Monday, August 24, 2009

A Few Sunflowers In The Mud

Well I just wanted you to know it’s not all bad in my world. There’s been a few wins, quite a few laughs and many many dairy queen banana milkshakes to see me through all of this mess. For starters, I can drive again. I managed to fenangle the doctors into giving me my license back. I noticed quite an improvement in my memory and ability to keep my mind focused to complete a task. For example, I can now start making toast and actually get to the putting jam on top without starting the laundry ½ way through the process! Before the improvement the time spent by the bread cooking in the toaster was enough for me to forget about it completely. I would find it the next morning, hard shriveled and definitely neglected. Even my son had taken to repeating his requests over and over again until I fulfilled them. I’m sure most 2 year olds do this sort of thing but I found it rather helpful!

Anyway, I’ve made many successful batches of toasts and even a few full course dinners without mishaps. The doctors did their assessments and hesitantly approved my driving again. This little win was important to me and has allowed me to use my beans to get us out and about when we feel up to it. Yaaa Hooo!! I got a bit big for my britches after that and felt I ought to go back to work. I consulted with my friends and family who laughed at me and then discussed it in a round about way with my docs who asked me what I would do about all the pain, the days spent in bed and the constant nausea, bloating, itchiness etc. Oh yea- there’s that. I could probably report to work for about 1hr per day 1 or 2 days per week. Sounds like a model employee to me!!

With all this waiting, I do get rather impatient and feel the need to grab control of something. Find a way to be of use. My husband tells me I already have a job, to live in now and to stay alive. It doesn’t pay well but it’s important!

Then there’s the time I called Tracey to invite her to a fun filled night of errands at Walmart. We completed our task and then decided what was needed for us mothers and the chronically ill was an evening at the local watering hole. We piled in, Walmart bras and all and enjoyed a round of Shirley Temples while we watched the crowd mingle and dance. We laughed till our guts hurt (in a good way) and reported for home before the little ones even knew we were gone. And just to add a cherry to the top of our sundaes.... we got hit on as we left!!! Just a reminder to never underestimate the power of the unexpected or the local bar. : )

Anyway, just wanted to let you know, I still laugh, still eat, still run errands and now...I even DRIVE!!!

Love to you and thanks always for listening and taking a minute, and for helping me carry my sorrow, my burden and my fear. Always celebrate, always love, always laugh. I’m going to throw the party of a lifetime when this is over. And... you’re invited!!


Thursday, August 20, 2009

Home Again

Michelle is home again. No new findings much to the surprise of everyone involved(including the ER docs who expected to admit her long term). Pain management discussed. Thank you for your on-going prayers.


Wednesday, August 19, 2009

Prayers Needed

Michelle is in hospital this evening. She is in incredible pain that they were unable to manage at home. She called her medical team and they directed her to go to the ER. We waited about an hour in the waiting room before she was admitted. It was very busy, thus she was placed on a stretcher in the hallway. One by one the hallway filled with more stretchers. She convinced me to go home. I felt terrible, but I was in the way standing at the head of her stretcher. Her mom will be joining her soon, hopefully by then Michelle will be in a real bed. Please pray for some clarity on what is causing the pain, and for some much needed pain relief.

Thank You

Tuesday, August 18, 2009

Amazing Story

I can't seem to make it a direct link this morning. Copy and paste the following into your browser if you'd like to read a stroy that will make you go "wow!".


Thursday, August 13, 2009

Who's Scan Is This Anyway???

So Bizarre. When Michelle had her most recent ultrasound, there were some peculiar findings about the spleen condition and that there were gallstones. We all wondered if they were reading the wrong scan! Who knows, but when Michelle actually got the written report it read that there were no gallstones, but rather kidney stones, and the spleen was very enlarged. We'll probably never know what went wrong, it just kind of highlights how uncertain this whole situation is.

