Saturday, December 24, 2011

TSA helpline for travelers with disabilities

Below is a letter I was forwarded that I thought was worth posting.  Here's to more accessibility and understanding in all manners of local and international travel!

Forwarded from MD Family Networks:

The Transportation Security Administration has launched TSA Cares, a new helpline number designed to assist travelers with disabilities and medical conditions.

Travelers may call TSA Cares toll free at 1-855-787-2227 prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint. TSA Cares will serve as an additional, dedicated resource specifically for passengers with disabilities, medical conditions or other circumstances or their loved ones who want to prepare for the screening process prior to flying.

The hours of operation for the TSA Cares helpline are Monday through Friday 9 a.m. – 9 p.m. EST, excluding federal holidays. Travelers who are deaf or hard of hearing can use a relay service to contact TSA Cares or can e-mail

If you would like to make advance arrangements for screenings at airports, travelers can contact TSA using Talk To TSA, a web-based tool that allows passengers to reach out to an airport Customer Service Manager directly, and the TSA Contact Center, 1-866-289-9673 and, where travelers can ask questions, provide suggestions and file complaints

In this busy travel season, you are invited to please share this widely.

Happy holidays,
Peggy (Margaret V.) Hathaway
Public Policy Manager
National Association of Councils on Developmental Disabilities
202-420-8040 (mobile)

Thursday, December 8, 2011

Gili is a big sister!

"Little Bro" is now six weeks old. He's having a tough time gaining weight, which I didn't realize right away because I couldn't imagine having two "special" kids.  G-d willing he's just struggling with the viruses the kids are bringing home and he'll catch up soon.  In the mean time I'm weighing him at least twice a week, giving him bottles of pumped milk, and some formula.

Yesterday Gili visited the eating clinic in Schneider Children's Hospital.  My husband took her because I needed to stay home to nurse and pump.  He felt it was a waste of time.  They let her make a huge mess with the food and decided that she does not have a swallowing problem, but she has a very high palette.  They think that having her be more hungy will help her eat.  They prescribed a vitamin to add to her bottles and recommended making ehr bottles more concentrated - one scoop in 50 mL of water instead of 60 mL.  We will go back in three weeks with Gili's occupational therapist, Ruti.

Today we celebrated Gili's second birthday in school (only a month late)!  She had a rough night and was pretty tired and dazed during the party.  She's been frequently waking up in the middle of the night and crying hysterically for up to an hour.  She enjoyed her party at home with the neighbors more.  She was more in the moment and really enjoyed all the attention and happiness.

Gili's teacher, Adina, and I have both noticed that her cross eyes seem to be getting worse.  We might try to start seeing a doctor in the local clinic because we're not that impressed with the optical care Gili gets in Schneider.

Gili's school, Eliya, only accepts kids up to age three if their main issue is not vision.  In January we will begin the process of getting her into the special needs elementary school system.  First she will see the child development specialist in Schneider, who will write a developmental report.  Then we will have a meeting with committee members to decide which special needs system she will be in.  If (when) they determine that she has a global delay, we will have another meeting in Jaffa-Tal Aviv.  They will designate her a level of "retardedness" and determine which school she will go to next year.  It seems the most likely scenario is that she will go to "Akim," a special needs elementary school in another neighborhood of Petach Tikva.

So, what has Gili been up to? She is putting food in her mouth by herself, but she usually drops or spits out most of it.  Basically, she just drinks baby formula.  She can pull up to her knees, and I hope that will soon turn into pulling up to standing.  Adina says she's started responding to her name, but I haven't witnessed it.  It's slow going, but we love her!

Sunday, August 14, 2011


Quick update:
Gili had an exam today, I think they call "refraction."  They just held different lenses up to her eyes and flashed a light around.  The lady who did the exam (not a doctor) said Gili does not need glasses and her "squint" (strabismus, cross eyes) is small enough that she does not need surgery at this time.

