Ok guys – I hope you enjoy the story of the time I drove a casket truck into the police station!
Ok guys – I hope you enjoy the story of the time I drove a casket truck into the police station!
When death hits, time seems to stop in accordance with that person’s life. And the realization sets in at some point, that life, the earth’s rotation, and the act of living and the busyness of society around us – it has all kept going. All of time didn’t literally stop when your loved one’s heart did, but it sure feels like it.
Today is my aunt’s celebration of life and burial of her body at it’s final resting place. Our family has all come together to work towards this day, this finality of the tasks that must be carried out after the passing. Except even in the finality of the goodbye, there is awareness that life will go on. And there will be more tasks to be done, some harder than this, and some easier due to the passing of time.
Last night was the first part of the “visitation” or wake or viewing – however it’s referred to in your vernacular. It began at 5 and ended at 8, and that entire three hours there was a constant line of people that wrapped around the entire auditorium, of people waiting to pay their respects not only to and for Aunt Beth, but to the family that remained. As I sat and watched these people standing there for hours, and how many hundreds of people there must have been, i was overwhelmed again at the amazing impact this woman had with her life. And i felt so honored to have been able to be in the path of her hurricane of love during my life.
My cousin wrote this morning that she hoped she would be able to carry on that hurricane type of love in her mom’s honor throughout the rest of her life, and i thought – “me too.”
How often I take the people around me that I love for granted. How often I get wrapped up in the stresses of my day-to-day existence and i don’t take the time to just LOVE.
But this was one of the lasting gifts Aunt Beth gave us.
She brought my extended family together in one place where we all have had to “do life” together, there in her kitchen and her living room. Oh I know she’s probably so sad she had to miss it but I know she was laughing down on all of us, laughing that amazing laugh as we reminisced, shared pictures and memories, and even made new ones. It has been an amazing time, and I know that there is no way I could ever thank the people who are the unsung heroes of allowing me, and allowing all of us, this time together. My family at home, holding things together and doing all the busy crazy things that make up our life, even without me there to keep all those balls juggling. The amazing neighbors and church members of my aunt and uncle who have kept food flowing into that house in a steady stream, the people who think of details like paper plates and plastic cutlery and extra coffee and just – stuff.
I have witnessed the true outpouring of love and humanity this week in a way that so often gets taken for granted in our every day existence, and this too is a gift. It has allowed me to see that there is never anything too small to be given or done out of love. It assures me that friendships and those strong unbreakable bonds we form with the ones we love are exactly what will hold us up in the hard times.
So today we will say our “see you later’s” as we celebrate the amazing life of Aunt Beth. It will be hard because it will seem so final. It will break my heart to watch my beautiful cousins say goodbye to their mama. But it will remind me to tell my own mama i love her that much more. It will remind me to take the time to hug my own babies a little tighter.
And in this way, we will keep on keepin on. I say it a lot here and i say it even more on Kendall’s page. Keep on…. Keep pushing, keep enduring, keep doing that hard thing and keep doing the right thing and keep doing what you’re doing because it always makes a difference.
Keep choosing love. Love like a hurricane as much as you can and if some days you only love like a drizzle, that’s ok too. But always choose love. Choose to throw your head back in laughter and choose to have a dance party in your kitchen and choose to smile even when you feel like you have nothing to smile about.
These are the beautiful lessons I have learned from my amazing auntie and the ones I will take with me for the rest of my days.
Rest in peace, Aunt Beth.
Oh who am I kidding – we all know you’re up there starting a party!
Love you forever.
This post will be maybe one of the rawest things i’ve ever written. Here’s a warning:
Death is not pretty.
It is not easy, or flowery, or anything remotely resembling anything you will ever watch on TV or a movie.
Yesterday, October 30th, was one of the most emotionally tough days I have ever lived through.
My beautiful amazing aunt Beth died yesterday. She fought this amazing battle against uterine cancer for three years, and received her miraculous healing in heaven. And that is about where the flowery Hallmark euphemisms end. I asked my uncle for his permission to blog the happenings of yesterday as part of the story of her amazing life, and he graciously gave his permission.
And the part of the story I wanted to tell was that even in the midst of the deepest grief, there can be the brightest hope.
True confession: I have been “around” death, but I have never walked through that dark valley myself, for someone so close to me. I have been witness to the shutting down of a body as I have watched Kendall’s body ravaged by septic shock, but I have never been present with someone as their body lost the battle of life.
Cancer is a horrible killer. I could wax poetic about all the things it is not, but I will tell you what it is.
It is an up and down, back and forth battle. It is false starts and false hope and in the end, it is tumors that have overtaken the body, visible through the fluid-overloaded skin. It is pain that cannot be touched by a PCA pump of narcotics, and it is watching your loved one’s organ systems shut down, agonizingly slowly, but oh so surely. It is a catheter-drainage bag full of blood poisoned by chemotherapy and eaten through by cancer cells. It is the gray coloring of skin so sallow and sunken, the body following it’s most basic instinct to breathe in, and let it out. And breathe in, and let it out. Heart beating systolic and diastolic. These are the first functions of life at conception and these are the last functions of life at death.
