Monday, December 21, 2009

An update... from Michelle (post 3 of 3)

A few weeks ago, my tot was having trouble falling asleep in his little bed. He insisted on sleeping with me in the spare room. I asked him if he was sick and he shook his head vigorously. I knew something was bothering him so I leaned him and kissed his rounded cheek. I reminded him that I’m his mommy and he can tell me anything. He whispered softly, “you are”. I repeated his words and asked him what he meant. He said it again. I repeated my question and snuggled him close to me. He whispered loudly, “You’re sick mama.” He had never said the words out loud before. I wasn’t ready to hear him say it now. Up till that moment I believed that he didn't really know what was going on. I burst into tears despite my urgent desire to be in control of my emotions. It was his turn now. I couldn’t stop the waterfall steaming down my face. He jumped into my arms and held me silently. I could hear his breathing quickening, almost panting. I quieted and he told me he is so scared. He hears me throwing up. He’s afraid the doctors aren’t going to save me. They are taking too long mama. He wants to fix me with his toy tools. He loves me so much and he’s afraid that I am going to die. I gasp. I didn’t even know he knew that word. I feel like I have just listened to the confessions of a 15 year old and look at his tiny face and hands to remind myself that he is only 2 years old. I remind him too. I told him that he must lean on me, tell me if he is hurting and how he feels. Suddenly he is in my lap in the cradle position (like when he nursed). He started to howl like a newborn and I rocked him with tears dripping off my chin and soaking his pajamas. I wept silently while he gasped and sobbed. I started to sing softly to him and he slowly calmed.

Soon only the chudders of a child's cry remained and I still rocked him while speaking softly. I tell him that mama was born with something broken inside of her tummy that needs to be fixed. Mama needs a new part. I tell him I won’t be sick forever. At least I can promise him that. I tell him that there is a special doctor who can fix me. A look of relief washes over his face and he smiles before pronouncing, "I will meet him mama. I want to meet the doctor who is going to fix you." I can`t imagine the high and mighty Dr. S would be able to look at his little face and deny his request. In fact, our sweet tot has been to the transplant clinic with me only once. It was after his visit that they activated me on the liver transplant list.
I do believe that my son will see me well again. I believe I will dance and work and lift and climb and ride and run like I used to one day. I tell him this and he is happy. I cannot believe this amazing child came out of my body and is my son. He is truly a living, breathing miracle. Thank you. I love you little boy.

And now for a quick health and wealth update....

After being rejected by Toronto and BC once again in back to back losses we were burnt out, done and depleted. We have been living this white knuckle ride as if each day could be my last. We cannot continue like this. Jarvie, my mom, Meghan, Tracey, Heather and literally everyone I know has done everything we can to get this surgery done. I literally got on my hands and knees and begged the BC transplant surgeon to do the surgery. I told him quite simply that I don't want to be dying anymore, I want to be recovering or dead. One or the other. I asked him please set all of us free from this truly insane process. He responded by telling me that it was really his decision at the end of the day. It is one of the most difficult of his career. Keeps him up at night. He needs to feel in his gut that the time is right. Leave it with him until Thursday. We shot ourselves in the foot by going to Toronto because they said no too. Ugh... Thursday- no call so I initiate contact. No dice. See you in January.

I am quite sick now. The disease is literally oozing and popping out of me and I am drowning in its force. I cannot believe that I will be rejected again when I return to the transplant clinic in January. My kidney’s are bloated with backflow of blood (shunting) from the spleen. The pressure between the organs has resulted in ginormous varices in my torso which are now protruding from my skin and look like bloated worms after a rainstorm. I simply cannot get the upper hand on my pain or my nausea or my fatigue or the feeling that I have been poisoned. I am losing the memory of wellness now. I watch myself moving in videos when my son was first born and I am relieved to hear my laugh and see how easily I moved and danced. It hurts to wrap christmas presents now.

Well.... I've had enough. At the beginning of November I took a long hard look at the finances and the pit of debt we were falling into as we tried in vain to make ends meet. This and we were getting so much help from our friends and family. Unbearable! In November I attend another fundraiser despite my deep regret for needing more help. I felt the now familiar sting of humiliation as I see the familiar faces that fill the room to take from their means and gift our needs. These are people who struggle as much as I do! I know I would do the same for them and have, but now it is different because there is no end in sight. I feel hopeless.

