UP AND DOWN

Enjoying home time with the boys!!!!

This blog is so aptly named because it truly explains what our ‘post-hospital’ life has been like. We were officially discharged on Saturday morning (March 10^th – shared with my brothers birthday so I will never forget!) and enjoyed the sunny drive home to Airdrie. We left our room, 1123, after 38 days at the hospital at I will fully admit that I shed a few tears when I hugged our nurse’s goodbye. Since our discharge we have good moments of laughter and tickling and we have horrible moments of screaming and sickness.  I am praying the later will end soon.

Christian and Marc

I am still at a loss for how to properly thank somebody for helping to save my son’s life. I cannot say enough good things about the staff at the ACH, from the nurses, child life specialist to the music teachers. When I told Christian we were done at the hospital, he looked at me and said; does this mean I won’t see Marc anymore? (Marc is the resident music teacher). I am crying right now as I type this because it truly is a loss for him. How do I explain to him that somebody who has brought him so much joy, relaxation and distraction from his pain, will no longer be a part of his days? Even on his sickest day Marc was able to bring a smile to his face just by playing his favorite songs and on his best day he banged the drum along with him while they pounded out the Star Wars music. I am sad that I do not have anything to replace this with. I am sad that I he doesn’t have this constant in his week when he is not feeling well. I can’t run down the hallway and see if Marc is available to play some music for him. I don’t know if I can explain how it feels to lose these things, the things that brought Christian joy. The chemotherapy, NG issues, dressing changes, nausea, testing and the rest of the yucky stuff we won’t miss for a second. But the good stuff, and there is SO much good stuff, will be deeply missed.  

Saying Goodbye

When I wrote my last blog I was reflecting on our vast journey and I was looking back through my 2000 pictures for points of reference. And I found many days that Chris and I would rather not have happened. But the more I looked through the photo’s the more I realized that this past year has brought us some amazing times and opportunities to enjoy life. When people ask me about what we are going through I will often say that it has been the worst year of my life and also the best year of my life. Sounds kind of weird but we have been given such an amazing gift of growth and clarity for the fragility of life. Lessons that cannot be taught – they must be experienced. I cannot explain to somebody else what it feels like to lay in bed and look at your son sleeping beside you, skinny and sick, and wonder if you have the strength to let them go. I can’t verbalize the horrible feeling I had in my stomach on the nights I wasn’t sure he was going to make it. But today we have hope in our lives and excitement as we plan our immediate future. Excitement that is heightened because we fully embrace the realism that today IS A GIFT. You cannot have today back. You do not get another chance to say I love you, or cuddle with your two year old because tomorrow your kids will be grown and gone and you might wonder why you didn’t lay with them and read them another story when they asked (even if it’s a stall tactic as it always is!) You won’t miss that money that you won’t earn while you spend more time with your kids.

Our 'board' the day we left

I am trying to learn to have peace in my heart, even when discord is all around me. I want to be able to look at a person who is angry and instead of getting defensive try to see where they are coming from…how they have been hurt. I just want to live each day with some measure of stillness and peace. I want to stop and take time to read my kids stories, play games with them, be silly with them, get in the tub with them and hide under the sheets with them.

This past year we went on many trips to Canmore, even if just for a few hours, to throw rocks in the water at the base of a mountain. Play in a playground surrounded by such immense beauty it still takes my breath away. I love looking back at my photo’s of our pizza picnics in the park, even with a bald little Christian trucking along. The day we drove home from the hospital it was so beautiful Evelyn said, “What a great day for pizza in the park”. I was astounded that she had been so affected by these outings, days that costs us nothing more than $10 for our pizza.

Nurse Elly and the kids

Jamie’s Preschool has been another blessing for our family. Although we have only been able to attend the preschool a few times (as Christian always seemed to be sick) the women who organize the school have hearts of gold and immediately our family developed a tight bond with them. Christian and Evelyn enjoyed the first outing to Callaway Park, the trip to Canmore, the gymnastics at Stars gymnastics club and of course class held me Mrs. Tiffany Howe.  We will never forget the day we almost killed long serving teacher, Mrs. Mackie, with Christian’s peanut butter sandwich! – oops.

Christian enjoying gym time at preschool

We have been able to meet so many amazing people in our own community, people who supported us even though they had never met us before. People who prayed for Christian and prayed for our family. Meeting the Phaneuf family (whose son Jayden is also fighting his own cancer battle) whose church has now become our home church. Gathering with this amazing family has literally saved mine and Chris’ spiritual life and our marriage. A life changing friendship that would have never happened had it not being for cancer.

Having the opportunity to have Chris’ extended family come and stay with us numerous times has been such a blessing. Especially for Evelyn and Ryan who have created such an amazing bond with their Nanny Marilyn and Papa Norm. Evelyn asked her papa today on the phone (from Nova Scotia), “Papa are you coming home soon – I want to play puppets with you?” Feeling the support from your family when things are really upside down and knowing they will do whatever has to be done to help.

Our family vacation to Nova Scotia, the Jason Jaffray Golf tournament, street hockey with the cousins, and many more memories will be just as big and memorable as the year Christian had cancer.

Them's are some tired eyes... i think i need the spa.....!

Today Christian is doing ok. He quite skinny and we are working hard to get some more weight onto his body. He needs chub, strength, balance and energy. This will all come with time, which we have plenty of. His tummy continues to be sore from the massive onslaught this past year has served him. And I imagine it will be a while before he is able to eat, as we want him to. So I am so thankful for the NG tube (even though it gives him nightmares!) We are trying to enjoy the lengthening days, the sun and the opportunities to be at home together. Our hope is to make a trip to the west coast in the next month (if we are allowed!) then to the beach once Christian has his strength up. Thank you for your continued prayers.

Today I am thankful for:

1.     Ikea Hot dogs

2.     Taking off tight pants and putting on loungers at the end of the day

3.     Zumba