On giving and being given to

charityFrom the time I was twelve, I’ve had a favorite mitzva – giving maaser (tithes).  When I was young this meant putting ten percent of all my babysitting money in my own charity box I kept on the ledge of my bedroom window.  When I got older, I set up a separate checking account linked to my main checking account; as soon as money came in, the first thing I would do was transfer 10% to my charity account.  This account had its own checkbook and I delighted in being able to regularly respond to requests for help from others.

Now I’m in the position of being helped, and it’s a very different experience than giving.

A dear friend called me at the hospital and asked me if we would go away for Pesach if she would make arrangements.  I immediately refused; I told her it was a luxury and we would manage to prepare for Pesach once I got home from the hospital.  (If you’ve been reading here long enough you know that in almost 22 years of marriage I’ve never hired any kind of cleaning help so you can understand that going away is far beyond my frugal way of doing things.)

Then I thought about how much stress we’ve all gone through, how traumatized the six kids are who were at home when the accident happened and what a huge relief it would be to all of us to not to have to keep pushing on.  When I was honest with myself and allowed myself to picture not having to prepare for Pesach, I felt almost weak with relief.

When I saw that a fundraiser was initiated by this same incredible friend to help our family with the many expenses we’re facing, including the subsidized costs of Pesach at a hotel, it was very hard for me.  I didn’t know about it in advance and finding out about it was very, very hard.  This is so contrary to my nature in every way.  I didn’t want to be seen as needy and pathetic.  I didn’t want people to feel sorry for me.  My ego was struggling in a huge way.  And then I saw the incredible response to it within 24 hours of when it began, and I was shocked.

It made me think of this email from a friend right after the accident.

“But the only way I am making sense of the idea that something bad could have happened to you is that this is going to generate such an unbelievable amount of compassion and chessed in the world that it will be just awe-inspiring. I think that people will rally so much around you and take on so many extra mitzvos and daven with so much extra koach and say so much extra tehillim that this must be what the world is in need of right now.
 
As your friend, I can’t say I love the idea that you are the vehicle for all of this to take place, but I can completely see you as the catalyst for something huge.” 

I thought she was sweet to want to make me feel good.
I had no idea.  No idea.  She was right – people are just so good. 

I am overwhelmed, totally overwhelmed.  The tehillim, the davening, the people who were willing to make challah before Pesach instead of buying or taking from the freezer as a merit for my healing.  The money people are giving at a time of year when finances are especially tight due to Pesach expenses; the notes and good wishes that accompanied those donations showed how much people cared.  It’s hard for me to digest.  I could never have imagined having been the recipient of so much generosity and good will.  I am just overwhelmed with gratitude, and don’t have words to say how much it all means to me.

In Jewish tradition, we learn that God created people who need help in order to give others the merit of helping them.  It’s very uncomfortable to be on the receiving side.  Very. But when I see the outpouring of goodness that is being brought into the world right  now, it’s also obvious that all of this would be blocked from entering the world if there weren’t someone in need – unfortunately, me in this case – to be the conduit for it.  Our world is so fractured and these acts of kindness are bringing wholeness and healing to our entire planet.    

Thank you all so much for your caring and compassion.  I look forward to very soon being back on the giving side, and wish for you all that you be blessed with being givers rather than receivers!

Avivah

Leaving the hospital

goodbyeI’m leaving the hospital! The staff would have had me stay longer but I told them I have little kids who are really missing me.  I also told them this last week and they told me there’s no doctor in the world who would release me in the state I was in.  But now it’s okay.

I am so grateful for this hospital experience.  I’ve unfortunately had a lot of experiences with hospitals in the last 22 months – two different wards for me after my last birth, six hospital stays with three of my kids that were each at least ten days long, then my mom had two hip replacement surgeries and was in the orthopedic ward and then a couple more weeks each time in the rehabilitation hospital and now I’m here.  So I’ve seen a number of different hospitals and different units and have plenty to compare to.

My stay here has been wonderful.  The staff has been compassionate, kind, respectful and reassuring.  I had a very pleasant roommate for my first four days who didn’t have any visitors and came over to introduce herself to me and to wish me well.  She looked me in the face the first morning that my bandages came off without flinching – she’s the only one except the staff who was able to do that except for dd19 – she talked to me the way she would have spoken to anyone.  When she left I hoped that I would get another roommate that was just as nice since I felt very fragile and didn’t want someone who would fill the room with lots of loud visitors at all hours of day.

Early Friday morning I got my new roommate, whose husband was verbally abusive and I didn’t know how long I could bear what I was hearing through the curtain.  They took her for surgery less than an hour after she got here and then the nurse told me she was going to transfer me to another room.

