Tuesday, March 18, 2008

red wine, guitar hero and a whole lotta prayer

I've been asked several times over the last few weeks how it is that we are coping. To be honest, there is no answer to that question. As one mom who has walked this road before me said, "It's not like we have a choice. You do what you have to do." You love your child and because of that, you simply keep going, finding strength to do what needs to be done and learning to ignore the things that don't. I don't think that we are any stronger than anyone else or able, in some pre-ordained way, to handle things any better than the next person. I think that it comes down to the simple fact that most people have never been tried, have never experienced the unthinkable and therefore just don't realize the depth of the their own fortitude.

Most of the time, I try to remain upbeat but I would be lying if I told you that it is always this way. There are moments when I am caught unguarded and can feel it steal over me, wrapping it's icy tentacles around my chest. A sense of fear and loss that is so primal that the breath gets caught in my throat and the blood start to leave my head. I know what we're up against. I know what will happen if the treatments don't work, if a cure is not to be found. But, I've also seen what happens to the morale of those around me if I stumble or cracks begin to appear in the facade of strength that I've created. And so, I try to celebrate the little moments, to take joy in the small things- because if things go bad, there will be plenty of time for grief then.


boomer said...

I am a mother who has a child attending Earl Oxford School with another to attend in the fall. My husband and I read the brochure sent home with our son yesterday, and I have been reading from www.tatyannashope.ca and your blog this morning. I wondered if skynan and Janelle are one and the same person. Just trying to figure out who's who as you write.

My children and I will support your family through prayer, and our family will also support your fundraising efforts through donations and word of mouth. Could you share some further information about your family in terms of names of family members and ages of your children? I wondered if your other children have undergone genetic tests for Batten Disease. I'd like to pray specifically for each one of you as you go through your journey and take your trip to China as well as for those health-care professionals assigned to Tatyanna's case.

As a parent whose first child had a rough start to life and continues to face medical challenges, my heart goes out to you and I am so sorry you have to go through this trial. May God strengthen you and help you to keep a positive perspective along the way.

skynan said...

That would be me. :) If you could send me your email address (you can direct it to info@tatyannashope.ca if you don't want to put it up here) I wouldn't mind sending you an message with all the info you were requesting. I truly appreciate the prayers and support. I don't think we would be doing as well as we are if we didn't have so many people praying!