Wrestling My Brick

Had a therapy session today and still felt like writing. Like I need to get the thoughts out of my head and process more. I’ve been wrestling my brick a lot lately. Wrestling with the weight of grief and unnecessary worry. The worry that makes me overthink and over analyze every. single. thing. Tony, our 17 year old son, was my first kiddo to have a tonsillectomy, adenoidectomy, and tubes put in. He’s actually been in surgery 4 times for his ears and once for his kidneys. All before Caleb died.

After Caleb died, we transferred Tony’s ENT care to the children’s hospital where Caleb became an organ donor. We’ve loved his care team there and I have faith in them, in my own sort of PTSD way. Tony almost gets annoyed with my questioning everything and explaining to every new nurse or practitioner we see that I have reasons for being so thorough and seemingly paranoid. Conversations I no longer feel awkward having because I buried my son and don’t have the energy to worry about that fact making someone else feel awkward.

This all brings us to tomorrow. Tomorrow, Tony goes in to have what will hopefully be his final ear surgery and allow the missing half of one eardrum to regrow. It’s a lot to take in. It’s the first time I’m trusting an ENT (or anyone) to cut one of my children in 7.5 years. I’ve had all the conversations with his care team. I’ve received all the reassurances. And I still can’t drop the brick. The one that sits on my chest. The one that, even though my head and heart honestly feel okay about tomorrow, lives in some fight or flight response portion of my very core that no amount of love, reassurance, or knowledge can shake.

So, to all of you who have experienced trauma, who know the brick. Who may feel too tired, awkward, alone, or whatever your reason for not sharing the load is; know this. You are not alone. When the brick reappears months or years after trauma, it’s not just you. When irrational overtakes rational, it’s not just you. And I suppose I needed that reminder myself right now.

Take care of yourself. Take care of each other.

-Jenelle

The Sunset is Beautiful

I must admit that I was shocked today when thoughts began flowing and I felt the need to blog them. That hasn’t happened in ages. I’ve largely been absent from not just this blog, but all social media. Blame life, schedules, the pandemic. I simply retreated to my family and generally lost the desire to put much of anything out there. I’d occasionally throw the extended family a picture or post on the Facetube, but I grew tired of the world of digital interaction, likes, and fleeting exchanges. I have been content with my little herd and, honestly, have loved being free of the time blackhole that social media can be. Anyway, I digress.

My children and husband have been filling my heart. We have been healing each other. Covid. Man, what a b***h this pandemic has been for our family and most of the world. Outside of illness and death that has ravaged our immediate and extended family, the PTSD/grief triggers have been real, heavy, profound, and not infrequent. It’s been a bear to mother through. It’s resembled that first year after Caleb’s death in many ways. Upended lives and a loss of normalcy. We’re finally starting down the other side of this mountain. I think. Don’t jinx it!

Yet, there has been so much beauty. It’s no secret that having a baby after Caleb died was terrifying. My prior blog posts about it don’t even scratch the surface. I kid you not, our baby girl is a prophetically miraculous source of wisdom and love. Her declarations of love and wisdom know no limits.

She has never met a living thing she doesn’t long to be best friends with and protect, especially toads, insects, dogs, cats, the random deer, every classmate, and the lady she gleefully skipped up to in the grocery store this last week to make it known that Alice thought her eyeshadow was “really pretty”. The woman (who looked about my mother’s age and did her makeup in a similar way) looked on the verge of tears as she repeatedly thanked my 4 year old for saying the nicest thing anyone has ever said to her. Alice hugged my leg and smiled bashfully at the returned compliment of being such a nice girl with a beautiful bow.

As my 11 year old dotingly had a mini spa day with Alice this weekend while I prepped for a church Christmas party (big sis props!), I overheard a face masked Alice declare to her sis that “this is the life” as they lounged in the toy room and made sure to tell her sister that she’s “just the best”.

I constantly find random video messages on my phone from Alice sneaking off with it to record some message telling me she loves me or serenading me some adorable made up song about whatever is on her mind.

She’ll gently place her hand on my arm and whisper, “I wish Caleb wasn’t in heaven so I could play with him again.” I’ll ask her why she said again and she’ll tell me that she played with him before, in heaven. Then, she’ll cup my cheek, wipe the inevitable tear, and we’ll smile together as our foreheads meet in a wise-beyond-her-years moment of understanding.