I really didn’t want to transfer.  I felt very vulnerable and my room was the last one along the corridor, on the far side of the room, where people couldn’t peer in and see me when they were walking by.  I was afraid to be in the bed next to the door, to have a roommate who would gape at me, visitors who would stare at me….I didn’t want to step out of my room and definitely didn’t want to have a new roommate watching me as I came in and got resettled.

I told the nurse I didn’t want to transfer.  She said there’s nothing she could do.  I told her it would be really hard for me.  She told me she has to move me because of concerns about me getting an infection from the person in my room who is having surgery, and they can’t put two surgery patients together.  (I’m in the burn unit but it’s combined with a surgical unit – there was only one other person here with a burn during my hospital stay so everyone else is here for some kind of surgery.  That’s why I’m noticeable, even here I look unusual.)  I asked her if they did  move me if I could be on the far side of the room and she briskly told me that there’s no way for them to guarantee that.  I wanted to ask her why she couldn’t move my roommate, who had only been in the room for less than an hour, but that sounded like a petulant child so I didn’t say anything.

A few hours later I noticed that they had taken the belongings of my new roommate away and put her in a different room.  Without saying anything to me, they decided to leave me where I was; although I didn’t make a big deal about it, they realized that I was distressed to move and changed their plans to accommodate me.

Aside from giving me a feeling of security that I could stay where I was, I had the luxury on Shabbos of having my own room (that continued for an amazing four days!).  I was able to close the door to my room and have an unusual amount of privacy for a hospital patient.

I didn’t think my feeling of privacy would last long – my experience in all the other hospitalizations is that the staff habitually fling curtains opens, turn on lights irrespective of the time of day or night and chastise you if you make any attempt to turn off the overhead light or close the door.

Do you know what happened here?  For the entire time I’ve been able to have only natural daylight in my room and keep the bright overhead lighting off.  One of the first days a nurse asked why the lights were off and turned them on, but when it was evening I turned them off again and no one said anything again.  For a week and a half!  A couple of times when they came in the late evening to take my stats they turned on a little side light but even then turned it off when they finished, without me saying anything.

When I closed the door, no one told me I wasn’t allowed to do that.  In fact, some of the nurses and cleaning staff even knocked before they came in!  Knocking, in a hospital!  To me this is a contradiction in terms.  Almost all of them closed the door behind them when they went out.  They not only sensed my desire for privacy but have actively been respectful of that.

I have a window on my side of the room and I’ve been able to keep it open all day and most nights and have plenty of fresh air.  I’ve been able to talk to my family on the phone without worrying about disturbing a roommate.  I’ve been able to listen to relaxing music and an audiobook played aloud.  Since each room has an adjoining bathroom, I had my own bathroom and didn’t have to time my showers or bathroom visits with my anyone else’s needs.

I don’t want to give you the wrong impression – it’s not at all like being at a luxury hotel – but hospitals can be a hard place to be emotionally when you need to recuperate.  God clearly knew I needed a lot of quiet and space to feel my way through this situation and find a perspective that is nurturing and respectful of myself.

I wasn’t sure when I would be ready to leave, and for a while I wondered if I’d ever be ready.  Yesterday I felt a strong tug that I needed to go home because of my kids, but I didn’t feel ready yet.  Making the decision to stay one more day has given me a chance to have a sense of closure and to express my gratitude to the nurses who were so kind to me at a time when I really needed that kindness.  I wrote a letter to all the staff here – and noted on the envelope that it included the cleaning lady – to tell them how much their compassion and sensitivity meant to me.

I wrote another letter to the head nurse, telling her I’ve overheard a lot of staff interactions during my stay and there’s a noticeable lack of yelling, shaming and blaming.  (Without going into specifics, I can say this is totally different from things I’ve overheard in different hospitals/wards.)  I told her that it’s a testament to the environment that she’s spent years creating – beginning with the respectful and non accusatory way that she treats her staff – that we patients are able to benefit from a calm and pleasant atmosphere.

Particularly during the first two shifts after I was admitted I couldn’t see the nurses who were taking care of me (after that I could see a shadowy outline and then eventually could see normally) but the sound of their voices and the feeling of their hands bandaging my face was very soothing.  Five days after I was admitted, two nurses came in to change my linens, and one told me how good I looked.  The other one told her that it was a huge change, that she had been the one who admitted me.  I exclaimed in surprise, “Are you Rachel?” I told her that I had been waiting for her to be on shift again to tell her how much her care meant to me in those early hours.  I felt her kindness coming through without being able to see her – and when I saw this older nurse with a stern face I realized that just like she saw past my burns to me as a person, hearing instead of seeing her made it possible for me to see past her businesslike exterior straight to her kind heart underneath.

