Beautiful Faces

These words are honest and real and cut to it quick. Heather’s words could easily be my words…..
We don’t have a famous spokesperson for our cancer or a huge sponsorship. It’s all grassroots led.

Trying To Survive One Moment At A Time

I have started this post and deleted it a million times this week.  I want it to reflect the great amount of respect and love I have for the people it is about. I have never met any of them in person.  But they have been a big part of my healing process over the past 22 months.

Since my dad’s diagnosis of Glioblastoma in March of 2012 I have scoured the Internet for as much information I could.  I wanted to educate and prepare myself for what was going to happen to my dad, and also get an idea of what my family was going to experience.  As most of you know the internet is a scary place to start looking up GBM.  There isn’t much, if any, positive hopeful information out there.  Even the ER doctor that initially diagnosed my dad warned me not to go home and google…

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Her Victory…

Momma finished her journey late yesterday afternoon. She was surrounded by all her loves. But do know this….she isn’t lost. We know exactly where she is – with her Heavenly Father.

And I’m oh-so jealous.

And remember me telling you that God was gonna have to speak to me loudly? Well He did. And oh my goodness it was so loud and flamboyant that it got the attention of everyone in the house but not in a crazy way. It was peaceful and calm and soft all at the same time.  He’s a good God and he’s kept all of his promises.

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Momma, we miss you so much already. I’m not sure how we’ll do this without you beside us telling us what to do and giving us advice but I imagine we’ll just grab each other’s hand and take one step at a time, right? I love you Momma, bunches and bunches and more than this world….

 “Come to me, all you who are weary and burdened, and I will give you rest.” ~Matthew 11:28

The most wonderful gift…

Back on October 9th, Momma had her very own concert in her living room – just for her. Bonnie and Amy from the St. Paul’s Worship Team came to serenade her with some of her favorite songs. Um, who wouldn’t just love that? But these songs were special – for they were all the songs that she’s picked out for her funeral and wanted to be the first to hear them. It was an amazing touching sweet time….for all us. The Holy Spirit was very much alive in the room!

I’m so thankful that Amy thought to pull out her camera to capture some of the moments….

You can't see it, but Momma was actually tapping her toes to the beat of the songs!

You can’t see it, but Momma was actually tapping her toes to the beat of the songs!

 

Is that a hint of a smile? I do believe so and one of the last that were actually captured by camera.

Is that a hint of a smile? I do believe so and one of the last that were actually captured by camera.

Gosh almighty, I love that smile and I desperately miss seeing that infectious smile! Thank you so very much Amy and Bonnie for sharing the love of Christ through worship and bringing her joy that day. It was truly the most wonderful gift anyone could give!

“How lovely are Your dwelling places, O LORD of hosts! My soul longed and even yearned for the courts of the LORD; My heart and my flesh sing for joy to the living God.” ~Psalm 84:1-2

Sweet Dreams

Communication has been sparse for the last week with momma and she no longer can speak or open her eyes. Daddy and I have had to become mind readers of sorts. Sometimes telling the difference between an anxiety attack and pain is more than a bit difficult. We’re always “on” looking for clues – her facial expressions, picking at her sheets, breathing pattern, leg movement and more. So much more. Never resting. Never relaxed. Remember having your infant who couldn’t tell you why they were unhappy or where it hurt? Exactly.

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Saturday night I kissed her forehead and cheek, telling her that I loved her and that I hope she had sweet dreams. She whispered back to me “sweet dreams” and those were the last words my momma spoke to me.

I’ve thought much on the times we’ve had that will be our last and the many first that are yet to come without her. But real fear gripped me last night as those words echoed through my mind repeatedly……terrified that I’ll forget her voice. Is it possible to forget your own momma’s voice?

“When I am afraid, I put my trust in you.” Psalm 56:3

I did it my way…

A week ago today hospice told us that Momma had entered the transition phase. Her body is preparing for death and her spirit is preparing for its journey Home. Last Rites were administered and the family was called to come and say their goodbyes. And now, we sit and hold her hand. Whisper “I love you’s” in her ear. Kiss her on the forehead. And wait. And remember all the good times. All of them. Because that’s the only way we can do this.

Can I call a time-out on all of this? Surely you know God what control freaks we all are and yet we have no control over Glioblastoma?