She can be a loud, rowdy, will not go to sleep little monster. But, she’s our monster. And she reminds us how to live and love every day, much like her big brother did. I have no idea what I did to deserve to be entrusted with 7 amazing, souls. They try me and push me in ways I never thought possible. I often feel so broken and unworthy. I am such a work in process and God knows I screw up plenty. Yet, they show me unwavering love, understanding, compassion, and a fighting spirit.

My herd, my heart.

So, as we all fly through this crazy, busy holiday season and my little herd moves through our hell week of reminders leading up to Caleb’s death date and birthday, I leave you with some 4 year old wisdom. While driving in the car recently, my 11 year old moaned, “It’s only 4:28 and the sun is already setting!”.

“But, the sunset is beautiful!”, Alice immediately replied. And we all sat in silent awe of it’s beauty for a moment before excitedly beginning a conversation about all the various colors.

Try to remember, there’s beauty in everything. Alice has reminded me of that.

-Jenelle

Milestone Madness

It’s been two months today since we celebrated Caleb’s 8th birthday.

Once upon a time, on a family blog I used to keep, that would have been how this post started. Instead, references to Bub’s birthday will always include “what would have been his __ birthday” and that makes my heart hurt. It sucks even more that my kiddos can’t celebrate a birthday without thinking of him and how old he’d be in relation to their age. Some of them still struggle at the thought of getting older while he isn’t. One of those milestone struggles we deal with and get through.

The milestones are what’s been causing me to struggle lately. Somewhere, in the recesses of my mind, I’ve been keenly aware of this year. Yet, I haven’t really let it register. It still hasn’t, but it’s starting to.

This is the year that our baby girl will become older than her big brother ever was.

On the 26th of this month, we will celebrate my Snug’s 3rd birthday. On that day, she will have officially been alive one day longer than Bub.

And I’m terrified.

What if something happens to her?

What if something happens to me?

Do we have a party this weekend? But if something happens, people will say she was 3 when she wasn’t just because we had a party.

Do we wait until the weekend after? But if something happens, then again I have presents left ungifted and my fear wins.

What if I can’t get my PTSD bull in check?

What if we don’t get there?

What if we do?

My mind won’t turn off. I’ve been constantly battling to keep rational thought at the forefront of my mind. I snuggled her this morning and breathed in each coarse curl on her sweaty head like it could be the last time and rational told me I was being ridiculous, but experience tells me I’m not because we never know what will happen.

I’ve had to check myself the last few days. I had a wakeup call over the weekend that I can’t make everyone happy and I shouldn’t try because it’s okay to say no sometimes. We should say no sometimes. I’ve been in overdrive with the “it’s not a big deal” thought process in trying to please those around me. I’ve been trying to be all the things, in all the ways, for everyone. When I failed, I fell apart. I’ve been an absolute wreck. Everything makes me cry. Everything makes me worry. Sleeping and eating have eluded me.

Then, in cry texting it out with a friend, it finally all clicked.

My PTSD has been rearing it’s ugly head in a big way lately (see above thought questions). I needed to be happy, understanding, agreeable, kind, willing, patient, and giving to fulfill everyone’s wants and needs because I’ll never be able to bring Bub back, so I’ve been trying to do everything else. I needed to be heard, understood, and validated because I didn’t when my son died.

And now his sister is almost 3 and I again have presents stashed away and every time I see them or the closet they’re hidden in or the date or her or the stores I bought them at or open my eyes in the morning or close them at night my breath catches for a moment at the thought that we might not get there.

Or we might.

It’s all like waiting for her to be born after Caleb’s death and the subsequent miscarriage all over again, but on steroids. Thanks to therapy tools, listening ears, loving kids, and the most patient, understanding, and forgiving husband ever, I’m finally reeling it in.

Tonight, I left the dishes half done to watch a movie with my boys when asked. I scolded my kiddo who teased a sibling and reminded her to always be someone who laughs with people and not at them. I pondered more my daily counsel to my kids to be safe and make good choices. I laughed with my toddler as we played chase with my love. I tended my flu stricken teen. I listened to and counseled my oldest over struggles with friends. I smiled as my love ran the bedtime routine with baby Snug while I tucked in the girls upstairs.

And my breath only caught a little. It caught at the beauty of it all, of them all. I remembered what it feels like to have faith and live life intentionally. To intentionally be present and put my faith and trust in God. He carried me through hell before, I just needed to remember he’s still walking beside me now.

