Posted on by MyBeautifulMigraine

Text to my dear friend in Hospice

I’m pre-apologizing for the novella… no need to read it all if it’s too much and no need to respond. I know you’re weak, I know your time and energy is precious, and the LAST thing I want to do is “make this about me” >>b o r i n g<<

But my dear friend,
There’s something I want you to know.

I’m so so sorry I wasn’t always there for you the way I wish I had been. I hate that life—the kids, all the “stuff,” and my own chronic health struggles—so often got in the way. I’ve thought about that more times than I can count… throughout all the years we’ve known each other. You were this special anchor to my new home in Austin 14 years ago, and a light that helped me so much… I was NOT all alone! I found a real life person – and a FUN one too – with a twisted sense of humor – like my own  – with the same struggles I was navigating!

I remember standing with you outside Relax the Back in the Galleria for US Pain Foundation – you were an Ambassador – I orbited your stardom!⭐️ Was there nothing she could not do!?

PLEASE DON’T HEAR THIS AS GUILT. Hear it as LOVE and ADMIRATION.

You are a KINDRED spirit to me – a sister from another mother. From the moment we met, I felt that. Your kindness, your determination for advocacy and community, your incredible creativity, your gentleness, your strength, your heart… they’ve always meant so much to me.

And now I’m thinking of how you would spend hours daily with cupping, stretching, fascia work – my husband and I use our little Ashley Black tool you recommended so long ago… although truthfully, husband uses it way MORE than I! 😂😂 And I’m thinking of our chronic illness group meetings at the library… especially our little group laying on yoga mats enjoying a sound bowl performance🙌🏼 Sound bowls! The stories I would share with husband: she said this today, and we talked about that, blah blah blah. And then our group lost Betty… and you were THERE for her… always showing up – just like my sweet friend always does❤️

We weren’t exactly the same… you needed to lay in a very special, precise way in bed every night while I curled up in a side fetal position always with ice head wrap and went out cold into promethazine 10 hour mini comas😂

I really HOPE you’ve always known somehow, how deeply I’ve LOVED and ADMIRED you, even during the seasons when I couldn’t show up as often as I wanted.

Now I’m thinking of how I would tease you about printing out directions on PAPER instead of just using your phone’s GPS😂 and your PAPER CALENDERS – “Girl, just enter the appointment into your phone calendar!” 😂😂 and how it was always easier for you to call instead of text me… I miss those calls💔 I miss them so much (since you’re no longer able to speak) and I try to remember the last call… I know it was when you were pretty sure your diagnosis was bulbar ALS… and my heart stopped… no, NO, NO, not that, no…💔 I couldn’t be hearing this!

Thank you for being my dear friend. Knowing you has made my life SO MUCH richer, more inspirational… and I couldn’t be more grateful.

You have changed me forever, and I will carry pieces of you with me for the rest of my life. I will never say goodbye, because I will continue talking to you whenever you care to listen… I will ask your opinions and advice when I face questions – big and small. I will talk to you about your children. I promise I will not overwhelm them, but check in whenever they allow me. I will continue to stay a part of the ALS Facebook community you started… praying for the members and offering my support carefully. I may dream of you – feeling a sense of a little visit – I welcome visits! I will listen. And I WILL see you again because I don’t do goodbyes… you are simply too important to me.

I love you.❤️

Original art, Jennifer Landis @composedchaos_artbyJen
Posted on by MyBeautifulMigraine

A Mama’s Greatest Christmas gift

Tonight, as I lay my head down (and listen to Marc’s soft snore); the chicks are ALL in the NEST: Corey, Nick & Iris, Robyn & Liam… and Ken & Courtney (just 30 min away in Austin Town) will be here with the babies Christmas day.
TRULY, this is THIS mama’s MOST wished-for Christmas gift  I can’t yet sleep; I am SO HAPPY and my heart is SO FULL.
Memories flood my mind of the years and years of God’s privilege of raising such remarkable humans with my amazing partner and the best father in the world: infancy, toddlerhood, school age, the teen years, and finally, college time… We did it together – teammates always.
As they grow and soar, these moments of all-together-ness become more and more rare. There are SO many ot them: FOUR! And I was prepared for this time (but we are never, REALLY prepared)… it is my greatest wish and privilege to see them become independent and break ceilings, find partners to love and who love them… I am the proudest of mamas.
If they allow me to snap a great FAMILY PHOTO on our steps again this year, I’ll be over the moon and Christmas cards can go out!
They are HERE; they are HOME… everything else is just confetti.

Posted on by MyBeautifulMigraine

Those moments you never forget… because an angel intervened

There are moments in my life when regular people have done extraordinary acts for me. And I don’t believe these everyday angels have any idea how they’ve blessed me.

The day Dawn was an angel.

Dawn is my age and the owner of a home cleaning team that helped me out once a month. Dawn is a special person; she works so hard at her company and struggles daily with her own health autoimmune conditions. It was a time of my life when I was realizing raising 4 young children, working part-time as an RN, and starting to understand that my migraine disease was now becoming chronic. I had been cleaning my own house, trying to juggle life and dancing as fast as I could… I fell ill with a horrendous case of Shingles that crossed 8 dermatomes on my left side. I have always said that Shingles illness was a message from God Himself; He yelled at me that I needed help; I could not do it all alone, and I needed to hire cleaning help. When the cleaning team arrived once a month, I would scurry like a mad woman the night before trying to tidy up so the cleaning team could actually clean the house the following day. Most busy moms know what I’m talking about. The precleaning cleaning for the cleaners!

