Record humidity

I spent part of yesterday’s idle moments worrying about what to write… And then most of today’s idle moments still concerned that I didn’t have a subject that sparked any great enthusiasm or flicker of promise that “this one is the best post yet!”. And then, in the afternoon, I received a call from my husband who said that we’d broke a record: Never before did Winnipeg ever hit +47 with the humidity. When you walk outside from a luxuriously air-conditioned office, the heat knocks you like a punch in the face, and it feels like the air doesn’t have enough oxygen for your lungs. I therefore blame the weather for quashing my creativity, and drying up the ink in my pen.

Nonetheless, in times when I would rather complain, I think of things that I’m grateful for:

• a wonderful husband
• a caring family
• kind friends
• the chance to be the godmother of a wonderful godson
• books to read
• recipes to try
• projects that I love doing
• summer dresses
• refreshing showers
• 6 in the morning jogs
• flowering plants and creeping vines…

Leo Babauta over at Zen Habits writes wonderfully, and a recent post highlights gratitude. In case it’s a bad day, weather-related or otherwise, Life Hacker gives a few ideas on how to Get Happy in 60 minutes. Do you have things you are especially grateful for?

How to live day to day after a transplant

Perhpas no one knows better how to live day by day after their child receives a transplant, than David and Jasmina. I was reminded of their resilience last week after a cheery call from Jasmina. Jasmina was talking from her cell phone, while taking Sébastien outside for a walk. “He always wants to get out and to move!” I could hear the wind and the busy streets of Toronto. So, how do parents adjust after their child has a transplant?

Transplant Living has some excellent pointers:

Focus on the joys and accomplishments of today
“Sébastien is doing good! He’s using his left arm more and more. It’s a big improvement if you think that a week ago, he couldn’t even move it!” Jasmina tells me. Not a person to spread bad news, Jasmina concentrates on finding the good things, or making light of challenging situations.

Join a support group or form a relationship with a family facing a similar situation
This is perhaps the blessing for David and Jasmina to be at SickKids. There is a special feeling of empathy and kindness there from families with sick children, to the cleaners that make their daily rounds.

Research and ask questions to learn all you can about your child’s condition and potential therapies
“There are 5 treatments Sébastien could receive…” (for his autoimmune disorder) and Jasmina detailed a list that later I found on the internet:

Corticosteroids – drugs to reduce the activity of the immune system.
Intravenous immunoglobulin (IVG) – the antibodies are ‘caught’ by the IVG and culled from the bloodstream.
Plasmapheresis – the blood is filtered through a special machine that removes approximately 60% of the antibodies in blood plasma.
Splenectomy – surgical removal of the spleen. (Sébastien’s spleen was already removed during the transplant)
Chemo – used to stop the production of antibodies.

Presently, Sébastien receives both plasmapheresis and chemo, the latter on the weekend. I am amazed sometimes, considering the complexity of Sébastien’s case, at how David and Jasmina implicate themselves in Sébastien’s treatments. 

Be easy on yourself when you’ve had a bad day
Call a family member, call a friend, read a magazine on another subject, or take an hour off to do something else.

Learn about your child’s special financial and educational needs
Considering Jasmina has already raised the subject of preschool, she takes Sébastien’s education to heart! Financially, it has been especially wonderful for them to be able to apply to the David Foster Foundation. David and Jasmina have never been afraid to apply to foundations… after all, isn’t that what they’re there for?

Don’t be afraid to ask for help
Considering that people are almost always willing to do anything, makes the asking a bit easier… At SickKids the parents on the ward will tell each other when they’re going shopping, and the favor is always returned.

Schedule and spend special time with your spouse and other children
David, Jasmina and Sébastien enjoy to the fullest the occasional outings with cousins, family members and friends around Toronto. Jasmina always strives to have Sébastien interract with other children, as much as his condition allows.

Being a parent is one thing, and being the parent of a child recovering from a transplant is another. Priorities change and “normal” takes on a whole new definition. It takes courage and patience, and David and Jasmina are fine examples of it.

Writing for the BlogCatalog Organ Donation Awareness Campaign

One year ago, August 11th, Jasmina received the call. It was a day like any other. I was at work and during the noon hour, Jasmina and I had talked over the phone. We’d said goodby as Jasmina expressed again her greatest wish: “Sébastien needs a transplant sooooon!”

