3 weeks have passed...

it has been 3 weeks since Sasha died even though in many ways it seems like years ago. Our house is so quiet that sometimes i imagine her sounds. sasha was rarely quiet or silent. she was always making some sort of noise, whether it was her grunting as she walked along the walls, or singing and talking with me. i remember when she was in ccu and she was intubated, my biggest fear is that i would never hear her sweet voice anymore. i remember that when i did hear her voice i was so thankful and i was so hopeful that she was going to bounce back. my hopes were crushed as sasha never seemed to reach the point of where she was before her surgery but i could hear her voice. her sweet little voice warmed my heart and made me so happy. i always wondered how such a little person could be so expressive and could have to say. i would spend my days talking and talking to sasha that by the end of the day i was all talked out. now the house is so quiet with only the occasional squeal of mia, which sometimes sounds like sasha.
i spent the morning with friends. matt was the last of my visitors and he brought a beautiful pink orchid plant. i was just thinking yesterday about buying one in memory of sasha. i loved matt's enthusiasm to meet mia as we sat in her room staring at her sleeping in her crib i could sense that he was thinking about sasha. matty never spent a ton of time with her but whenever he was home for a visit, he made sure to spend some time with her and that always made me so happy. while we were in the computer room, matt had said that it was such a good idea to get the photographer over to take the photos of us when we brought sasha home. i told him that heather volunteers her time and then i asked him if wanted to see the the slideshow compilation she made for us. i was surprised i offered as i haven't looked at it in over a month. matt and i sat in the computer room with tears streaming our faces. the reality of me missing her becomes so raw at times. i love having great friends like matt in my life whom share all my happiness as well as some of my sadness with.

Improving Family Centred Care

We thought alot how as parents we could help nurses and doctors and how our advocasy for Sasha was a part of their work and how they responded to our increasing levels of stress and concern and requests. Always, and especially when surgery does not turn out well, parent's knowledge that they did the best they could with their kid's caregivers is deeply meaningful.

Doctors and nurses have to convey routine and life changing information. We all wait for those words, She/he is fine. I am happy with how she/he responded. And what is said to parents and how it is said stays with them for life.

The mirror image of hospital success stories are those stories with unhappy outcomes. Unhappy outcomes are a challenge in hospitals that celebrate success so publically and as surgeons take on more extreme interventions and preemie support, more infants, babies and toddlers will die later despite the most valiant efforts.

Perhaps the deepening supports for palliative care can now be celebrated and death be more visible beyond immediate families and their informal network of other parents that share updates in elevators and the halls, lounges and cafetarias.

When our baby was rushed out of the room at birth and we later saw them in a warm glass incubator in NICU and when we rushed into the post op waiting room and then CCU after surgery, we carried our hearts in our hands. Actually our hearts were in our care givers hands as they approach with a picture of an organ or a smile to update you.

Parents have intense hope, worry and anticipation of the few words that will change their life. He has a very rare form of ... Such and such numbers are high or low. It is larger than we thought. There is a lot of swelling. She has a fever.How these words are delivered will impact those parents for life, as will the response of the caregivers to parent advocasy. This parent advocasy assists caregivers but sometimes, especially with a medical crash course via the internet, we can pitch a stready stream of questions and requests. We advocated relentlessly for Sasha.

Under very difficult circumstances, with Pamela and I trying to understand each step of Sasha's care and what we could do to help, Sick Kids engaged us in an exemplary fashion with very few exceptions.

The exceptions demonstrate the rule, they offer flashes of recognition that tremendous pressures are being brought to bear on people with different experiences and education and support and happiness in their own life.

Sasha's story is one of heroic personal development in the face of a multi organ bad hand, a long course of risky surgery akin to russian roulette, then a family and caregiver nightmare of cascading surgical complications, lengthy time in CCU, slow recovery on TPN, deepening challenges related to the underlying syndrome, an agonizing dilema over more interventions versus quality of life. You then end with a team that helps you face that heartbreaking realization that it is Enough and all that awaits is a death without pain either at the hospital, a hospice or the relative comfort of home.

Sasha's life demonstrates the commitment of Sick Kids to family centred care and helps us identify the stresses on the human supports as they deal with different parents, some of whose kids will live longer and some of whose kids are dying.

We think it would improve family centred if nurses had more palliative care resources. We also think that the line between living and dying is not so well defined and can be sensitively explored earlier than when the organs are in failure. In short we think family centred care can be improved by expanding the place for death in an institution devoted to life. It sounds contradictory, but then life is just that.

I think of you

I think of you many times a day, with a smile or a shudder and closing of my throat and water teetering on an eyelid and I always try end with a smile but not always successfully. A flicker of the happiest and saddest images of my life and yours.

Memories of you gurgle, ear splitting shieks of excitement, wild hand gestures, accomplishments, fascinations, interests, lack of interests, Yeas, decisive Nays, wood floors and animal mural hospital corridors. All that blood flowing from your body. Wonderful weeks at home. Last laboured breaths.

Did we have the right to intervene in your natural order? were the interventions we subjected you to for you or us? did we challenge the teams to help you well enough? Your two precious years were such a special wonder to us, I hope so hard that you feel the same. You know my regrets. I can add the regret of not knowing you more. do you know how you are treasured? Was it enough for you? Did you know you were dying?

This stream flows each day, often set off by seeing a child about your age. This time a boy in a stroller, lollygagged at clowds, arched out of seat, steered by older parents past a Chinese fruit market with new bounce in their step.

What is the best way for us to give back?

From our hearts we thank the many people who contributed to The Sasha Bella Fund. We can now reflect and listen and work out together a use for that goodwill, a use that might help parents, nurses and doctors better care for children.

