She Did It. . . We Did It.

"Call in your family." Those were the words of the doctor as my daughter laid in the bed in a room we had stayed in many times before.  She was septic again, but this time, she was blue and unresponsive.  We had agreed on a DNR making it unlikely that she was going to make it through the night.  The only "family" I had to call at the time, was Peter.  1 hour later, I was joining her in the ICU watching her eat crunchy cheese doodles (the ONLY food she ate for the first 9 years of her life) and laughing at Barney.  I immediately revoked the DNR, never to sign another one for her.  I figured, if she could get that much better in one hour, then what would I be doing if I denied her that hour to get better!!  It wasn't my place to decide when her time to go was. . . .

18 years later, I have finished moving her into her first "apartment".  She is sharing a house with another disabled woman.  She is nervous, but happy.  I am nervous, and  happy but very sad too.  It will grow on me, just need to let the reality of it all sink in.  She is gone and out from under my wing. 

This little girl, was the apple of the eye from the day she entered my classroom.  Once, when she was inpatient at Harlem Hospital (which, by the way, was a TERRIBLE hospital), Peter and I went to visit.  He knew she meant a lot to me, but when we left. . . "NeeeeNeeee" (her attempt at Renee) was all we could hear down the corridor.  It was heartbreaking and truly tore at my soul.  She was my daughter from that day forth.  I went and sat with her each admission.  The group home never even knew, no one was ever there.  One day, her feeding pump was gone.  She was tube fed, 24 hours a day, so why wasn't she being fed?  The adult floor was short pumps so they took hers.  15 minutes later, the adult floor was short a pump again, but Nettie was getting her feeds like she was suppose too.  Another time, I was there when they were putting in another central line.  I found her, unsupervised, in a stretcher in a long dark hallway awaiting surgery.  No one was around.  What if she had fallen, what if she had gotten sick, I was beyond livid, but as soon as they found out that I was of no relation, I was escorted out.  I called myself "mom" from that day forth.  

We unloaded all of her belongs of 22 years.  All the things she held dear along with all of the new and wonderful stuff we bought together Saturday at Target.  Her bed was made, the desk was painted and looked awesome, her stuff was put away and I spent 4 ridiculously long hours building her new dresser (OMG that was NOT fun!).  But, she was in her new place and smiling from ear to ear.  I couldn't help but smile too, even though I just wanted to turn and cry.

Nettie became our daughter by a laundry list of coincidences.   The biggest of which was the mistake made by the grouphome that signed a form allowing her to attend the school I was teaching at.  I was warned, she wouldn't survive another 3 months.  Fall and winter were her worst times and that she was far to fragile to survive yet another pneumonia.  So I placed her in a small chair in the corner of the room and we waited for her to die.  By Christmas break, when she hadn't missed a single day of school yet. . . I realized, I needed to actually try and teach this child.  So teach we did.  She started talking, sitting up without assistance, and clearly we favored each other.  I helped her get her first wheelchair where she learned she could push the wheels and learned what independence meant.  Who knew how far that concept would go!!

So, here we are.  We now have 5 children living at home and one living out in the world (7 minutes away).  What a concept for us to acclimate to. But, Annette has continued to elevate our expectations of her beyond what we ever thought she could do.  From learning to finally eat at 9 years old, toilet training at 11, changing her name on her own to "Nettie" at 12, to walking, to doing Zumba, to going to proms and to finally moving out.  She has continued to inspire Peter and I to never underestimate the abilities of any of our children. . . I miss her already.  But, she did it. . . we did it too.