Family Connections
This section will be dedicated to families who would like to share stories and memories, and connect to other families.
“I want you to know that there was a whole lot of people praying for you. People that didn’t normally pray, prayed and people that do pray, prayed harder. You are loved by so many people. I’m sorry that you had to deal with all the medical problems….I thank God for the 16 days that you were with us and I know that you fought hard to stay. Please know that we all love you very much and you will never be forgotten.”
- http://www.freewebs.com/mistideveau/
“On the morning that Shania died it was pouring rain outside, Shania was in and out of a dream like state as her body struggled in exhaustion to breath against this cancer that had spread to her lungs. Her mind was clear when she would wake up, she asked us if it was raining out and we told her yes that it was pouring out. She gave both Karen and I a big hug, at the same time (A hug that I will never forget as long as I have breath in my lungs). Shannon had woken up and came into Shania’s room and Shania told her that she loved Shannon. And not long after that she was gone. Then the sun came out and shined bright for the rest of the day. To me this was a tribute to Shania, that even on the rainiest of days you can enjoy yourself no matter what. It’s what you make of life yourself.”
- http://www.shaniasunflower.blogspot.com/
“Their prayers were answered, and Bennett was given the name ‘NIMKEE’....which means ‘LITTLE THUNDER’.
From now on, when I hear the thunder…...I am to know that it is my NIMKEE letting me know he is near. Coincidently….I have always loved storms…..especially the rumbling of thunder in the distance. I now look forward to many.”
- http://my-baby-is-an-angel.blogspot.com/
“The Josiah Lynch Community Organization was named in memory of our beloved son who passed away from pre-maturity. Though the time we had with him was short, his impact was tremendous; his name is a reminder to continue trusting God, pressing fervently in a matter, hoping for a good end despite the odds.”
- http://www.josiahlynch.ca/
“Before Matthew was 4 years old and Kerrin was 1 ½ we knew that we would have to face the day when our children would leave us. Although there is research and hope for the treatment of MPS IIIA, this did not happen in our children’s lifetime. Given the diagnosis, we made our visits to the hospital only when it could benefit Matthew and Kerrin. Then, there came the time when we could only offer comfort measures and it was our wish to provide this care in the familiar surroundings of our home. Thankfully, we learned about the Palliative Team at Sick Kids. They were able to visit us in our home, explain palliation and comfort measures, then developed a care plan that could be carried out at home with the assistance of caregivers in our local community. There was always someone from the Palliative Team to call for support and guidance, regardless of the time of day. It was not easy and I don’t want to sugar coat it, however I am doubtful that it would have been any easier watching a child die in a hospital setting. Our children have been gone for some time now and we have no regrets!
Those special people who supported us during this difficult time will always be close to our hearts and we are forever grateful for their expertise and kindness. These special friendships are yet another gift that was given by our children.
Good Friday fell on March 25th in 2005, and being a holiday our family was at home together. Matthew was no longer able to tolerate his tube feedings and we had made our decision to provide only comfort measures for him. After lunch that day, our 8 yr old daughter, brought out a song book of “silly songs” and wanted to sing. We all gathered very close to Matthew’s bed singing the songs that were always his favourites. We were all surprised how responsive and alert he was. Later that day, when he had a brief moment alone, he left us. We are so thankful for this special family time we spent together only hours before he died.
Two years after Matthew passed away the same MPS condition took the life of his sister Kerrin. From our experience with Mattie we learned that a G-tube was only a temporary solution and we decided against a G-Tube for Kerrin. She gradually accepted less food but never seemed to suffer from hunger. We gave her frequent feedings of the foods she tolerated easily and liked best, and left the rest up to her. The special times we spent together near her time of death, and all through her life, will always be a gift to all of us.
Although the loss of two siblings was extremely difficult for our younger daughter, we kept her well informed and involved in whatever ways seemed appropriate. The Palliative Team was also able to provide resources and counseling for Lianne before and after the passing of her siblings. She is a compassionate, well adjusted child and life has continued to move forward for her; and for all of us. She is a bright spot in our lives!”
- Cathy Bankert
THE MOURNING AFTER - Written by Marlene Frantz
As if in a dream
Or perhaps unable to wake up
From a terrifying
Nightmare
We came
And kept coming
Till the synagogue could
Barely hold us
And we needed
All of us
To be held
To be comforted
If there’s safety in numbers
We should have felt very, very safe
But the sheer numbers present
Left us feeling small
Vulnerable
Powerless
Confused
And profoundly sad
Later, a simple wooden box
Sliding into loving hands
Still wet with tears
Brought me to my knees
A rag tag group of young drummers
Marched behind and beat out
Their love and sorrow
For their fallen brother
Walking behind them
with his beloved little sister
His mother and father
Slipped their arms around
Each other
Standing in the crowd
As prayers were said
Dirt was thrown
I noticed the young drummers
Still held their instruments
Their silent sobs
Beating a rhythm of loss
And disbelief
Against each thin ribcage
I couldn’t throw the dirt
But watched his brother and father
Robbed of what might have been
Digging with the desperation
Of opportunities lost
Forever
The next day over breakfast
Round hard-boiled eggs
To remind us of the circle of life
He said
Sitting Shiva is so you don’t go
Back into your life too quickly
Seven days to be with the memories
The feelings
I understand it now-
this wise Jewish tradition-
as I awoke today in tears
The mourning after
Will not allow me to step
Back into my life
Or work
Just yet
The mourning after
Tells my heart to take some time
Before stepping out
Into a world without
Zalman
- http://www.caringbridge.org/visit/zalmankatz