Anyway, when the cleaning team arrived, I would always take the opportunity to do the laundry while the team scrubbed and made the house shine. I felt like I could at least look busy while they did all the tough work. And oi, with 4 kids and a husband, I had a LOT of laundry. About 5-6 large loads would end up piled high on the living room couch, and I would fold fold fold and place in towering piles. Usually, the cleaning team was done WAY before I was done with all the laundry!

There was one day in particular that always sticks in my mind: I was trying to do all the laundry while the cleaning team worked, but I had a blinding disabling migraine. I just could not function even though I desperately wanted to look productive and be productive alongside my wonderful cleaners. But it was just too much. I caught Dawn on the side and told her: “Dawn, I am so sorry, but I have to go to bed… this migraine is absolutely debilitating. I am so sorry.”

Her face and response were complete understanding: “Of course! Go to bed! We’ve got this!” And I left their payment check on the counter and went to bed, wrapping my head in ice.

The cleaning team continued to clean around me… the upstairs bedrooms, the kitchen, the living/dining room, dusting, vacuuming, the master bathroom, the master bedroom, and all the floors.

They were done in a couple of hours. Dawn tiptoed into my bedroom, where I was under the covers incapacitated. She lovingly and softly touched my hand and whispered to me: “Donna, we’re all done and leaving… we’ll lock the front door behind us. I hope you feel better soon, sweetie.” I mumbled an acknowledgment, but it wasn’t nearly as heartfelt as what I was feeling.

Dawn saw me that day. She truly understood how much I was hurting. And I remember what I felt that day… she spoke to me with such amazing kindness; like a mother talking to her child. And my heart was so moved. And I was so incredibly grateful for her kindness, for her love, for her care. And I don’t think I ever really thanked her enough for that moment. She’ll never comprehend how grateful, overwhelmingly grateful, I was for that moment. Thank you, sweet Dawn. Thank you, thank you, thank you. I don’t know how I can ever thank you enough.

* * * * * * * * * * * * * *

The time my brother Glen was so kind.

My entire family came to town to celebrate my oldest son’s high school graduation. It was a busy time. I had been slowly and step-by-small-step planning a graduation party for my son. I was running on immense adrenaline… determined to pull off a fun party and enjoy every moment and my family. It was a big party – at the community clubhouse with catered food, popcorn machine, music, drinks, a photo booth, a beautiful cake, pictures displayed of my son from babyhood to adulthood… approximately 50+ people attended! The graduation was on a Friday evening and the party was on the Sunday after and it was a glorious party success… everyone seemed to have a great time! Most importantly, my son!

One of my biggest migraine triggers is let down after stress. And I’d been dancing fast on the adrenaline the entire week/weekend. After the party, we cleaned up the clubhouse and transported everything, including gifts, back to our house in a jumbled mess. I would sort it all out later in the coming days when family and friends left and flew home to their many different locations.

While everyone was still visiting in the house and enjoying each other, I slipped away to bed. I got into my PJs, wrapped my migraining head in ice, and put my ice booties on to treat my RA flaring feet. I tried to do the Isish Goodbye; I would just slip out of sight while everyone else enjoyed their time. It was about 7 pm. But my mother and my 2 older brothers sought me out and found me in my bed. I smiled and encouraged them to go join the fun in the other room. My mother and oldest brother, Dave, understood that after such activity, I was completely out of commission. But my second brother Glen had never witnessed me like this. I could see the shock and concern in his eyes, and it broke my heart; I wanted to assure him this was totally NORMAL for me. But he didn’t understand; he doesn’t understand someone living with incurable alignments like Chronic Migraine and Rheumatoid Arthritis. My mom spoke softly to him as all three of them stood at the end and side of my bed: “She’s been under so much stress and needs to recover. This is what happens to her.” (Then my mom probably relayed a story from her own life because that’s what she always does.)

Seeing the impact in Glen’s eyes undid me. I wanted to hop out of bed and be just fine for him. I wanted to do that; but I just could not. I smiled at him through my pain and tried to say something to assure him this was perfectly normal and he didn’t need to worry; he could just join in with the others in the living room. “Don’t worry about me,” I smiled at him.

At that time, Glen reached for my feet and started to massage them gently. He was trying trying to help. The love he gave to me at that moment. The concern in his eyes… it moved my heart in ways I can never express. He gently massaged my aching feet. A moment I felt seen and completely LOVED. And I can not thank my dear brother enough for that moment… for that love and concern. I’ll never forget the way he affectionately rubbed my feet. He saw me. He saw my pain. He saw my reality. And it broke my heart that it broke his heart. My sweet big brother. I will always remember that moment. Glen was an angel that stood at the end of my bed and massaged my aching feet.

#ChronicMigraine #RheumatoidArthritis #impactofChronicIllness #ChronicIllness #everydayangels #grateful #blessed #speakyourmigraine #ChronicMigraineAwareness