Buckets

I bought buckets yesterday. Storage buckets. The sturdy kind. Bigger than normal. Big enough to bury some memories. Big enough to hide away 7 years. Oh, and school supplies. For a college student. Not an elementary student. The way it should have also been.

Such a simple purchase for so many. For me before Katherine. With goals of organizing something in our lives that’s nagging at us. To hold possessions and memories and things needed during different seasons and turns of life. Thinking about it enthusiastically. Excited to get it done. And I was frozen.

I stood in front of the shelf and it suddenly hit me, as if I wasn’t already aware. But clarity is not a positive moment for parents of loss, in most cases. What the hell was I doing? I was buying buckets for my dead child’s most personal affects. People behind me buying clothes, and school supplies. And here I was… buying this.

My buckets were to hold a dead 7 year olds “stuff”. My 7 year old Katherine. How did my child accumulate so much of this stuff. In piles taller than me. It’s like she was holding on to this life with all of her might. Collecting pieces of herself on the way out. Fighting for more time with the ownership these things. As if having them meant there would have to be more time somehow in her mind. Why would life give you so much, and then take you away before you had time to enjoy it?

Well, there wasn’t more time. They now sit silent and dusty. Like much of ourselves. I realize, again, that cancer didn’t care about her plans. Or ours. It wanted her gone. And quickly. No fight. No chance. No Saturday organization to look forward too. No new seasons to begin. Just buckets full of her life. You might as well pack mine along with it.

Old Age

Old age is not lost on me. I’m noticing small things. My body is not at all happy with me. I’m tying to make peace with it. I’m trying to age gracefully as we all do, but I feel as if the process sped up in my case. A rapid aging of my mind and soul. My body is catching up to my mind I suppose. They are not in sync at all.

As if old age wasn’t bad enough, I’m so devastated that I have to experience a majority of the rest of my long, slow, new awareness without one of my children to lean on and celebrate our milestones together. It makes each change in my life, each new realization of the natural process of aging so awkward and strange. I relish Tori and Alissas experiences and I share mine, but we all feel something is missing. There was another little person that walked alongside us and she just disappeared.

These natural occurrences are already so hard to stomach, but when we have those young beautiful people to make us feel like we accomplished something it makes it so much easier. Well… one of my beautiful young reminders of why I exist is gone. She wont get to grow old. Or age. Or enjoy any milestones but the ripe old age of 6. I feel guilty and sad that she lost that chance. And completely heartbroken that she won’t see mine.

I will think of her when I pass. So fondly and softly she will be in my heart. I pray that if everyone is right, then I will get to finally see her, or at least finally be at peace with this loss. That’s the only hope I have left.

One of those, stop, it hits you, you can’t breath for a moment, feel a tightness in your chest, and tear up constantly, kind of days… deep breaths. In and out.

#katherinethebrave #dipg #lovesandkisses #seeyounexttime

Mother’s Day

Mothers day isn’t so hard. Because every day is hard with this loss.

Whether you’ve lost a mother figure, or have lost a precious pregnancy, baby or child you’ve raised, blood or not, every day that you wake up without that brilliant being in your life is hard. This day does not change that heartache.

This day just pushes that loss to the forefront a little more abruptly. Reminds you to appreciate what you have left. Encourages those who may not normally reach out to try. And makes you suffer a little bit more then you already have each day by watching those that have whole families not appreciate what they have. Thank you so much to those that do. It’s helpful.

I don’t want gifts. I want my family next to me. All of them. The missing one too. I’ve always been that way though. It hasn’t really changed. But even with my non-codependency to gifts and attention on Mother’s Day, once you spend one Mother’s Day carrying your dying child around who can’t walk, and watching her wilt away slowly into the night, and knowing any day that this brilliant being could die, they’re never the same. That was a real bad Mother’s Day. This is nothing. It’s like white noise. Deafening. All of it.

At least she has the comfort of her peace on this Mother’s Day. She will suffer no more. We do. But at least she won’t. She suffered enough for all of us. Holidays didn’t give her reprieve. She has one finally. That’s my Mother’s Day present. It’s all I will ever need. Ever. Thank you.

Mothers Day, May 8th 2016

Mother’s Day 2016

Mother’s Day 2016-2

The Flood

When it starts, it’s like a flood. But instead of hearing it, you feel it. An odd thought, or a chill down your back. And before you know it memories of her last breath engulf you and seep into everything that you are doing at that moment. It all becomes one suddenly. That life. This life. The emotions. It drags you down deep into the hell you lived for so long. And her suffering. The suffering is the worse. The memories of her humiliation, and the loss she absorbed as her 7 year old body was wilting away, while her friends and cousins were exuberant and blissful. She watched it all, and felt it, and fought it when we all gave up. She didn’t blink.

