I’ve held this heaviness in my heart over the last few days. Work has been keeping me busy over at ANGEL AID as we are knee deep in our biggest fundraiser of the year for our rare caregivers. I couldn’t be happier to contribute to the programs and efforts to raise funds and awareness for these women (and men) who have become my people in recent months. Also, it’s a great, much-needed distraction.
But this heaviness. Oh, this heaviness. It’s weighing my heart and soul down, y’all. It’s not lost on me that this heaviness is always there now. For exactly two years, it is always there, bubbling beneath the surface. This feeling of not being able to fully breathe. Not being able to really relax and let go. Always having this elephant in the corner of every room I enter. I feel like I should just give the elephant a name and welcome him to the family at this point. He’s always there. In the shadows, daring us to try and ignore his presence in our lives.
This elephant in our lives is the metaphor for a life-changing rare diagnosis for both of my daughters. It came exactly two years ago today and has rocked every aspect of our lives. I won’t walk you through all the details of that diagnosis. If you’ve been around a while you already read my diagnosis day piece. If not, Now’s the time. I’ll be here when you return.
How do we mark this occasion?
I went to bed so late last night that it was technically today, October 15th. October 15th is a date of monumental significance. It’s an anniversary of sorts. But it’s not one that we celebrate. Not exactly. It’s not one we mourn. No, that wouldn’t be right either. So what is this day to mean to us now?
This day marks the beginning of the change of trajectory of my life, and me wishing for the ignorance I enjoyed before we knew better. Today is a day I am equal parts grateful for the incredible team we have fighting for my girls, and devastated that we need them. Like all rare parenting, today is a mixed bag. Ups and downs, joy and grief, hope and despair.
One thing I can say that has definitely surprised me is that we are doing it. We are getting through it. Two years ago I thought our lives were irreparably destroyed and nothing would ever be OK for any of us ever again. The diagnosis came later in my girls’ childhoods and we were completely shocked by the revelation. We had no idea how to pick up and go forward. All the dreams we had for the girls seemed to go up in a puff of smoke and we didn’t think we could ever make the world right for them again.
This life is messy, friends!
Today, I’m reminded that things don’t have to be perfect all the time. Life is messy and that’s not always the worst thing in the world. We are all learning to navigate their new(ish) diagnosis with their even newer adulthood and, boy, is that messy. I wasn’t really prepared to be so involved at this point in their lives. I wasn’t really prepared to be looking after them the way I do now and will continue to. It’s exhausting and often overwhelming. And I wouldn’t want to miss a moment of it. Not one single second.
Sending your child into brain surgery, endless scans, more brain surgery, and specialists gives you a deep appreciation for each and every moment you are blessed to have with them. So many of my village are left with memories to cherish as they love their child who has left this world. I hope and pray I never truly know what those men and women live with day in and day out. It’s something I cannot fathom and so I choose not to think about it. I have that luxury and I am truly grateful for that.
Rare children give us strength and they don’t even know it
This life and watching them fight through every setback also gives me renewed energy. No matter how tired I am, I will NEVER stop fighting for my girls. I will NEVER stop caring for them. And I will NEVER stop searching for a treatment for their diagnosis. NEVER. Their fight is my fight. Those who walk in my shoes know that I would take this on for my children if I could and the fact that I can’t is a special kind of hell I live with. Just shy of unbearable.
My girls are stronger than they should have to be. To say that I am immensely proud to be their mother is the understatement of the year. Their fierce will to not only survive but thrive in the face of the obstacles thrust at their feet inspires me to keep going every day. Their fearlessness and tenacity pushes me in the work I do to raise awareness and funding for CCM treatments and cures.
On this day, the anniversary of the most disruptive day of our lives, I decide to celebrate the wins and mourn the struggles. I decide to honor my daughters in their joy and their grief.
They are what pushes me to plan this 2nd Annual Walk. Our first one last year went so well we decided to do it again!
How can you help?
- Donate to my fundraiser
- Show up and walk
- Share my link
- Donate items or services for our silent auction/raffle
Reach out with any questions or to get more information. firstname.lastname@example.org