-Jenelle

What I Didn’t Expect

I’ve not had much to say for quite sometime. I know that. This little old blog has been mostly abandoned. I wasn’t sure if anyone still cared to read. Life kept moving and my thoughts and insights didn’t seem to. I have been stuck, feeling like I had nothing new or profound to say.

Then, as I scrubbed my kitchen counters and loaded the dishwasher this morning after getting six kids off to school (baby A is in preschool and I’m only freaking out a little bit), I had a flood of thoughts. I’ve been having a flood of thoughts for a few weeks. I simply decided to do something besides talk my husband’s ear off late at night this time.

Disclaimer: This is not a blog post about everyone in every circumstance. It doesn’t even apply to everyone, every friend in my own life. If you don’t identify with this in anyway, good for you. If this doesn’t resemble your experience, yay! If even a little bit of it rings true, think on it and let’s all do better.

Nearly five years in on this path and it still baffles me how I wasn’t prepared. I didn’t expect it. I know I was given a few warnings from those more wise about the aftermath of death that shirks the natural order of life than myself. I have been pondering it all more lately. The isolation and loss of friends, that is.

It’s a recurring theme I’ve run into as I’ve met and talked with dozens of grieving parents, siblings, and spouses. No matter the circumstances surrounding the death, everyone I’ve spoken to who experiences death out of the natural order, experiences a subsequent loss of friends on some level. Not all, not even most in the majority of cases, but some. Since my last speaking engagement at the University of Iowa in the Death and Dying class, I’ve been pondering that more and more.

I didn’t realize that the loss of my son’s life would create the loss of friendship it has. I didn’t realize that his death would be taken so hard by others that they couldn’t be around me anymore. That I would come to serve as a physical reminder that children die, there isn’t a set order to life and death, and people are changed by that occurrence. That how his death would change me is something some couldn’t be there for.

Mostly, I didn’t realize that something being for my own good following his death would be used as the excuse for others pulling away because of their own discomfort.

“I didn’t think you’d feel up to coming.”

“I thought it might be too hard for you.”

“I figured it’d be too much of a reminder.”

“I didn’t want to bother you.”

While all well meaning, good-intentioned phrases, I can’t help but feel they are placating sentences to excuse societies own discomfort with death and anything/one that reminds us of death. When we remove the free agency to socialize from those who have experienced tremendous loss through death, we isolate the grieving. We leave them with a proverbial “G” emblazoned on their chests.

I have said it before and I’ll say it again. Grief stemming from the death of a child does not end in this life. Grief for many people no matter the death does not end. We figure out a new normal and keep living. Keep going. Keep taking deep breaths and figuring life out. We wake up each morning and figure out how to tackle the tasks in front of us.

Here’s the kicker.

It’s. The. Same. Thing. Everyone. Does.

Extend the invite, make the call, stop by, send the card, be there. If someone doesn’t feel up to it, they can decide. This is especially important through the holidays. We, as a society, need to stop making excuses to essentially abandon the grieving and assuage our own guilt in doing so.

-Jenelle

 

The Defense Wall Called Blame: An Open Letter To Morgan and Bode Miller

I know you blame yourselves.

We (the collective ‘we’ of parents who have buried children) always do.

I honestly hate that you’re included in this we. I hate even more that you’re in the subset that encompasses those parents who let out those uncontrollable screams into pillows in the wee morning hours because some crazy, freak accident/occurrence ripped a gaping hole in your heart that will never fully heal.

Child death goes against the natural order of life. It causes us to throw up all of our mental, emotional, and even physical defenses as we try to explain it. If there’s an explanation, then that means we can prevent it from happening because it has an identifiable cause.

My son died. Three and a half years ago, I signed paperwork one morning for a tonsillectomy/adnoidectomy and 16 hours later I was in the fetal position outside an operating room making that sound that only comes from a parent as they plead for the life of their child. The pleading words to trade my life for his couldn’t come fast or frequent enough.

It was the week before his third birthday and two weeks before Christmas. His presents were bought. His Christmas Eve pajamas were ready to go. He’d been with me when I bought them for all of my lovies and I’d let him pick them out.

Caleb was my shadow, my constant companion with a daredevil streak. He was the perfect example of those boy mom jokes about quiet equaling trouble. He lived life fully and fearlessly. Then, a post op bleed, full cardio-pulmonary arrest in the OR, and 5 days in the PICU ended with him dying the day before his birthday and him being an organ, eye, and tissue donor on his birthday. That last part has been the tiny piece I’ve held onto when the waves of grief become tidal.

