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”

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 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”

Proud Mama

We’ve been here before.
It’s an all too familiar place.
It just didn’t happen so quickly the last time.
Regression.
The death sentence of Sanfilippo.
The last six months have been rough for Brooklyn.
The last six months have been difficult to watch for everyone that loves her.

Continue reading “Proud Mama”

Courage

cour·age. ˈkərij,ˈkə-rij/. noun.
the ability to do something that frightens one.
“she called on all her courage to face the ordeal”
strength in the face of pain or grief.
“he fought his illness with great courage”
bravery, courageousness, pluck, pluckiness, valor, fearlessness, trepidity, nerve, daring, audacity, boldness, grit, truegrit, heroism, gallantry

The color purple represents “courage” in the MPS world. And many days, I don’t think I have much of it.

Like today.

I realized this morning, that I am struggling to “like” one of my children. Sure, I love her, but I am getting so tired of her “naughty” that I find it hard to want to be around her. Parents, can I get an “Amen”? She hits. She kicks. She talks back. She rips paper. She colors on everything. She is constantly seeking food. She antagonizes her sister, and “mother’s” her brother: both induce crying from her siblings. She is not winning the race for “most liked” in the Boyce home these days. She tells me “no” and “stop it”. All the time. And she want what she wants, when she wants it. Of course, she is way better at school. I even tried to sell her to Ama yesterday.

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updates regarding gene therapy, please read and share

Thank you, friends!
The response to my blog post and Eliza’s video, is amazing! Not only has the video gone viral, it is causing other media attention. Because of your sharing on Facebook, my last blog has over 3,000 views!

Continue reading “updates regarding gene therapy, please read and share”

A cure for Sanfilippo!?

We never put all our eggs in one basket. We learned that in the beginning of our diagnosis when everyone said “this option, that option” would lead to treatment or a cure.  So far, nothing has come.

We also never get our hopes up. At least our hope in earthly things.  We believe Jesus Christ alone is our hope and if He wants to cure our children, He will in His time, in His way.  We are called only to trust Him.

Continue reading “A cure for Sanfilippo!?”

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.
Continue reading “July…a bitter sweet month”

What do you say?

What do you say to parents of 2 children with a terminal illness? I have been thinking about that. And, as one who now fits in this category, I have learned a few things. I used to be aweful with other people when they were grieving. I asked dumb questions and then probably tried to compare it to some less than comparable experience I went through, and then maybe prayed (or forgot to pray) once for the person. I am ashamed to say that, but it’s true. I am sorry. So, in light of that, I was prompted to write this.

Continue reading “What do you say?”