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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Character Over Coloring: A Lesson On What Really Matters

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Can I tell you guys a quick story?

A few days ago, I walked into Ellie’s preschool to pick her up and saw these scarecrows on the wall. Each child was given a plate and told to make a face on it. They were great. The kids had drawn two eyes, clean lined mouths, and button noses. Pretty impressive for four, until I noticed Ellie’s. Her plate was covered in random purple, gray and pink scribbles.

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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. 

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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.
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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”

Margin for what matters

 

In November, I resigned from my dream job at Immanuel Church as the Director of Environmental Design. My last day is Jan 3.  It was one of the hardest decisions I’ve ever had to make. I have worked at Immanuel since 2007 and I loved it. Like, loved it, loved it.  It made me feel smart and creative, important and part of something bigger than myself in a way laundry and dishes can’t.  My job titles and responsibilities changed almost as frequently as my living room decor, and that is what I loved almost as much as I love the staff.  Continue reading “Margin for what matters”

July…a bitter sweet month

July marked a season of change for our family. This month, we found out Elliotte doesn’t have Sanfilippo. It came with mixed emotions. On one hand, we were happy for Elliotte and the excitement of firsts we will be able to experience with her. On the other hand, it brought new sadness for our kids. I think I mentioned in previous posts this experience in length.  Elliotte is a reminder of all the things Jayden and Brooklyn can’t do, at the same time, we celebrate she will be able to do new things!  It is hard to say the least.
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June 2012…recap

June 1: Jayden graduates

My little man has “graduated” from Kindergarten! Time sure flies.

Still on pain medication, I made my way from the hospital, after just giving birth to Ellie, and sat myself in the packed gym on a metal chair to watch my son graduate. I treasure this moment.  Jayden even got a special award for being a good reader!  My sweet husband stepped in to  be Jayden’s 1-on-1 aide for the program (she was unable to make it). He sang the songs and moved Jayden’s hands to the moves.  It was such a special moment. With every milestone that passes, we endure the sadness and the joy. On the one hand, we are sad it is passing. In the same breath, we are overjoyed that he is still here.  Many of our conversations start like this….”Remember when he could…..and end with, I am glad he is still…” Bitter sweet are these moments indeed.

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May Updates….in November

Trying to catch up….

May 5, 2012: Kalie’s Shower

 

We had a great time hosting Kalie’s shower (Justin’s cousin)! The decorations were so fun to make and the food was great! Our theme was the “oh, the places he will go…” based on her travel themed nursery. We had luggage tags as favors, and decorated with maps, green and blue. We did it open house style, which I thought was so nice so people could come and go as they wished.

Continue reading “May Updates….in November”