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.
I thought it was going to be simple. Go in, take a single photo of each child for their passport and leave. Sounds easy... right? I timed the trip for when each child should be at their relative best, plied them with the elusive gold known as a happy meal and promises of time in the toy isle and then headed to the Walmart photographer to get the necessary task done. Never did I expect that the years spent unconsciously conditioning my children would come back to haunt me. Like a pair of well trained Pavlovian dogs, every time the photographer stood behind the camera the girls would smile. Have you ever tried to convince a child, particularly a child (read: Lexi) who is thrilled with the fact that they have suddenly become a pint sized celebrity with their own personal paparazzi, not to smile? It's extremely difficult, let me tell you. Because smiling is absolutely not allowed on passport photos, Trent, the photographer and I kept the fellow patrons thoroughly amused with our antics. We tried playing "happy face..sad face.." We tried holding their lips together and then quickly ducking away. At one point, I thought I had a brilliant idea and we all started humming. It sounds like a good idea...doesn't it? I thought so too! Unfortunately, the girls did not agree. Lexi, looked us like we were completely insane, and stated singing. After all, why hum when you know the words? Tatyanna, despite her relatively chipper demeanor, was having a bad day seizure wise so when her turn came I sat, ducked below the camera's line of sight, holding on to her midsection to keep her safely on the stool while Trent and the photographer tried to work their magic. They danced around holding stuffed cats and bunnies to keep her attention and she pulled my hair and tried desparately to thwart my attempts to keep her stationary. It was not pretty. In the end, we have photos of two girls looking kind of confused and slightly amused that may or may not pass inspection at the passport office tomorrow and photos of two parents looking completely disheveled and more than a little frazzled. I'm thinking that when the time comes to present said passports at the airport, after lugging several suitcases, carry-ons and two cranky pre-schoolers who hate to travel, the likeness will be unmistakable.
Has it really only been 3 weeks? A mere 20 days since our lives were shaken up and turned upside down; never to be the same again? I feel as though I've aged 30 years in that short time. Nothing is the same. The world is different, my perspective permanently altered. Small things are inconsequential. Moments that once seemed mundane are now carefully preserved, tucked away and hidden in the dark recesses of my mind. It's funny, everything has changed and yet nothing is different. Housework needs to be done, groceries need to be bought. Life goes on. And, even though there could be so much sadness and despair, there isn't. Our house is full of love, laughter and hope. To be honest, it's the very least we can do for her.
This morning we got the news we had been waiting for. I coudn't sleep. I knew the email was coming and I lay awake in the darkness of the early hours waiting for the familiar sound of the computer signalling the arrival of new mail. Although I didn't know if it was good news or bad, I wanted to read it the moment it arrived. I read the words and reread them, scarcely able to comprehend the meaning. "good news......your daughter's a suitable candidate......" We're going to China!!! I know that it's not a cure, but at the moment, it's all we've got.
Tatyanna (gleefully sending her plush dumbo through a series of gravity defying loops and dives) - Look!! Dumbo flying!!!
Me (because I'm a mom and as such like to state the obvious and then ask dumb questions about it) - Wow, look at that! Dumbo is flying! Is he using his big ears?
Lexi (interupting with all the disgust and self importance that can be mustered by a 2 year old) - No! He has a flying mouse. (this is followed up by the "are you stupid?" look)
Hmm. Maybe we had it wrong all along. Maybe it has nothing to do with the ears. Maybe it's really the mouse that somehow imbues its magical powers upon a poor deformed elephant and gives it proxy flying abilities. I've got to say, I've never seen it quite like that before.
It's underway. Our massive fundraising campaign has begun. The trust account has been set up, the date for the social has been confirmed and a local printing company (Webber for you locals....please use them for your business as they rock!) has offered to print up anything that we need....for free! While I realize that it probably costs them very little, it would have cost us $250 for 250 full colour pamphlets at Staples or around $200 at a different quick print place. Webber didn't hesitate, they simply grabbed the original copy, put it on their copier, selected the best paper and told us to grab coffee or something while we waited. Trent and I kept waiting for the catch, thinking that perhaps they would want the "at cost value" to be reimbursed or some advertising or something. The fact that they just printed everything for free and then offered to do more as needed is extremely appreciated. To be honest, I'm stunned with the reaction that our situation is having on people. I'm not really sure what I expected but the willingness of people from all over to do whatever they can has left me feeling that perhaps there is some good in humanity after all.
Today I took the forms from Children's Wish Foundation to Tatyanna's pediatrician to be signed. There's a large spot for the dr. to fill in with a heading that goes something like "In what way do you feel that the patient's diagnosis is life threatening." It should be interesting to see what he writes. I'm thinking that "see diagnosis...'nuff said" should probably be sufficient. It's kind of surreal to be honest. Today, Tatyanna's had a really good day. We ran errands all morning, she played for several hours this afternoon without falling down once and is now sitting in the living room, glass of strawberry milk in hand, watching "the fox and the hound" for the bazillionth time. It's hard to comprehend that it will all just get worse. In some ways, I think that I refuse to believe it. I know what the diagnosis means. I've talked to other parents. I'm not naive to think that it won't happen. But, I don't believe in absolutes either. I have seen the impact that prayer and positive thinking can have. I'm not prepared to give up without a fight. If we lose the battle, there's plenty of time for grief then. In the meantime I will do whatever I can to help keep my little girl as happy and active as possible. Kids are perceptive and nobody can live very long without hope.
Sometimes I wonder if perhaps I should actually use the spell check feature or maybe proof read for errors before I hit the "publish" button but I never do. Sorry and thank you for being so tolerating.
Will winter ever be over? It's March already, I'm ready for bunnies and mud puddles and grass....I'll even be happy to see people wearing crocs. Even big people, who should never wear such heinous footwear.