The loss of her and of our happy life consumes me sometimes. Once it hits you there’s no controlling it. You either deal with it at that moment, or later. Work, car, store, an event. It doesn’t discriminate. Just like #DIPG. There’s nowhere to go. The effort to crawl out of that painful breadth is staggering. You can’t imagine how a person going through what we have gone through could take one more step, make one more move, continue that conversation, breathe. But we do… I’ve sat there and shuddered, shaking my head from side to side, closing my eyes, blinking really hard all at once to get it out. Literally like a movie, using my supernatural powers to expend any pain or suffering from my thoughts. Anything to try and get it out of my head. After a bit I can push it way down, until later when I’m alone. And I won’t lie. I’ll tell you why I’m being a jerk and ignoring you, or not focusing. And then I’ll move on and make it look easy. But it’s not… It’s like suffering all over again, and neglecting the issue as I did then. Hoping it will go away and just leave our family the hell alone. It didn’t.

I’ve aged years since Katherine’s diagnosis and death, and my mind and heart went with her. I’ve tried to find it, but it’s not there. The mom I was. The wife. The friend. And I care so much about that. So damn much its sad. And that worry has just aged me so much more. The worry about all of it. Mom, Wife, Employee, Daughter, Sister, Cousin, Friend… All of it. So much so that I shake before anything preplanned, uncontrollably. And I will shake all day. Sometimes I feel something pushing me down and preventing me from leaving my own house, or moving forward. It’s awful. And it makes me bitter. Then I make excuses. Then I cut people off to avoid it. Something I never did before…

I guess watching your child die will do this to you. It would take something big like that to keep me from being who I was before. Back when no one could break me, and I was a rock for so many. I got nothing… Nothing more to give.

Words of advice… Don’t

  • ask me to reach out if I need anything, you should reach out to me, or no one will. I admit it…
  • ask me how I’m doing and expect the truth. I will say fine, or miserable, or getting by, and then change the subject. Why make us both miserable.
  • reach out to me and not follow up because you haven’t heard back from me. I can guarantee you that I got the message. Closed the message. Thought of a response. Got anxiety. Decided not to respond. Waited days to feel guilty. And then responded too late. Ya… Another text might have helped me along with that. Or just not getting upset if I respond too late. My bad…
  • get mad when I cancel. Again.           And again.
  • get mad when I don’t reach out with thank you’s for all that you have done. Trust me, you’ve done more than I would have done. I know that, but I don’t show it because I can’t show anything real right now. Even to myself.
  • be shocked when I’m late all the time now, when I never was before. Just be glad I made it. You don’t know the mountain I had to climb to be there.
  • be upset if I don’t go up to you at a party and say hi. I’m not the person I used to be. Please say hi to me. And not cautiously. Or as if I have a disease.
  • expect me not to be upset when you haven’t reached out at all, or nearly as much as you did when my kid was dying. That is LITERALLY like a stab in the back to a mourning mother. I never knew that before. And I would wonder why so many people cared. Now I wonder how it’s possible that all of those caring people don’t care anymore. It kills me inside.
  • pretend I don’t remind you of the possible fate of your healthy living children. I know I do. I see it in the arms distance relationships that have happened more and more lately. I see it in your eyes. I your words. I know interacting with me is sometimes difficult because I remind you of every parents worst nightmare. I can’t pretend I don’t. And if you treat me like I do, I will exit stage left… swiftly.

I’m sorry Katherine. I miss you mongrel. And I’m sorry to all of my friends and family. My daughters, and my friends. Especially David. I’m so sorry… for the truth, and the lies, and this life. I’m writing to be stronger. I’m writing to be here.

Shares

39,500 shares and 1,600,000 million views of a long boring video about a young healthy famous persons pregnancy.

38 (hard stop) shares and a 118 (hard stop) likes about a dead child’s tumors needing funding to save thousands of more dead children, some of which could soon be their dead children.

I’m not shaming anyone. I’m proving a point. Share away. Share all of the things that make us smile. But also share the #TRUTH. That video, and their life, is not the truth. That’s why we like it… in doses. My truth was real. I couldn’t skip past my truth on my feed. Or not share. Or pretend it wasn’t happening. Ignoring it or unfollowing it. I cried enough tears to mop a damn floor. And then I had to clean up my own damn mess. That’s the truth.