The biggest enemy we child loss parents face is the should(n’t) have, the what if. Some recess of our clear thinking minds occasionally tries to be reasonable, but through grief blurred eyes that taint our perception we blame ourselves, others, God, or all of the above. As our former, freer selves pour out of our newly ripped heaven hole never to be seen again, our minds constantly sound the inadequate, inept, questioning, regret filled bell.

I shouldn’t have gone to the bathroom until nap time.

I should have double checked the lock.

I shouldn’t have let go of his hand.

I shouldn’t have been so quick to dismiss that leg cramp.

I should have taken better care of myself when I was pregnant.

I should have made her stay inside.

I shouldn’t have stopped to chat.

I should have made sure the baby gate latched.

I should have taken him to the doctor sooner.

I should have fought harder.

I shouldn’t have left the room, even for a minute.

I should have triple checked.

I should have done better.

I should have listened to my gut.

I should have been perfect.

I shouldn’t have signed those papers.

It’s my fault.

As if it weren’t bad enough to bury a child and live with the guilt of not saving them, we are surrounded by the ease of the internet. We have a general public full of perfect people who can be all too quick to point out our faults as they are perceived through the naive, rose colored glasses of “that would never happen to me.” I firmly believe this comes from that self defense place within each of us.

It all goes back to blame, to an explanation. Some identified misstep on the part of a child loss parent is a misstep that can be avoided, thereby protecting every other child from facing the same fate. I’ve even heard pediatric cancer parents blamed for not seeking the most aggressive, experimental treatment. There are no boundaries to the finger pointing.

I know this is the absolute, most difficult experience you will ever face. There is no wound deeper, no heartache greater than that which comes from burying your child. There are no rules on how to properly handle it, no guidelines for erasing the nightmarish images that prevent sleep. There is only trying to adapt to an entirely new normal. A normal with a darker reality woven into it.

I have often used the fork in the road metaphor since I buried my corn silk haired Bubba. When he died, myself and my family had a choice to make. We were faced with a fork in the road. I could walk a dark path or a well lit one.

The sadness, darkness, and anger can be, and regularly are, all consuming. The dark path is one so easy to gravitate towards. The well lit one, the one with hope and purpose, is so much harder. At first, steps were taken on that well lit path because I had other children to mother. Really, it was a well lit fog that I sort of stumbled down. They’d just buried a brother, I couldn’t let them lose their mother.

With time, I’ve learned the very best way to still honor and mother Caleb is to live on that well lit path and be stronger from the horror I’ve lived through. I’ve also learned it’s important to take trips to the darkness, to let out the wretched thoughts and feelings that would drag me down to depths unknown. I then pick myself up (and let others help me stand when needed) and keep on living, keep loving. I’ve even started to learn to forgive myself a bit. Not fully there yet, but the guilt doesn’t make it so hard to breath anymore.

Does this mean time heals? Hell no. That’s total bs. Anyone who tells you that this is a wound that heals has never experienced it. This is a wound that becomes a very thin scar that will rip open, although less often with time. It is a transformative experience that reshapes reality and your sense of normalcy. I only pray that you know you are not alone and my heart aches with yours.

So, if it’s ever 3am and you can’t sleep or the heaving sobs feel like they’ll never stop or you’re trying to stop yourself from physically harming the 74th person who reminded you that at least you have other children (as if they’re interchangeable or replaceable) or that you should really pay closer attention, shoot me an email. Find me on FB and shoot me a DM. Reach out and I’ll give you my cell number. Because I get it and sometimes you just need someone else who gets it, too.

With heartfelt love and empathy,

Jenelle

 

 

Time

It’s been too long, I know. I’ll try to explain that sometime, but not now.

Right now it’s 3 years and I need to clear my thoughts a bit. I need room to breath and I don’t really have that right now. The 17th is his death date, but tonight will always be the night it happened for me.

I’ve stayed busy all day. Really busy. I only looked at the clock as I zipped around the kitchen making dinner to ensure we ate before Tony’s band concert. I didn’t want to have time to think. I wanted to convince myself that 3 years was enough time to not still have the wind knocked out of me.

I was wrong.

We gathered the kids for family song and prayer before bed tonight and I caught a glimpse of the clock as the bedtime protests began.

8:21

It was all just beginning. Brig was just buckling him in his car seat after he coughed in his sleep and we saw fresh blood.

8:55

We’re both betting strapped to the gurney for transfer across town to get to the OR asap to control his post op bleed.