And it is agonizing. I will never use that word loosely again. Agonizing. Say it slowly, let the weight of it roll around your tongue for a minute. Think of what it means, to be in AGONY. Aunt Beth was brought home on hospice on Friday, October 23rd. And she took her last breath on Friday, October 30th. And on some level you think “only a week? that’s so quick.” And to those who were going about their lives like usual this past week, it probably was quick. But to those who are watching their loved one pass through their final days on earth, time slows to a near stop. This past week for my uncle and my two gorgeous cousins, time was agonizing. They both wanted to capture every single second here on earth with their momma, and towards the end, when her breathing had slowed and the “death rattle” had set in, they wanted her to be at peace quickly. We all did.
The real testament here is how she loved everyone around her, and how she then was surrounded by love as she left her human body behind. The house has been full all week of family, friends, neighbors, all wanting to express their love and gratefulness to Beth for the example she provided of a life well lived. I said in the last post how she loved like a hurricane, and seeing the far reaching impact this woman’s life had, I hold even more firmly to that sentiment. Those people agonized with her as her functions of life began to slowly shut down. As she was unable to any longer take in any food, and stopped being able to process her own body fluids. As her breathing became a conscious effort she had to make, and then as all the fluid in her body began to infiltrate her lungs. For five days past the time when anyone thought she would still be alive, this amazing, strong, fierce fighter held on. Calling the family in every once in a while to sing hymns over her, people filtering in and out as they needed to, to just sit with her, next to her, tell her how much she was loved and just soak up the love still emanating from her body.
My sister and I did not think she would survive til we got here –not that she needed to hang on for us. But we landed late Thursday night in Philadelphia, and went to get a few hours of sleep at the hotel before coming to the house on Friday morning. And we made it. We were able to lay on either side of her body and hold her puffy hands and tell her how much we loved her. I kissed her forehead and told her how proud I was of how hard she fought and how honored I was to know her and how very very much i loved her. I held her hand and I listened to one of the hardest noises I have ever in my life heard, the raspy, gargly breathing of a body no longer able to properly filter fluids, and as I held her hand my thumb left an indent in the boggy, slippery skin because her body was shutting down operations to its periphery and was focused solely on the vital organs of her brain and her heart. The PCA pump was slowly dripping the pain-relieving medication into her heart and this seemed to be part of what was keeping her going – the stimulation of that slow drip triggering the heart to beat and the brain to inhale and exhale, inhale, exhale…. Slow, agonizing, near torturous to watch, harder even to hear. Everyone had told her it was ok to go home, to fly to heaven. And we knew she had been seeing glimpses of the eternal glory that awaited her. She was able to form words a few days ago still and was expressing things that made us all believe she was comforted by what she was seeing. So we sang her more hymns, and we watched her turning grayer, and felt her hands and feet getting colder.
At one point late in the afternoon her breathing changed, and the hospice nurse was called in to come check on things and change out the medicine cartridge on the pump. And it was as if we all knew this was it. We gathered in the room, her daughters on either side of her laying their heads on her chest where they had lain countless other days for their whole lives, the place where they always found the most comfort and love, a place they knew was not going to be there for much longer. So the hospice nurse disconnected the pump and the second her heart was not receiving that input to keep beating, it stopped.
And the heartbreaking sounds of grief flooded the air. A husband losing the love of his life. Daughters losing their mama. A mama losing her daughter. All of us losing one of the most loving and precious people we have ever had the honor of knowing. Her absence was palpable in that room as the realization hit us that all that was left was a shell of a human and her spirit had passed into eternity. I watched those of us left behind process the sudden onset of grief in our own ways. I watched my cousins kiss their mommy one last time before retreating to a quiet place to sob together, their loss so deep that none of us could even hope to be of comfort. I watched my uncle throw his body onto that of his beautiful bride, sobs racking his body as the emotion flowed through him. I watched the hospice nurse, a friend and neighbor of the family, shake with sorrow as she put stethoscope to chest, listening intently for any sign of heart rhythm, heard the tremor in her voice as she whispered more to herself than any of us ‘’she’s gone”. And for whatever reason, maybe respect for the body, or maybe the nurse asked us all to, we filtered out. The body was left taking “agonal breaths” – the reflex of inhale/exhale still flickering across a brain whose sole purpose in life was to stay alive, to be a mom, to be a wife. This is what death does. It is cruel and horrible. It makes a mom who labored over bringing her daughter to life and hearing that first breath, refuse to believe that that same daughter had just taken her last breath, but that that breath was not “life”.
So we all left that room, and the hospice nurse was left to clean the body, to honor the passing from this life into the next. It is methodical and clinical and i cannot imagine how hard it was to do that for a friend who has passed. Until she reached that point where she needed physical help to move the body and finish her tasks. And I watched my dad, one of the strongest men I know, the only one of us who could have possibly endured under that task, go into the room with the nurse, and deal with the horribly unspeakable things that happen to a body once it is no longer sustaining life. Then we called the funeral home so the mortician could come get the body. And we called the DME (medical equipment company) to come and get the medical equipment, and we called the church and family and everyone else who needed to know, and somehow, real life resumed. Except it was different. She was gone, and we all felt it. It was both peaceful and sad. As Christians, we rejoiced that she was in heaven, restored to a perfect painfree existence as the amazing soul she has always been. I could almost hear her beautiful giggle as she went running into the arms of Jesus….or at least that’s how it is in my mind.