We deeply appreciate that the hospital takes seriously that parents and family are vital to the children they help. So we ask all the children and parents and families and caregivers for your thoughts on how family centred care can be further improved.

There are so many supports already in place. The doctors and nurses have multiple layers of specialists. There are also dedicated occupational and physical therapists, life skills specialists, clowns, music specialists, councellors and a patient rep to faciliate patient requests. We also heard of some attempts to setup parents groups, with mixed success.

No matter how well Sick Kids does now, we know they are also committed to continuous improvment.

So what do you think will help offer even better patient and family centred care? It could be a support for patients or their families or extra resources for the hospital.

We would love your suggestions or a story that shows how the family centred care worked or can be improved.

Thanks!

finding our new normal

We had a great time at the cottage although Sasha's memory followed me there. I can't seem to shake my sadness away. It has been nearly 2 weeks since Sasha has been gone and I keep questioning our decisions. I now understand how people can cling on to life. I have never been a clinger and I didn't want to become one when Sasha became ill. We agreed that we would try to not exhaust Sasha physically given the odds were against improving her quality of life. I keep tracking back to the week before her surgery and the sick feeling I had. I had a really bad feeling about her going in December and I should have stuck with my gut.
Jonny went back to work today and it was just Mia, Sam and me. We had a quiet day and I took Mia for the usual ravine walk where I used to take Sasha everyday. I thought about her the whole time and could not stop staring at how pink Mia's lips are. She is a beautiful gift, I just wish she had met her sister.
I decided to do a clean up of all Sasha's clothes and I can't seem to put the last of her clothes into a bin. I think I will keep them in the drawer until I forget that they are there and one day I will open them and think of her in all her big girl clothes.
Tomorrow is Malou's first day with us and we agreed that we will help her find another job part time and we will keep her on with us part time. We'll see how it goes and I may be able to have a couple hours to myself during the day...what on earth will I do.
Hope everyone is doing well and we look forward to finding our new normal...SOON!

Sasha's presence in our present

Sasha's absence inserts itself into my present continually, memories arriving, playing out, producing high emotions and tears or sometimes just an ache in the heart, then pushed aside by sights or sounds, returning later at a quieter moment.

Saturday night we visited the Big House for the first time in over 6 months to see Kim and Terry and the boys. The garden was full of the sounds of Jonah and Henry playing on the swing and slide and having sword fights and doing all the wonderful kid planning that 4 year olds do. Jonah and Oliver were Sasha's friends, Oliver is two weeks older than Sasha. Oliver was busy fishing trucks out of the blow up pool and I could see Sasha pushing Oliver out of her way and patting the dogs and eating chips and dip. After dinner, I sat outside listening to all the laughter from the kitchen and sunk into the wood easy chair cycling through images of Sasha, then momentarily closing that door and going inside to find Sasha's friend drinking up Dora with his juice as Pam and Mia relax after a feed.

Sunday we came up to Dorset to join Henry, Marcia and Sean. We had a wonderful weekend up here with Sasha last summer and I knew the cottage would be full of memories, walking along the deck, by the firepit, throwing clothes in the den. It was good to hangout, watch movies, make dinner and talk. Marcia remembered Sasha flying around their house at Kate's baby naming and we spoke of ideas for Mia's naming.

Monday was one long sleep in. Mia likes to sleep during the day and is now keeping Pammy up all night with feeds and snacks, falling asleep, then awakening 15 minutes later for more. So Pam is pooped. And she has intense moments of sadness, which we share. And it was good to hear Pam remember how sweet Sasha was and say, this time, even if she knew we only had two years together she wouldnt have changed anything. We continually see-saw between cherishing and missing, smiles and sadness, Sasha's absence and presence.

This morning was overcast so the exposed deck was comfortably cool and I sat watching Sam running around the garden, drinking a morning coffee, hearing the birds chirp, the sounds of neighbour's kids planning the day, a few drops of warm rain. I dreamt about Sasha last night, but like many of my dreams caught between short sleeps, the specifics are lost. I tried to remember it, but the outlines were gone, leaving a comfortable Sasha imprint on my waking up, a little lump in the back of my throat. I read over recent comments: "one day will wake up feeling lighter and able to remember with happiness" and the latest from a nurse at Sick Kids, celebrating that place where "cherub-faced little blonde girls who love ice chips and Jack Johnson lullabies still get to be kids" and I could feel Sasha all around, in all the molecules of air stretching out across the lake and up to the clouds.

On the verge of tears

I wonder if one day I will wake up and not feel the heaviness in my eyes will be gone. I never thought that this would all be so hard. Sasha is all I think about. Last night we went to Kim and Terry's for dinner. Even though there was lots of ooing and ahhing over Mia, all I could think about was Sasha. Oliver is 2 weeks older than Sasha and I kept on thinking that she should be with us playing with her little friends. There is such a void in my life right now. I keep watching her videos and looking at her pictures and I can't seem to get her voice out of my head. The strongest emotion right now that I feel is that I wish she hadn't gone through so much. I wish December never happened and we could have had her at home doing normal kid things until her body just got tired. Instead I feel that we put her through a battle where there was no reward. I couldn't imagine the discomfort she felt and how scared she was. When we brought her out of CCU, Sasha would wake up screaming. That slowly disappeared and she would wake up like she used to: happy. Mornings were the best time with Sasha. We would lie in bed staring at each other and loving every minute of it. She was such a great morning person. I keep longing for the feeling of having Sasha in my arms and I yearn for her smell.
As Mia is growing, I feel so blessed to have such an easy baby. I remember with Sasha, I was so scared that I couldn't relax. Its like Sasha told Mia to give us a little break. Mia smiles so much in her sleep that I like to think that Sasha is telling her stories. I love my two girls so much.