Wednesday, September 19, 2018

Six Months

My beautiful mother died six months ago. I wish I could say it has gotten easier, but if anything, life has gotten so much harder. 

The moment she died... and every second leading up to her funeral.... was planning. And in some crazy way it was enthusiastic planning about a celebration we knew was coming. The Jambalaya was on the stove, the friends on the road, her monogrammed napkins ordered. We were able to see so many people that she loved and in return felt their love for her. We reminisced, toasted, cried, laughed. It was absolutely perfect.

And then I came home.

And then the days and months that followed became quiet, and lonely, and I became angry. I don't have any new BB stories, videos, pictures. The amount I have is finite. I can't hold her hand, stroke her hair, see that almost distant twinkle in her eye. Read a text, or an email, or hear a voicemail. I only have one recording of her voice singing "Show me the Way to go Home". I can't hear her mutter I love you one last time. Amelie will point at her picture and say, "your Mommy is in heaven." 

This disease manifested itself in my mother's brain and slowly, over the course of seven years, ripped every shred of her being away. 

It began with little things, missing words, getting lost, paranoia seeping in. 

Then major paranoia, inability to do simple things, anger, lots of anger at loved ones. Mostly loved ones. 

Then it took away her freedoms. To drive, to work, to type, to read. To garden, to dance, to play solitaire.

Then it took away her basic necessities. To speak, to hug, to walk, to talk. To recognize us.

Alzheimer's doesn't hold back. It will dissolve every single molecule that built the person you loved. It will make you watch as they can no longer use the bathroom, as they entertain crazy fears in their brains. As they blame you for the most ridiculous things. As they forget who they are, who you are, what anything is for. They will drink hand sanitizer, they will wash their hands in the toilet, they will blame things broken in the house on bears. BEARS.

I watched this disease do this to my Mom. I watched even before her official diagnosis in 2011. I watched after diagnosis as her test numbers went down, as her dependencies went up, as we lost her day by day and second by second.

She was taken from us not by a Tsunami but a slow eroding merciless tide and we were helpless. 

I miss her every single day. I miss her so much now with the holidays coming. I can't go into a HomeGoods without sobbing at the seasonal decor. I need her in this rough exhausting phase of motherhood/wifehood/livelihood. How did she do it all? How did she do it all with a smile on her face and fresh flowers in the house? How did she always look beautiful and smell like Chanel? What was her secret? What did she not get to tell me about how hard and wonderful her late 30's/early 40's were? 

It is unfair what this disease did to her. And to us. And to the entire community of people that loved her. She should be here, letting Gumbo up on her bed. Dancing with my father on their deck, helping me decorate for the holidays or just hugging me. Holding my hand. Stroking my hair. She should be at Jazzercise with her friends, at Thanksgiving at Chipmunk Hill. I miss her touch. The soothing touch of a mother to let you know it will all be okay.

She should be here. And Alzheimer's took her from us. 

There is still no cure. And still no prevention. This is why I walk and why I obnoxiously ask for money every single year. I won't stop until there is a cure. 

My Walk donation Link:

Tuesday, August 7, 2018

#CLT for Charlotte

Our Mom community here in Charlotte is a strong one. One of my friends I have met through this community and through blogging is going through the unimaginable. April Robson writes for Smidge of This and has always reached out to me during my fundraising for Alzheimer's and just in general as Mom's health continued to decline. She makes hair bows for little girls and created one just for Krewe BB and donated her proceeds to our walk. 

Earlier this week April's daughter Charlotte was diagnosed with Leukodystrophy, a rare, incurable and terminal disease. As you can imagine her family is heartbroken with this diagnosis and they are going to spend their next moments loving and caring for their baby girl. 

Currently the family has asked for us to let them have their privacy but if you want to help you can do the three following things immediately:

1. Prayer. This disease can be genetic so we are asking for prayers for the health of her two other children. Also prayer for Charlotte to be wrapped in love and comfort as there is no treatment plan for her at this time.

2. A Go Fund Me account has been set up for the Robson family. Both April and her husband are self employed and the most of these visits are uncovered. This will also help with meals, care for the other two children, etc.

3. There is an Amazon wish list to make things a little easier for them.

April we are all praying for you and your beautiful family and are ready with open arms for anything you could possibly need.

Tuesday, July 24, 2018

The "In Memory Of" Flower

I apologize for my silence. I have been in grief witness protection. AKA wine lockup. I haven't been able to articulate how this feels. I can partially blame my stellar public school education for my lackluster vocabulary and dump the rest on being a working mother with two and a half kids, a dog, a lagging social life, and summer schedules. 

The truth is; this doesn't get better. It changes. But it doesn't stop. There is no stoppage of unrelenting grief. It alters itself to fit into your lifestyle but it doesn't go away. It permanently changes your personality's chemical makeup. I am not Katharine from 8 years ago. We are unfortunately not the crazy Boylan family you knew and loved. We are different. We are still here, but we are forever changed by this disease.

I have walked in the Charlotte Walk to End Alzheimer's for 6 years. This will be my 7th. It began with me and Mom in symphony park hoisting our yellow (caregiver) and blue (Alzheimer's patient) flowers. Lunches at Roosters to celebrate our team. Matching shirts. Boozy afternoons on the back porch implementing our fall planting schedule. I carried this torch with and for her. 

This year I will hold a purple flower. The "In Memorial" flower for those that have lost a loved one to Alzheimer's. 
We have lost a blue flower.

We have lost BB. My mother. My beautiful, glowing, supportive, loving, silly, crazy mother. 

