Uncontainable Light: A mother’s love letter from her daughter’s funeral

Oh, beeba.

Brooklyn, Brook, Brookie, Beebs. Beeba-leebs, Beiber, Leeber, Beezel. Sweet B. B. One name couldn’t contain you, but that’s your story, your light was not meant to be contained.

I can’t believe you’re gone.
I can’t believe I am standing here so soon.

Again.

Actually, I can.
You always did things your way and on your time. Continue reading “Uncontainable Light: A mother’s love letter from her daughter’s funeral”

Everlasting Joy: A father’s reflections from his daughter’s funeral

Right after Brooklyn passed, a family friend printed off some pictures from when Brooklyn was younger during a season Justin volunteered with One-on-One, a inner-city Zion basketball camp. During camp, I would bring the kids up and they would run around and make friends with all the coaches and players. Jayden would dribble balls and shoot hoops, Brooklyn would dance and sing.

One of the pictures, now a bookmark in Justin’s Bible, is a picture of B wearing a shirt that says, “My heart belongs to Dad.” Sometimes, I find him fighting tears as he looks at it. They sure share a special bond.

I am not sure if this is true of every family, but it feels true for us. There’s just something different about the bond shared between a mother and a son, a father and a daughter. Not better or worse, more or less, just different. A boy needs his mom and a girl needs her dad. (I know both need both, but you get it.)

Maybe it has to do with protection. A dad protects his girl and raises his son to be a protector. A mother protects her son and raises her daughter to be a protector. Maybe it’s simply because Jayden was like his dad, and Brooklyn was a lot like me.

I don’t know why, I just know it was true for us and impacts how we are grieving.

Justin’s words about his sweet B that he shared at her funeral are so precious and the lessons he learned from her are really lessons for us all. Lessons about living life to the fullest, real heroism, love, and joy.

 

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Continue reading “Everlasting Joy: A father’s reflections from his daughter’s funeral”

I can’t believe you’re gone.

I just want to be with you, B.

I can’t believe your gone. It’s a wave of panic that comes over me every time I let myself go there. Go to the place of full acknowledgement, full awareness, fully present to the weight of your physical absence. 

I am trying, B.

Trying to take one grace-filled step after the other. I am making my bed AND feeling sad. I am showing up and doing hard things. When you are newly bereaved, again, even simple things are hard.  

Continue reading “I can’t believe you’re gone.”

What do we do on Monday after the funeral?

I am so tired.
I feel how Jayden looks-smashed and buried.

This weekend, I think I experienced every emotion God made.

First grade doesn’t stop for my youngest just because her sister died. I thought I missed her open house, but it’s tonight. I thought I missed the bus time, but I remembered they post it online. I thought school started today, but it’s tomorrow.

I’m all screwed up, but God knows.

What do we do on these days?
The days after the funeral?
The days when everyone else seems to move forward and we are left picking up the pieces of our shattered life?

What do we do when the cards and casseroles stop?
When people stop saying her name? His name?
How do we answer, “How many kids do you have?”
Continue reading “What do we do on Monday after the funeral?”

Blue Jays and Laundry: What Grief Looks Like One Month After My Son Went to Heaven

“This is what the things can teach us:
to fall, patiently to trust our heaviness.
Even a bird has to do that before he can fly.”

-Rainer Maria Rilke-

One month.

One month since Jayden has been gone.
One month closer to seeing him again.

My mind is just now beginning to clear, or maybe it’s returning to fog. I am still not sure which is more foggy, the months before and after a crisis, or the days lived in between life’s defining moments. I think it’s the latter, because every decision surrounding Jayden’s passing was so clear to me.

Continue reading “Blue Jays and Laundry: What Grief Looks Like One Month After My Son Went to Heaven”

Jayden’s Service Part 2: A Father’s Love

Dads, get out your notebook. Study his ways. Justin is worthy of being emulated. He is one of the best dads around. Selfless, affectionate, and willing to change diapers with his rough, callous hands from doing man’s work outdoors, providing for our family. He is equally gentle as he is strong. Listening to him talk about Jayden on Saturday was awe inspiring. I am so proud of him and the way he seeks to bring glory to Jesus in all he does.

Jayden loved “my dad” fiercely. This picture was taken days before he passed. Justin had stopped in from work for a few minutes, and received one of the greatest gifts, one of Jayden’s last smiles.

Perfection.

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Here are his words from Saturday:

Continue reading “Jayden’s Service Part 2: A Father’s Love”

Gray

Gray. It’s my favorite color, but not when it comes to knowing. When it comes to knowing, I want answers. I want to know when. I want black or white.

But dying, like living, is full of gray.

…..

As I type, just got an email notification from the middle school Jayden would have been attending if he didn’t have Sanfilippo. It was a reminder about the school dance tonight.

As I type, I listen to the rhythm of his breath. In the background, Mickey Mouse Clubhouse plays.

 

I can’t believe it’s snowing.

I can’t believe it’s November.

I can’t believe my son is dying.

Continue reading “Gray”

What Feels Right

I walked Ellie to the bus stop this morning.

It was 47 degrees. Cloudy. With just enough warm left in the air to make the crisp, cold air inviting. I have really enjoyed the fresh air everyday the walk brings. I find myself craving it. It’s good for my soul.

I held her tiny hand in mine. She told me she’s the “chair helper” at school. If a kid forgets to push in their chair, she pushes it in for them. She’s really enjoying kindergarten. The sounds of spelling, singing about her colors, counting, reading, and playing school has become our soundtrack to this season.

It has felt right.

Continue reading “What Feels Right”

I see you, mama: A word for mothers navigating a different dream

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Sunday, April 23, 2017, I had the honor of keynoting the annual Charles Tillman Foundation’s TendHER Heart Luncheon. This spring 250 mothers of critically and chronically ill children attended a special brunch, which honored them for the sacrifices they make in caring for their ill child. The brunch provided these women with the opportunity to “take a minute” for themselves and enjoy each other’s company and support. 

Here are my words from the luncheon.

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Continue reading “I see you, mama: A word for mothers navigating a different dream”

Confessions As I Anticipate Grief: part 2

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Lately, I find myself having conversations I never imagined. Like the other day with Jayden and Brooklyn’s palliative nurse. Or the one I had with their sister, Ellie, on the floor of her bedroom.

I guess when two of your kids are labeled “terminally ill” these conversations are bound to happen. For those of you new to our story, we have 3 children, the two oldest, Jayden (10) and Brooklyn (7) have a rare and terminal disease, Sanfilippo Syndrome. Our youngest, Ellie (4) is does not.

This piece is part two of a series of blog posts entitled, Confessions as I Anticipate Grief.

WARNING: Friends in painful places, especially for my “me too mamas,” my Sanfilippo sisters. This is a difficult read. I wouldn’t have read it even a year ago. It just depends on where you are in your diagnosis. Just know it is here when you need it. But, I am 7 years in and this is our reality. A tough, gut wrenching, honest, reality. Sometimes it can be too much. But isn’t it all?

My intention is to share truth. Here’s what I promise if you choose to read. You will see me rise. Just like you are rising. We are not just surviving, but thriving in the midst. Death doesn’t win. We don’t drown. I am tired of trying to avoid the darkness, because light is so much brighter when we acknowledge how dark it is. Thank you for showing up in the meeting for a club you never wanted to join. Since we are all members, may these be our words.  Continue reading “Confessions As I Anticipate Grief: part 2”