Resolve: I have to stand on my own 2 feet again. The fact that I cannot pay my own bills has demoralized me. I could stomach it when I thought it was going to be a short term problem but now I must make my life work better. This hell could go on for another year and that`s just waiting for the surgery. I keep reminding myself that the surgery is only the beginning. The real battle for my life is the post-op recovery. I will pray every day and I will assume the salvation. My goal: self-sufficiency, creating a happy, stable as possible environment for the tot.
To this end- we met with the real-estate agent- can we sell? We talk to the mortgage broker- can we do anything there? Despite what should have been impassable barriers we were approved for re-financing and lowered our monthly expenses considerably. We also traded our minivan (after some fancy footwork) for a cheaper ride. And the hardest decision of all.... we re-evaluated the nanny. Having full time care was a decision we made because we thought surgery was imminent and at the time I was at high risk for going into a coma. And, my son was still a baby. Now, he is almost 3. He is seeing, listening, feeling, watching and learning so much every day. He has to spend too much time worrying about his mama so we decided it is best for him to be cared for outside the home.

We still have the nanny 1 time per week when she comes to clean and visit, but the Tot is now in pre-school 2 mornings and daycare for 3 full days per week. It is a wonderful structured happy and safe environment where he is well cared for and plays well. He has already made good friends there and comes home full of stories and all tired out. We are at just about the same speed by the time I pick him up. We are all adjusting but it feels better already. As luck would have it my mom and her husband arrived just as the nanny vacated so the sting of her leaving wasn’t as bad. My mom tells me she will likely stay for good this time. Again, I am grateful.

I would like to send a big shout out to God. Thank you! I don’t know who’s been granting all my wishes and prayers but they’ve been busy! Jarvie was assigned 2 more accounts this week!!!! He is concerned about being away from home more now with his increased workload but we are going to try and make it work. Bring on the frozen dinners and bring home the bacon baby! I'm so proud of you. "See ya with all my heart!"

I’m not sure yet but it seems like our financial ducks are finally lining up in that row they’ve been running away from! We haven’t dotted our I`s eyes or crossed our `T’s yet so still and perpetually praying...

Thank you all so much for your friendship, love and support of any and all kinds. I am eternally grateful. If we attain self sufficiency my prayers will have been answered but I know better than to count on it. Things change all the time when you are waiting for a transplant and living with a toddler!! I wish you all a happy healthy holiday season. Thanks for listening. xox

Making up for lost time (Michelle post 2 of 3)

Waiting for a liver transplant has affected every area of my life. But one of my favourite impacts has been the time I have been able to spend with my grandparents on my dad's side. My Granny is 93 and Gramps is 83 or there abouts. For a number of reasons, I never got to know them as a child. I moved to Canada at the age of 20 and began the slow process of getting to know my father`s side of the family. I wanted to matter as much as the other grandchildren who had been bounced on the knee, combed their dollies hair and collected shells on the beach in front of their house. But, you cannot recreate these bond forming memories as an adult so I have felt like an outsider. Slowly over the last 13 years the relationships have grown but progress always hampered by life’s many commitments.

My grandparents have been married over 50 years and are still on their honeymoon. Their secret as far as I can tell is that they always admire and put each other up on a pedestal. They have a lot of reasons to love each other which makes it easier I guess!

Gramps admires Granny's strength. For example, a few months ago Granny fell and broke her hip and leg in 4 places. She went to the hospital, waited a few days for surgery, had surgery and got up and walked the within days. She was out of the hospital within a month and now doesn't even use a walker. Not long before this Granny lost her thumb on a cruise when a metal door slammed shut on it one stormy night at sea. She held the thumb back on and waited the several days it took to reach land and receive proper medical attention. By then it was too late to save the thumb. Granny often remembers her thumb fondly and thanks it for all it's contributions to her life but she didn’t miss a beat. She went to physiotherapy and got full function back at the age of 92. 1 year or so prior to that Granny fractured 3 vertebrae in her back reeling in a large fish. She waited to get back home and get x-rays and treatment. Once again she made a full recovery.

After the fishing accident my Grandfather decided it was time to move out their 3 story house in Sechelt. He thought it was best to get Granny off those slippery stairs. This is how they came to live in a condo near our home.
During Granny's most recent injury to her hip, she was hospitalized for several weeks. I really wanted to be there with her. I know how boring hospitals can be! During my first visit I overcame my self-consciousness quickly. Soon I was seated beside her bed with Gramps standing watch over us. At 93 she is still beautiful. We spoke quietly for awhile. People passed in and out of the room. I felt surrounded by kindred spirit. The pace was slow, the air quiet and yet there was a quiet and determined drive for recovery and intention of strength.

In the visits that followed I combed my grandmother’s hair and placed her Hawaiian flower clip just so. I encouraged her through sips of soup and we made fun of the food. She was enjoying the effects of the pain relievers and amused herself and us with a series of one-liners and her opinions on life. In the months that have followed I have made repeated visits out to my Grandparent's place. We sit there in the quiet and speak when we can, eat when we can and nurture each other through pain, illness and gratitude. We celebrate the successes big and small and enjoy the beans of energy we are afforded each day. Sometimes our plans are foiled when one of us is too sick to visit. Most recently I was honoured to decorate my grandmother’s tree. I hung snowflakes that were over 100 years old crocheted by my great grandmother. My Granny spends her life creating, painting and crafting; there were many handmade treasures stamped with her signature, a lady bug.