How often do we miss what the true essence of a person is because we get distracted by how they look?  Probably most of the time.

Here’s a song that I’m listening to today – now with headphones since on my last morning here got a roommate. :)  This is from an audio program by Louise Hay titled ‘How to Love Yourself: Cherishing the Miracle that You Are’.  I love music in general and songs used well can be so powerful – if they’re filled with good messages they have an added benefit since as they begin to play themselves over and over in your mind, you create new neural pathways in your brain that will better serve you than the old scripts they’re replacing.  This feels like just the right message as I wait to be discharged and get ready to face the real world.

I love myself just the way I am
there’s nothing I need to change
I’ll always be the perfect me
there’s nothing to rearrange.
I’m beautiful
and capable
of being the best me I can
And I love myself just the way I am.

(skipping two stanzas)

I love myself
the way I am
and still I want to grow
The change outside can only come
from deep inside, I know.
I’m beautiful
and capable
of being the best me I can
and I love myself
just the way I am……
I love myself…. just the way I am.

Grateful for my hospital stay, grateful that I’m ready to leave and looking forward to being home!

Avivah

Getting better!

This will be a bit of a roundup post!

On Thursday night dh told me Yirmiyahu was throwing up and out of sorts.  I asked dh to take him to the doctor just to check that everything was normal – I worry about him more than the other kids because of his history.   The doctor said a stomach virus is going around.

Yirmi under the weather and missing his mommy

Yirmi under the weather and missing his mommy

But in this case I think the virus isn’t the problem; I think he’s heartsick that I’m gone.  Interestingly, ds15 and dd19 both came to the same conclusion independently.

I speak to him at least once every day and yesterday he sounded much better!  Dd17 took Yirmiyahu to his speech therapy appointment yesterday.  We’ve had two appointments with her in the last nine months but once again she established a nice rapport with Yirmiyahu and he had a good time with her.  Dd called to tell me that the therapist said Yirmiyahu is very cute, intelligent and highly communicative.  I can’t argue with that!

Yirmiyahu, 21 months, In pajamas blowing an early morning kiss

Yirmiyahu, 21 months, In pajamas blowing an early morning kiss

Here’s a picture that warms my heart.  No, ‘warm’ is too lukewarm a term.  It gives me tremendous joy to see Tehila with her siblings again and I was so happy they came to see me here at the hospital.  For those who are wondering, she’s in an entirely different place than last year; she’s doing great.  She is awesome.  Every one of them is awesome.  I am so, so, so blessed.  From left to right, dd19, dd17, ds15.

My special visitors!

My special visitors!

Some nurses at the hospital asked me if its true I have ten children – not sure how they found out since I don’t remember saying anything – and one asked me, “Isn’t that hard?”  I’ll tell you what I told her, it felt like a lot when they were growing up, but all the work that I put in was a drop compared to the oceans of joy that I have watching them as they’ve gotten older.  Did I say how lucky I was?  I positive I’ve gotten some of the most wonderful children on the planet.  It’s very humbling.

As for me, I am doing really well.  I’ve been enjoying the hospital cuisine – seriously, the food is quite decent and I don’t have to shop for it, cook it or clean up after it, which makes it taste that much better!  I haven’t been able to get extra protein even though the doctor said it’s very important to regenerate the skin on my face.  Dh brought me a container of roasted chicken to keep in the patient fridge to supplement what I get here but it disappeared within a day before I had a chance to eat any!  At every meal I ask them if someone doesn’t take their tray if I can have the extra protein from it and though I don’t love having to ask and feel like a nudnik every single time, sometimes I end up with extra.  I look at asking for extra portions as a way to nurture myself even when it’s uncomfortable.

My face is looking wonderful.  Well, me and the doc tors think so but obviously we have a different perspective than other people.  Other people look at me and then quickly look away, and then when they think I’m not looking, look at me again.  It’s hard to see people look at you and flinch.  The first week I kept my face turned away and couldn’t look at anyone who wasn’t on the staff but now I keep my head up and meet people’s eyes when they stare at me.  This is such major progress for me – I couldn’t bear the thought of having to walk out of this hospital.  When I say I couldn’t bear it, it would have been literally impossible for me to do.  Even mentally I couldn’t picture how I would do it.

