Skip to main content

Medical appointment overload

Here it is now almost eight months since the horror of Xavier's relapse and severe meningitis and the pain still lingers.

Will it ever go away? Not likely.

Our healing is a road that never ends running parellel with our reality of managing an incurable cancer. It stretches across oceans, through that darkness of space, up to light where our Heavenly Father hears our cries.

Still I hear the sorrowful moans from my childrens bedrooms. Another bad dream I suppose, a nightmare that had come true.

We entered another barrage of appointments; each a reminder of this journey we call childhood cancer. The weeks before the next MRI are always the hardest. For all of us.

While some live their lives never having to step foot in a hospital with their child (aside from bringing them home after their joyous arrival) others see the walls of the hospital as a second home.
Rarely do we walk the halls of Mac without recognizing a familiar face. It is strangely comforting.

We live different.

I ask that you dont judge us until you walk in our shoes.
It is a way of life for us that I both praise and fear. It brings more joy than ever imagined and more pain than ever described.
You feel things you never knew existed. A blessing; a curse.

A life I will always be thankful for.

Comments

Popular posts from this blog

The aftermath is MESSY

We are on the road to recovery!  Physically, Xavier is improving daily with his regular physio and pure determination only a child possesses. He is learning to walk again and use his left side, all while building back the muscle he lost.  He has at least another month of treatment left, but we are so fortunate we can manage it at home and at a dose that causes fewer side effects than he faced last month.  Xavier is determined and I admire that in children. The lack of self-pity in kids we have seen  on his cancer ward are so inspiring. Instead they use that energy to heal, and set goals for recovery.   Still there are residual symptoms that are concerning. He is choking on liquids more frequently, suffering from reflux and is unable to move his toes on his left foot. Seems minor but as he tries to walk now his toes curl under his foot and trip him. Who knew how important straightening your toes are!  But the lingering side effect of treatment ...
Ever since I learned how to write, I have been writing. I am not a professional, nor do I pretend to be. I am not an English major or a published author. I wrote the news for years (almost 10 if you count my years at my college newspaper). But the benefit of writing for me is not for money; it's for pleasure. Writing makes me feel good. Since I was 10 years old I kept a diary. I wrote down my thoughts, my daily activities and everything in between. It was my stress relief - how I figured shit out. I can trace every low point in my life to a time when I stopped writing for pleasure. Pen to a paper, fingers to a keyboard, I have to write. My sanity depends on it. So, here I go. I intend on writing about my life, about stories I have swirling around in my head. And maybe share some excerpts from my diaries as a child. If no one reads this, that's fine. It's not for anyone else but me. But if they do, that's ok too. If I can bring a tear, a laugh or a smile to someone e...

I haven't stopped loving you

I haven’t stopped loving you A letter to my son in heaven on the third anniversary of his death Photo by Mark Garrett/Creative Works Photography Dear Xavier,  I have noticed you don’t visit me as often anymore and I miss your surprise appearances in my dreams. Your sweet little voice I used to hear in my head is now just a whisper I can only hear when I really try to listen.  But, I haven’t stopped loving you.  Days go by and I don’t long for you like I used to. I set the table for three without a second thought. Your presence at the kitchen table feels like a lifetime ago - almost hard to believe it was even real.  But, I haven’t stopped loving you.   We put away some more of your things and rearranged the room we had made for you. Mackenzie now plays there beside a cabinet full of all of your Star Wars characters. There are fewer pictures of just you around the house and a few more of us as a family.  But, I haven’t stop...