The realization struck me at some point that my uncle would need to go back into that room that he has shared with his bride, and she would not be there. And the smell that death leaves in it’s wake was permeating that room. My dad was still dutifully helping walk my uncle through the steps of “now what”, numbed as he was in his utter despairing grief, but he came in, and my mom did, and my sister did, and we moved as a unit. Shutting the door and starting the task of cleaning out the death, while honoring and keeping her LIFE presence there. We stripped the bed and we took apart the mattress and we vacuumed and swept and deodorized. We moved all of the “medical stuff” to a part of the bathroom where it can be dealt with at another time, and we set to work restoring the room to what it looked like as if it was just waiting for her to come home from a trip and crawl into her side of the bed again. And it was hard. It is not something you are trained to do or prepared for in any way. But you just do it. You do it because you know there is no way you want your cousins or uncle to have to deal with it. You do it because it is the right thing to do and it is something to do, some palpable way of being helpful. But if I never have to do that in my life ever again, it will be too soon.
Death is a brutal and terrible ending of life. But it awakens you to what Life really is. And for this final lesson from Aunt Beth, I am so very grateful.
There are not enough words in my vocabulary to fully capture the depth of the feelings we are all feeling. Nor are there enough to capture the gratitude I feel for being able to be here, in these tough times, with my family. I miss my own babies, but I know they are in good hands with Ben. I am grateful for the opportunity to be here sharing our favorite memories, reliving the times we all spent laughing and making memories.
I have cried some of the hardest, deepest tears I have ever cried in my life, and I have laughed deeply and goodly.
And now the hard part comes. We are planning a celebration of her life and the burial and all the details that go along with that. I am honored to be able to help in any way with these tasks. Your prayers are so appreciated. Not for me, but for those she leaves behind here. Her husband who is going to have to figure out how to make himself breakfast without also making a plate and a cup of coffee for his wife. For the daughters who will pick up the phone to call their mommy to share good news and realize that she cannot answer, will not answer again. For all the days between now and the time they themselves enter heaven when they will have to go on without their mommy. My heart breaks for them and I hate when I don’t have words to give to them but I can just hold them in my arms and smooth their hair back and tell them how much i love them. For the grandsons who hardly understand why their “Gam” isn’t here anymore and won’t be here ever again.
But this is how life goes on. It’s unfair and it hurts and we don’t understand why.
But we have hope that we will be reunited in heaven again someday. So we are happy that she is free from pain, that she is in her eternal Home, laughing that infectious laugh, and showering her hurricane love down on all of us in her own beautiful way.
The family has requested that in lieu of flowers, donations in honor of Beth Wheeler can be made to the Hope For Kendall Kendall Quinn Medical Fund at any BMO Harris Bank by requesting to make a donation/deposit into the
kendall quinn medical fund account c/o Terra Atkinson
Checks can be mailed to:
Hope For Kendall/KQMF
1587 Manhattan St
Bolingbrook IL 60490
Or online using a debit/credit card at
So I figured I should get at least one blog post up in October.
Here you go.
I’m not entirely sure why today is the day I have been spurred to finally put pen to paper (or fingers to keyboard as it were). There have been many other days where my emotional state led me to believe that blogging and purging my feelings would make me feel better. (Did I just say blog and purge? Like this is some kind of word-bulimia? Yes. I did. I’m copyrighting that. Wordimia.)
Someday I am sure that the entire story of what I have been enduring the last few months (years) will be told. In fact, in the book I have been encouraged to write but have yet to start will include all of that story.
To say that my personal fortitude has been tested would be an understatement.
But today, for some reason, the dam holding back my feelings is near breaking. And what broke it was a phone call from my dad who is with my mom at my aunt’s house as she endures her final days on earth, surrounded by the love of family and friends. She has fought fiercely against aggressive ovarian cancer. But her body is wearing out. Her spirit sure isn’t. As my dad told me of her wishes to be buried in her pajamas and fuzzy slippers, I laughed even as the tears rolled down my face, knowing that that is EXACTLY what I would picture her being buried in. Of course she’d want to go to heaven wearing what she felt most at home in! And i realized that even though the death of a loved one is so hard for those they leave behind, the glory that those who are going on are passing into will be amazing. But oh my heart aches for those she will be leaving behind her. Her laugh is one of those amazing infectious laughs that they should make soundtracks out of because if you hear it you just cannot help but laugh yourself, even if you have no idea what is so funny! She loves like a hurricane, it hits everyone around her all at once and she is just one of the most amazing women i have had the joy of being surrounded by in my life.
And so…I decided today was the day I was going to stop being dictated by my circumstances. I am stressed and I am sad and I am sore and I am a hundred different feelings and things but at the top of that list is this:
I AM ALIVE.
So I will LIVE in the best way I know how. I will embrace the stuff of life, the good, the bad, the painful, the beautiful, the hard, the awesome.
I will enjoy the food, and I will breathe the air and I will feel the feelings. I will love more fiercely and laugh more often.
And I want to encourage you to do the same.
Let go of the small petty stuff. Let go of some of the big petty stuff too.