I had something wrong with my eyes after the accident and when they told me they were going to send me to the eye doctor in another part of the hospital to have it checked, I refused to go.  The doctor here wanted to know why I was refusing and I told her, I can’t have people staring at me.  She understood and offered to send me with my entire face bandaged but that doesn’t exactly keep people from looking at you, you know?  When I was bandaged I didn’t want anyone to look at me, but when my bandages were off I felt so exposed and vulnerable.  (My eyes were very sore from the fluids draining out of my wounds and one eye was turning in – maybe the trauma to the nerve? – but I’m happy to say that with time it’s gotten better.)

Ds20 (who stayed in Jerusalem since I wasn’t home for Shabbos) asked the other kids who visited me how I looked and dd17 carefully said, “It’s a little surprising.”  That’s a nice way to put it and I was so grateful to my kids that they were able to look beyond the externals and have a nice visit while they were here.  

But really, I do look much better.  Like a thousand times better, without exaggeration.  It’s in the foreseeable future that all the blisters and burn marks will be gone.  I hope I won’t have scarring but the doctors won’t comment on that, they said they can only talk about what is front of them right now and have no way to know what will happen later.  Right now they’ve given me clear instructions for the next six months that I’m to have absolutely no exposure to the sun.  Living in a Mediterranean country with nonstop cloudless sunny days, that’s not a simple matter and this is going to require some lifestyle changes for me in many ways.

The first change will be on the fashion front.   When I leave the house it can only be very early in the morning or late in the afternoon when the sun is at its weakest, and I’ll need to wear a hat and the strongest sunscreen there is.  So I’m going to have to find some awesome hats.  If you have suggestions for where to buy nice hats at a good price in the Jerusalem area, please let me know!  (They have to be some color except for black because black doesn’t suit me.)  It’s going to be a long time until I can do window shopping – unless it’s at night! – so I’d appreciate your help in finding suitable stores.  If there’s a website that I can order from here in Israel, all the better!

A number of you have mentioned Mrs. Green in Jerusalem who is famous for her knowledge about burns and her creams.  Dh got her cream from someone in Karmiel within 24 hours of me being hospitalized but Mrs. Green told him while I’m in the hospital I should do exactly what they say and not use her cream.  She doesn’t give advice over the phone; she needs to see you before making specific recommendations.  Hopefully dh will be able to borrow a car to take me to her on Thursday night (she only sees people on Sunday and Thursday nights) for an appointment. 

Overall I’m quite optimistic.  When my husband met me in the ER, he heard me tell the doctor I couldn’t feel my lips.  I don’t remember what the doctor told me – probably something like ‘It will be fine’ because that’s what everyone said – but my husband realized that I was asking if I still had lips.  It was a huge relief when my husband reassured me that they were still there.  After the accident I was afraid I had lost my face forever, but I haven’t.  It’s going to take time but my features didn’t melt, it’s only the old layers of skin that are gone.

The nurses have jokingly told me that I’ve gotten the equivalent of a deep chemical peel that people pay a lot of money for and I’m going to look better than ever when I heal.  I smiled but told them, “I also paid a high price for this”.  I didn’t have wrinkles or fine lines in my face so I can’t say getting rid of them was a side benefit but I’m sure my pores could have used a deep cleaning and now even better than a deep cleaning – I’ll have new pores!  :)

Avivah

Letting the tears come

tearsThere have been a few things I’ve wanted to write about, but haven’t done it because people might falsely assume I’m always positive or upbeat.  A lot of the time I am but sometimes I’m not.  I’ve always tried to be honest with you here and the last thing I want people to come away with is that you have to be smiling and thanking God for every bad thing that happens to you, no matter what.   Sometimes life hurts – a lot.  What I want to write about today is the tears.

The morning of the accident, I was contemplating a question someone sent me about disabilities.  I was thinking about how hard it is when you look visibly different because people don’t give you a chance to show who you are.  As this thought went through my mind, I realized I had never consciously been grateful that this wasn’t my challenge.  Right that minute I said out loud, “Thank you God for giving me a normal face.”

I find my tendency towards premonitionary thoughts like this a bit unnerving (eg mid pregnancy repeatedly feeling Yirmiyahu would have T21, the highway accident I was almost in a few years ago).  Why for the first time in forty years did I have this thought a few hours before my face was badly burnt?  I’m positive the soul is whispering to us at these times but what I wonder is, why?  Is it is a knowing something is going to happen, or a shadowy sense of warning that you’re slated for something to happen?  Is it a fleeting opening to help you prepare for your new reality before your reality changes?

