Brain Aneurysm Awareness

Here, There and Everywhere

~ sandibrooke ~ 7 Comments

Our family has covered a lot of ground on our journey through the grief of losing Brooke. Along the way we’ve made all the usual stops. Shock. Denial. Anger. Bargaining, etc. As for Acceptance… I think it’s more of Acknowledgement. We Acknowledge that we lost Brooke to a congenital birth defect called a brain aneurysm/AVM. We Accept that there was nothing we, or any doctor could have done to prevent what happened to her from happening. We Accept that God is holding her hand in heaven, and that she is holding our hearts here on Earth.

Our family has covered a lot of ground in the literal sense, too. All the way from California to North Carolina. Our journey took our little family to the Grand Canyon and Route 66. Through a solar eclipse and, finally, to the street where we now live, aptly named Brookfield Place.

Moving cross-country was something we never planned. But if there’s anything we’ve learned in the past two years, it’s that life seldom goes to plan. So when a great job opportunity came up for Brenn, along with the chance to slow down a little with shorter commutes and a more reasonable cost of living…the choice became perfectly clear.

Our new neighborhood feels like something out of a storybook. A street full of kids who are outside playing ball or fishing in the nearby pond. There are tree houses and trampolines, and amazing neighbors that invited us to dinner the day we pulled in, road weary and hungry for something besides rest stop food.

But we were hungry for connection, too. We told the families on our street immediately about Brooke. The next day, the most beautiful thing happened. Our neighbor came by with a housewarming present. It was a purple, sparkly butterfly lawn ornament.

“We want you to know that Brooke will always be part of your family,” she said. “And this butterfly represents your beautiful Brooke.”

She had no idea at the time that butterflies and purple are two symbols that we always associate with Brooke.

Last Friday I had lunch with a mom I previously only knew from an online parent support group for kids with aneurysm and AVMs. Her gift to me… another butterfly for our lawn.

People ask us if it was hard leaving our home, if we felt like we were leaving Brooke behind. It’s actually quite the opposite. As I always told both kids, “Home is where your family is.” Our family is in North Carolina now. And Brooke is most certainly with us. I’ve told people that I literally feel Brooke when I stay in the light. I feel like our family is floating in the sea of Acknowledgement, with Resilience as our life jacket. Since moving here, we’ve felt the peace of her presence, and the warmth of her light.

Butterflies are a symbol of Brooke. And this one spent about 20 minutes with us the other day. She landed on my arm first, and then flitted over to Blake’s shirt where she stayed, quite comfortably, until a gentle breeze took her up and away.

Our journey continues, as does our story. But one thing’s for sure. She’s here, there and everywhere. Because Brooke is always with us wherever we go. Forever.

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Forward March

~ sandibrooke ~ 1 Comment

March, you’ve exhausted us. While you used to be a month of milestones to celebrate, you are now an annual reminder of what we’ve lost.

Our 14th Wedding Anniversary: We are still (and will remain) in the habit of marking how many years we were married by knowing Brooke arrived just one year later.

Brooke’s 13th Birthday: We went “big” this year with kindnes activities at the elementary and middle schools, random acts of kindness cards, and even a birthday gathering for her friends where we painted rocks with inspirational words and reminisced about her birthday parties. This was no birthday party, but we ate Brooke’s favorite cupcakes anyway and they tasted just as sweet as we remembered her.

My Birthday: I always told Brooke that she was my birthday present (and still is). Last year I threw lemons at our backyard retaining wall while sobbing loudly. This year I wept softly as I blew out candles on a creme brulee with my mom as well a chocolate cake baked just for me by a sweet little girl. I had lunch out with friends and enjoyed a birthday weekend of treats and shopping with Brenn and Blake. I’m finding that when I allow people into my heart, it feels a little less broken, just for a little while.

March also marks the beginning of baseball season, making it impossible to hide inside my home or car. Our Little League field is a hub of excitement, with “whole” families and pure joy. This year, I’m able to stay in the moment and enjoy the sense of community that baseball brings.

March also marked advocacy day for brain aneurysm research and, while we couldn’t make the trip to Washington, I shared a lot on social media and even made my first call to our congressman.

But March, I’m tired. I’m tired of dragging myself out of bed every morning and facing another day without Brooke. I’m tired of all the purple things we keep creating and receiving, the cards, notes, photos and other gifts that serve as constant reminders that she is no longer here. Her room is full of boxes of these things. I think that’s where they belong. And every time I put them in there, I tell her how much she is loved.

So goodbye, March. Although you’re gone for another year, we really don’t need all your milestone events to remind us about Brooke.

Because Brooke is loved forever. Because Brooke lives inside each of our hearts as we remember her sweet smile and her silly laugh. The way she sang songs just a little off key on purpose, the way she danced and twirled everywhere she went. But mostly, we just remember how Brooke made us feel. And that is something that will never leave our hearts. As we March forward, we take that with us. Always.

What’s Luck Got To Do With It?

~ sandibrooke ~ 2 Comments

Some people seem to have all the luck. They’re the ones with the winning raffle tickets, and their names get pulled out of the hat first. Some people are lucky in love, while others are lucky in looks.

But lately I’ve been wondering about bigger things, and if luck has anything to do with it. Brooke had a brain aneurysm. That’s bad luck. And although statistics say it’s likely that one in fifty people have an aneurysm,  most of them don’t burst. Double bad luck. On top of that, brainstem aneurysms, where Brooke’s was, are typically not survivable. Triple bad luck.

So why did Brooke have such bad luck? I have no idea. But even Brooke would laugh at how she never won anything. In board games, random drawings…that type of thing. I have bad luck too,  so we laughed it off together. I guess, in a way, we still share that bad luck. I lost my daughter, she lost her life.

There are things in this world we can change, and things we simply cannot. We never, ever could have known that Brooke had a brain aneurysm. While some aneurysms have symptoms, Brooke’s had none. We also have no family history of aneurysms or stroke. Doctors tell us it was likely congenital, meaning she was born with it, and that we were lucky to have her as long as we did. She was also a perfectly healthy child right up to the unexpected burst. In the past ten months I’ve connected with other parents who have lost children to brain aneurysms and AVMs (a similar vascular disease). Some children are the same age as Brooke, some are younger. My heart breaks for them all, and when I talk to a mom who lost her child at a younger age than Brooke, I feel lucky.

I also feel lucky that, of all the daughters in the world, I got Brooke. Because Brooke was the best daughter a mother could have. I just wish I had been lucky enough to have her longer.

September is Brain Aneurysm Awareness Month. October is AVM Awareness Month. If you have a family history of aneurysm, AVM or stroke, talk to your doctor to find out how you can screen yourself and your family for this disease. You can also visit http://www.taafonline.org/ to learn more.

Luck, or lack of it,  had everything to do with why we lost Brooke.  But some aneurysms and AVMs are treatable. And by raising awareness, it is my hope that those with this disease are lucky enough to be in the care of a well-informed medical community.