9:20

We’re waiting in the second ER, reviewing everything with doctors and nurses.

There always seems to be a part of my mind replaying that night at any given time, but today it’s always worse. It’s not as noticeable on a daily basis as it once was, but it’s still there.  I once had someone ask me about that night and when I was through sharing he said, “Wow! I think I get it a little bit now. I’ve heard your story, but I just realized as I watched and listened to you now. You weren’t talking to me. You were narrating for me. I could see in your eyes that everything was playing out again in your mind and it was like you were right back there, living it all over again. You don’t just recall snippets or pieces. The entire night plays out moment by moment in your memory, doesn’t it?”.

Yes. Yes it does.

In an hour, Caleb will be in full cardiac arrest and will never wake up again. I held him against my chest, stroked his hair, put my cheek to his abnormally cool head, and promised him everything would be okay. I promised him things would get fixed. I sang him his favorite lullabies. I stared into those big blues until they didn’t open anymore. I heard his code called over the intercom and saw the flurry of activity as we followed the house manager to the OR hallway.

And there I sat, screamed, cried, prayed, pleaded, and bargained while he died behind the doors.

The next 5 days weren’t days, but that stretch where time stood still. And then I was making funeral arrangements, getting information about his organ recipients, and telling my children that their baby brother wasn’t coming home with us.

3 years.

He never turned 3. It’s so strange to think that this month marks him being dead longer than he lived. It seems like ages ago and yesterday all at the same time.

Sharon Eubank is a leader within my church and she shared this on Facebook today:

There is a verse in Isaiah that says part of the mission of the Messiah is “to appoint unto them that mourn in Zion, to give unto them beauty for ashes, the oil of joy for mourning.”

Although we mourn our losses, especially at Christmas, the heart of the work of Jesus Christ is to give us beauty for ashes, to build up the waste places. This is also an important and beautiful part of the spirit of Christmas. When our hearts are too heavy to participate in the lights and toys and music, we can offer our ashes to the Lord Jesus Christ, and He accepts that gift too.

 

Today, I hugged my lovies a little longer. I snuggled bitty girl a little more. The burning in my chest has been a little bit hotter, but I kept breathing, I kept living. My ability to adapt and adjust got a little bit stronger.

Why?

Because Caleb Is Alive In Me and so is Jesus Christ.

-Forever Caleb’s Mom, Jenelle

I Saved Him

We’ve plowed through the last few months doing so many things; prepping for the holiday season and pulling off an incredible toy and book drive that shattered all of our goals thanks to the help and support of our new and amazing community. At times, I’ve had to consciously pause, allow myself to feel, and take steps to try to ensure there won’t be a major January crash this time around. There have been difficult times for my little herd, too. Moving through the holidays, Caleb’s death date, and birthday always brings up raw emotions. We had a couple of lovies that really struggled with angry, grumpy feelings this year. We had to be mindful of where those feelings were coming from and make sure we pulled them aside to give them a chance to let the deep stuff out, let the tears flow.

In the midst of it all, I’m continuing to wrestle with that emotional struggle of feeling the heart connection with our new itty bitty babe. I’m so very excited and my head is fully aware of the squirmy one doing a gymnastics routine inside me. It’s still hard to fully break down the protective walls. The ones that fly up at the thought of anything going wrong, at the risk every minute of every day that life and a happy ending aren’t a guarantee. I learned the hard way that my intuition, my pleas, my instinct, my actions aren’t always enough.

And that terrifies me.

I’ve felt fairly awful the last couple of days. Everything hurts. My back keeps spasming, headaches abound, my entire body aches, and I’m not sleeping well. I broke down at 3 a.m. New Year’s Day and asked my loving husband to say a prayer over me, or give me a blessing as we call it. Then, I slept. I slept with only waking twice! With that sleep came a dream of my Caleb. Not a horrid nightmare that has so often been the case, but a dream.

My climber absolutely loved our family vacation to Arches National Park!

My little daredevil climber managed to climb a utility tower and perch himself on the platform at the top. This is were the dream started. I found myself at the bottom, frantically trying to get him to come down as Brig climbed up. I pleaded with everyone to get a bucket truck over faster, to get something in place to catch him if he fell, but everything moved in slow motion. So, I positioned myself in front of the platform where my stinker stood.

Then, just as Brig was about to wrap his daddy arms around him, he wiggled, giggled, and fell.