When I was in the ambulance, I kept whispering into the wet towel I had brought to keep on my face, ‘please God, give me my face’.  And then I thought, ‘Maybe you don’t need this as part of your soul’s mission anymore and this isn’t what you should be asking for.  What you need is to ask for in help accepting God’s will’.  I swallowed hard, very hard – and thought, “Please Hashem, help me to accept whatever Your will is for me.”  After a long pause I whispered, ‘And if it’s Your will, please give me back my face.’    

I screamed twice when I was burnt, but I haven’t cried that much.  There have been a few little times here and there but mostly whatever tears I felt welling up could be swallowed down.

But in the last couple of days I’ve had some intense waves of sadness come over me.

On Friday morning dd19, dd17 and ds15 came to visit me for the first time.  My face was much better by then – every day is a visible difference – but I was worried how they were going to react when they saw me.  I heard ds say, “Hi, Mommy” as they came into my room but before they saw me I covered my face and started crying.  I couldn’t keep my face in my hands forever so I took my hands away as I stood up and hugged them, still crying.  As I hugged Tehila (dd19) for the first time in over a year she asked me if I was crying from happiness or sadness and I said, ‘I don’t know’.  It’s a mixture.

On Friday night I went to the nurses station to light Shabbos candles, feeling upbeat and cheerful.  This was the first time I was able to venture this far from my room into the public domain – it’s about five or six steps away – but mentally letting myself be somewhere that someone who wasn’t on the medical staff would see me took a lot of courage.  As I waved my hands in front of my eyes three times and opened my mouth to say the blessing, I started sobbing uncontrollably.  It was like something cracked open inside of me.

I felt subdued as I  began my Shabbos meal in my hospital room.  As I sang Aishes Chayil/ A Woman of Valor, and got to the line ‘She is robed in strength and dignity, and she smiles at the future’ I faltered and couldn’t swallow the lump in my throat.  I took a couple of deep breaths and my voice quavered but I continued, until I got to ‘Grace is elusive and beauty is vain’.  I tried to sing this but broke down a few times before I could compose myself enough to finish the line - but a woman who fears God — she shall be praised.

After Shabbos was over I washed my face and thought how amazing it was how much better I’m doing.   Until now I’ve only asked the staff how much longer I have to stay in the hospital and assumed that their answer meant I would be better by the time I left with a little residual pinkness that would fade in a very short time.  When the nurse came in, I asked her how long it takes an injury like mine to heal. For the first time last night I had a sense that it could be much longer than what I’ve been telling myself.  Despite that I wasn’t ready for her answer.

The nurse responded that I’ll have to stay out of the sun for the entire summer – and summer isn’t even officially here.  The concern is about scarring.  My eyes welled up with tears and I couldn’t answer her without a break in my voice.  Another six months?  I needed some time to process that.  Last night I was very sad and I couldn’t sleep for a long time.

Why am I telling you all of this?  Because it’s not good to say everything is fine and not acknowledge to yourself how you’re really feeling.  Feeling your sadness and your anger and everything else we tend to not want to feel or see – and other people don’t want to see – is a critical part of coming to terms with your life and eventually having emotional peace.

This would be a much more upbeat post if I didn’t tell you all of this but one day you’re going to go through hard things and I want you to remember this – that you don’t have to be strong.  You don’t have to smile and be grateful that something bad happened to you.  You don’t have to assuage the anxiety of those around you who are much more comfortable with you smiling and being positive than with your raw emotions.

Feelings come in waves…you have to be willing to feel them when they come even if they threaten to engulf you.  Eventually the waves subside.  The waves will keep coming but each time it will get a little easier.  A storm doesn’t last forever and our tears are a tool to help us through the storm.

Avivah

Update on Avivah

serenity-prayer[1]I owe so much to all of you, for the prayers and good wishes and desire to help….I’ve been overwhelmed and brought to tears by your concern.  I am so grateful for every one of your comments (I’m sorry I can’t respond to each but I’ve seen them all), your emails, your tehillim…. I feel truly surrounded by love.  I’m laying low now and not really talking or writing much but want to share now out of my gratitude to you all.

(side note – To Yael Alrich for setting up a challah chain – thank you!  When forty people prepare challah dough and ‘take challah’ with a bracha – it is a powerful merit for the person it is being done for.  I am so touched by those of you who want to do this for me and your tefillos are very appreciated.  If someone wants to participate, here’s the link - challah segulah chain sign up.)

I am doing better.  Every day is a little better.

The night I was admitted to the hospital all the hospital staff who checked me told me how lucky I was.  They were talking about my eyes being spared but I assumed it meant my face, too.  So when I saw myself in the mirror in the bathroom I was horrified – there was no part of my face left that I recognized.  Nothing.  