But on another note...
Our hearts are racing and our stomachs are in knots. The Toronto referral has been signed for at the other end, someone has it in their hot little hands! We want to celebrate. Why you ask, when nothing has been decided yet? Well, there is so much possibility that can come from this! The worst case is that they will agree with BC, but at least Michelle will know she exhausted all her resources and has been given the clear to continue waiting by one of the best in the world. Please pray that the Toronto team will review Michelle's file diligently and make the best decision for her well being.


Tuesday, August 11, 2009

Being Candid

Well it feels like time to write again. I have just read the blog after almost a month. This gesture of friendship from Tracey and all the phone calls, visits and patience has been a life saving gift. I am struggling to keep my spirits afloat these days. I want so much to be the brave, strong and fearless girl I thought I was. But instead I am very afraid, very overwhelmed, very guilty and very ashamed. I never meant to be sick for so long. I never meant to need my friends and my family so much. I never meant to be this useless for such a long time. I don’t know when this journey ends or what the outcome will be but I know it is out of my control.

I spent the last 3 days in bed again with fatigue, nausea and pain. My husband, the nanny and my mom filled in all the blanks and kept Tater tot and the household rolling along. I am so blessed to have so much support. Is it wrong to want to push it all away and stand strong on my own two feet again? I don’t want to cheapen my relationships with too much gratitude. A friendship holds itself together with mutual admiration, respect and common enjoyment. What if I am unable to be enjoyable?

I told my son that I was sorry to be so sick this week and that I missed him while I was sleeping in bed. He responded, “Sometimes it’s not easy being big. Sometimes it’s not easy being small.” These are words from one of our favourite bedtime stories. He wrapped his arms around me and gave me a big kiss. His love licked the wounds of my guilt.

I have rallied my head around getting to Toronto. My family and friends have urged me to go, my doctor’s here have supported and recommended that I go. I must be able to tell my son that I did everything I could to be here to love and raise him. Meghan and her family need an end as well. We all need to move on. Our lives have been on hold for too long. Tomorrow I round up all my paperwork to send to Toronto. Then I wait. It’s 3 weeks I’m told. Will they go forward? They are the best in the world. They do more living donor liver transplants in Toronto then anywhere else in the world. If we wait here, we may wait too long. It feels like we’ve already waited too long. I’ve sat nose to nose with my specialist. He gave me 45 minutes of his time. He tried to explain why the BC transplant team is waiting. I could tell it didn’t altogether make sense to him either. He said he thought I should go to Toronto and that he would never question their opinion.

While I wait I pray for days with a few beans so that I can be here, living life, loving my family, making good decisions, being strong, being loving, being grateful, remembering always to put one foot in front of the other. Work on the right now and hopefully I’ll get somewhere along the way.

Thank you my sweet little tot for your big boy, big hearted response to life. I know it must be hard to have a mama who’s not always there. Thank you for opening your heart to nanny Elizabeth and to all the people who are there for you when mama can’t be. The world is a big one and I know you will be stronger for loving and trusting more people at your tiny age. With all my heart and with every day I pray that my difficultly will not hurt you in anyway. I can see it has already affected who you are but you are bubbling to the surface with your sweet face in the wind. You are my little friend, my courageous boy. I love you.

To all my friends and family; I thank you for your prayers, your support, your kindness and all your love.


Wednesday, August 5, 2009

And Just To Stir Things Up A Bit...

It appears Michelle has gallstones. She had her gallbladder removed many years ago, so this was kind of a surprise. It is not necessarily the cause of her new pain. They do suspect they have to be removed though, as they present an opportunity for infection and Michelle can't afford that. Her pain remains poorly controlled. This evening I had a phone conversation with her while she lay in the bath tub, trying to find some much needed relief. Will this new turn of events delay things further? Will it change her odds in getting accepted into the Toronto program? Because she didn't have enough stress...

Her banding went well, although there were changes noted in her esophagus due to the numerous varices and banding over the years (correct me if I got that wrong Michelle).

The wait for a new liver has been excruciatingly long, and Michelle's reserves are running thin. It is heartbreaking for anyone to have to go through this.

You're always in my thoughts and prayers,