Mouthsores and the mundane

Dear Friends

I have been starring at a blank computer screen for a long time now. My brain looks the same – blank. I am in a world of confusion right now. My body has decided to go on strike (as it has been known to do in the past!) and I am seriously hurting. It seems as though I move at a million miles an hour – and the only way to stop me is to physically put me on my “you know what”. I am so frustrated by my lack of energy, enthusiasm and desire. I wanted this to be an amazing time for doing great things with Christian and I can barely get out of bed. So instead Christian and I are sitting here in bed together watching Home Alone. I love him so much I don’t even have the words to put it down. “How do I love thee? Let me count the ways;” I love that he just turned to me and says, “I can’t believe I am watching a Christmas move!” I love that he tells me he loves me all the way to Tatoine and back. I love that he hugs me and says he is never letting go, “we will just have to turn 6 together!” I love that he softly rubs my forehead when he knows I have a headache. And after I have a nap in the middle of the afternoon he asks me, “Mommy – do you feel better now?”

Horse ride at Church picnic - yahoooo

I look at all of my children and wonder how I got so lucky. Evelyn has such an amazing imagination, she meows at me when she is happy and tells me that we are best friends. Ryan is such a cheeky little guy; he runs around with wild blond hair and has the best giggle when you tickle his armpits, “more mommy more”. Today my mom decided to tell him she was going to China so now whenever somebody is missing from the house he tells us they have gone to China! Tonight Evelyn and Christian played hospital together; checking each other’s blood pressure, giving needles and listening with the stethoscope. We cranked the tunes this afternoon and danced to some Christmas music, my heart near exploded when I saw them grab each other’s hands and danced around in a circle. Christian attempted to ‘dip’ her at the end of the dance but somehow I have a feeling that Evelyn will be the one doing the ‘dipping’ in life!

Deb from Avenue Baker and Christian's AMAZING cake!!!! God bless you

So our days at home have been painful (for me!) and great for the kids. Once again they are having so much fun playing together, I love to listen to them come up with random games to play and endless things to dream about. The birthday party on Sunday was something I will remember for the rest of my life. So many people came to celebrate with us (it was a little crazy to say the least!) but it felt so good to see all the people who I know wanted to come and celebrate with Christian. We were so blessed by the Avenue Bakery here in Airdrie who graciously donated an amazing birthday cake for Christian (and owner, Deb, just so happened to show up with one for Chris as well!) There are so many people who have gone above and beyond for our family and it has made our lives so much nicer. The birthday was nuts from the get go (with Barb, Louise and Tracey coming early to help me decorate) and then people just arrived in throngs. Darth Vader piñata’s, inflatable light sabers, amazing food, out of this world cake, and friends and family made this an amazing memory for our family.

Christian and Jayden getting ready to blow out the candles!

So what is really going on in my mind? Where is my heart? How have things really been since we have been home? There is no point in lying, God knows by heart so it is much easier if I just talk about it. I am scared, we fight the fear every time Christian says, ‘my tummy hurts”. I have to constantly remind myself of the amazing miracle we have been given; I have to remind myself that God is in control, regardless of what I think could be happening in his abdomen. Multiple times a day I have to keep giving my fear over to God. It comes at me from all over and it is all I can do to keep from throwing up. Little messages of doubt seem to creep under the door and tap me on the shoulder. “hello – I am still here……” I constantly repeat – satan get away from me, get out of this house. I know that God is working magic in our lives and he will continue to bless us. But each morning I ask for help from Him, to guide us as we look at different treatment options, to help quash my fears, to show me the greatness in my everyday dull life. We have had such amazing support from our church and Doug and Loralie. I am so thankful God put us together for this journey.

I find it ironic that as I read back over my blogs I notice how incessant my desire was to travel and be different places with my kids, to go to beautiful beaches and experience things together as a family. And now here we are in September doing things so differently than what I thought we were going to be doing and all I want is normal. Chris was meant to go back to work, Christian was going to start kindergarten and Evelyn was going to try preschool. And once again September has brought maddening circumstances where cancer has crept back into our lives….I guess it is more like slapped us right across the face. And I feel so much sadness at listening to other people talk about the mundane and getting back to normal, back to routine. Routine sounds so good to me right now. I long to feel “normal” and have the worries of normal life. I remember feeling this way a few short months into Christian’s treatment. I guess its just watching everybody else around us post pictures of first days at school, excited at new beginnings. I am praying that this is our new beginning. The God has created a situation where life will start a new without cancer.

My prayer is that I can learn to live each day, just for today. I am still going to plan for the future but all that we are really given is today. So what can I do today to help Christian, Evelyn and Ryan have a great day? What can I teach them today that will make them better human beings tomorrow? Well my brain is discombobulated and I think my words are coming out in the same way.

 So I will sign off tonight with a sad note. Yesterday we had to say goodbye to another member of our oncology family. Ty Sparks was an amazing 17 year old who fought harder than any person I know. His battle with cancer and its after affects lasted almost 4 years. I am so thankful for his mother Anne, who took Chris and I under her wing and taught us the ways of the oncology world. Who always had a smile and encouraging word for Christian. I am thankful for she has faith and was able to lean on God for strength and courage. I am so thankful that Ty is resting in heaven, completely healed and in no more pain. I am grateful he finally gets to feel the soft, strong arms of the Father around him as he watches over his earthy family. God bless you Ty. Rest peacefully and watch over the rest of your ‘family’ who are still fighting. 

Christian and Daddy with their 'gifted' cakes from Avenue Bakery

Today I am thankful for:

1.Pain medication for my mouth….thank you morphine and xylocane

2.Having the whole afternoon to sleep when you feel horrible

3.Random birthday gifts for Christian that show up on our door step!
4.Ty Sparks finally knowing it all

Getting ready to smack the pinata!

I LOVE MY CAKE!