Tuesday, August 9, 2011

Meeting with Developmental Specialist and 21 Month Update

In her car before her first hair cut
Today we had an appointment with our Child Development Specialist/Neurologist, Dr. Inbar.  He is retiring soon and Dr. Tammy Shteinburg will be taking over the department and Gili’s file.  Gili was not feeling well today, she had a rash and an ear infection, but I don’t think it changed anything.  He noticed major improvement in her awareness and reaction, but said she is still obviously physically retarded.  He checked her reflexes, which I think passed.  He lifted her up straight, probably to see if she would put her feet down to support herself, and then put her down to all fours to see it she would reach out to catch herself.  It appeared that she failed those tests. 
Dr. Inbar is retired from Schneider Children’s Hospital to be a full time research professor at Albert Einstein College of Medicine, in the Bronx.  He said we should invite him to Gili’s Bat Mitzvah.  He expects that by then she will walk and talk and be more independent, but she will always be mentally handicapped.  None of this surprised me, though my husband doesn’t like to hear it.  I was happy he said she would talk.  He bases this on the fact that she is vocalizing now – “ababa,” “ticka-ticka”…  He said she has the signs of Cerebral Palsy.  They don’t diagnose before two years old and he seemed to say there is a chance she could improve.  I’m doubtful.  I think she’s had the signs for well over a year and that’s unlikely to change in the next three to six months.  He predicts a 50/50 chance that she will walk before her third birthday.  That is a little more in line with what I expected.  I figure it’s was time to throw the “she’ll probably walk when she’s two” predictions out the window.  If she is not walking at three she gets an additional stipend from the government to help with transportation and more.  I said, “I don’t want it,” meaning, I’d rather her be walking.  I think 50/50 seems pretty accurate.  I have trouble seeing her walking well at three.
I think she looks like a big girl here
Gili has made incredible progress in the last six months.  She can now do from laying down to sitting independently!  It has made such a big difference in the way she gets around and plays, and I never tire of watching my big girl sit and play.  Now she rolls over, sits up, looks around, figures out where she wants to go.  She can really get around the house.  But she doesn’t follow me like my other kids did.  As soon as Big Sis could crawl, she could find me anywhere in the house within seconds.  Gili doesn’t seem to care much.  She still likes being under things, but she also likes exploring new places.  I put her toy bins in a place where she knows to find them and she manages to get out what she wants and make a great mess.  She also has made improvements in looking for things that have dropped or been taken away.  Today I saw her reaching up and behind her for her butterfly toy hanging from her stroller.  I was really impressed that even though she couldn’t see it, she knew it was there. 
She is still happy playing by herself for a long time, and she still enjoys the dark and quiet of her crib, even if she’s not napping.  She usually wakes up happy and doesn’t call for us.   

We haven’t been working too hard on feeding her, but since her school ended Monday, we need to work more on all the enrichment she usually gets at school – eating, standing, teeth brushing… Oy!  I’m glad it’s only three weeks.  I like when my job is primarily love and hugs and kisses.  Plus I’m a big, fat, overheated, tired, waddling 31 weeks pregnant.  As you can see from the last video, she is no longer opposed to putting food in her mouth.  But she still gets almost all her calories from bottles of baby formula.  We didn’t discuss her eating or my suspicion of seizures with Dr. Inbar.  I wish I remembered to ask about the eating because he probably could have set us up with a nutritionist in the hospital.  Dr. Inbar recommended we see an ENT, because Gili always has fluid in her ears, and an orthopedic specialist in the next few months.
She found her toys!
I hope that Gili has the same teacher next year.  I also like her helper, Shelly.  She speaks English and I can tell she is crazy about Gili.  (As am I!)  According to Lihi, Gili has started to make a sound meaning she wants to do something again.  I haven’t heard any purposeful vocalization.  The closest I get is her opening her eyes wider when I show her a bottle.  I haven’t gotten any nodding, reaching, or vocalizing.  

Below is a silly video of Gili batting at a big ball.

Friday, May 27, 2011

Video of Gili in School

Haven't had much time to write, but here is video I made for my family:

Rotem plays about two toys with her each session to encourage her to play and explore objects in ways besides putting them in her mouth.  She also feeds Gili about once a week.

Lihi is working with Gili in the dark room.  Mostly because it is quiet.  She is trying to encourage her to voice or sign that she want more or to do something again, so basically they have fun and then pause and wait for her to do something.

The last two weeks I also sat in on Gili's reflexology session with Elena.  She really loves that, and Elena was showing me things also.  It is very interesting.  She showed me the zones of the foot and told me about doing things on separate parts of her body at the same time to work both hemispheres of her brain.  For instance, she might rub her right foot with her left hand.  Elena also plays classical music during the session, which Gili seems to really enjoy that.

I bought Gili a Baby Mozart CD, which she loves, but I'm ordering a better mix of real classical music.

Another occupational therapist, Rut or Ruthi, is filling in for Rotem while she is on maternity leave.  I also wanted to write the names of other staff before I forget:

Vered is the principal/therapy coordinator; she will decide what class Gili will be in next year.  Sharona runs the office.  Kedem is the social worker; she can help us get what we need.

Shelly is one of the classroom helpers who was working mostly with Gili.  She is so in love with Gili and takes special care of her, including all the non-lazy precautions to prevent her diaper rash.  She is tall and outgoing, speaks English, and is also a student, but not working in that capacity at the school.

Hadas is Gili's helper now.  She seems much younger and soft spoken.  I saw her feed Gili and it seemed to go just fine.  I just don't see her cuddling and kissing her and telling her, "who loves you the most?" like Shelly.  But I don't think I would do that if the kids mother was in the room, either.  Shelly still plays with Gili when her main responsibilities are sleeping or with therapists. 