Then my face began swelling, so that one eye was swelled entirely shut and the other eye was able to open halfway.  I didn’t think I could look worse but I did.  After two days of swelling, when I woke up one morning and could open both eyes, I felt hopeful.  Then the bandages covering my face came off, and I wished they could stay on.  I shuddered at the person in the mirror who wasn’t me, but she was…I didn’t want to see myself and I didn’t want anyone else to see me.

This morning the woman who cleans the floor came in and looking at me said, “Very nice!”  I looked behind me, thinking she was admiring the pictures of me with my kids on the wall behind me but when I looked back she was looking straight at me.  I asked her what she was talking about, and she said – “You! You look great!”  I said, “This (pointing to my face) looks great?” (In case it’s not clear, I have no part of my face that isn’t burnt except my eyes.)

She hurried to clarify, thinking she had insulted me, telling me how much better I looked than a couple of days ago.  I didn’t know who came in during the first days because I couldn’t see much so I didn’t know she had seen me unbandaged at an earlier stage.  But she’s right.  I look much better.

My face isn’t so swollen anymore, my eyes can open all the way.  My face is covered with different stages of the burns – in some places I have blisters, in some places my skin is peeling, most of my face is a dark reddish color.  I don’t look a bit attractive (that’s the understatement of the year) but it’s all much better than it was.  I would very much appreciate continued prayers for a complete recovery.

As of now I’ll be staying for Shabbos; the doctors just told me they’ll reassess my situation on Sunday.  My daughter Tehila came home after over 13 months in the US the night after my accident.  I was so excited about this visit and couldn’t wait to share with you about her homecoming.  I obviously missed it.   I spoke to her yesterday, though.  I was so much looking forward to this Shabbos…. the first Shabbos in so long that our entire family would be together – but obviously that wasn’t supposed to happen.  Hopefully I’ll be home next Shabbos and then we will have that time together. 

So that’s the update about the physical stuff.  It’s going to take time.

Emotionally, I almost strangely feel a lot of peace about this situation.  Being in the hospital without visitors or having to answer the phone is giving me time to rest and reflect.  I don’t want visitors – I just want to be by myself right now, not from a depressed way but from a place of needing some solitude.  I don’t want to talk about the accident or about anything, actually.  Posting here is the exception.

Finding the way through murky times....there is always a path.

Finding my path….

As I physically heal I’m taking time to listen to the voice of my soul, to access my inner wisdom and absorb some messages about what I’m supposed to learn from this situation.  It’s very subtle and very powerful.  This is very very very hard to do – maybe impossible – in the busyness of daily life.  So while I wouldn’t have chosen this, I’m gaining something very valuable from this experience.

Avivah

Memories of a year ago

The following post was written on Monday morning, several hours before I was badly burned in a kitchen accident.  I had decided that morning not to schedule it to post because I felt it was too heavy and didn’t want to overwhelm my blog readers.  As I write from the burn unit of the same hospital where Yirmiyahu was in the intensive care unit a year ago, I’m feeling a lot of things – I’ll share about that in another post (I apologize for not writing more now to update all of you but I’m not up to it yet) – and my overwhelming feeling remains gratitude.

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A couple of weeks ago, I shared pictures from Purim this year and also a couple pictures from last year.  When I pasted those pictures into that post, it was hard to look at them, knowing that I had no idea what was about to happen to my life.  Anniversaries of difficult events can be very hard times and in these last two weeks I’ve thought a lot about where we were a year ago.

On Purim a year ago, my life was normal – some challenges, some good things, just like most of you.  And then a week later I began the hardest period of my life, when my oldest daughter who had an eating disorder and was visiting the US for a three week trip was taken to the emergency room.   The saga began when I was called right before Shabbos by a friend who told me dd18 would probably need to hospitalized since she hadn’t eaten for a week.  My anxiety on hearing this was very high; I was far away and unable to do anything to help.  My friend then called me on Friday night at about 2 am – it was Shabbos for me -knowing that even though I couldn’t pick up the phone I would hear her as she left the message on the answering machine. She told me it was okay, they  got her to drink a Boost and it looked like she wouldn’t need to be hospitalized.  That began a period of over two weeks in which I hardly slept.

After Shabbos I couldn’t call to find out what was happening since in the US it was seven hours behind us and they wouldn’t be able to answer my call.  I couldn’t sleep much that night, sensing that when morning came that there would be bad news.  I finally fell asleep at 5 am and was awakened at 7 am by a phone call.  It was my friend calling from the hospital where my daughter was taken on Shabbos.  It was midnight there and she told me that a group of about ten people from the community had gotten together at midnight to meet at the hospital trying to figure out what to do to help my daughter.  They said I needed to come immediately, that her situation was very bad and it was urgent I be with her.