She is so much more than a plastic flower.
But on October 13th I won't have her with me. She will be there in spirit but I can't go hug and kiss her afterwards and tell her how successful we were. I can't hold her hand and help her keep the pace of the course. I can't order her favorite Mushroom Pizza from Roosters and toast her with Dewars. I can't help her into her pajamas and tuck her in with nightlights. I can't touch her. Can't read to her. I can't hold her.

I can't call her. Hug her. Listen to a voicemail from her. Read an email from her. She was slowly ripped from me for seven years. I have no digital reminders. 

She is gone.
Alzheimer's took her from me. She was 69. My kids are 3 and 7. It isn't fair. I need her so much right now. I'm an exhausted working lonely mom and I need her so much. I have questions that only she can answer. I need a hug. I need a girls weekend. I need MY MOM. 
I hate asking for money. Fundraising is exhausting. Especially year after year with no breakthroughs to mention. I do this because I am scared to death I will develop this disease. I do this for Amelie and Ford. I do this for the hundreds, YES hundreds, of messages my lowly little blog gets about people or friends of friends going through this same diagnosis and needing advice. I do it for all of you. It is going to affect you in one way or another. 

Please consider donating to my Walk to End Alzheimer's team. I am a motherless Mother. It is a lonely and sad place to be in your 30's.  

My Mother was the brightest light with the biggest heart. She loved all of you. And she meant it. And I do this to continue her legacy.

Thursday, April 19, 2018

How Are You Doing?

I thought I would write a post about how I am doing. Several friends (bless you) have checked in on me and I just don't answer my phone. It might seem rude but I just can't answer knowing what the conversation will be about. I despise talking on the phone and am much better in person or via text/email/instagram DM/facebook message/snapchat/Marco get the idea. It is much easier to hide behind my laptop and pour my heart out here than when I can get follow-up questions.

I'm okay. 

But I've been sick since I came back to Charlotte after the funeral. Apparently this is pretty normal after a stressful event (article HERE). I honestly think I was running on adrenaline from the moment Mom died. I won't go into details but the type of sick that you can't get out there and exercise, eat normally, feel good, feel happy. I'm no stranger to weird sicknesses (kidney stone that shut down kidneys at age 8, two bouts of Sepsis that put me in ICU with organ failure) but this is just a pain. On top of it I had a sinus infection that wiped me out the 2nd week and this other issue just won't quit. I'm on some PSYCHO antibiotics that I would rather not be taking but I trust my doctor and we are just trying to wipe out whatever it is. But when you feel like sh*t it is hard to be happy.

Also, to add insult to injury I can't drink on these meds for 10 days. TEN DAYS. So I begged my doctor for some xanax. Yep, I'm Karen from Will and Grace.

Aside from the stupid medical crap, I'm hanging in there. The first week was awful. I cried a lot. But then had to rally and host Easter. We typically go to Asheville but after all the back and forth I just wanted to be home. Easter was wonderful (even sick) and then Monday after I was sick all over again. So the second week was awful but a little less. The third week was awful, but okay, and here we are in the fourth week.

I think after the funeral is the hardest. There is a perfectly written article about this HERE called "The Grieving Need You the Most After the Funeral". This is so so so so true and important. From this article:
Just as the shock begins to wear off and the haze is lifted and you start to feel the full gravity of the loss; just as you get a clear look at the massive crater in your heart—you find yourself alone.
For me, the flowers have died, the cards have stopped coming (snail mail is incredibly appreciated in the time of social media) and everyone has gone about their lives. (As everyone should! This is not a guilt trip, more of an information session) This was compounded by the fact that Easter and then Spring Break came immediately after so I just felt alone. Grief is lonely. Losing a parent at the age of 38 is the worst. Unfortunately I have several friends in this club and more that are soon to be members. It just plain sucks. 

I feel that some expected me to be okay after my 24 hour getaway to Ballantyne and come home healed and ready to move on. (I desperately wanted to run away to a beach and be like Diane Keaton in "Something's Gotta Give" writing and crying in a drop dead gorgeous home). I mean I had been grieving for 7 years, I hadn't really had a "Mom" in forever. But to be motherless, the finality of it, hurt beyond my expectations.

It felt like, Now what? People have stopped reading these posts. I completely understand that the readership increased to find out Mom's status but it has dropped off drastically. How do I still advocate and fundraise for Alzheimer's without our mascot?  I don't have any new stories. I don't have any new pictures. I don't have HER. So much of my life has revolved around being a champion for her cause and now I don't have her. 

So I'm okay. I'm working and trying to be the best Mom to my kiddos that have needed me back in their lives. I feel like I haven't been home all of 2018 but living in a permanent limbo of Asheville to Charlotte to Asheville mindset. 

I want to thank my girlfriends for regularly checking on me. Food, wine, random drop offs of strawberries, casseroles, starbucks, flowers. Showing up and sitting here until midnight while I cried my eyes out. Texting to check on me. Texting me about lipgloss knowing that that was a covert secret operation to really see how I was doing, and knowing that shopping on the internet can take anyone's mind off life. 

I still want to write about planning the funeral, and the funeral itself. But I thought I should touch base about me in general. Say a small prayer that we get through her birthday (May 3rd) and Mother's Day this year without too many tears. The Mother's Day stuff is everywhere it seems.

I love all of you. And I promise this wasn't a SOS for wine and cards. Just know that if you have a friend grieving and it has been days, months, or even years...that they still are grieving. Send a text. Check in on them. BB was best at this type of thing. The little things matter.