad who lost his daughter this year, I was torn. I feel for the guy. I know how jarring it was to see the automated prompt, with my boy’s smiling face in the middle and confetti all around. I knew what the last 6 months of my year have looked like and I didn’t want a replay. But, I did not have to look! I think the app was a great idea- it’s fun for most people. It wasn’t fun for me. It wasn’t fun to see everyone’s happy year end while mine sucks. But, that is my life right now. I don’t expect a trigger warning on Facebook, or on the radio before an ad for Whole Foods, where we bought the ground beef that made Joshy sick. I don’t expect companies like Folger’s to change their emotional commercials so that they don’t highlight, for me, the fact that I will never wake up at my adult son’s home and tell his children stories of his childhood. I can’t expect to avoid seeing adorable, blonde boys playing with sisters and friends, searching for bugs, walking their dogs. I shouldn’t expect to avoid the feelings that follow the most traumatic events and the biggest loss of my life.

Sometimes, life is hard. Sometimes it sucks and is unfair. Sometimes awful, unthinkable things happen. We can not expect the world to think of every terrible possibility and walk on eggshells to avoid triggering our nightmares. We must do the best we can to work through and live on, hopefully remembering the happy times more often than the worst.

Writing From Prompts (NaBloPoMo Day 9)

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I’m having a really hard time with these December NaBloPoMo prompts. It’s not them; it’s me. It’s this time of year. It’s my life, this season, this topic- Joy.

I am trying. I’m trying to live. To be. Wife, mommy, boss, colleague, friend. Present. I’m trying to enjoy, while remembering; while missing. Constantly.
I’m trying not to cry when I hear Christmas music. Any music. To remember when it made me happy and go there instead. To dance and sing. To hug and smile. To write.

But, the majority of the December NaBloPoMo prompts just aren’t working for me. I’ll keep writing every day and I’ll try to publish my posts daily, but I’m trying not to be too hard on myself when I either don’t find/take the time or (more often) just can’t bring myself to finish or share what I write.

-M ❤

Life is full of firsts….

Josh's RainbowFirsts are so much fun when you have a baby. First smile, first time rolling over, first belly laugh, first steps, first day of pre-school.

We keep records of these. They go down in our pediatricians files to make sure kids are on the right track. Now with social media, we share them with friends and family, far and wide. Sometimes, we even prepare, searching Pinterest for creative signs for kids to hold- think first lost tooth, first day of 3rd grade- so cute!

Sometimes, firsts are not so great. On July 7, 2014 my very dear friend, Melissa Kaye, lost her 8 year old son, Josh, after a 13 day fight against E-Coli. Since then, she has experienced a whole new series of firsts. Heart-wrenching, can’t breathe firsts. He died in July, his birthday was in August, his first day of fourth grade would have been in September, first Halloween without Josh in October, first Thanksgiving in November, and the upcoming holiday season. Every day without him is an unimaginable first.

Our children were friends and went to the same school, where they arranged for a grief counselor come and speak. She was wonderful. She spoke about the different ways our children may grieve, and what we should look for and how to react. It helped.

Something the grief counselor said that night stuck with me. She mentioned that a lot of parents lose friends after losing a child. Their friends are usually parents who have children the same age as the child who died. The parents of the living child often have survivor’s guilt and that is beyond uncomfortable. But to lose your friends in addition to your child is just not right.

I can see why this happens. It is definitely easier to avoid situations that make you feel uncomfortable than to face them. This is a first for me. To witness my close friend’s loss, the loss of a child I knew well, but I have faced those feelings head on with my friend, her husband and her daughters. I am there for them regardless of how heart-wrenching life can be for them with all of these new firsts.

The first few months after Josh passed, I felt as though I didn’t deserve to be happy. Why should I get to enjoy my children when this wonderful, loving family cannot enjoy their son? Everything I did, I felt guilty about. It is such a desperately low, dark, and painful place to be. The loss of a child is just unthinkable- unacceptable. But time goes on and the days keep on coming even if you aren’t ready for them. I wanted to rewind time. These raw, emotional days happened over the summer, when I was surrounded by my own four children all of the time. I have never been as grateful for them as I was this past summer. I felt as if I was living in slow motion and really started to see life as it should be. I spent the extra time reading bed time stories. I paid attention to sunsets and rainbows, and really listened. I allowed myself to cry in front of my children and accepted hugs.