I had an eight month old baby with no passports and the American embassy wasn’t open on Sundays.  I rushed to the Ministry of the Interior where we were able to get an Israeli passport for Yirmiyahu within a half hour.  I spent the afternoon trying to get an emergency appointment at the embassy the next morning.

We went to the embassy knowing that in the US they were working on getting me a flight for that day but I had no idea when I would need to travel.  We were issued an emergency three month passport for Yirmiyahu; a lasting result of this situation is that his American passport doesn’t have the English name I had planned to give him – Jeremy.   The flight had to be made in the name that was on the passport and to make his ticket, I gave them the Hebrew name on his Israeli passport since I couldn’t take a chance that there would be a technical issue with the American passport.  Every time I see his US passport it reminds me of the urgency and fear of the situation we were in at the time.

In the meantime, a flight was made for me for Monday evening with the hope that we’d be able to get the passport in the morning; I had no idea what was happening with the flight details until after we left the embassy and got confirmation that my flight would be that evening.

Right now I can’t detail the visit that then took place when I got to the US.  I have a lot of hard memories and my stomach clenches up as soon as I think of any part of that.  I slept between 2 – 4 hours a night for over two weeks, which exacerbated the stress of everything.  The tension was enormous, trying to get Tehila health insurance, trying to get priority admittance to the eating disorder unit of a local hospital while special arrangements were made to allow her to have emergency room status for eleven days.  This was done since she had recently turned 18 and technically someone with anorexia who was her age would have been put her in the adult women’s psych ward, a unit where no one felt she belonged nor did they think she’d get the help she needed.

Meanwhile, Tehila wasn’t eating or drinking anything.  Her heart rate was dangerously low (I think it was down to 32) and the risk of sudden cardiac arrest was very high.  Since she was legally an adult, they couldn’t give her anything more than a fluid iv without her agreement, so she didn’t get any calories or nourishment during her entire hospitalization.

The stress of Tehila’s medical situation was compounded by my lack of transportation and the difficulty in getting to visit her each day.  Once I took Yirmiyahu with me since I had no one to watch him; Tehila was in a private room in a non-contagious ward – and I kept him in my arms or in the carseat the entire time, except for the few minutes that Tehila held him.  It wasn’t enough.  Somehow he picked up a virulent virus as a result of being in the hospital for this short visit.

On Friday night – in the middle of the night – Yirmiyahu began to spit up.  I didn’t think much of it.  The next day I was at a friend afternoon, Yirmiyahu threw up a couple of times and he had a couple of loose diapers.  By Sunday  morning he was making little fussy sounds – I told a friend at 8 am that morning who gave me a ride that something was wrong, he wasn’t himself.  I was planning to reconnect with some area friends at a homeschoolers get together that I had been very much looking forward to, but in the next two hours became so worried about Yirmiyahu that I didn’t go.

A friend who is an energy healer who I was meeting with that morning was also concerned when she saw him.  She asked her son who is a paramedic to look at him, and he didn’t see anything to be concerned about – I was worried about dehydration.  Since it was Sunday our pediatrician wasn’t in the office and when I called the doctor on duty and described to her what I was seeing, she said it sounded like a virus and to keep him hydrated.  My friend offered to drive me to an emergency clinic if I wanted but I was so exhausted and didn’t trust my ability to think straight.  I had concerns about insurance that were part of this – at this point I was planning to return with Yirmiyahu for four months after Pesach and was worried this might affect them giving him insurance -and I thought I was overreacting due to exhaustion and stress and seeing things that weren’t there.

The next day he slept most of the day and seemed to be recovering; I gave him lots of fluids whenever he woke up and that evening I took him to my chiropractor who does energy work.  By this time Yirmiyahu was looking better than he had the morning before but I was still worried because when he woke up from his long nap, he was unsettled – not like himself at all.  She checked him energetically and said ‘he’s starving’ and went with me to the store to find a formula that he wouldn’t react to, since she tested him and found him allergic to the formula he was having at the time.

All night long I felt worried about Yirmiyahu.  He just wasn’t himself.   I gave him the new formula and continued pushing fluids to keep him hydrated.  I planned to take him to the doctor in the morning. It was now Tuesday, the day we were supposed to fly back to Israel – but first thing I got a call from the hospital that my daughter was finally going to be transferred to the eating disorder unit of another hospital and I needed to get there immediately.  This ended up being an all day event rather than two hours and I got out of the hospital at the time I was supposed to be at the airport checking in.