Sébastien was a pitiful sight. A small child hovering just over 10 pounds at 20 months, he would lie on a pillow, as parents, family and friends would rock him. The TPN pole with its assortment of tubes, was almost always at his side. There was always the danger that he would bleed from a cut in his ostomy, and as his liver had grown weak from his dependence on TPN, such an occurance could be fatal. One easily recognised the jaundice, the almost lime-green eyes. On a good weak, with few bleeds, he would receive 2 or 3 blood transfusions. On a bad day, he could have as many in 24 hours. Jasmina’s hope only seemed to grow as the situation became more desperate, and we silently began to wonder if they would operate a weakening child.

The phone at my desk rang, not an hour since our conversation. I answered only to hear a small voice amid tears. Blood draining from my face, I half expected to hear that Sébastien suddenly died. “Toronto called…. they have a transplant for Sébastien!” In near disbelief words seemed to evaporate until I could find my thoughts again, emotions crowding in as I babbled: “That’s wonderful news! … I’m so happy for you! …. Congratulations!”

For David and Jasmina the days and nights blended together in unrecognised succession, hanging over the thin line that Sébastien tread between life and death. As his stomac grew over the new liver and bowels, each new day we wondered at Sébastien’s strength – a strength that continues to surprise us a year later. At that time, we couldn’t forsee all the ups and downs an experimental treatment would bring, but I’m sure that if you ask David or Jasmina if it was worth it, there would be a resounding “YES!”. For nothing in the world would Jasmina have wanted to miss Sébastien’s new-found life: his first words, the first time he would sit by himself, the daily multitude of smiles and laughs that he showers on everyone… The organ donation hasn’t just affected one life… it has affected the countless people that have come to know Sébastien and his family.

Consider throwing a pebble in the water and watching the ripples.

A poem for courageous parents

A note to readers: those who aren’t crazy about poetry can skip this post! It’s something sentimental for David and Jasmina with special thanks to Cathy who sent it to me.

Heaven’s Very Special Child

A meeting was held quite far from earth
“It’s time again for another birth,”
Said the angels to the Lord above,
This special child will need much love.

His progress may seem very slow
Accomplishments he may not show
And he’ll require extra care
From the folks he meets way down there.

So let’s be careful where he’s sent
We want his life to be content
Please, Lord, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they’re asked to play
But with this child sent from above
Come stronger faith and richer love.

And soon they’ll know the priviledge given
In caring for this gift from heaven
Their precious charge, so meek and mild
Is Heaven’s very special child.

- Edna Massimilla

SHHH!

I came across an excellent article on the Kevin, M.D. blog about a new initiative published in the New York Times. It’s called: Silent Hospitals Help Healing. Knowing how Jasmina deplores the level of noise in the hospital, this article brings a refreshing perspective, describing its origin:

The program, called Silent Hospitals Help Healing, or SHHH, was started two years ago by Elodia Mercier, the administrative nurse manager of the floor. Ms. Mercier says a quieter floor has not only helped patients sleep better but has also lessened stress on workers.

Sébastien’s grandparents are back from their stay in Toronto, arriving in Manitoba last night. They are all excited about Sébastien’s rapid recovery from being almost in a coma-like state during 10 painfully long days. Perhaps Toronto is another place, where, as Chris Colin wrote in an article: “miracles – by which I mean the manifestations of skill and technology – are very much the norm”.

Monday, our answering machine caught a message from David and Jasmina. Two years ago, on the 9th, Sébastien was a special guest:

Thank-you!

You will not believe it but I am finally back on my homefloor 6A and left the Critical Care Unit at 1:00 p.m. this afternoon…. It feels sooooooooooooo good to be back with all my friends and familiar things around me….they were really nice down in CCU tooo but it is soooooooooooooooo bussy down there and I wasn’t feeling tooooo well either…. but thank God and Heaven and all the prayers that I am back on my homefloor to continue my journey of recovery…..

We would like to thank for all the support and prayers that we received during this most difficult time from our family and friends, Doctors and Nurses with staff and for all the prayers that carried us through this difficult time and for people flying out from far to stand by our side when we needed sooooo much support to give hope and prayers during this time where we needed to stay sooo strong for our amazing son Sébastien. Thank you 6A for giving your support that very morning and for Daniella, Isabella’s mom,  who came to stay with me during the time David rushed to fly in from Winnipeg, for all the people that came from the whole hospital to visit and show your support and we were sooo touched by how many people came from the whole hospital to be at our side and it seemed the list of people that came did not stop, how wonderful, the Critical Care Unit team and surgeons that gave everything possible to get Sébastien through this, thank you Dominique, Jacqueline, Grandmaman & Grandpapa, Uncle Roger and Roxanne Stewart for flying in and to support us with your love and encourgement, your prayers and for taking turns staying with Sébastien to pray with him during those endless nights and days and to give him your comfort. Viellen Dank Oma & Opa, Tante Birgit & Lisa, Onkel Gerhard und Onkel Hubert fur die taglichen Telefongesprache die uns sooo viel Unterstutzung gegeben haben und fur Eure Gebete. Thank you to the Neurosurge team for their amazing work and to the Dialysis/Apheresis Team for your amazing effort and hard work to help Sébastien. Thank you also Nathalie & Mike with Jacob for being with us during this difficult time and for praying with us for Sébastien’s complete healing…. I also thank you Father Peter and Father Mike and the whole Congregation of St. Patrick Church that prayed with us for our son and visited Sébastien, this was such a blessing…