I reached out my arms, got underneath him, and caught him in an awkward way that resulted in his right leg flopping to the side as I squatted to absorb the momentum of the fall which led to his foot hitting the ground. I looked at his thick, muscular leg and knew it was broken. Yet, he didn’t cry. I cried. I pulled him in close and he snuggled in like always. I could feel his hot breath on my neck as I carefully carried him away to get checked out. My dream then skipped ahead to him with his newly cast leg, not letting it slow him down too much. He was home, he was safe, and I saved him.

This time, I was enough.

For the first time since Caleb died, I was enough. I’ve had many nightmares like this. Nightmares replaying that night. Nightmares like this one where my efforts failed. The recurring one has involved him playing on train tracks with me chained to the platform wall, unable to reach him, and I watch as the train comes into the station and he disappears. Not this time.

This time, he sent me a little gift. A reminder that I can be, and usually am, enough. That, while life doesn’t always turn out the way we’d like despite our best efforts, that’s all we have to offer. Sometimes, the train comes. Sometimes, the catch is awkward. Sometimes, we are left broken or bruised. The point is, we did our best.

So, hello New Year and thanks for the reminder, Bub.

-Jenelle

Reclaiming Hope and Joy

I know, I’ve been gone awhile. I’ve been gone in many ways.

I’ve been doing a lot of soul searching.

The deep, hard, tough, gut wrenching kind.

I’ve known something isn’t quite right with me. Something intangible in me was broken and that something has been breaking everything that I was and have been striving to be in the wake of tragedy. That break started out as something more easy to ignore, became something I worked to hide, and eventually lead to something that began to consume me to the point that I found it difficult to hide.

And my pain and grief began to show in ugly ways.

I recently told my ever so patient husband that I didn’t think I’d ever truly feel hope and joy again. I barraged him with a rapid succession of questions like:

“How can I ever trust medical professionals again?”

“How can I ever trust people to be honest when they make a mistake?”

“How can I have faith that people will do the right thing?”

“How can I fully put myself out there?”

This segued into deeper questions that have burdened my mother’s heart.

“When can I feel comfortable envisioning our children’s futures?”

“We know all too well that people, at any age, can die in the most horrible and seemingly senseless ways. How do I confidently hope and feel joy fully without being crushed again?”

See, I used to be a perpetual optimist. I found hope and joy in nearly every aspect of life. I was joyful and wanted to share that joy. I wasn’t overcome with worry in the first months of my babies’ lives (although, I did occasionally sleep with a hand near them in the bassinet next to my bed so I could feel their warm breath). I taught them to be safe, held their hands crossing the street, made meals from scratch, read them books, sang them songs, and was fully confident in the notion that they were growing into intelligent, kind, caring individuals.

And that I would see them grow up.

I still do those things. I realize now that, post Caleb’s death, I’ve lost the hope of seeing them grow up. The thought that something could tear them away from me at any moment has consumed me and kept me from being present. Brig calls it my self preservation mode, to keep from going insane with fear, worry, and pain. I excused it as being realistic. Really, I’ve been withdrawn, distant.

And it’s become one more thing that Caleb’s death has stolen from me, from my family.

One more thing that was compounded and complicated by last November’s miscarriage and our move across the state two months ago (more on that another time).

My loss of hope and joy doesn’t only withhold those peaceful, happy feelings from me. Me not experiencing them has prevented my friends and family from feeling the hope and joy that I can, should, and used to bring to the table. We all contribute emotionally to those around us. I’ve realized, I haven’t been contributing much and certainly not much that’s positive.

And, most importantly to me, it’s hurt my relationship with God. It’s hurt my trust and faith in Him.

So, it’s time for me to take some big steps towards reclaiming my happy place. It’s time to live without fear, unabashedly finding hope and joy, and pushing aside doubt and fear.

I suppose this is my first step. I sat on this info nearly three times longer than any other time. I’m still working on always feeling hope and joy, pushing aside the doubt and fear, but my family has enough hope and joy to spare.

Expanding the herd, March 2017.

I’m sorry, too.

“I’m so sorry for your loss.”

This has been the phrase that has haunted me since Caleb died. At first, I didn’t like thinking of him as lost because my faith told me exactly where he was. His physical body was buried, but all he is and was lives on and waits for me with our Father in Heaven.

On more agitated days, I felt angry at the “your” part. It left me with a feeling that this vibrant, energetic, loving little boy no longer being physically here was only a loss to me, to my family. Why wasn’t it “our” loss? Why wasn’t it a collective loss for all humanity? For the world? Why couldn’t everyone feel that our future existence was left less bright without him in it?

