Monday, March 11, 2013

Two Years

Juliana turned two last week! 

I like to use these big milestones as a moment of reflection. It’s hard to believe that just two years ago I didn’t know much about NICUs, feeding tubes, medical equipment, developmental delays, or rare genetic conditions.

David was worried about Juliana the night that she was born. I wasn’t. I remember clearly that we were in the postpartum room and we could see the lights of the NICU across the courtyard. “Don’t worry about her, she’s going to be fine.” It was a rare role reversal. I simply wasn’t myself - I was too shocked from such a fast and unexpected birth. I also blame that initial lack of concern on the complete lack of birth bonding. I don’t remember when exactly I was able to hold Juliana, but it wasn’t until her second or third day of life.
A brief trial of room air
For a long time it was difficult to not focus at least somewhat on the disability: she didn’t eat orally, didn’t make eye contact, didn’t smile, was extremely sensitive of sensory experiences, etc. We had to focus on these issues in order to improve them. Now we have finally arrived at the point where we can sit back and watch her develop without worrying. We can enjoy the process.
It’s only recently that I have returned to that place of not worrying. Oh, I have little concerns here and there. I wonder if vision therapy is really going to help. I worry that the craniofacial specialist will see a need for surgery. I’ve been concerned about her hearing. I wonder if we’ll ever be able to travel as a family without having to bring homemade broth with us everywhere we go. I still have not completely solved the puzzle of eczema and it is driving me crazy. But overall, I don’t worry about her. I don’t worry about her development. I don’t worry about her health. It’s not that things are perfect, but they are in a good place.
And another thing that wipes away any less-than-positive thoughts or concerns? I’m crazy about her. It is a pleasure and an honor to be her parent. In the special needs community I sometimes see a back and forth on whether disability is a blessing or a curse. It is what you make of it, I suppose. Sometimes I am not sure if Juliana is really doing so well or if we are really just so blinded to disability. Perhaps a mixture of the two. In any case, it is a wonderful place to be.

I look at my kids - both of them - and I feel like I have won the lottery.

Until they begin to simultaneously complain about one thing or another, but that’s a whole 'nother story...

2 comments:

  1. Your words are encouraing. Thank you for posting. I have two special needs boys. The first was diagnosed with hydrocephalus at age one and had to have brain surgery to correct it and although he is healthy now (after an additional two reconstructive ear surgies in the past two years) he is still delayed by a few years developmentally and emotionally. My second son was a failure to thrive baby and just recently he was diagnosed as having an intellectual disability with the development of a 2 to 3 year old. It's been difficult and I've learned to lean on God in all things as He is sovereign. Your posts have lifted me up in my struggles. Thank you!

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