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Perspective

January 25, 2012

God puts rainbows in the clouds so that each of us – in the dreariest and most dreaded moments – can see a possibility of hope. ~Maya Angelou

I remember the haze of last spring. The fog of fear that seemed to cover every thought, word and action. I remember how lonely it was. I was afraid to even talk about it, even with my husband, for fear that saying it out loud would somehow make it more real. I explained some of this in a previous post here.

The doctors believed that they had found a diagnosis for Mary. Something called ataxia telangiectasia. A progressive and fatal disease that would see my baby girl in a wheelchair by the time she was ten, and in a grave before she turned twenty. The disease would steal her ability to walk and balance, and it would slur her speech. It would then give her cancer and a sensitivity to radiation that would make treatment of the cancer extremely difficult. If the cancer didn’t kill her, then she would likely die from pneumonia after catching a common cold from a sibling or friend. This is what the doctors were telling me. This is what they believed she had. In order to get into the special clinic in Baltimore at Johns Hopkins, she would need to have the genetic testing completed. So we waited for the results. We waited for two months.

Suddenly, the little things really didn’t matter any more. A parent boasting on Facebook about what grades their child got on their report card, somebody’s soccer game, a spelling test, the latest makeup trends for spring, people’s plans for Easter. It all seemed so frivolous. Of course I pretended to care. I listened to the latest gossip with a painted smile. I was in a daze. I couldn’t talk to anyone about it. Other children in wheelchairs at the hospital caused me to gasp for breath. Healthy children running through the playground made me cry. I had a constant pit in my stomach. I carried my daughter with me everywhere, never wanting to put her down. I wanted to hold onto her forever.

I remember calling the doctor twice a week to see if the test had come back yet. The doctor had thought 4-6 weeks. By week two, I was a wreck. When week 10 rolled around I was numb. Finally, the Friday before Mother’s Day, the doctor called with the surprising result- “The test for the ATM gene was negative.” I remember asking her to repeat and clarify herself several times. I felt like I was dreaming. I don’t think I realized up until that point just how certain we had been about this diagnosis. I don’t think I realized it until the huge choking sobs of relief erupted from deep inside my chest.

To say I want to go back to that time, would be a lie. It was, to be sure, the most torturous period of my life. To be able to even entertain the idea of a future for my daughter feels so much like the gift that it actually is. How many people get to understand just what a gift each day is?

There are times lately, when I have to remind myself what it is that we are working so hard for. After a long day of 7 hours of therapy for my youngest, on top of several hours of therapy in addition to school for each of my oldest two, it can start to feel overwhelming and frustrating.

I thought very seriously within the last few weeks of just stopping all the therapy, because for so long we have had a mindset of “today could be the beginning of the end,” so why waste it on therapy for the future when there might not be a future? The endless testing, the questions, the lack of answers, while frustrating and frightening, are starting to add up to one thing: a future. So the question comes back, why waste the time on therapy? The answer, because it finally looks as though my baby girl has a future. Words and thoughts I wouldn’t have dared to utter only a few months ago. Something for which I am beyond grateful.

At the same time, I want to return in some small way to the very clear reality that we lived last spring. That every single moment was precious. During that time, I tried to reassure a close friend over email:

Whether or not she has this or something else, or nothing at all, the fact that they are looking is a blessing. It reminds us that every single moment we have with her and our other children is priceless. We have a hint, a warning, a reminder. That is a blessing that our neighbors did not have when they suddenly lost their toddler. There were things they might have done differently with him if they had only known their time with him might be short. L (Mary’s PT) asked me when we were planning on Disney World. I said not until Mary is older and more able to appreciate it. “Well, go now and go later.” Why not? We left the dishes the dishes in the sink the other day and just took the kids out for the afternoon. So we don’t get the back door fixed, or the house vacuumed today. Nobody regrets those things, they regret not spending time. So I have to look at all of this that way. It could very well turn out that all of these tests come back negative. Heck, we’re due to get these results around Easter- that’s gotta be a good sign, right? But whether we have 5 years or 75 years with her, we will know to cherish all of that time. That is the gift we have been given. And Mary has given that gift to everyone who has met her. People light up when they meet her, in part because of the spirit with which she meets her challenges. God is not doing this to us, he is doing this for us.

I remember writing those words, trying to convince myself of their veracity. I sobbed while I was writing it, angry that I should even have to have this kind of conversation. Why couldn’t I just enjoy my baby girl? Why did it have to be so damned critical that we enjoy each precious moment? I wanted to be able to just take it for granted, like so many other parents get to.

At the same time, it puts things back into perspective for me. Life can get so busy. We do forget to treasure the small things sometimes. It helps to be reminded.

We still haven’t taken that trip to Disney. Soon.

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Photo from: http://www.collthings.co.uk/2008/08/cool-rainbows.html

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2 Comments leave one →
  1. January 26, 2012 12:17 pm

    Your blog brought me to tears. My 2 year old son is currently in a PICU because of seizures.. He has delays and doesnt walk yet either.. Today I was walking in the hospital and I saw a little 3 year old boy walking with his mom getting in her way and skipping around. I was like you, my heart yearns for the day when I do that with my son. I understand how you feel about questioning, “why can’t we be the ones who are allowed to take it ( what ever it maybe) for granted???” . My heart goes out to you and your family- you are NOT alone and thank you for sharing such a beautiful blog.

    • January 26, 2012 1:28 pm

      I know what you mean. I felt like such a terrible person giving other babies the “stink eye” just because they were healthy and walking. My husband used to jokingly whisper in my ear, “you want me to kick that baby for you?” Obviously a joke, and really awful, but really, how dare they parade their healthy kids around in public like that! My daughter was finally able to leave her walker behind just about 2 months ago. She’s still pretty unsteady, but it is amazing, it just took a lot of work.

      I can tell from reading your blog that your son has an amazing mom. He will be okay. And so will you. We’ll be praying for you.

      In the meantime, there’s a blog written by another autism mom, but every once in a while it applies to all of us. Not sure if you’ve read this one, but here it is:
      http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/
      We’ll be praying for you and your family. Hang in there. Hugs.

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