Then, I just started to accept it for what it is, a sympathetic platitude when you don’t know what else to say. That has changed.

I hear and feel that phrase differently now. Yes, I still hear it. Every time I meet someone new or tell someone my son died, I hear it. Without fail. Now, I say thank you and quietly think to myself that I’m sorry for my loss, too.

I’m sorry, new person that I just met, that you’ll never know my Bub. I’m sorry you’ll never know who I was before he died. She was more carefree, less cynical, more trusting. I’m sorry that woman is gone, forever changed. I’m sorry who my family used to be is gone. I’m sorry I don’t laugh like I used to. I’m sorry I’m not good at small talk. I’m sorry when I see a little blonde haired boy walk by, my eyes well with tears as my words catch in my throat. I’m sorry you asked how many children I have and what there ages are and my answer created an awkward silence. I’m sorry I don’t go out much. Sometimes, I’m just too tired and the mask is too heavy to wear. Thanks for talking to me, though, for including me. It means so very much to simply be acknowledged, spoken to.

I’m not lost in the sense that I don’t know where I am or where to find the old me. I’m lost in that I don’t know how to join my two selves. I’ve experienced a loss of self. A deprivation of who I once was.

And I feel lost in the midst of my grief.

It’s why I haven’t written in so long. I haven’t had the words, or maybe the right words, to say. I’ve experienced a complete and total block in my thought process. As I’ve struggled to merge the everyday old me with the new, I’ve become lost. Caleb’s death created a canyon in my existence and I can’t find a way from one side to the other. I’m on the post death side and everything newly created and born here is thriving and helps me find purpose, peace, and joy while I feel everything I built and created on the other side slowly dies as I struggle to find my way to it. I can see it, remember it. I just can’t feel it and find my way to it.

My daily existence is on autopilot. It’s when his lack of physical presence is most apparent and feeling that is all consuming. My heart races, my face flushes red, my chest feels hot while my hands and feet run cold, my head starts to spin, and I flash the pictures of his life and death through my mind as tears run down my face. Sometimes, I ugly cry and I know it would scare my kids. It scares me. They see the composed tears, that’s important for us all, but they need to know they can count on me. That I’m strong enough to be here for them.

So, I can’t feel it when we’re gathered around the dinner table and he’s not there. I can’t feel it as I push a shopping cart with an empty child seat around the grocery store. I can’t feel it when we gather for family prayer with 7 instead of 8. I can’t feel it when the roll call to account for everyone in the car stops at 5. I can’t feel it when I snuggle with my littles for a story at bedtime.

I do feel it in the middle of the afternoon when I should be cleaning the kitchen, but go to bed instead. I do feel it when I pull into the driveway and sit in my big, empty van for an hour because I can’t go inside my big, empty house. I do feel it when I lay awake in bed at 2:30AM and can’t help but notice the space still left between my husband and I where he should be after waking up at 2:00. Then, I cry. I heave and sob and feel it all. But, sometimes I don’t. Sometimes, I just feel so tired. So alone and so tired and everything feels heavy, as if there were weights hanging from my neck and limbs. I suppose that’s why it’s called a profound loss.

So, thank you for acknowledging our loss. I’m sorry for it, too. Yet, I’d feel it all a thousand lives over, even knowing the outcome, just to be known as Caleb’s mom. That’s how I know I’ll figure it out. We all will.

-Jenelle

We Must Advocate!

Some of the best advice I ever received as a mom came from my own mother when I was pregnant with my first child.  I was lamenting my fears and desires as I faced motherhood and she looked me straight in the eye and told me, “Jenelle, this is your body and your baby.  It’s your job to advocate for yourself and her.  In everything, you are the advocate.  As her mom, you will know her better than anyone else.  You will hire people and pay people to provide their services for you and for her.  That makes you the boss.  Always listen to your gut.”

I’ve kept that with me for nearly 14 years now.  It has been a key piece in coming to terms with Caleb’s death and the inevitable guilt that comes with the death of a child.  I’ve finally gotten to the point where, most days, I can hold my head high and say I did everything I possibly could that night.

We so often think of teaching, guiding, and protecting our children.  I believe we need to more openly talk about advocating for them, too.  There are so many ways we can and need to advocate as parents.