My Grandparents are the strongest people I have ever met. I know the strength that flows through them was passed to my dad and courses through my brother and me. It feeds my spirit every day. It is the breath of resolve and endurance that proves any circumstance is possible and all outcomes are affected by determination of spirit. I am so grateful to have found friendship with my grandparents and to have been given the opportunity to make up for lost time. Thanks for the visits, the cooking lessons, the this'n'that's, the questions, having most of the answers, listening, caring and being there. I love you both so very much. Here's to many more visits and successful sausage gravy feasts!

Midnight musings- by Michelle (post 1 of 3)

It is 12:09 midnight at the Way house and nothing is stirring except this mouse. My fingers are nibbling at the keys. My dad used to like to sit and listen to me type his hand written journals or transcribe his reading. He used to say my typing sounded like a gerbil. The clickety-clack was so fast and relentless.

My dad was a story teller and writer. He used metaphors and wit to re=tell the adventures of his life. The most important story he told or wrote was of his relationship to Rasheed, a young man he befriended in the inner cities of Camden New Jersey. My dad volunteered to move there and be part of Urban Promise, a mission group who assisted the impoverished in fixing their homes and enrolling in schools, learning the trades etc. During his life my dad kept a journal which he wrote in every day. He treated his self-imposed 3 page per day quota with a devotion rarely found. We converted the journal entries from that time into a book which he titled 'The Camden Diaries'.

In the weeks leading to my papa’s death he spoke repeatedly about his writing and his book. It was his dying wish that his book be published. My brother and I promised him we would do our best but he wasn’t satisfied. We tried to secure a publisher before he passed and my brother, thinking we had been successful told my dad he was going to be published. A look of relief passed over his face that I had not seen before. He smiled and wept with joy. He died believing this. His book is still not published.

December 10th was my father’s birthday and the 2 year anniversary of my being admitted to Richmond General Hospital for stomach pain. The pain turned out to be the first flag waver of end-stage liver disease. When my husband drove me to the hospital that night I believed my symptoms were due to pregnancy. You may imagine my disappointment to learn that quite the opposite was true. My liver was dying; I was not creating a new life inside me. This, after I pre-emptively bought a 7 seat minivan to house our growing family! I’ve always been an incurable optimist.
My dad believed that certain people were born into this world to bring positive change to people’s lives in big ways and in small. He called these people Advocates. Advocates are called to face negativity with fresh ideas, positive change and creativity. I asked my dad if he was using the word advocate to describe what others may call an Angel. No. Advocates are aggressively pursuing positive change. Angels are too nice! He told me he was an advocate and so was I. I didn't mind being called an advocate. I looked upon it as an honourable expectation.

My dad was given a year to live but never assigned power of attorney or wrote a will. The only provision he cared about was his journals which he left to me. All his affairs and everything he owned were left to my brother and me to sort out. Some people were offended and dumbfounded by my father’s refusal to assign power of attorney or write a will. He never faced the end during his last year. He fought only to live and assumed this outcome until there was no possibility of it being so. And, even then he wouldn’t commit it to paper. Ahh... papa. It was your birthday December 10th. I guess I’m missing you.

Saturday, December 12, 2009


Hello everyone! I wanted to give a little update.

Michelle had her pain management appointment recently. I attended as a support. Unfortunately I can't say there was any ground breaking changes to her treatment plan. In her doctors defense, Michelle's case is complicated and pain meds need to be chosen carefully due to her liver failure. And with any pain management plan there is often trial and error. So at this point she is to take meds around the clock and try to get the pain under control; rather that what she had been doing, which was trying to tough out as much pain as possible then take something when it was unbearable. A few days into this plan and she's still trying to find some relief. I feel so badly for her, her pain is so intense.

A big change has occurred in the household. Michelle was finding it hard to get the rest she needed with little man seeking her out throughout the day despite the nanny, and also feeling that he was struggling with seeing her in bed and unwell so often. The nanny has been let go and replaced with care out of the home for little guy, and help to come in for cooking and cleaning. There are still some kinks to be worked out in terms of what to do in evenings when Jarvie is in meetings or there is an emergency. But it was important for Michelle to feel in control of her home and family, so they are going to try their best to make it work. All monies raised will continue to support the family with paying for care for Tater tot, assistance with cleaning and meal preparation, and any supplemental medical needs for Michelle. Michelle's mama is in town for the holidays, so this is great for the family!

Please pray for Michelle. That the medical team will empathize with her struggle and put new wisdom and energy into her care. That she will get the treatment she needs to end her suffering. And of course for the family's well being.

Thank you all for your continuing support. A special shout out to the Dellolis clan who purchased a laptop for Michelle! This is fantastic! She can stay in touch when she can't get out of bed, and it will be a great resource in the event of a hospitalization. Thank you!