I try so hard to keep the thousand balls in my life juggling in the air the best way I know how but you know what? Sometimes I’m just going to drop some. And that’s ok. I’ll pick them all back up in the morning and start over.
This life, it’s a gift. It’s not guaranteed or promised.
While I was on the phone with my dad this morning, there were helicopters hovering overhead as they had been for a few hours. There was a shooting, some kind of murder/suicide thing at an office park less than 2 miles from my house. Life is not a guarantee. But it sure is awesome while it’s here.
This is what is on my mind today, and has been kind of brewing for a while.
I’m not sure what else I have to say about it all right now so i’ll wrap this one up.
I have a lot of other things I need and want to blog about. Some are silly – like my new plannner i’m working with or the awesome table makeover i did at the beginning of summer and forgot to blog about. Some are probably more serious but those are the hard ones to get out. Things with kendall are trucking along. She’s not able to attend school full time and that is a hard, but not shocking, realization for me to come to. She was officially diagnosed with ADHD and we are learning to try to handle that better in the midst of “mito crashes”. If you’re wondering how an energy deficient kid looks with ADHD, imagine a gremlin high on weed. It’s interesting. She’s also probably going to be put into a special ed class at school instead of mainstreaming. I don’t even know which way to fight for her on that – because she is struggling SO hard to keep up, and yet she starts behind the 8-ball with all that it takes just to get out of bed and into the building every day. I don’t know. I don’t know where that line is between advocating FOR her and protecting her in the best way I know how. It wears me out and it stresses me out and it’s added to the stress of Karissa and her school struggles for similar reasons and most of the time I just feel like this huge failure at most of my life and yet….I’m living it. I’m here. I’m putting one foot in front of the other and keepin on.
So that’s that.
I’ve missed blogging. Now that I’ve begun my wordimia i am sure there will be much more to follow.
Thanks for those of you who stick around and visit faithfully, hoping i’ve made a new post. Here you go. This one’s for you.
I hope it’s been a good monday for all of you.
I hope you take a few deep breaths of outside air and realize how amazing it is that your lungs work and your brain works and all of you just WORKS. Don’t take it for granted.
Keep on keepin on, party people.
I just wanted to make this little video of me reading this book today.
It’s hard to accurately portray why this book means a lot to me. I know it’s a little too touchy feely for some people.
But i don’t know.
Maybe you’ll like it like i did.
I think sometimes we don’t hear it enough, that it’s ok to not only LIKE who we are, but to LOVE who we are. I think somewhere along the way our culture has told us that we have to be someone else in order to be “good” or “likeable” or “worthy”….and that’s just not true.
When we have no sense of Self, it can get filled up with a whole lot of bad crap.
So listen. Take it to heart. I hope it maybe helps someone out there as much as it helped me.
Love you party peeps~
I don’t know why i’m always so shocked to see how long it’s been since I last posted.
But still…. June?
September will be better, I promise. I already have lots of fun
mildly eye-roll-inducing SUPER INTERESTING posts lined up.
And even a few vlogs! (speaking of, I have a burning question regarding vlog vs blog on a specific topic on the Terra Talking Facebook Page – go over there, like it if you already don’t, and help decide the fate of my awesome story!!)
So since most of you come here to read about Kendall, and how she’s doing, I’ll start the month off with that.
Overall, she’s doing good. Other than the crazy bug bite from hell that turned into an abcess/cellulitis that required hospitalization and ten days of IV antibiotics and a week of IV stress dose steroids, she’s been doing a good job holding her own.
But oh…how I wish you could see what I mean when i say she is exhausted. How much my heart breaks for this little girl who shoulders up her backpack, full of two pumps and two bags of fluids the last couple weeks, and wears it on the hot sticky days like a champ, never complaining, never whining about it, just maneuvering around with it because this is her life and this is what she knows how to do: LIVE.
She loves going to school. Absolutely ADORES it! It wears her out so badly (and yes, I get that all first graders are tired and adjusting to a new schedule – I was prepared for some tiredness but this is a whole other level of exhaustion for Kendall!), but she puts on that crazy smile of hers and she keeps her chin up and she does her absolute best to pay attention to the teacher and to keep up with the class and she’s trying so hard. i’m so proud of her. She’s amazing.
This infection she had – well, it hit me almost as hard as it hit her. She had JUST gotten IVIG, the magical unicorn tears I have held up for the past two years as being the reason she has stayed so healthy. And as a quick primer on IVIG for those who are newer around here – it stands for IntraVenous ImmunoGlobulin. Your body’s “immune system” is complex and multi-faceted but for space and time constraints i’ll boil it down to this: your blood has three main components of immunoglobulin which are technically your “fighters” against bacteria, viruses, fungi, etc. You have IgA, IgM and IgG. IgG is the main one you need in order to have an immune system as most people consider it. Contrary to popular belief, “picking up every cold under the sun” is not actually a sign of a weak immune system. It’s a sign of a good one – your fighters kick in! You get the fever (WHICH IS A GOOD THING!!! It means your body is fighting invaders!), you get a runny nose, etc etc – and you fight off the infection thanks to your IgG.