Now, don’t get me wrong.  I am certainly not one of those fight every battle for them kind of moms (no offense if you are, to each his own).  I believe one of the best ways I can prepare my kids for life and the challenges they will face is to give them the tools they need to solve their own problems.  Let’s face it, we can’t be on the playground for every recess.  I want them to bring me their concerns, heartache, trials, and triumphs.  You just won’t find me leaping to the phone or computer to fire off my two cents about how unfair something was.  Life isn’t fair.  My kiddos know that all too well.

However, I do get involved when it seems necessary and appropriate.  My oldest has had some anxiety issues, especially since Caleb’s death.  The transition to junior high this year was difficult for her, as she thrives on routine and stability.  The class periods, changing classrooms/teachers, and crowded halls were overwhelming her.  She kept finding herself late to class as she struggled to navigate the crowds and get to her locker in the 4 minutes allowed for passing.  Three tardies would then lead to detention, which didn’t sit well with my perfectionist.  Her school doesn’t allow backpacks to be used during the school day and she would often find herself carrying supplies for 5 or more class periods, which occasionally got knocked out of her hands.  In short, she was a bit of a mess and starting to hate school.  Yes, my social, academically inclined daughter was dreading school everyday and the less than favorable attitude was coming home, too.

I could see this all unfolding and, after chatting with her, found a simple solution that turned things around.  I simply called her school counselor, explained the situation, and asked if she could be allowed to carry her backpack during the day.  I was thrilled to hear a resounding yes, as the counselor had been struggling to think of a way to help her.  A was so relieved and that small thing has made all the difference for her!

As we advocate for our children, we have an obligation and responsibility to be as educated as we possibly can.  I am a firm believer in a parent’s instinct, especially a mother’s instinct (sorry dads, that’s what I have first hand experience with).  My kids have a saying.  It goes something like this, “Always listen to mom.  Every time you don’t listen to mom, something bad happens!”.

The boys will be wrestling and I tell them to stop.  They don’t listen and within minutes, sometimes seconds, someone is crying.

Didn’t listen to my motto of “No wheels under your feet without a helmet on your head and shoes on your feet.”?  They come to me seeking band-aids and ice packs.

I tell them they’re being too rowdy on the trampoline and someone is going to get hurt, so they need to calm down or get off. Then, tears from the injured, as they continue to be rowdy and I make them get off.

Close your bedroom door!  Didn’t do it?  I’m sorry your Rapunzel Barbie now has no legs, arms, or face because Dottie thought she was a chew toy.

Oh, I could go on and on with good, bad, and ugly stories.

Another doll down some digits.

Then, there’s the times outside the home we need to step in, to advocate for what we know to be right.  I was certain my second oldest had a hearing problem when he was two, for a number of reasons.  I went round and round trying to get him a referral to an otorhinolaryngologist (ENT).  I kept hearing things like, “He has a talkative older sister who always talks for him, his speech will catch up.” and “It’s just a little speech impediment, he’ll grown out of it.” and “Don’t let the excessive ear wax concern you, his eardrums look fine!”.  After more than a year of this, my instincts, my gut just couldn’t let it go.  I called the ENT’s office myself.  Nope, no appointment without a referral.

So, I called their office every hour for the rest of the day.  That is, until the receptionist finally said she’d schedule me and call over for the referral.  She said if she couldn’t get it, insurance wouldn’t pay.  Well, I think she didn’t want to have to deal with me anymore because she got the referral!  Long story less long, he had 40% soft tonal hearing loss in both ears.  Four procedures and nearly 8 years later and he’s passed his hearing test for the last several years!

Parents!  We need to pay attention, educate ourselves, advocate, be assertive, ask questions, and listen to our instincts.  We have a duty and an obligation to our children and ourselves to do these things.  We cannot stand passively by and expect the world to make the best choices for our children.  We need to be their voice for what they do and don’t need, especially when they are young.  Sometimes, that voice will need to be heard by others.  At other times, that voice will be what our children need to hear so they can learn and grow.  We need to practice with the smaller situations so we can find our voice and be ready for the bigger ones.  As we do this, we need to continue to teach them and help them find their own voice.

You never know when making that voice heard could be the difference between life and death, happiness and despair, success and failure, hearing or deafness!  Being heard doesn’t always mean we will be listened to, but at least we will know that we did everything we could.  Isn’t that what every good parent wants?  To do everything they can to raise happy, healthy, kind, and well adjusted contributing members of society?  We can raise a generation prepared for life, ready to stand on their own two feet, who know how to advocate for themselves and others.

-Jenelle