We all suffer when we pretend it’s not happening. I know you may think its easier to look away, but in the end it isn’t easier. It’s harder. For everyone. Harder for the many families such as ours tying to make a difference for all of our kids. Much harder than sharing Katherine’s story to raise awareness and open peoples eyes. Definitely not as hard as it is for me to share it day in and day out. I was there. This is nothing. And definitely not as hard as it was for her. She lived it. Until her last breath.

Our friends list, as precious and fragile as it is to us, means nothing compared to her suffering. Or the suffering of those soon to be diagnosed. Close to you. Nothing even close. Now share that…

#lit #ashamed #neverforgetkatherinethebrave #thetruthhurtsbutlieshurtourchildren #gograyinmay #katherinethebrave #katherinedeservedmorethan4 #katherinedeservedacure #Katherinewasworthmoreshares

Old accounts

Walked past an elementary school today. I thought, to myself… I should be at a table doing homework with my 9 year old right now. Planning for an exciting summer. Worrying about how I was going to possibly manage it all. I just sighed and sucked it in. Finished my walk and deflected the tight gulp in my chest and throat as I held back the emotions.

I made it home and tried to wipe the disgust and shame of my life off with distraction. Started going through documents, a never ending task for us all. Then I began I update some details on my medical accounts and profiles. Until I came across this…

No. She is not 9 Walgreens. She stopped breathing at 7… we will not be filling anymore prescriptions for her. She filled enough in 12 months to last a lifetime anyway. And none of it helped. None of it.

Thanks. Thanks a lot.

You’ve spent enough time grieving…

“It’s important that you be there for your other daughters…” translates to, “You’ve spent enough time grieving…”

I don’t need a reminder that I have two other children. I held them for 9 months, and raised them right alongside the daughter that didn’t make it. In fact, they raised her with me. They were like her 2nd and 3rd mommies. I wonder how long their allowed to grieve their sisters death? These half moms of Katherine. Maybe they’ll get half the time. Or maybe even the same as me. Who has that bereavement book with the timeline. Or better yet, just be sure to share all of the opinions that you have and I’ll just go off of that… seriously.

May is here. I’ve spent the past two days either crying or being extremely angry and broken. It’s worse than year one. The shock is wearing off and she is still gone. Everyday a new realization that she is definitely not coming back. It hits me like a 1000 little half breaths, none completely filling my lungs. My baby is gone. I know, but you must try. But she took me with her. I can see that, but you are strong. I just don’t “feel” it anymore. Who could blame you, but you’ve gone this far. I’m tired of trying to find those old feelings again. It’s gone. I’m sorry, but you have no choice if you want to move forward. Heal…

If I could have said just one more goodbye. Just one.

#MadAsHell #CrocodileAngryTears #ImHandlingThisGracefully #IGracefullyDidntCatchThatLampIThrew #ButIGracefullyCleanedItUp #NoOneGotHurt #ExceptTheLamp #MyBad #IveAlwaysHatedThatLamp

https://youtu.be/l_EmZ-LsLqs

A Thousand

She lived a thousand years before I even lived 40…

This picture has sat in my phone for weeks. I struggled to post it. I hurts from the depths of my unforgiving soul every time I see it. Nothing can prepare a family to handle watching this type of suffering from their child. Nothing can save my beaten and broken heart because of her pain. I didn’t realize then that the me I was would go with her. Gone for good.

Nothing, forever, a thousand times, will ever makeup for this exhausting and incomplete leftover life we are trying to live. Faking happiness with every turn of events. It’s like the moment she died someone dropped me a million miles away and I’m constantly trying to walk back to my old life. In search of that happiness I didn’t appreciate or cherish. Trying new things with old traditions. Hoping it will remind me of a time when… It never works… I remember by morning.

Maybe that’s it. It will never get better, and I’ll be mapping my way back for life. The thought fills me with dread. The selfish thoughts. Self loathing has become comforting. I don’t want to be here or like that. I want to have some peace again. Even if it’s just for a moment. To breath. With my healthy girls. Free again.

Stop Grieving

I’m not strong. I need to wake up. I should stop grieving. I have to realize I’m not the only one suffering the loss of a child. I must move on.

Sarcasm…

Here’s a taste of what us cancer families get from followers every damn day. This person was just bold enough to put it in a public post and didn’t hide behind a FB message and then quickly lock their FB. page down, or pretend it came from some sort of religious belief, or even use an experience to make it sound plausible. Sad… It’s sad for all of us.

Hey people, I post to get my frustrations out, and to help other families feel as if they are not alone. To spread awareness for my daughters rare cancer and help with all of the above. Sometimes these crappy comments are easy to ignore because the post wasn’t emotional for me specifically. Not this time… If this keeps up, as it has been more frequent the further from her death we get, then I’m out.