Thursday, January 27, 2011

Gili's Got Skills

My husband and I and Gili's teachers are all very happy with her progress in every area except eating.  We do miss her.  My husband dropped her off and came back home and told me it's not fair that they get to spend all day with her and he has to go to work.  But for her sake, I know she's getting what she needs.  They never use an excuse to strap her in a chair or a stander.  Unless she's sleeping, her teacher, helpers, or therapists are always interacting with her. 

My husband bought a guitar a couple weeks ago and he started playing for Gili in the evenings, after the kids are in bed.  He sits on the bed in our unlit room playing in the glow of his laptop screen.  She lays next to him on our feather duvet and looks like she's in heaven.

On Tuesday night we were talking to my grandparents.  Yes, my 79 and 80- year old grandparents have a webcam!  We were at the table with Gili on my lap, my husband still working in his "office"/front wall of our bedroom, and the kids were finishing up their dinner veggies.  We were talking about Gili eating.  I hold them she "tasted" four spoonfuls of baby food fruit in school, but doesn't really eat anything, and then I handed her a green bean.  And guess what!?  No, she didn't gobble it all up and say "thank you for making this for me, Mommy," like Big Bro.  She passed it between her hands!!  I started screaming.  I know, she's 14 months, so I can't share this excitement with most of my aquaintances.  But it was like a dream where your one-year-old talks.  I was just screaming.  "Look!  Look!  She's doing it! Oh my G-d!"

Her teacher says Gili can stand with just a little support on her hips.  She can sit/balance upright briefly. And, I noticed that I can hold her on one his and she can hold her self up!  Physically, I see great things and I am started to believe Professor Amir that she could walk at two.  But I wish I knew how much she understands.  Will she ever have normal friends?  Can she marry someone I can be proud to call my son-in-law?  It's all a mystery.  For now, we just love her so much.

Thursday, January 13, 2011

A page in the life of Gili's Mom

I have so many things - ideas, to-do's - swirling around in my mind today, I can't seem to stay on task.  I thought I would take a break and write some things down. 

My work for the free-loan fund is slowing down, because I am slowing it down.  I'm using as an excuse the fact that we haven't yet received the primary donation from from the women who initiated the fund with her end-of-life savings.  Her daughter finally got her death certificate, but there is a lot to be done.  When we get the money I will need to get my act together.  I was thrown into this responsibility without knowing it, but I want it to succeed. 

This week I am leading an English speaking women's class in the book of Nechemiah, chapter 7.  I just started studying today.  The wonder of being a stay at home mom... I can do these things in one day.  It's great material.  The power of prayer, the importance of ancestry, the value of place.

On top of my real responsibilities... (There is laundry spinning around my washer and dryer and a pile ready to be folded on the couch.)  My mind has been flooded with ideas for my public blog "Cooking Outside the Box" at nonrecipe.com.  I formated and printed a calendar through February, and wrote a schedule of all my blog ideas and when I want to post them.  I post 4-6 days a week.  And I have/had SO many ideas.  But last night the paper got lost and I had a bit of a freak out.  And then another pouty episode today when even the calendar file on my computer could not be opened!  Yes, I could eventually reconstruct it, but don't I have better things to do?  At the same time, an important form for my son's hearing test was lost.  I suspect the kids began coloring on it and then my husband thought it was trash.  I wasted time and stress trying to replace the form half an hour before his appointment. 

More blog news: My cooking blog was awarded the "Stylish Blogger Award."  Yes, it's more like chain mail than a prestegious award, but it's still cool that someone thinks my blog is worth recognition.  And maybe I'll get a few hits.  I also started posting on reddit.com, which has gotten me a few hundred more visits.  I would love to post this blog, but then my husband would see it.  If anyone want's to post for me, I would very much appreciate it.  Pick your favorite post, then send me the link on reddit so I can vote it up.  Or post of facebook, or share it with your friends who might be interested.  There are lots of sharing options in the upper left of this page.
To publicize my cooking blog I was thinking of making some stylish aprons with the name of the site printed in some unique way on them.  I'm having fun with the ideas and spending way too much time thinking about it, and maybe too much total time and money on a hobby that may never make me a penny.  But I like to sew, and it would be so cool if it bought my blog some more followers and then someone in the world was wearing something I made.    I've also started getting more into photographing my food (see pictures below). 

And, "How's Gili?" you may ask.  She went "swimming" this week!  I hope one of the next two weeks I can go take pictures.  She's doing so great in school!  I don't know why I'm not getting more done around here, though.  Why am I sketching aprons when I have so much mending to take care of??

And with this post, my anonymity ends.  You still can't search for my name or my daughter's name and get here; but, if you're reading this, you can figure out who I am.  Just don't tell my family.  I'd like to feel free to share my honest hopes and fears without freaking out my friends and relatives. 

