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.



Here are his words from Saturday:

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


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


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.


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

Confessions As I Anticipate Grief: part 2


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”

Confessions as I anticipate grief: part 1

little dipper

Confessions as I Anticipate Grief is a series of posts I will be releasing on This is part one.


“If people bring so much courage to this world the world has to kill them to break them, so of course it kills them. The world breaks every one and afterward many are strong at the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of these you can be sure it will kill you too but there will be no special hurry.”

-Ernest Hemingway, A Farewell to Arms


Continue reading “Confessions as I anticipate grief: part 1”

From funerals to foster care: A guest feature by Betsy Bicket


Bryan and Betsy are the type of people that should get their plan A. They follow all the rules. They look like and smell like Jesus. Always have, always will. Betsy’s the kind of woman that asked me once if she could just come learn from and be with my kids. Bryan’s the kind of guy that woke up at 2 AM one morning and sent Justin an email just to let him know he was praying for him. They are the type of people who ask how you are doing and really want to know your answer. They aren’t trying to be good, they just are good. It’s as challenging as it is refreshing. 

So when everything changed in their journey, I couldn’t help but watch. How would the they handle life when it stopped going according to plan? How would they handle grief and loss? The answer shouldn’t surprise you-they handled it with Grace and Truth. God took a most dangerous tool, pain, to refine them, deepen them, and shape them more into His image. They were, and continue to be, honest, vulnerable, and unwavering in their faith.

I am so honored Betsy sat down to share her journey with us today.

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Continue reading “From funerals to foster care: A guest feature by Betsy Bicket”

What life looks like after losing a baby: A guest feature by Michelle Jenison



Mother’s day is in a few days.
And when I think of Mother’s Day, my first thought is Hallmark. You know…
The card.
The gift.
The Sunday-after-church brunch where you tell your mother how much you love her.
And, that is wonderful. It ’s the way it’s supposed to be. Mom’s work hard for the family and should be celebrated. Just like father’s on Father’s Day.
But this Mother’s Day, my heart is heavy. A friend just had another failed adoption. Another friend is going through some really heavy stuff with her teenage son. Yet another friend just lost another pregnancy. And today, I got a call from a friend who tragically lost her mother-in-law.
Grieving mothers.
Grieving children.
But this is what Mother’s day is about, too. In fact, maybe this is the best illustration of a mother’s love. Motherhood is just as much about grief as it is celebration. It’s all the love and pain, beauty and mess, sunshine and darkness, all wrapped into one relationship. One title. One person.

So, whether you are celebrating or grieving this Mother’s Day, I think you will appreciate Michelle’s journey.

Continue reading “What life looks like after losing a baby: A guest feature by Michelle Jenison”

#tbt post 1: Jayden

To all my readers:
Thank you so much for taking the time to read and share my blog! I am overwhelmed by the number of comments, likes, and shares.  Your words are such an encouragement to keep writing!
It’s funny. I thought this would be a fun adventure,  but quickly realized after looking for a “first TBT” post this was going to be an emotional ride.  With a regressive disorder, things looked a lot different back then….
So, welcome #TBT!

Continue reading “#tbt post 1: Jayden”