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

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 naïve 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!

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!

Gili Goes to School

We sent Gili back to school late Sunday morning.  I was sick in bed and my husband asked me if GIli should still see a doctor even though she seemed much better.  I said, "if she's better, take her to school!"  She still coughs and has some green stuff coming from her nose, but she seems to be doing well.

She loves school and I love knowing that she's getting proper stimulation.  I love having the house quiet and making my own schedule without my husband reminding me to do the dishes or do the laundry before Gili wakes up.  I love bringing Big Sis and Big Bro home at 1:30 PM and not constantly shushing them because Gili is sleeping.  And they love getting my attention until I leave to pick Gili up around 3:00 PM.  Life is good.

I've gotten a lot of exercise this week taking her to school.  Usually I put her in the Baby Bjorn and walk to the bus stop and from the stop to her school, and then when I'm alone, I walk the whole way.  Yesterday I forgot my bus card and walked home 30 minutes with her in the Baby Bjorn.  My back is a little sore, but after having her away all day, I like to travel with her close.  When she faces me, we can talk, and when she faces forward, she leans her sweet head on my chest.  Either way I get to smell her and give her kisses the whole time.

Gili has had two or three sessions with the physical therapist, Yael.  The therapist also sets her chair and directs the other teachers and assistants in her exercises.   I was surprised to see her chair back completely vertical, but she seems to be doing well.  Sometimes it's nice to see her in an environment where she's not behind.  She is one of the more severe CMV cases in Israel, but one of the more advanced students in her little class.

Today a young woman came in to work with the kids in shiatsu / reflexology.  Sunday the class has water therapy / hydrotherapy.  Gili is only allowed in with a letter from Professor Amir saying she is not contagious, or at least that it is safe for her to go in with other children.  When I asked Professor Amir about such a letter months ago, he said that all children of preschool age should be considered contagious.  But no one likes that response.  It's annoying that Gili is singled out because she was born with CMV, even though she is less likely to have an active infection than other snotty-nose children.

First Day of School

Yesterday we met Gili's teachers and left her at "school" for a few hours.  Today we had to take her home early because she was sick.  I had concerns about her health this morning, but I didn't want her to miss her first full day of care.  Hopefully she'll be back on Thursday.  I was a little nervous and giddy leaving her there.  She's my little buddy; I'm not used to doing anything without her.  But Dad was even more emotional!  I don't know if he was sad or scared.  I feel like my little baby is growing up.  She actually has classmates!  I'm just so happy with everything, I don't know where to start!

I'm so grateful she's finally getting all the care and therapy she needs.  And it's only a 20 minute walk from our place!  Transportation is part of the package, so hopefully next week she'll have a driver and an escort who will pick her up and bring her home.  I feel like I don't have to spend as much energy worrying about her progress and general well-being now that I have professionals to do that for me.  I know it seems like a bad attitude in this age of Nanny-cams and background checks, but her teachers seem so loving and "with it."  My biggest worry is teachers/caregivers kissing all the kids, and the parents kissing the kids... that's a lot of germs linked cheek to cheek.  But if you have to worry about something, too much affection is a good option.  Each child has their own thermometer so the teachers can check if they have any concerns, which they did today.  There is one main teacher and at least two assistants for the class.  Officially Gili has seven classmates, but I've only met 3, so I'm guessing it's not usually a full class.  They have food, bibs, matresses, blankets... all the stuff I had to buy for my other kids' preschool.
There are different therapists who work with the children on different days: Physical therapy, speech therapy (including eating and communicating), ocupational therapy (including using hands), and a visual instructor.  This facility is specifically for blind and visually impaired children.  I had to stress GIli's vision issues at our hearing in order to get in, and I will try not to take it for granted.  I expect that if they fill up with more severely blind kids, Gili might be sent elsewhere. 

For more information about Gili's new school, "Eliya," visit the website for American Friends of Eliya.  You can also see pictures of parents and children in the hydrotherapy facility.

A couple of the staff members questioned why I hadn't learned Hebrew, but we haven't had any communication issues.  And Gili's teacher's parents are American!  Gili has a note book that we send back and forth to write notes or quesitons for the teacher and v.v.  It's great to be able to write in English and the other staff has been very helpful with the forms.  G-d willing Gili will get water therapy on Sunday!  I'm so excited for her!  She will have a special chair set to her size and needs and she will also have a "standing chair" to help her body get used to standing.

I have so much more to say, but I think I should get some sleep and put down more thoughts once Gili's had a little more time in "school."

Eating, Crawling, and Grandpa

The day before my last post I was trying to think of what I could get Gili for Chanukah that she could really appreciate, and also thinking about the Social Security money we would hopefully start getting.  I decided that the thing we would all enjoy the most would be flying my father in for Chanukah.  So I discussed it with my husband, who fully agreed that he would also enjoy having my father and that it would be an excellent use of the money we hoped to have, and even if it didn't come through, it meant enough to us that we could still probably split the ticket to get him here.  So Big Sis drew and picture and I wrote a note, and finally my father agreed to come, though he didn't agree to letting us pay.  And now he's here!  Today just him and I went to Tel Aviv, walked along the beach all the way to Yaffo (Jaffa), then back up through Tel Aviv to a yummy pizzeria.  But Gili is enjoying the cuddles and I think my father is enjoying her.  I've always thought they got along particularly well.  They're both quit and not needy or clingy and they both have very blue eyes.

We're on the verge of seeing Gili crawl.   My dad is here for two more days and we're hoping he gets to see her first "crawls."  My father and I have taken a little more initiative with her eating, as well.  She still doesn't quite seem to know what to do with the food once it's in her mouth.  But this evening I was able to spoon feed her slightly thickened formula without her objecting.  But I'm not sure if more went down or came out.  And do you see those new teeth?  Just when I was starting to worry about why she had three all on the bottom, four starting coming down on top!

On Sunday we had an appointment with Dr. Inbal.  He seems somewhat satisfied with her bits of progress.  Her head circumference is keeping up with the curve just below normal.  If she has more seizures she may have to go to a sleep lab to get a longer sampling of her brain activity.  He said that  the EEG showing nothing only means nothing happened while they were testing.

We did get the paper work from Betuach Leumi (Social Security) and we have an appointment to stand before the omitted that puts Gili in the rehabilitation day care.  There is no reason she wouldn't be accepted, but we still have to wait our turn and travel to Yaffo (Jaffa) and show up.  I hope to have good news about that soon!