Gili clapped spontaniously a few times in the last week.  I started working on that with her since I noticed she could keep her fists open.

Tuesday, May 3, 2011

Parent - Teacher Meeting

We kept Gili home yesterday to rest.  The previous day she had a terrible spell of throwing up and we almost went to the hospital due to dehydration.  She was thrilled to be back at school today.  She was excited in the cab and was just glowing to see her teacher and helper.  Adina was kissing her and Gili was laughing and so happy. 
This morning we met with Gili’s teacher, three therapists, and the therapy coordinator.  The overall consensus was that they like working with Gili very much and they all seem optimistic about her being able to reach the goals they have set.  Her teacher, Adina, said she would translate the report for me, but for now I will try to remember as much as I can. 
One exciting thing for me, was hearing that Gili clearly likes being with people she knows.  She shows preferences for people and activities, and smiles, laughs, and cries appropriately.  Before today I thought that she was pretty happy to go to anyone who held her securely, and that she would smile or laugh at almost anything.  I don’t want it seem like I want to be upset, but it is very comforting to know she cares about what is going on and who she is with.
Adina works with her vision, eating, and is generally in charge of her daily care.  We agreed that Gili is making progress with her looking and eye contact.  The teachers also noticed her “nystagmus” (jiggling eyes), and now I know what it’s called!  The coordinator said they would give me a letter for before she sees the eye doctor next time so they will have to pay attention and answer questions.  Adina said that Gili does much better in the dark room when they have a light focused on only one thing.  They said that her eyes seem to be okay but that there is a problem with the connections in the brain.  Maybe in a regular lit room there is too much stimulus, but in the dark room she can focus.  I have noticed in the past that she enjoys being in the dark, whether it’s alone in her crib talking to herself, listening to Dad play guitar, or on the floor in the dim living room while I go on my computer.  It made me think that maybe we should try feeding her in the dark with just a dim light on the food. 
Gili working with Lehey
Lehey (I don’t know how to spell it, pronounced Lee-hee) is her communications/speech therapist.  They seem very happy with her progress using a voice output communication aid (VOCA).  Lehey will record herself saying something and then Gili pushes the button at the appropriate time.  They assured me that she’s not just pushing it randomly; she’s doing it appropriately in response to the game Lehey plays with her.  They also practice taking turns vocalizing, like a conversation.  She is working on a hand motion for “I want” and nodding for “yes” and “no”.  Lehey talked about the importance of exaggerating and describing Gili’s wants through the day, like “yes, you want the bottle,” and helping her nod her head.  I went into the meeting thinking Gili had no communication skills at all, but I was impressed by Lehey’s optimism.  She seems genuinely excited about working with my daughter. 
Rotem is her occupational therapist.  They work on playing appropriately with toys and exploring objects in an appropriate way (with her hands and eyes, not mouth.)  Before today, I was so happy that she was finally able to hold things with both hand and bring them to her mouth, I didn’t really think about her playing with things.  They play ball or work with several similar objects like blocks.  I think I should try challenging and engaging her more at home, rather than just give her something to chew, let her roll around, and message and stretch her limbs. 
We also discussed her eating.  In the last few weeks she has made progress with simply not rejecting food.  Before that she didn’t even like seeing her food tray and would pull away when she saw the spoon coming.  Now she will actually eat and keep down a few spoonfuls of solid or semi-solid food.  She will also bring small bits of fruit or vegetables to her mouth herself. 
Yael is her physical therapist.  They meet at least twice a week.  She is making progress in sitting unassisted for well over a minute and sitting well with minimal assistance.  The next goal for her is to get herself from a lying to sitting position and to sit well enough to play with something with one hand.  Wouldn’t I love to see that!  I think they mentioned possible balance issues, but mainly weak muscle tone in her trunk. 
We are also borrowing a baby walker for our home.  When she grows out of it we can talk about applying for a more serious walker/gait trainer.  Last night, I was watching videos on YouTube of kids using different kinds of walkers.  I was getting pretty excited that it looked like something Gili could use, but Yael thinks she has the capacity to walk unassisted!
My overall impression was more optimistic about her progress.  I am constantly impressed by the love, care, and attention she gets at the school.  My husband is finally starting to get that she is not going to recover and turn into a normal kid.  He told me that he just realized that Gili really is special and will probably always be in a special class.  He thought her vision was fine, so the teachers saying that they felt that there was a problem with the connections in her brain made an impression on him.  He said that he didn’t realize the extent of her neurological problems.  He also paid particular attention to her eating issues.  They said that it will only get harder to switch her from the bottle as she gets older.  They talked about giving her fewer bottles so she would be hungrier for solids
I was invited to music therapy and to see her work in the dark room next week, and to sit in on an occupational therapy session on may 16.  I am anxious to discuss her new developments with the Neurologist in about a month and a half.   I’m been concerned about some behavior that might be related to a seizure or her yet to be diagnosed cerebral palsy. 

