As I write this, I am sitting in a hospital room, using my Blackberry as my modem, watching and listening while my daughter recovers from surgery.
Elizabeth was born with a cleft lip and palate. She has had multiple surgeries over the course of her lifetime to repair the cleft, with the first one being when she was 2 months old.
This past Tuesday, she started the final round of surgery. At the moment, she has her lips sewn shut. They will fix this part of it later this month.
Obviously, if you think about it, this creates some challenges for her for the next 3 weeks. The sides of her mouth are open for breathing and feeding. She breathes through straws in the sides of her mouth and also breathes through her nose. She has to have all of her food liquified. She uses a syringe and feeding tube to eat, as she cannot suck the food through a straw or tube yet. She has to keep track of how many cc’s she gets down, so that her nutritional needs are met.
And…she can’t talk.
Elizabeth is quite a social creature, so being able to communicate is important to her. She is also a musician, so she loves to sing, play the piano, and play the trumpet.
At the moment, she can’t do any of that.
As her Dad, obviously my first concern is her recovery. Because she does not live with me, but lives with her mother, most of that time will not be spent with me. She will spend a day with me after she gets out of the hospital, since I live in the same town as the hospital, and her mother lives 60 minutes away from the hospital. This is just a precaution in case she needs to go back in.
The more I got to thinking about other aspects of her recovery time, I realized what a precious gift we have with our ability to communicate. Elizabeth can KIND OF talk through the two openings on the side of her mouth, but mostly, she has to either write what she wants to say on a white board that she carries around, or she can send a text message from her phone, or email or instant message someone. She can update her friends and family on her blog. And she can update her Facebook account.
We have LOTS of different mediums to communicate. I can see the frustration in her eyes when she is trying to tell me or someone else something and the other person doesn’t understand her. She can use some sign language, gestures, or just write on her white board. Or hope that someone ELSE in the room understands what she is saying and repeats it for her. Writing on her white board is slow, and I can tell that she would rather not have to use it.
My main point of this post is more personal in nature. I have learned a valuable lesson from watching her. Well, several actually, but one in particular. We have so many avenues available to us for communication. We as humans are very social creatures. We don’t always appreciate the things that we DO have. We take them for granted. Like the ability to speak to each other with our mouth. And when we lose it, we want it back NOW! And we are FRUSTRATED when we lose it and can’t get it back.
I said in a previous post that I believe that people are more important than things. Don’t take your family and friends for granted, because some day, you may lose the ability to talk with them. And that will really frustrate you.
Trust me on this one. I see it in my daughter and am frustrated FOR her.
More another time,
Tim
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It’s very hard when your kids need surgery (my son has had 9 surgeries for various defects), and with every surgery you would think it would get easier, but it just never seems to. Your daughter seems very strong as posted in her blog, and I will be sending prayers her way for quick recovery and get rid of the pain from the surgery and in her back.
My husband was born with cleft palate as well so my heart goes out to you all.
Raem0129–Thank you so much. I appreciate this. And dad….lol thanks for ur story there