October 1, 2010

Today's Amazing Revelation

I had the oddest revelation today.

I got together with some of the moms from A's new preschool class for lunch. All of these women are new to me; last year A went to the morning session, and this year she's in the afternoon session, and there has been no overlap of kids from year to year. I was excited to get together and meet some of the moms, as I see them at drop-off and pick-up but really hadn't had a chance to actually talk to them yet beyond basic pleasantries.

Anyhow, somehow the issue of A being in therapy came up. Someone asked what kind of therapy she is in, so I answered "speech therapy, physical therapy, adapted P.E., deaf/hard-of-hearing therapy, horse therapy, and soon we'll be adding occupational therapy". She then asked me why A needs so many therapies. It hit me: These women just met A. They have no clue about her medical background. They don't know that she used to have a breathing tube, feeding tube, just learned to walk this year, etc.

It was quite the revelation, to say the least. Until this point, everyone in my life fell into one of two categories: people that were with me from "the beginning", and people that I met in more recent years.

Many of my current friends (and all my family, of course) were there in the beginning. These are the people who knew me before A was born. They knew me pregnant with her, and saw me through the grueling 12 weeks in the NICU. They are the ones who called me all the time, who brought me meals, who watched D (then age 2) so that I could spend time at the hospital. They were with me when I was agonizing over the decisions to get her g-tube, and then her trach. They were my shoulders to lean on when I worried about her not meeting her milestones on time. I quickly learned, through the whole ordeal, who were my true friends and who weren't.

On the other hand, many of my current friends are newer. These are people I met AFTER A was born. I met some people taking mommy-and-me and music classes with A. I met the moms through her preschool. I met even more moms through my son, D. Since A was born, D went through 3 years of preschool and kindergarten. When all of these moms met me and my family, they met a mom who had a daughter with a trach and a feeding tube. A came "as is". My new friends might ask why she had a trach, or why she wasn't walking yet, but they were new to her story. However, they quickly became A's cheerleaders, and were just as overjoyed as my older friends when she started to hit her milestones, walked, got her tubes out, etc.

It hit me today that every person I meet from here on out--whether it is a mom from A's preschool or D's 1st grade class, someone from my synagogue, or a new neighbor--will not know what we've been through. Sure, they might see a beautiful little girl with glasses and hearing aids, who has a speech delay and can't quite run or jump the way other kids her age can. But they have no clue that she used to have a plastic tube in her neck. Or a plastic tube in her tummy. Or that she didn't walk until this year, at age 3 1/2. Or that her speech is 2000% improved from where it was even a year ago. Or that she almost died but now is a living miracle. They wont' know until, or unless, I tell them.

Wow. It's a whole new chapter in my life. I think I like it!


  1. I am stuck in that phase where I have one in Kindergarten and when I come to the school with my other child with Special needs, a tube and all. I see them starring, I hear them whispering and feeling sorry for us. My son has been in the school for 1 month & I have already had one Mom ask me if I would like food Gift Certificates. To make matters worse we were in the paper so everyone in the school now knows who we are. But only ONE person will actually talk to me. I need guidance on what to do next. I am happy you wrote this post. It makes me feel like maybe one day we will be where you are. Having to tell people what we went through. I am so happy that you are happy. And I am happy that A is happy. Awesome. Just Awesome. Season's change. And you are in a new Season. Welcome.

  2. It's like a secret makeover!

  3. I'm new to your blog so I don't know the medical backgrounds yet...what condition does your daughter have? An old coworker of mine has a son with a condition that causes his skull bones to thicken. He has to have a trach too and learned sign language. It was also really hard for him to gain weight so he has to eat a really high fat diet.

    I think that your situation can apply to a lot of things...There's people in my life that knew me before--at 250 pounds--and people that have never known me as overweight. They are shocked to see the photos. They don't understand what I went through to get healthy, and they don't see it as being me.


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