I remember when I was pregnant with Haley I began having panic attacks about the whole birthing process. So about two months before my due date I decided that I wasn’t going to give birth and she would just have to stay in my tummy. And that was that. I was in complete denial. Right up until the moment that they sent me in to be induced. But I showed them. After 36 hours of laboring I still wasn’t dilated so an emergency c-section was done. There was no way I was pushing a baby out of me. The McDonald’s have a strong will about them. We like to do things our way. Sometimes it turns out good and other times it backfires on us.

The fear of not having control can be so suffocating. I feel like if I hand over my control I’m also handing over my mom. How can I give up someone who I love so much? How will I be able to go on and raise my kids without her advice? How will we be able to celebrate without her? I don’t know how to do this. I don’t want to do this.

But I know in my heart I’ve got to. Give it up. Let it Go.

Lord, give us the strength and the courage to do the hard.

And that’s what we’ve been working on this past week, letting go and giving Mommy the permission she needs from us to let go too. I’ve never done anything harder in my life until I told my mom yesterday that she didn’t have to fight anymore and assured her that we’d take care of each other. That it was okay for her to grab Jesus’ hand and go with him. We would be okay. And in time we will.

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Everyone’s journey Home is different. The nurses keep telling us what to watch for but as you know we don’t follow the textbook guidelines. And just as she’s done all her life, Momma will do this in her own way – as she should. Can’t you just hear Frank Sinatra singing “My Way” through all of this?

But I also love the way my Daddy looks at it….”Jesus is still preparing her room in His house.” And that makes me smile. Oh, yes He is.

Keep watch, dear Lord, with those who work, or watch, or weep this night, and give your angels charge over those who sleep. Tend the sick, give rest to the weary, bless the dying, soothe the suffering, pity the afflicted, shield the joyous; and all for your love’s sake. Amen ~ BCP

Honest honesty….

This past week has been quite a challenge. Some days I can’t find the words to express or describe how I feel. There can be such a vast array of feelings in one single moment that sometimes it just takes your breath away and you don’t know what they are. A lot of days there’s an overwhelming feeling of hopelessness because I can’t make my momma better or do anything about it. Life can hurt so bad at times.

Honest to goodness, some days are down right horrible and it’s always then that a sweet soul will come and ask how we’re doing. Sometimes I have to dig for that polite answer of  “hanging in there.” Wanna know what I really want to say sometimes? Shitty. There, I said it. I know, I know someone’s gonna call the pc police because the children’s minister has lost her ever lovin’ mind and has said a potty word! But that’s truly how I feel and some days that’s how I really want to respond. Yeah. Just don’t tell me it’s all gonna be ok ’cause we’ve already been there and no one wants a repeat of that.

I’m sure by now you’ve seen the articles on the lady who also has glioblastoma multiforme and her decision to end her life on her terms. Can I be honest with you and tell you that I’m struggling with it because I understand where she’s coming from. On one hand I say “Yay for you girl, taking that beast by the horns and showing it who’s boss!” and then on the other it doesn’t sit well with my faith or my soul so I feel torn. I would love to sit and chat with her and find out who she is. I’d ask her questions like, how does your faith come into all of this or does it at all?  Do you have a relationship with Jesus? Do you blame Him? Isn’t He big enough to handle the burden of it for you? What I would not say to her is (and you have to read this all whiny sounding) “He’ll never give you more than you can handle” cause that would just make me wanna punch someone in the mouth and I’m not all about getting my teeth knocked out.

I see where she’s coming from with wanting to have some control over the how and when she dies and not having to go through the horrific end that with this beast you will. I get that. But I also see the courage that one has to look cancer in the face, flip it the bird knowing full well that Jesus wins. Not the cancer. Cancer comes to seek and destroy –  just like the enemy and in Jesus we DO have the final victory! It may not be the victory that we had envisioned or desired but we do get that victory. I also get the whole dignity thing  I actually looked the definition of dignity up and it’s “the quality or state of being worthy of esteem or respect”. In the past two months I’ve done more for my mom than any daughter should ever have to do. I get it. But let me tell you – I would do them all over 100 times because I love my momma and taking care of her (while it can be hard) is easy in the sense that I want to be there for her and I want her to feel the love pour out of my fingers when I’m touching her and caring for her. It’s an honor to take care of her and do everything for her. Maybe the dignity part comes in when the person being cared for feels that they’ve become a burden on their caretakers and they feel pity. I don’t look at my momma with any less respect – but actually more. She’s a brave, brave soul and she’s embraced every moment of this. The good and the bad. Doesn’t God have our days numbered? If we take the reins into our own hands aren’t we telling him to get out of our way, that He’s not big enough to handle this?

