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”

A look back: Where I am, 2 years in

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This post came through my news feed and it is just as true today as it was five years ago when I wrote it. As we adjust to new normals, God’s Word remains true and steady, even if my feelings waiver. 

 …..

November 2011:
October came and went this year with no mention of it being two years since our diagnosis. And, that is just fine with us. As we settle in to this lifestyle, we have learned to really embrace Sanfilippo as a welcomed friend more than an intruder. Let me be very clear. It pains me to see Jayden regressing. It hurts to see Brooklyn still progressing, knowing those skills will soon be a memory. That is my human desire talking. But, I can spend my days counting down till we lose them, or just embrace them while they are here.

And, although we may never have answers this side of heaven as to why God made them this way, we have gotten to a point where we actually see the many blessings hidden in Sanfilippo. Our children’s salvation is secure. They will never be a part of this awful world. They will never hurt someone’s feelings. They will never judge anyone. They never have to work and have a crummy boss. They never will have their heart-broken. They will never complain that they don’t have this or that. They will never think life is unfair. They will never talk back, get in a fight, or cause a car accident. I will never have to worry what they are doing out past curfew, whether or not they are hurting themselves, partying too much, or being fake at school. They will live their life as a blessing-always living in the moment. They will fade away slowly from this earth, only to lean more into their real home-heaven.
Continue reading “A look back: Where I am, 2 years in”

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”

Painfully Aware of MPS day

A version of this post was published on TheMighty.com

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I can always tell when it’s MPS Awareness Day because my Facebook feed goes purple. Purple balloons, purple hair extensions, purple shirts, purple profile pictures, purple lemonade stands. It’s a day the MPS community pauses from our individual struggles and stands in solidarity to announce, remind, and remember. Announce there is a terrible thing called MPS and we need a cure for it. Remind one another that we are part of something bigger than ourselves and we are not alone.  And remember all the kids that passed away and their families that paved the way for ours.

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Sometimes, we just need our mom.

Jayden barfed yesterday.

Actually, from both ends. When I went in to wake him up for  school he was sleeping in it. Poor guy. Justin picked him up and I aired out his room while he continued to sleep on the bathroom floor.

Continue reading “Sometimes, we just need our mom.”

How to talk to your child about their friends with special needs: parttwo



Thanks for stopping by today! Last Wednesday, we started talking about a few phrases that are gaining traction around our house. These little phrases are helping us navigate conversations with Ellie about her brother and sister with special needs.  And my prayer, is that they help you navigate conversations with your children about their friends with special needs.  If you want to get caught up, you can read PART ONE here.


Continue reading “How to talk to your child about their friends with special needs: parttwo”

How to talk to your child about their friends with special needs: part one


She’s starting to notice.

Ellie is finally at the age where she is starting to recognize that Jayden and Brooklyn do things differently.  And she is asking questions. Good questions.  The problem is, there’s no parenting manual for these type of conversations. Quite frankly, we are making it up as we go. A lot of our friends ask us how to navigate these noticeable differences with their typically developing children as well, so here is the first of two phrases that are gaining traction on our house.

Continue reading “How to talk to your child about their friends with special needs: part one”

how to navigate pain


I just feel sad today.
My heart is a little bit heavier.

He gets it.
Jesus knows what it’s like to anticipate the worst. 

The garden of Gethsemane is in some ways comforting to me. The fact He chose to feel pain gives Jesus street cred. in my book.  I mean, if Jesus would have died peacefully in His sleep, at 100, with His grandchildren singing His praises around him, I may hold a grudge about Sanfilippo.

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taking out the trash: a garbage lesson on Sanfilippo

Ever heard of AV9?
Me neither.
Until Ohio. Until gene therapy headed into the neighborhood of Sanfilippo.
Last Sunday, we packed the kids, the strollers, and the air mattresses. We shipped Ellie to grandma’s and headed off on our seven hour journey to Columbus, Ohio.  We settled into suite 319 at the Ronald McDonald house and thanked God for a good car ride.

Continue reading “taking out the trash: a garbage lesson on Sanfilippo”

#tbt post 2: Sweet Voices

Jayden and Brooklyn spend a ton of time at doctors offices.  Days of being weighed, touched, poked, and tested.  In fact, we just got back from participating in the Natural History Study of Sanfilippo being completed in Columbus, Ohio.  We started in July and this was our six month check up.  I am sure you all want the details because the doctors there are working on gene therapy-a potential cure/treatment for children with Sanfilippo.

Continue reading “#tbt post 2: Sweet Voices”