Then we have Kendall. She technically HAS IgG in her blood, and sometimes she even has a really good amount of it – but it’s like having an army of soldiers who are all narcoleptic and/or otherwise incapacitated. Her own native immune system doesn’t recognize invaders until it’s WAY too late. Even with the IgG that we infuse into her bloodstream every few weeks, her immune system is extremely lazy. So what happened a few weeks ago is that when she got a bug bite on her little booty cheek, her body didn’t send the soldiers to help control the spread of the bite reaction as is typical. Hers went from “regular mosquito bite” to “holy crap what IS THAT THING!?!?!?!!?” in about 72 hours. And we were running IV benadryl to try to stop it from getting worse and it was just getting out of our control almost before our eyes.
And i was glad that we are at a place with her team that when I send an email (with a picture) and say “ummmmmm…..help me?”, they jumped into action. I didn’t have to spell my fears out for her doc, he knew what I was thinking. This is the kind of stuff that takes Kendall down hard. Maybe not right then, but if we had not nipped that in the bud, it would have easily been systemic within the week. Septic, most likely. A blood stream infection that would wreak havoc on her organs and little body – all from a bug bite.
Now of course we have no way of knowing for sure – and no one really wants to try to find out. But the fact of the matter remains that Kendall looks amazing on the outside, and yet her body fights a raging war on the inside, every single day. I am SO thankful for our new nurses who are very on top of learning all of Kendall’s “Kendallisms” and helping me manage the delicate balance of meds/fluids/vitals that keep her able to go to school with a smile on her face and sit in that little desk like the other kids in her class and live her life the best way she knows how.
A bug bite. A little regular probably mosquito bite. And it was as if her body didn’t even recognize that it was fighting what was quickly becoming a massive infection. I’d be lying if i told you it doesn’t scare me a little bit for this winter. I have NEVER wanted to live my life, or hers, keeping her away from living her life. I’ve never tried to keep her quarantined from things (although I like to think i make decisions in her best interest as far as when to go and when to stay home). I don’t make it a huge deal that my kid has basically no functional immune system. It’s just not how I’ve ever wanted to treat her or live. But my gosh…to see what just happened, it makes me stop and think. And overthink probably….
So that’s where she’s at. With currently a very minimally functioning immune system, but off the antibiotics and steroids for now (YAY!!!! Those drugs are brutal on her and I hate when she needs them, even though I am SO very grateful for them.)
We are still going up to Milwaukee once a week for iron infusions – I think we only have three more left though! After that course is done, we will re-run the labs and see if we have done enough boosting to let her coast for a while. My impression is that we have definitely helped her feel TONS better, and I don’t see the massive crash after a few days that we were at the beginning of the infusions. But I do wonder how long that will “stick” once we stop the infusions.
School is going…..well…..it’s going! It is becoming more obvious and apparent that there are some MAJOR lags in Kendall’s ability to keep up with the class – and while that is in part due to her needing to miss one day each week, it is in larger part due to the fact that she has ALWAYS had struggles with actually learning and retaining the information taught in class. That isn’t to say that she isn’t smart as a whip – cause she is! She can throw around medical terminology correctly and tell you about feeding pumps and IV pumps and discuss IV medications better than a lot of medical students probably. Yet – she can’t recall the sounds each letter makes and spell a word off the top of her head from her word wall list. She can’t tell you how to sort a group of like words. It is hard to put it into words exactly, what we see and observe, all I know is – she is struggling and I refuse to let her continue to struggle without some major help.
So next Tuesday we will be shlepping BACK up to milwaukee for all day neuropsych testing to determine what, if any, learning disabilities Kendall has that we can identify and hopefully help address. It isn’t like this news comes as a shock. Her doctor actually put in the referral for this testing LAST YEAR, but insurance has finally approved it and the clinic finally has an opening. While i know this will be yet another “thing” to add to the diagnosis pile, I am hopeful that at least this one we can attack. This time we can maybe help solve a problem instead of just minimizing damage.
This post is all over the place and I feel like there’s so much more I could say about where Kendall is at….or my feelings on the matter. But I’m sure they will come out in bits and pieces in other posts over the next month.
Thanks for sticking around if you’re still here. I hope to have lots more to talk about over the next few weeks and it’s so nice to know you’re listening!
Have a beautiful evening, party people. See you on the flip side…
The long awaited mascara/eye makeup vlog.
And I hope you laugh at least a little.
Tell me you did even if you didn’t. It will encourage me to keep making crazy videos. And tell me if this mascara information helped you out!
Love you, party peoples.
Share this using my cool new tabs at the bottom of the post. I like to see the little numbers light up.
Disclaimer: I was not paid to promote any of these products. In fact I’m pretty sure the companies would rather pay me NOT to talk about their stuff like this! But i love everything I used and if you like it too you should go buy some!
The Jetlag if you will.
The inevitable fallout that happens after spending a few weeks in the hospital.
Fallout for Kendall, fallout for me, fallout for all of us. We need to re-enter “normal life”, but normal life often involves an increase in the complexity or care of Kendall and her needs, which means there’s a lot less actual time in which to pretend like we are back to normal.