I don’t ever want to experience anything like this again. However, I have been shown just how beautiful life can be, even in the midst of the ugliest thing I have ever experienced. I cherish each and every moment I get with my children, even if I am yelling at them (which still happens more frequently than I care to admit). I take stock of all the good in my life a few times per day now. I count my blessings and the Kaye family is one of them. I am a changed woman, for the better. Josh’s death is still unthinkable for me; I don’t understand it. I do understand that the small bullshit things that used to bother me just don’t matter anymore. It may sound cliche to tell you to try and be more present with your life and give hugs when you can, but I have to say it anyway.

I’m Jealous of Your Noisy, Messy Days

There are a lot of moms and dads on Facebook, posting updates that chronicle their parental struggles- kids misbehaving, making too much noise or mess, fighting with siblings, refusing to get ready for school.

My house is relatively quiet. There are no noisy arguments or fighting between siblings. On school mornings, I don’t feel like I’m pulled in 5 directions. I don’t have to nag at everyone to get ready. And if I forgot to take the bento container out of A’s lunchbox last night, no stress- I have an extra in the cabinet.

Our bedtime routine goes smoothly-no chasing kids in different directions or playing musical beds to settle kids down. My husband and I have plenty of time to watch a show or read a book before bed.

Right now, you might be jealous, or think I’m a braggy mom- but really I’M jealous.

I miss the sound of sibling arguments. I would give anything for a night of being driven crazy, returning my son to his bed every ten minutes, not getting to watch that show my husband DVR’d to watch with me.

Struggling to get the kids ready, juggling schedules and different moods, 3 different meals for dinner, doctor’s appointments, dirty socks left strewn around the house, 10 thousand questions and 20 thousand strong opinions every single day.

I miss being nagged for screen time and begged to check out his Minecraft world. Reading “just one more chapter” before bed. And I hate that there is an extra of everything, because my son isn’t here to put those things to use.

When your children are healthy, and you can assume they will be driving you crazy for the rest of your life, it is normal to be frustrated and irritated by the things that we, as parents, find challenging.

I urge you, though- take a step back every now and then and think about how much you will miss those moments when your child is grown, or what you might have had more patience for if you looked back from my perspective.

Enjoy the moments with your children. Try not to take things too seriously. Remember that things can change in an instant. Love really is what is important in life. Surround yourself and your family with love.

M

Our sweet, crazy boy

Our sweet, crazy boy

*Read more about Joshua’s life & legacy and how we’re working through life without him here

Seeing the Good, Even through Loss

When I was young, I was told and I believed that “everything happens for a reason.”

That is bullshit. Things do not happen for a reason. We assign meaning to things to help make sense of them. And the truth is, there can be good that comes after pretty much everything. If you’re a silver linings kind of person.

I am. I am the ultimate optimist, guilty of always looking for and seeing the good in people.

My 8 year old son died on July 7, just weeks shy of the 9th birthday he was so excited for, after a 13 day illness that everyone thought he would walk away from.

But I’m looking for the good. Not the why- there is not any good reason in the universe for a sweet life to be cut short. But there are and will be good things to notice.

The outpouring of love and support (we knew it was there, but it was powerful nonetheless.)

The media focusing on the important facts- Josh was amazing, he should be remembered.

Joshua’s friends and school-mates and other children in the community taking action to show support and help fund causes he cared about.

Friends, family and strangers reaching out and speaking from their hearts, even when it goes against their personality to get so personal.

And most importantly- the parents who hear Joshua’s story. They are slowing down, taking more time with their children, loving them just as they are in that moment, breathing them in and appreciating them.

There is no good reason for Joshua to be gone. But there is good all around us.

Photo credit: Jonathan Kaye

Photo credit: Jonathan Kaye