Thanks for reading!
My photography set-up


Wednesday, January 5, 2011

Sabra

I was discussing with a friend of mine the possibility of writing a guest post for her well read blog A Mother in Israel.  I started writing something when I was up very late at night.  I don't know if it's worth posting, or if her blog is the right place, but I thought I would leave it here in the mean time:

You’ve heard the term Sabra?  It’s Hebrew for the cactus fruit known as a prickly pear and the term is used to describe native Israelis: prickly on the outside, sweet on the inside.   It doesn’t take much to uncover the sweet, friendly, inquisitive fruit of the Jewish people.  This makes social encounters much more interesting, especially as the mother of a special needs child.  Once you’ve made a connection with someone, (“You’re from America?  I have an aunt in New York.”  Or, “Have you been waiting long? Me too.”) it’s fair game to ask questions like, “How old are you?” “Where do you live?” “How much do you pay for your apartment?” and “What’s wrong with her?” 

The truth is, I prefer this candor to the alternative I might face in America, chatting to a mother while wondering if she’s noticed my baby is different.  I also prefer this to other people who don’t realize what a child my daughter’s age is usually doing and try making na├»ve small talk.  It happened more when my daughter was a little baby.  Strangers would say, “she’s so big,” or, “she’s so aware/interested,” when she was particularly not those things.  I realize these can be generic compliments, but it’s such a stretch from the truth, it’s hard to be gracious. 

In Israel there is a beautiful and annoying concept of children being raised by the community.  It is nice when you’re busy nursing a baby at the park, your older child falls down, and another mother runs to help.  It is annoying when your son is crying, not because he fell off the swing, but because a stranger is talking to him.  It is irritating when strangers are telling you to add oil or honey to your baby’s bottle to fatten her up, when it’s enough of a challenge to get her to suck and swallow.  It is aggravating when strangers keep stopping you to let you know your baby’s hat has fallen over her eyes, when you want to reply, “She likes it that way, she doesn’t see much anyway.”  (Try taking the hat off when it seems nice warm, and every bubbe you pass will lecture you about bundling up the baby.)  And it is infuriating when medical professionals and caregivers think it is okay to ask, “Why don’t you know Hebrew yet?” And you want to cry and say, “I spend half my week sitting around hospitals and doctors’ offices, when would I have had time to learn Hebrew?!?  And you of all people should understand what I’ve been through!”

Is it Contagious?

The last few times I found myself tossing and turning in bed thinking about Gili’s illness, it had nothing to do with big long-term questions: Will she walk? Will she have friends? Will she have a satisfying life?  I’ve been worrying about the questions on other people’s minds. 

At the end of the summer I visited a potential school for my daughter.  We got a ride home and the conversation eventually turned to CMV (not a common topic when I first meet people, but it happened.)  The mother asked if my kids had it.  I very nonchalantly shrugged and said, “I don’t know, probably.”  Gili got it from me; I probably got it from my kids.  If one has it, I can’t imagine they don’t both have it.  It was only that evening when it hit me that the mother may have been very concerned about having her daughter in class with my daughter.  My daughter was riding home sitting in between her little girls and it was only in retrospect that I realized her concern. 

Now we are waiting to find out if Gili will be allowed to do water therapy.  She needed a letter from Professor Amir saying she wasn’t contagious.  He wrote what I worried he might, true but no help to us: all young children may carry CMV.  It is understandable, but frustrating that she is being treated this way.  She is less likely to be contagious than your average preschooler, and yet because she was born with it, they insist on taking extra precautions.  

CMV is like AIDS when you compare it to how misunderstood it is about contagion, and yet it is more like chicken pox in its risk.  Much like chicken pox, you’re better off getting it when you’re young.  Especially if you are a woman, better to get it long before you might get pregnant.  So why are we so worried about one child who may possibly be contagious?  It’s usually only dangerous if you’re pregnant or close to getting pregnant, in which case you should be careful off all kids.  Just use proper hygiene!  Wash you hands, don’t kiss their snotty nose, and don’t drink their pee!  And yet the teachers have no problem kissing Gili on the face and then, I assume, also kissing other kids on the face.  But they’re worried about a chlorinated pool??








On a brighter note:  Gili sat (balanced) unassisted yesterday!  She sat long enough for me to get my camera and snap a few pictures.  We were so giddy with excitement.  I was having a Mommy group over who didn’t know me so well.  One mom said she was surprised that we were still excited with the third kid.  Were we ever!

Saturday, January 1, 2011

A Special Soul

I don't know if I've mentioned this previously, but before I knew Gili had CMV, I still had this feeling that she was different.  Like her place in this world was less secure.  She was smaller, more delicate, and less aware than my older children.  I was thinking about it again today.  People say that children are a gift, but really, they are a loan.  There is an idea that people with special challenges like handicaps. poverty (or wealth), or other unique circumstances were put in that situation on earth for a reason, like to make up for something their soul did in a previous life.  Once in a while I wonder if Gili's soul was given  CMV as a challenge, but right now she seems so happy, I wonder if she will ever really feel the burden of her disabilities.

The main thing I was thinking today was how honored I am that G-d loaned me this special soul.  I was thinking this while I was writing Gili's name on her car seat and on her towel for water therapy tomorrow.  I want to write my name all over her to say she belongs to me, bring her back to my arms as soon as possible!  But I'm just so happy to have her on loan.  I was thinking this again when I was covering her in good night kisses and backing out of the room while observing my three peaceful children.  All life is precious, and you never know what could happen tomorrow, but I feel like the terms of Gili's loan are still more uncertain.  I'm just so grateful for any time we have together.  I hope we are walking hand in hand when I am 100!