I don’t usually like to focus on the “hard” part of our lives. I hate feeling like i’m complaining, because in actuality, i try really hard not to. I try to not get mired down in the “woe is me” or “woe is us” dumps. I try to not play the comparison game, and I try to not ever take a minute of my “hard” life for granted because I know there are so many who would gladly give up nights of sleep and take the boxes of bliss back if it meant they got to hold their baby’s hand one more time. This is the reality of the life I live – knowing that as hard as life is many days, as many things as i WANT to whine and complain about – I know at the end of the day, that the fact that we are all still HERE and still alive is the biggest blessing of all. This is not a lesson I take lightly.
But even knowing that – sometimes it is still hard to walk in these shoes.
And today, for some reason, I just had a lot that I wanted to get off my chest.
It was hot today. A beautiful preview of summer to come.
And of course, Kendall couldn’t handle it.
And really, I hate overusing that term “she crashed”. If I’m honest, I hate seeing other people use and abuse that term. I know that “crashes” look different for each person, and that what I’ve seen and witnessed in my child is probably far more than most people will ever have to watch their child endure during a “crash”. (I told you – i’m just getting it all out here today!) Anyways – while she didn’t have what I would consider a “crash”, she definitely had a horrible day. Which led to her nurse having a bad day, and then making me feel like a horrible parent, and left me feeling helpless and angry and sad all at once. And maybe this was because I was already trying to deal with my own emotional fallout and so the timing of everything was just really crappy.
But i had a few times today where I just wanted to bury my head in my arms and just cry. For no good reason really – just let the tears flow because it seemed like the right thing to do. (Have i ever mentioned how much i REALLY hate to cry?? It’s just not cute. It serves no purpose except making my eyes puffy and my sinuses swollen.)
I was sad to see Kendall wanting SO BADLY to just be a normal kid and go to school.
I mean, my gosh, today was her last day of KINDERGARTEN. I have a big first grader now. She did it! She learned most of her letters and all of her numbers and she can count to 100 (almost – she gets stuck on 60 and kind of loops back around to 40’s and then throws a few teens back in but you can get her on track and she can do it!) and she knows her colors and most of her shapes and wow….she actually learned to SIT and to not yell at her teacher and to not throw markers at other kids and in spite of having TWO horrible blood infections, a broken wrist, and countless little viral things this year – she did it. I am SO so so proud of her. I am so glad our school doesn’t do the graduation thing for kindergarten because i would have just been a hot sobbing mess who needed the Neti pot for the next three days.
But my baby had to go in spite of the heat of the day which just literally zaps her of energy, and she is now carrying two pumps and two bags of fluids in her little backpack and she’s running antibiotics that she is technically allergic to and which makes her feel like absolute shi-caca. And yes it would be easier to just snap those pumps to an IV pole and make her wear her oxygen and make her sit in her chair which are all things she SHOULD be doing but you cannot tell this kid differently and even though i know I am the parent i just wanted her to have this one last day of “normal”. You know? Maybe you don’t. Maybe you don’t know the absolutely heartbreaking crossroads I battle at every day – between wanting to give Kendall the wings to fly and trying to tether her to me for safety. I know she has challenges. I know she would likely have a smoother course if I made her be “that medical kid”. I’ve seen this happen a lot in the special needs community – kiddos tied to IV poles when a backpack will work just as well, becoming reliant on their chairs, spending so much time in the hospital because things aren’t just perfect. And while I don’t know each individual situation, I know mine. And I know Kendall’s. And I know I will daily strive to find that perfect balance between overmedicalizing her, and keeping her safe from her own stubborn will to do whatever she sets her mind to, mito and other health issues be damned.
And this is what drains me. Letting her fly while keeping her tethered. Taming a wild beautiful horse.
And while I am writing these thoughts, a song comes on that brings a smile to my face and reminds me to just breathe and take it day by day.
There’s more than one answer to these questions pointing me in a crooked line,
And the less I seek my source for some definitive, closer I am to fine.
So I guess that’s that.
I know it will be a tough summer with the heat. It always is. It is really fricking hard to keep her cooped up in the air con while she watches her sisters and i going out to do fun things. And in another slap to the face, she asked if she could have a bigger bike. I told her she had kaylen’s old bike and it was her size. And then I realized – she cannot ride a regular bike. She does not have the balance or the coordination to sit on the small seat and balance herself and her backpack and make her legs propel the pedals forward and keep her eyes on the road ahead. She does really awesome walking around and looking mostly normal but do you know how hard that is for her? How much it wears her out to go from point A to point B? You probably don’t. Because she keeps it together in front of most people. And because she holds it together, I hold it together. But her sisters and I see the fallout. We deal with the fallout of a hurting Kendall, lashing out at us because her legs hurt and she’s exhausted (she really doesn’t lash out at daddy ever….)
And I was just sad that I realized we have to figure out a way to get her one of those special adaptive bikes. It will be all she can do right now – and it’s all she wants to do is ride bikes with her sisters on beautiful nights like tonight, when the humidity isn’t completely zapping her and she can tolerate being outside and looking normal and doing normal things. I’m not trying to make this all seem like some huge whinefest. It is just the bare bones truth of how things are right now.
But we do hard things around here. And we figure out a way to keep on keepin on in spite of the hard things.
So we will get through this day, and the sun will rise again in the morning and things will look different. Maybe still hard, maybe a little better. But each day is new and always full of the opportunity for good things.
