Posts tagged with: Grief

Acts of Kindness: A Wizard of Oz Surprise in Memory of Chloe

July 29, 2011 by Victoria Strong
Last Friday Gwendolyn received a surprise package in the mail. I already told you about the special Wizard of Oz tea set and boy does she love this. But the gifts also included a set of Wizard of Oz dolls and a Wizard of Oz sticker book. Now to say this was a hit is an understatement. When...

Having a hard time

June 16, 2011 by Victoria Strong

Having a hard time.

I don't know if it is the June gloom or if being in the hospital has messed with my mood, but I'm in a funk. And it's a low one. The reality of SMA is weighing heavily on my chest like a load of bricks and I'm having trouble catching my breath.

For such a long time we've...


Saying Goodbye

May 02, 2011 by Victoria Strong
I've been a little quiet around here and that is because I've been saying goodbye to one of the most important people in my life -- Grandpa Harry. Losing Harry (and yes, I called him by his name -- everyone did) has been extremely hard. There aren't many men like my grandfather -- he was truly...

Grandpa Harry: June 27, 1905 - March 30, 2011

April 01, 2011 by Victoria Strong

Harry Reese Gillespie

June 27, 1905 - March 30, 2011

My grandfather Harry passed away this week and I am devastated. He was 105 years old and while I know this is the normal course of life, this is an enormous loss for me and anyone who knew him. He was kind, thoughtful, generous, insightful and has...


Thinking of Jonas

November 22, 2010 by Victoria Strong

On Thursday night we learned that our dear sweet special friend Jonas Coleman had passed away -- a gorgeous blue-eyed almost 3-year-old darling little boy. Tomorrow is his funeral. And we are heartbroken.

And while I try to sit with the thoughts of him now being able to run free, of him no longer...


In Memory of Eli, Stephen, and Logan

August 17, 2010 by Victoria Strong
I want to tell you about some very special people. Very special families who even after losing their treasured children keep fighting. It isn't easy. Grief does many things to people. Living in the SMA world, we are witness to grief in its varying forms -- constantly. It impacts the entire family...

Off Kilter

August 13, 2010 by Victoria Strong

So I am having one of those weeks. I just feel spent, emotional, lump in the throat. Gwendolyn is doing okay -- not 100% yet -- but thank goodness not going down hill. We have had a few choking scares and I don't think I will ever get used to saving my daughter's life. And there is the anxiety of...


Missing Grandpa Harry

July 16, 2010 by Victoria Strong
I'm home from visiting Grandpa Harry. I had a wonderful time being with him and I feel more whole for just spending a few days being next to him. Harry is one of the most influential people in my life. He loves me and dotes on me like any grandparent does, but our bond is so much more. Harry "gets"...

Makenzie’s Live, Laugh, Breathe Event

June 01, 2010 by Victoria Strong
I often wish that SMA had never entered my life, that I never knew any of this pain, that I didn't have to face any of this. And as often as I so wish I could wipe my SMA slate clean, in all of this, I have met some of the most incredible people that I have ever known. People who have faced...

Heading To Stanford For Trilogy 100

May 13, 2010 by Victoria Strong
We'd be lying if we said everything is A-ok in the Strong household. It is not. And while we know we are in a very precarious situation with Gwendolyn, we are hopeful. We have a plan. Team Gwendolyn is in full force!

Gwendolyn had another episode last week. She didn't completely stop breathing, but...



April 23, 2010 by Victoria Strong
Gwendolyn is doing okay. Apart from worry and insomnia, we are recovering...but it has left us all in a fog. Bill is exhausted.Gwendolyn wants her bipap all the time, which seems more psychological than an actual breathing change. And I start something and completely forget what I am doing. We are...

Scary Saturday Morning

April 17, 2010 by Bill Strong
I'll preface this by saying that Gwendolyn is okay, but this is a Saturday morning that we'd like to reflect on, learn from, put in perspective, and put behind us.

This morning Gwendolyn stopped breathing, turned completely blue and cold from head to toe, and was lifeless for several minutes.We...


All I Want For Christmas…

December 13, 2009 by Victoria Strong
All I want for Christmas is....

Hope for my child.
I dont dream of her walking.
I dont wish that she could climb a tree.
Those things are lovely, but we could manage life in a powerchair...
and I know my little fighter would rise to the challenge with a smile.
No, my wildest dreams are simple.
I wish my...


November 13, 2009 by Victoria Strong

I don't know why, but I woke up filled with grief today. Nothing happened. Gwendolyn is fine. But some days it is just hard not to feel the heaviness of grief...not to feel overwhelmed with sadness. No matter how many we have met, I've never become used to meeting another sweet family newly...


Gwendolyn visits Grandmommy DeBard

June 30, 2009 by Victoria Strong

This afternoon was difficult. I knew it would be when planning this trip, but it was something that was very important to me. I took Gwendolyn to meet my mom. The last time I was in Palestine, it was to bury my mother. That was ten years ago this August and I still miss her desperately. My...


In Loving Memory of Beau Coogan

May 01, 2009 by Bill Strong

Gwendolyn released her favorite dragonfly balloon today in memory of her buddy from Australia, Beau Coogan, who lost his battle with SMA last week -- just 10-months-old. Please keep fighter Beau and his parents in your thoughts and prayers. We've been touched by their journey with their precious...

Happy Birthday Owen

March 06, 2009 by Victoria Strong

This week Owen Schuler would have celebrated his first birthday -- if he had not been born with SMA. This week his parents would have thrown a party filled with laughter and joy. But, instead, this week is a time of mourning for his sweet parents because Owen passed away at only five-months-old.



August 17, 2008 by Victoria Strong
Bill and I are heartbroken. Tonight we learned some very sad news. Owen, a darling 5-month-old baby boy, lost his fight with SMA. We have been corresponding with Owen's lovely family and really feel connected to them. We know there is nothing to we can say to ease their grief. There is nothing...

Popular Posts



June (1)
April (1)
March (1)
October (3)
September (1)
April (1)
March (1)
January (2)
December (1)
November (1)
October (1)
September (2)
August (2)
July (1)
June (1)
May (1)
April (2)
February (2)
January (4)
December (2)
November (1)
October (2)
September (2)
August (4)
July (3)
June (2)
May (1)
April (2)
January (4)
November (3)
October (3)
September (3)
August (3)
July (3)
May (1)
April (1)
March (5)
February (2)
January (2)
December (2)
November (3)
October (3)
September (3)
August (4)
July (2)
June (4)
May (3)
April (4)
March (3)
February (5)
January (5)
December (3)
November (8)
October (4)
September (5)
August (8)
July (7)
June (8)
May (8)
April (9)
March (7)
February (9)
January (9)
December (9)
November (16)
October (15)
September (14)
August (15)
July (16)
June (13)
May (27)
April (22)
March (21)
February (20)
January (21)
December (19)
November (22)
October (16)
September (23)
August (23)
July (27)
June (24)
May (24)
April (21)
March (26)
February (19)
January (24)
December (21)
November (20)
October (31)
September (25)
August (25)
July (47)
June (44)
May (34)
April (27)
March (35)
February (35)
January (35)
December (37)
November (22)
October (31)
September (20)
August (30)
July (27)
June (18)
May (5)
April (6)
March (3)
February (1)
January (2)
December (7)
October (1)