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”

Confessions as I anticipate grief: part 1

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

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“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”

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.

Continue reading “Courage”

Feb 14, 2012 Dr Burton visit

Happy Valentine’s day! We spent the morning down at children’s memorial for the kiddos 3 month check-up. It really has just become part of who we are now…and I have to say, the familiarity of the drive, parking, knowing our way around the building, the shock of it all has worn off.

Continue reading “Feb 14, 2012 Dr Burton visit”