This is how we survive. This is how we recover. We roll with the punches, even though a few of them land right in the kisser, and a few of them are stinging blows. (Should I put more song lyrics here? Because it fits so perfectly!!! I have used them before. They will soon be tattooed on my body even!)
But the fighter still remains.
So that’s how recovery is going.
Kendall is recovering. Her body is still weak from the infection and from the effects of the super strong antibiotics she is on every six hours, and they run for two hours each time. But her fighting spirit is strong as ever. As for me, I am getting there. No it wasn’t as emotionally taxing as some of them have been. And yet, how do you measure that? I feel like I hardly had time to sit and breathe after returning from Mexico, when my mother’s day was thrown into upheaval by an ambulance ride and then a 3 am drive up to milwaukee smacking myself so hard in the face to keep myself awake that I broke blood vessels in my cheeks. And really things never calmed down from there. Two weeks of the chaos of our lives being thrown into a blender. Coming home exhausted with an exhausted child and three other exhausted babies who just have to make it through the last few days of school. And then we can all sleep, said the mama.
So that’s all I wanted to get out tonight. That some days are really rough and it doesn’t mean it will always be rough but it’s also not always as easy as I work so hard to make it look. Home doesn’t always mean things are smooth sailing, but it means we are working on it.
If you’ve managed to read through this drivel this far, you rock. And I thank you for hanging in there with me through this stage of the journey. The sun will come out tomorrow, right? (I am totally busting out in my best Annie voice right now!)
Keep on Keepin On, party people.
Not the drink kind.
Well, kind of the drink kind. Except I currently don’t have a drink in my hand.
That’s kind of how it felt yesterday when I wheeled Kendall into our unit and there were nurses waiting in a line down the hallway saying “welcome back!!!” and escorting us right back to the same room we had just left about 24 hours before. But kind of like the song says “you wanna be where people know your troubles are all the same, you wanna go where everybody knows your name.”
I know there are some of you who are understandably confused about what it all means that we had to come rushing back up here yesterday after we were supposedly ok to go home. (Don’t worry, i’m mostly still confused about it all myself!)
Basically, when we were leaving on Saturday afternoon, we knew that one of her cultures was growing positive, but it was a pretty late positive, so they let us go anyways because a.) I was already packed up and none of the weekend people wanted to come tell me i had to unpack, and b.) the assumption was that we were starting to get on top of the bug so continuing with our meds at home would still be an appropriate course of action. Well Sunday morning another one of her cultures popped positive, and one of her main doctors was actually around to see this news. Infectious Diseases was consulted and the decision was made that we needed to get her old line out as quickly as possible as the belief is that these bugs have now invaded and set up shop on the line itself and that could set her up for a REALLY bad infection if they hung out there waiting til the antibiotics were done. I don’t fully understand all of the reasoning, and i know there was a lot that went into the decision, but the bottom line – we had to get the line out.
So i packed up the laundry I had just done, put the unpacked bags back in the car, and drove back up here. Except I forgot my awesome mattress pad that makes the boxes of bliss semi-bearable so….that kind of sucked!
In a normal course of action – the old line would be pulled and a temporary PICC line would be placed. A PICC is a peripherally inserted central catheter – basically it threads through the arm and into one of the main heart veins. It is a good temporary solution between permanent lines – for a lot of kids and adults. Unfortunately for Kendall, her arm veins are mostly scarred over and get VERY unhappy with any use – especially a double lumen PICC. They usually cause more problems (clots, occluded lumens, just a general pain in the booty) than they solve, but they are sometimes a necessary evil. complicating the matter is that most PICC’s are made of polyurethane, and you cannot clean the area or dwell alcohol in polyurethane because it starts to melt it. Kendall can only use betadine/alcohol to clean her sites, and she relies heavily on an ethanol (alcohol) dwell to help keep her line clear of the bugs – ESPECIALLY when we cannot get clear cultures, like right now. So all of this led to our surgeon needing to think way outside the box about the kind of line he could place, where he could place it, and how we could still get the access we need.
This of course is all based on which of Kendall’s veins are still open/usable (the more veins are used, the more they tend to scar over and become unusable. At one time Kendall only had two veins open for central access, but miraculously a couple years ago a line study showed that two other sites previously thought scarred were actually slightly open.) ( I realized there was one other question on Kendall’s page I meant to answer too: Can Kendall have a port? And the answer is really no. Ports are great for people who only need occasional access and who have actual immune systems. Neither of those applies to Kendall. The placement and removal of a port is a much more involved process than with a broviac which is the type of line she has now, and while we initially tried a port for her line needs, it quickly proved to be a very poor choice for her. So that’s why we can’t do a port!)