Saturday, April 9, 2011


I forgot to write in my other post:  Gili started saying "bababa" last week.  Until then she has been talking without any consonants, as if she had been raised by whales.  We still enjoy her happy screeches and other amusing noises, but this step toward normal baby communication development is quite exciting.

I also wanted to mention that Gili will be a big sister when she is about two weeks shy of her second birthday.  In the beginning I didn't care at all about gender and just wanted a healthy baby, but after seeing that healthy looking ultrasound, I started thinking that I'd like a boy.  Big Sis and Big Bro have made their preference clear that it should be a boy.  I would like to have two boys and two girls, but I would also like there to be less comparison between Gili and her little sibling.  My older kids are 19 months apart and people would ask if they were twins.  (If you knew anything about baby development or opened your eyes, they obviously weren't.)  Now I suspect I will get comments about how close in age Gili and the baby are.  People won't believe they are two years apart.  If I have a boy it will seem less strange if Gili's little brother is bigger than her in a few years.  But if we have a girl, I think Gili will look very frail in comparison.  Well, it's not up to me and I obviously have too much time to think.  G-d willing, a healthy baby!

Spring is Here

I think I owe you an update.  I went to Gili's school in February to see her physical and water therapy, but I didn't have the energy to post about it.  Below are the pictures from her physical therapy.  You can see her leaning on one arm, sitting, and playing stand-up sit-down.  (I will post video from the water therapy VERY soon.)


And why haven't I posted in so long? Why didn't I have the energy to post everything I was planning to write about her therapy when it was fresh in my mind? There's a baby in Mommy's tummy! From every logical perspective I thought it would be nice to give Gili a sibling to play with, and maybe take care of her. Big Bro and Big Sis are very close to each other and have limited attention for Gili, but she needs a buddy, too. I just never thought I would be so sick!  I hit rock bottom when I went to the hospital last Saturday night, and even Sunday and Monday I was no better.  Finally Tuesday my usual anti-nausea started working again (prescription Zofran) and today I was out of bed!  I actually took a walk!  My mom is coming on Tuesday and I hope to keep up with this level of energy so we can get out of the house and have some fun. 

I'd like to say, "enough about me, let me tell you about all the new things Gili is doing!"  Unfortunately, there's just not much happening.  I guess I could say no news is good news.  She's been sick a lot, but nothing serious.  She hasn't been back in the hospital.  Things are going smoothly.  Once in a while her teacher will write in her journal that she ate a spoonful of something.  I think they try to feed her a little every day.  That may be the area where she is most delayed, at least compared to her delayed peers in her class.

Lil Bro (or Sis)
So back to me.  I wasn't so sick when I was pregnant with Gili.  I took a few Zofran, was tired, and had other yicky physical pregnant stuff, but I got out of bed every day.  Besides having a bad sinus thing and H1N1 swine flu, life went on.  I graduated college and passed three of my four CPA exams all while pregnant with her.  Big Sis was another story.  I was in and out of the hospital most of my pregnancy with "hyperemesis gravidarum."  I had a little break in the middle, but I was pretty much in bed for at least seven months of my pregnancy.  I was a little better with Big Bro.  And when I was okay with Gili, I thought those awful pregnancies were behind me.  I was more worried about having another CMV baby than I was about being in bed for eight months.  Man plans, G-d laughs.

Before I got pregnant I was planning to write a post about all the considerations of having another baby.  Everything from Gili being so delayed, to the chance that the virus could still be active, or G-d forbid, reactivate.  In Israel they do two blood tests for CMV in the beginning of pregnancy.  One shows if you've been exposed (positive for me, of course) and the other (from what I understand) shows if it is active.  Thank G-d, that was negative.  So I just have to trust.  I will say, however, that my friend, Ruth, had similar results and has a son around Gili's age with congenital CMV.  We met through the CMV registry and when I am writing more, I would like to share some of the things we have talked about. 

Ruth and I met in person several months ago when she was getting a second (or third or fourth) opinion on cochlear implants for her son, and I hope she will write a guest post about everything she learned.  Her son was only slightly hypo-tonic, but basically not delayed, just legally deaf.  Gili has another BERA in a month, but unlike most CMV kids, her hearing is not much of a worry.  So, together Ruth and I have the full CMV experience!

Were you wondering what happened the the ugly logo sketch I shared in my last post?  It has been "professionalized!"  As soon as I am able to think about food without... well you know... I can't wait to get back to blogging and give away some of the awesome aprons I made.  

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  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, 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


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!

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!