Monday, February 2, 2009

The Waiting Continues

I started my own personal blog with these words two and a half years ago, but the same can be said today.

So much has changed since then, she is walking and talking now. She is in the preschool program for children with disabilities. She is fed mostly through her g-button. She is now profoundly deaf in her left ear. The episodes that once wracked her body have been absent for a wonderfully long time. She is hilarious and full of joy and we are now able to be a part of her world in a way that wasn't possible two years ago.

Still I wonder and wait, will we ever get a diagnosis? Will her progressive hearing loss affect her other ear? Will she ever outgrow the need of her feeding tube? Will the episodes come back? Will she always be a sick kid?

A life without diagnosis is one long exercise in waiting. We can treat symptoms as they arise but we cannot anticipate their arrival. As a toddler, no one could say with any certainty if she would ever walk or talk...but she did. Today, no one can say whether her condition is truly stable, if she will continue to improve or if one day, she will begin to decline. I'm eargerly anticipating her well-child check next month because this is the only time she will be age appropriate with her milestones, with the exception of gross motor. I don't know if this will ever happen again.

I don't dwell on the future much, because it is an exercise in futility. I could paint myself the rosiest picture possible and set myself up for heartbreak if it never comes to pass, or I could paint a scary picture to prepare myself for the possibilities and cause my heart undue stress. Either way, it won't change things for us. We won't know what the future holds until we meet it face to face.

Our life is a neverending drive through the hill country, we never really know what is waiting for us over the next hilltop. Sometimes we are met with the the most beautiful view anyone has ever laid eyes on, and sometimes we find ourselves on site at a massive traffic accident, cars piled up as far as the eye can see. There is no warning until we coast over the hill. It is the wildest roadtrip of my life. My hope is, as it always has been, that on the other side of one of these hills, we will pass a billboard with our names on it with an answer spelled out for us in bold, neon print...and if we just can't get an answer, then at the very least, maybe we'll pass a sign that hints at what lies just over the next hill.

 

17 comments:

  1. Every time I read a post from you I feel grateful that you're sharing your world with us.

    ReplyDelete
  2. "I don't dwell on the future much, because it is an exercise in futility." makes me sad but at the same time, those words are why I love reading you - because you don't paint life in an unrealistic way. My respect for you Kyla is way up there (look up - yup - right up there).

    ReplyDelete
  3. what a gorgeous post, what a gorgeous girl. You evoke so beautifully the waiting game. Thank you for the words...

    ReplyDelete
  4. And now we gett o read your beautiful words over here as well. The world is a sweet place....

    ReplyDelete
  5. You are such an awesome Mom to a fabulous little one.

    ReplyDelete
  6. I'm so glad you accepted Christina's invite. You are an awesome mom! You are also one of my dearest friends.

    ReplyDelete
  7. Kyla - I have read your blog for quite some time now, and you have been an inspiration as we have discovered some of the mysteries working within our Spark. Thank you for all that you have shared and the example of good momma-ness you provide.

    ReplyDelete
  8. You are an amazing Mother. Thank you for sharing your journey with us. I want to also thank you for being a good friend. I look forward to hearing all about the amazing thingss your little girl does.

    ReplyDelete
  9. Welcome to this new space! Good to read you here, too.

    ReplyDelete
  10. "well child check" has a lovely ring to it. May she continue to laugh and learn! You are a great mom.

    ReplyDelete
  11. a wild ride, indeed. at least your fellow passengers are adorable.

    ReplyDelete
  12. Gorgeous you. Your ability to be so accepting is both stupefying and inspiring.
    It's odd to see your words here. Somehow they're a little different. Different good.

    ReplyDelete
  13. Julia's ped tried to comfort me by saying that the future is unknown for all of us. He could never really understand, his kids are healthy, but he said it in a sad way that has stuck with me.
    It is harder when your child is not typical but there are no guarantees for any of us.
    I love your writing Kyla and am so glad to see you here.

    ReplyDelete
  14. Profoundly beautiful, my friend.

    ReplyDelete
  15. Your little angel is lucky to have you as her warrior Mom. I know I'd feel better with you in my corner, if I were her. Hats off to you.

    ReplyDelete