Anyways – all of that led to what we have now – a broviac line that is only a single lumen that is non-tunneled but goes centrally to her heart, and a midline IV in her forearm that should hold a little more steady than a typical PIV but not tick her BC vein off too badly. This is not an ideal situation – because we cannot leave the hospital with either of these lines in place. And neither the ID team nor the surgery team will place another central line in her until we have five negative cultures (which translates to ten days in Kendall dollars). I did hear one person say 5 days of negative cultures, which is a different story though – so i’m hoping everyone means THAT instead of five negative cultures because the thought of being here for ten straight days makes me want to eat all of the donuts in the world and cry the ugly cry. It is different to be here with a pretty stable Kendall vs a very sick one – of course when she’s very sick it’s not a question this is where we need to be. But right now we are in a gray area. She is still definitely not quite herself, and her care at home is VERY demanding. Yet – she isn’t SO sick that all she wants to do is lay in her bed. Therein lies the challenge. Entertaining a child who WANTS to be up and doing something, but doesn’t have the energy to do so, and still requires being hooked up to multiple machines and monitors making doing much pretty impossible. Please know that I am not complaining that she is doing so well~ I am SO thankful that she is handling this illness pretty well from an infection standpoint. I just feel….”stuck”. I almost always have a good instinct about whether it’s time to go home or time to stay here inpatient, or what direction we need to look in or head in….and I don’t have that this time. I don’t like this feeling but I know in part it is just God telling me to slow down and trust HIS timing and His plan. And I am reminded, somehow, sitting here in this small room with the constant beeping of monitors and the discomfort of this vinyl coated boxy couch bed, and the chill of the conditioned air being pumped in – of sitting on a warm beach, watching the waves crash onto the shore. There is no sense of timing to them. They come and they go and they just are. And I am trying to be like that – knowing the waves come and they go and they just are and all I can do is keep my eye on the One who knows that even in chaos there is order and even in discomfort there is joy.
So today we will wait some more. For a plan and for clear cultures and for sleep and for whatever this day holds.
I’ll update again once I know more!
Keep on Keepin On~
I don’t know your name.
I don’t know why you were here in the PICU, I don’t know how long you had been here.
I know only that today you became an angel.
Your room is dark now. Your beautiful pictures and the decorations on your door are gone now.
I hope you are running and laughing and playing up in heaven tonight, free of tubes and wires and beeps and pokes and all the things that you were hooked up to in your tiny crib.
Yesterday morning you started having troubles. Your room was a hive of activity all morning and that code light, that damn red code light was lit up above your door as doctors and x-ray machines and surgical teams moved effficiently in and out. My eye caught that of your nurse and tears welled up in my eyes. Because she is our nurse too. And I knew that look on her face. I knew the look on your momma’s face too, as she leaned against the nurses desk watching all the activity and feeling helpless to it all. And all I could do was pray…
They eventually stabilized you. When I left to go home, you seemed stable. I knew our nurse/your nurse was busy in your room doing the amazing work only she can do to keep very chaotic little bodies as stable as possible. Last night when she got off shift she texted me that it had been a rough day, and that she missed coming in to our room for her loves. I texted her back that it was ok – we sent her our love all day, and I knew she was right where she needed to be all day – taking care of YOU. And I know she gave it her all. I know she poured every last ounce of anything she had left into you all day. And when she left, and she needed to, she let all of those emotions about how hard that day was flow as tears.
I hope you are able to look down now and see her and know what an amazing person you had taking care of you. All of them here are amazing. I saw your beautiful pictures – you were a smiling happy baby – surely you knew the love they gave you. I hope you watch over all of them as they continue having hard days, and continue coming in and doing what they do with smiles on their faces, even if those smiles are hiding tears sometimes.
And today I came back and realized your room was clean.
You were gone.
I tried to tell myself maybe you just got transferred somewhere. Maybe you had to go down to the CICU or maybe they flew you to Chicago. Sure they did.
But see, I know that’s not the reality of life in the ICU.
I know what that code light means.
And I don’t know why today was your time, and two years ago when my daughter was in the room right next to yours, and her code light was going off and going off and going off for so many long hours…..why it wasn’t her time. I don’t understand why some babies make it, and some babies don’t.
I have had to come to terms with the fact that here in the ICU, as much as it feels like a weird microcosm of “home” sometimes….it also feels like the hardest place in the world to “live”. Because while many miracles and successes happen here….just as often there isn’t a happy ending.
But what I want to tell you is that you earning your angel wings was not in vain.
You made an impact with your little life.
You made an impact on me. And I don’t even know you. I hope I can find out your name at least. I’d like to honor you by at least knowing your name.
Because of that dark room with it’s absence of a teeny crib and beautiful pictures of your adorable smile, I will hug my babies tighter. I will grab onto life a little harder. I will complain a LOT less. I will smile more often and I will forgive more easily and I will not take one single minute of life – whether it is here on the hard boxes of bliss or home in my own zone of comfort – for granted.
I wanted to be sad today, not quite like this. But i was feeling sorry for myself. Sorry for my own baby girl who was laying in the room across the hall from you. I dropped her sisters off at school and i was sad that I had to say goodbye to them and couldn’t tell them when i would see them again. Maybe in two days or maybe a week. I passed my little girl’s classroom and I started to cry as i realized she should have been sitting there at the yellow table, brow furrowed in concentration as she worked on her letters and numbers. She should be going on her very first field trip tomorrow to the horse farm. She has been so excited for that trip! It hurts to think of how devastated she will be when she finds out she missed it.
But now I think of all the firsts you will have missed to, and i am glad for the ones my baby HAS experienced. I will try my best to not focus on the things she’s missed, and instead be overjoyed for the things she HAS had.
Dear baby….you weren’t here long, but you made a difference. Your smile was beautiful and I will likely never forget it.
Fly high sweet baby girl~