I’m not judging her. We’re living through this same cancer nightmare right now. I know it from the caregivers perspective, and I’ve felt it to my very core when I listen to my momma describe how she’s feeling and what she’s afraid of. I know, we know the feeling of everything spiraling out of control and desperately trying to grab ahold of something, anything.

This life is hard, ugly, messy and yet it’s beautiful too. It was never a guaranteed easy. And yet even though I’ve seen the pain and fear in my mom, I’ve also seen her bathing in the peace that only God could give. For all of those ugly hurtful moments there’s also been the God moments when he’s given us joy, we’ve experienced a blessing, and have seen Him at work.

So maybe I understand now more about my own faith than I did before. I’d still love to sit down with Brittany and chat over some coffee or tea. I wish there were more people battling GBM or their caretakers that would come forward and speak out about their experiences.

I cherish every moment that I spend with my momma. Even the ones when she’s sleeping. I hold every kiss from her in my heart and will never, ever, be able to get enough of them. I just can’t imagine her life ending before His timing. Doesn’t He hold us all in His hands?  There just may be that one huge revelation that He’s saving for us at the end. I don’t want to miss it. God knows at this point in the game he’s really  having to yell at me so I’m sure it would flamboyant! Nah, all He offers is good. Who wants to miss out on some good?

As I rise, strength of God
Go before, lift me up
As I wake, eyes of God
Look upon, be my sight

As I wait, heart of God
Satisfy and sustain
As I hear, voice of God
Lead me on, be my guide
Be my guide

Above and below me
Before and behind me
In every eye that sees me
Christ be all around me

~ All Sons & Daughters

I’ll see you your counselor and raise you a burger….

Because I’m what my kids affectionately call a “helicopter mom”, I arranged for a Bereavement Counselor to come to the house today and talk to them about their feelings. Whatever. I thought it would be good for them to have someone who specializes in this and who would maybe have some tricks-of-the-trade or a quick-fix-it for them. Can you hear the backfire?

So I greeted the counselor at the front door and she appeared to be quite the professional with her hair perfectly done, and a beautiful dress that was certainly dry clean only. Precious. She quickly asked if we have dogs, oh yeah….two black labs that weight 50 and 75 lbs AND who have the grace of bulls in a china shop. Got it pictured? I told her they had already been banished to the backyard and then thought to warn her that we also have cats. Holy Moly! You should’ve seen this woman’s eyes! They about popped out her head but I give her props – she still came in the house, but only after I swore that they wouldn’t come anywhere near her. You do know this is going to end well?

The time she spent with all of us was about as good as it could’ve been I suppose….Haley wouldn’t speak to her and Jackson spilled his guts, which was the complete opposite of what I expected. Jackson told her all about what a fun “Nina” my mom is and everything they would do together and how the two of them would sneak things behind mine and my dad’s backs. Words fail me with expressing how rich it was to hear him speak of momma all the while laughing with his memories.

Jackson and his Nina panning for gold

Jackson and his Nina panning for gold

And then, I heard the back door creak open.

I couldn’t get the words “DON’T LET THEM IN!” out quick enough. They had already made it inside and all that could be heard were 8 huge paws heading to living room. As soon as our counselor saw those two black heads round the corner she started screaming and jumped on the dang couch in her heels and dry clean only dress! It was a sight to behold and thankfully we got the dogs out quickly! She gulped air and apologized profusely saying she was working on her fear…which tickled me because up till that moment I had judged this woman by her profession assuming she had it all together when in reality she needed just as much, if not more, counseling than we all did! We probably do need more though….my kids laughed their hiney’s off at her expense in the kitchen, while she was still here mind you. They’re twisted.

In the end, she offered to come back next week – Haley kindly told her no and Jackson said he’d talk to her again IF she brought him a big mac and a sundae. She agreed with a smile on her face.

So she’s coming back! Bless her heart, she’s one tough cookie!

“He will yet fill your mouth with laughter, and your lips with shouting.” ~ Job 8:21