Going on a Trip.

I’m going to do this.

I’m going to pack all four of my babies into the car and we will drive down to where it’s warm and where there is sunshine and there are beaches and the ocean.

I am going to lose my mind, multiple times and in multiple ways, but i am going to do this.

 

I need to get Kendall to the ocean. I don’t know why. And the fact that i am so compelled to do this scares me a little. But I need to do this, to prove to me, to prove to her, to prove to i don’t even know who because we have nothing to prove – that she is capable of this. That her “things” do not define her or limit her.

IMG_1598

I don’t have the money for this and the logistics of it are going to be insane. Packing her up for a trip to the hospital for the day for ivig is hard. Packing her up to go somewhere is exhausting. Packing her up for a trip like this is going to suck the last ounce of energy i have.Packing up the IV pumps, all her IV meds and fluids and tpn and extra tubing, the oxygen concentrator and pulse ox and blood pressure machine and all the other meds and supplies that make up Atkinson General Hospital into the car…i am tired just thinking about it.   But i will do it. I will do it for her and i will do it for all my babies and i will do it for me.

I need to watch her splash in those waves and build sand castles with her sisters and be a regular little kid. Because sometimes your friends’ kids get cancer and sometimes good moms die way too young and sometimes really bad things happen and they sneak up on you and you can’t sit around and wait for some perfect time or perfect life to finally feel happy – you have to go out and MAKE your happiness come, find your happiness.

 

Find it in the laughter coming from the back seat or the way your babies sing along to all your favorite songs in the car because it’s all they’ve ever heard and find it in the simple joys of just being able to sit down at the table together and enjoy a meal. Find happiness in the way it feels to hug and hold your kids tight – no matter what else they’ve done or said that day.

Find happiness.

My happiness is here, and my happiness will be even more when i see all of my girls enjoying the fruits of the hard work it’s going to be to get to the beach.

I have been walking through the dark stretch of highway that your life detours onto when your baby gets sick sick. Like organs failing, life support keeping the barest definition of life pumping through veins, are they gonna make it kind of sick. And it is bringing so many feelings flooding back. I am glad to be able to offer some support – because really how do you support someone through this? You can’t. There are no magic words or magic pills you can give someone who is standing bedside holding their babies lifeless little puffy hand to make it “better”. All you can do is say “you will be ok, she will be ok” – and then pray with every ounce of strength and faith you possess that it’s true. It brings back all those memories my brain has filed away of the hours laying on the cold floor of the ICU family area, my own bile dripping out of my mouth and onto the floor but not caring because every single cell of my body was screaming for her to come back to me, for that damn code alarm to stop blaring, for people to stop yelling orders out of her room to the people waiting outside the room with meds and machines and things to help keep my baby alive. Those feelings well up as this heave of sobs and tears i have to stifle back down because we are not there, that was then and this is now and now, today, I have my baby girl here. Running around this morning packing random stuff into her princess purse to take to school because of course we need to take three easy clip dresses for polly pocket Elsa and yogurt and a special spoon and two hairbands and five broken crayons to that place we are supposed to be sitting and learning!!!
And I look at her and I am amazed at her strength and resilience. And this is how i know what “amazing” really means. This is how i know what life really means, what it’s all about.

IMG_1978

And that’s how i know this trip will all work out somehow. I will get them all to the beach and i will soak up every single little moment of that gloriousness.
And i will hug them all so tight and will tell them all how amazing they are.

That’s about all i have to say about that today. The tears are too close to the surface and i have too much crap to do to sit here crying.
Just – don’t take your life for granted, ok? Find something – no matter how small you have to start with – and focus on how grateful you are for that thing, how happy that one thing can make you. Don’t hold grudges. Tell someone that you love them or that you’re sorry or that you forgive them even if the apology hasn’t come and hug your babies no matter how frustrated you are right now.
This life, it’s so awesome and you never know what direction it’s going to head in.

Pack the car up and crank the music and drive to your happy place.

 

Be happy.

 

20150506_172327597_iOS

 

Peace out party people~

T

Keepin On.

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.

Scan 1 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.

 

T

A Life Well Lived

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.

Scan 2

 

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 cousinsThe Wheeler Family -15 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 Wheeler Family -32 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. Scan 1
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.

DSC_8050

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

(ph. 630.226.5330)

Checks can be mailed to:
Hope For Kendall/KQMF
1587 Manhattan St
Bolingbrook IL 60490

Or online using a debit/credit card at

paypal.me/hopeforkendall

Or at
YouCaring

Endure.

So I figured I should get at least one blog post up in October.

Here you go.

IMG_8584

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.

 

<3,

 

me.

Related Posts Plugin for WordPress, Blogger...