The topic for this month is coping and hope for the future — Share something about hope or coping from your experiences. It might be something you have learned or that you are trying to learn. It might be something that inspires you and helps you keep holding on. I’m looking forward to seeing what you have to share this month…
(For carnival rules and information click here.)
A touch of blue. You might not see it, but I do. It was there then, it’s there now.
Even when everything is going “well,” it’s there. Always will be. That little question mark, that doubt, that worry, that “what if…”
See that photo above? I remember the day well — a sunny day in late spring, when the warmth in air the begins hinting of summer. A baby out enjoying the lovely weather, such a carefree moment!
Oh, but it wasn’t.
Hours and hours of planning were required to get her out on that lawn, beginning the night before. Her continuous tube feeding rate was cautiously turned up, just a tad — enough to compensate for the time she would be outside, but not so much as to trigger her reflux. Her feeding had to be turned off at least an hour before going outside as well because if she was moved too soon after stopping the feeding, she would throw up. We couldn’t really afford for her to lose feedings — her weight gain was barely satisfactory as it was. Then there was the filter to cap off her trach. That couldn’t be put on until at least an hour-and-a half after the tube feeding stopped or she would gag and lose her feeding from that too. She needed to have the filter on before going outside. So much hassle to accomplish such a simple thing!
But we did it anyway. Because we needed to. We both needed the fresh air. We both needed some light that wasn’t generated by a glass bulb.
So after hours of effort, there we were. Sitting on the grass, squinting at the light. Doing something “normal”. Something that other families take for granted without a second thought.
I snapped off a few precious shots with my camera, knowing it would be a while before such an effort would be undertaken again. As the camera clicked, there it was. That touch of blue. See it? Right there under her arm. It is the blue strap to her heart rate monitor. The one that I didn’t dare take off before coming outside for fear that the maneuvering required to get it off of her before going outdoors or onto her when coming back indoors would be too much for her. She would have to have it back on when she came in for a nap, so it didn’t make sense to take it off. On it stayed, peeking out just the tiniest bit in each of my “normal” photographs to remind me just how very far from normal we really were.
I used to resent it. In some of our photos, I photo-shopped such things out. I used to tell myself that it wasn’t fair, that Jacqui and Ken and I deserved “normal” as much as anyone else — in some cases maybe more, because we would appreciate it and understand its worth.
Well, we still have those touches of blue — scars, G-tubes, foods that have to be avoided, care that has to be taken, “what if’s” that will always be.
But I don’t try to photo-shop our life into someone else’s “normal” anymore, because in doing so I miss the now.
When I look back at that set of photos now, I wish something. I wish that I hadn’t spent so many of those precious minutes trying to get a camera angle where I didn’t see a trach or a heart-rate monitor belt. Not that I don’t treasure these pictures — I mean, I believed then and I believe now that it will be important to Jacqui some day to have some photos like this one where the medical aspects of her life aren’t so front and center. I’m glad to have them — but I wish I had known then how to relax just a little bit. That I had put down the camera a little earlier than I did and started snapping moments with the lens of my heart instead.
I have learned that this is our life, and it’s a good life. There will always be those touches of blue, those “might-have-beens,” those “what-ifs,” those things that no one else sees or knows that remind me of how close we came to losing her, how we could lose her yet. But that is not where I want to focus my lens. I want to zoom in on the smiles, the giggles, the light in the eyes, the lilt in the voice because that touch of blue is a maybe — but those other things, they are the here and now. I cannot afford to trade them for “what-ifs.”
What About You? What would you like to share this month?
parenting children lymphatic malformation tracheostomy NICU hope faith G-tube motherhood Finding Courage Through Sharing Blog Carnival Finding Courage Through Sharing medically fragile blog carnival
As always, a beautiful post of reflection with wonderful applications for today. Thank you. I love the photo!
September 25th, 2008 at 10:35 am
Michelle,
This reminds me of Emily Pearl Kingsley’s Welcome to Holland essay a bit.
Such a gorgeous shot of Jacqui, and I did notice the “touch of blue” because my girls wore them too. Isn’t it funny how we parents of medically challenged children often see things the rest would miss.
I just love this carnival.
Jen, mom of Grace & Meghan
September 25th, 2008 at 12:14 pm
Thank you for sharing such deep thoughts, and memories. I couldn’t stop starring at that tiny little Miss J, and I felt like I was right there with you.
September 25th, 2008 at 12:39 pm
Once again, my hat is off to you. What a beautiful and awe-inspiring post. I truly need to embrace my touches of blue more readily … although, I might have to call them my touches of red since it is my 3 year old red-headed son that this most pertains to.
September 25th, 2008 at 4:33 pm
What a beautiful picture and a beautiful post! Thanks for sharing this experience.
September 25th, 2008 at 7:40 pm
My post is up—
It may not be….”completely” on topic– but a emotional thoughtful post anyway!
September 26th, 2008 at 11:13 am
Truly touching and shows how we really do need to focus on the simplest things in life that “normal” families would otherwise pass by and not pay attention to.
Thank you for sharing this - it is truly beautiful.
September 26th, 2008 at 11:32 am
Beautiful thoughts, beautiful words, and a beautiful baby girl.
September 27th, 2008 at 5:47 pm
I love this post. What a journey you have walked and continue to walk. Thank you for forging the path.
September 29th, 2008 at 7:29 pm
Oh Michelle,
That was gorgeous and so open and honest.
My heart aches for you and the little girl.
It’s true there are things that are taken for granted until they are taken away from you. I will be terribly late on this but will try to post tomorrow.
September 29th, 2008 at 7:31 pm
I agree with everyone…beautiful, simply beautiful all the way around. It’s Romans 8:28 lived out loud.
October 2nd, 2008 at 6:22 am