Most of all thank you Heavenly Father and Mother for Sébastien’s healing and for caring and comforting Sébastien during this most difficult time and we give you thanks and praise. We would also extend our thank’s to our friends and families and to all of you for your prayers, support in any way….. there are not enough words to embrace the gratitude we feel for the GIFT OF LIFE  of our dear son Sébastien.

Thank you sooooo much also to my beloved Husband David for being soooo courageous and strong and being there for me and Sébastien and for your tender Love and Hope that only a special Papa like you could give and to embrace us during this difficult time. We love you sooo much.. xoxoxoxoxoo

On a high note

Sun dappled mornings, revealing the gem-shaped dew drops clinging to the blades of grass and the fresh green of a new day, bring a delicious feeling and I can almost brush away the small regret I have of having to go to an office, as my husband, a teacher on holidays, can stay home. Of some consolation however, are the occasional calls I get…

“I talked to David” my husband tells me. I can detect that he is happy, as he and David have been best friends since childhood. “Sébastien is doing really well!”

And I learn that Sébastien had been placed on a “plasma machine” and that that had saved his life. David and Jasmina rarely get into technicalities, and I am left to guess that it might be hemapheresis. Those who are nurses or doctors, do feel free to correct my google-search assumptions! Sébastien is now only on that treatment temporarily and will soon be off. He is also off the ventilator, since last week.

My husband continues: “The doctor told David and Jasmina that they were lucky Sébastien was so young. Had the hemorrhaging occured to an older person, they probably would not have survived.” With a child like Sébastien, neurons can regenerate themselves. “They haven’t gone for a CT scan, but Sébastien is moving so much, he probably doesn’t have blood clots. And they’ll be getting their room back on the ward.”

The doctor was certainly impressed by David and Jasmina’s perseverance, saying that Sébastien is alive “because of your hope and your faith”. Seeing how well Sébastien is doing, the doctor remarked: “I’m glad I guessed wrong.”

When the world says, “Give up,”
Hope whispers, “Try it one more time.”

Roxanne writes…

A good friend of David and Jasmina, Roxanne, went to Toronto only recently and writes about her trip:

Hi Jacinta,

I just got home from Toronto on Wednesday.  What a trip.  I arrived on Monday afternoon and Jasmina stopped me a few times before going into the room.  When I saw Sébastien, I just wanted to pick him up.  There were metres and metres of tubes.  He seemed stiff and it took some time for his eyes to follow your voice.  It was difficult to imagine that a few weeks before, he was on a tricycle and talking.  I couldn’t believe that they were back to this position.  We went to church on Monday night.  The sermon was about how we don’t get to make plans.  God makes our plans.  How true I thought.

On Monday night, I stayed in the critical care room with Dave.  Praying.  When I opened my eyes at about midnight, I could see in the shadows that Dave was sitting on a chair beside Sébastien’s bed.  He had his head down.  Either trying to get some rest or reading prayers from the prayer book.  Earlier, Jasmina expressed her frustrations as she said that at night, the nurses talked loudly and it was almost like they didn’t realize that the kids need to sleep or that they are sleeping.  She explained that they often come over and talk to them as they stand by Sébastien’s bedside.  Jasmina said to pretend to sleep so that they don’t come and talk to you since they respect the parents getting a little rest.  “It works like a charm” she said.  As I watched Dave, I thought to myself that she was right.  I looked at Sébastien.  In the dim light of the room, I could see his long eyelashes blinking and looking at his dad.  With the tube in his throat, you wouldn’t be able to hear him.  But he quickly fell asleep again.  Knowing he was safe.

Even though I was there only 2 days, what an amount of progress in those 2 short days.  When I left on Wednesday morning, everyone was sleeping.  When I went to his room, Sébastien was awake and trying to remove his breathing tube. He was alert and his eyes followed me without delay.  It was like a different child!  Dave and Jasmina gave me a stack of pictures. 

Rox

Thank-you Roxanne!