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 Polo.....you 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.

Wednesday, April 11, 2018

I Love You-My Mother's Eulogy

I had long wondered if I would be able to get up and speak at my Mom's funeral. I think the fact that her death was so well prepared for (physically not mentally) and that I had been grieving for so long both allowed me to not break down in Church. Todd and I had a sign and I would give a thumbs up if I was able and a thumbs down if I couldn't do it. 

I wrote this in my head multiple times and it could definitely be improved upon, but I typed it, sent it to a few close confidants to proof and went with it. I think with writing if you wait and tinker too long it will never get published.

"I Love You"

We say it at the end of phone conversations, we say it before kissing our kids and putting them in bed. We
sometimes even whisper it to our favorite Cracker Barrel Extra Sharp Cheddar Cheese or our bottle of Wacammaw Cab.

I Love you.

BB Loved all of you. She loved everyone.

The disease that stole her from us took everything. But it couldn’t take her ability to love. In her final days it
was the only phrase she could say. It had lost its emphatic tone, and some of its syllables. But she said it. Upon seeing my face or my father’s or brother’s. She would muster up the ability from the depths of her heart and tell you….. I love you.

Her love knew no boundaries. She loved with her WHOLE heart. You knew this when she looked you straight in the eyes and told you. It was the type of love a daughter could keep in her pocket and use to shield her from so many awful events that mark the horrid years of middle school and sorority rush. I was invincible with that shield. That mother’s love.

She just didn’t love her family. She loved her friends with a ferocity that enveloped them like family. I
remember as a child my parents always had friends over. She loved their presence and loved having them in her home.

She also loved strangers. Waiters, Bellhops, Gas Station attendants, most recently her CNA’s and helpers at
Aston. If you made eye contact with her she told you. And she meant it. Her massuse, person doing her
pedicure, Starbucks Barista, she loved you. In her words, "love you mean it". 

Her Animals were some of the most loved. First Momus and Roux and then Dewars and Gumbo. Mom and
Roux were the best of friends. On her last road trip, a trip to the Keys, manatees and pelicans were loved by BB too. Almost so much so that a pelican was almost the new recipient of her gold bead necklace.

I went to one of her last Jazzercise classes with her and afterwards tried to thank them all profusely for what
they had done for our family. For befriending our BB in the state she was in. They had confused looks on their faces and one of them approached me and said I don’t think you understand. BB was sent to us. She was our Angel. She told each and every one of us we were beautiful. We were loved. That we were awesome. And sometimes after a long day when you hadn’t heard those words in a while, seeing BB at Jazzercise with her bright eyes and huge smile was exactly what we all needed. She didn’t need us, we needed her.

In this world, especially now in 2018, we need more hearts and souls like BB’s. She loved. Her love touched us all. She made you feel happy, secure, warm and welcome. I hope to love the way BB loved. To my family, to my friends, and to anyone that needs to feel that love.

I Love You.