A friend picked me up from the hospital and took me to where I was staying, where I frantically packed and then we raced off to the airport.  At this point Yirmiyahu seemed to be doing okay; I had left him sleeping when I went to the hospital in the morning and the first time that day I held him was when I put him in his carseat to go to the airport.  I got there just ten minutes before boarding.

Just a couple of minutes before the plane began to taxi down the runway, Yirmiyahu threw up again.  I had been telling  myself that my chiro would have picked up if something was really wrong, no one else seemed to be worried, it was just a virus that would pass – but at that minute the thought went through my mind, what would happen if I get off this flight now and get medical help?  I had no reason to think it was anything more than a typical virus and with nine other kids I had never experienced a virus that didn’t pass given time, rest and some immune support but I was feeling really worried.

I transferred to my next flight and my seat mate was a doctor.  He commented when he saw me changing Yirmiyahu yet again – his diapers kept soaking through- and I mentioned that he was sick.  I was reassured that there was a doctor next to me for over ten hours who was seeing my baby close up – who I conversed with at length about a number of topics – and didn’t see a problem.

Ds14 and dd12 picked me up at the airport and were both very worried as soon as they saw Yirmiyahu.  (When we talked about this last week ds told me his head looked like a skull.)  I reassured them with whatever words I had been using to reassure myself, wanting to just get home and speak to dh about it so he could assess the situation and decide what to do. We got home and ds5 looked at Yirmiyahu and asked why he looks like a different Yirmiyahu than the one I took to America.  It was late at night and dh went to sleep before the kids so we had no time to talk; he woke up and left the house before I woke up and so it wasn’t until late morning that I finally spoke to him.

I wanted to take Yirmiyahu first thing in the morning to the doctor but was so dizzy from exhaustion that I literally could hardly stand up and was afraid of dropping him.  My husband was out all morning and as soon as he got home, I asked dh to take Yirmiyahu to the doctor.  I was so anxious by now that I couldn’t even tell dh how worried I was, just told him to take him right away.  When they got there, the doctor – who had interned in the pediatric intensive care unit – immediately put him on oxygen, called an ambulance and they were sent to the hospital.

When my husband called to tell me Yirmiyahu was dehydrated and they were going to the hospital, I was so relieved.  I was so relieved someone else finally saw what I was seeing, that something was wrong.  Dh took him to the hospital on Thursday; we decided dh would stay with him over Shabbos so I could be with the kids so I could reconnect with them after having been gone a week and a half.  On Sunday morning I went to the regular pediatric unit and they told me Yirmiyahu wasn’t there; they looked him up in the  computer system and that was when I learned that Yirmiyahu was in the pediatric intensive care unit.  It was at that moment when I realized things were much worse than I had suspected.

I entered the silent intensive care unit and glanced at a bed with a young child propped upright with tubes and wires everywhere.  I didn’t see Yirmiyahu and asked a nurse where he was.  The nurse asked my name and then pointed to the child propped up in the area just to the left of me.  I said no, that wasn’t him.  He told me it was.  I went closer and the nurse was right – it was my own precious baby and I didn’t even recognize him when I was looking for him.

That time in the intensive care unit was…intense.  I asked them if I could hold Yirmiyahu, and he spent most of his time in my arms while connected to his wires.  I kept crying and apologizing to him that I let this happen to him.  The guilt was overwhelming.  When he was released after five days to the regular pediatric unit (where he spent another five days), the nurse that accompanied us told us that his bloodwork when he came in was so bad that none of them expected him to live.

I described to the nurse all that had happened and asked how it could have looked like he was doing better and then be on death’s door a day later.  She said young children have a strong ability to rally but that when they deteriorate it happens very fast.

Looking back, I technically did all the right things- I did everything right except for listen to my gut feeling.  I kept overriding my inner voice and intellectualizing that the people who were medically trained knew better than me.  I can see in retrospect that we were meant to go through what we went through, since there were enough people involved every step of the way who might have realized what was happening to Yirmiyahu but didn’t.

We returned home from the hospital a day before Pesach, emotionally drained but overflowing with gratitude that both of our children who had been in dire danger were still alive.  As grateful as I am to be where we are now, the memories of that time are very hard and this anniversary period is filled with some very intense emotions.  I’ve been processing a lot for these two weeks and now that it’s getting easier I’m finally able to share here with you.

Yirmiyahu and I left the hospital the day before Pesach, and as we approach that anniverary – this week marks when I went into the hospital with him – I’ve begun to plan for a seudas hodaah – an official meal of gratitude – to thank God for His unending goodness to me.

Avivah

Avivah Michaelah bas Sara – Please Pray

On Monday afternoon a can of hot fluids exploded in Avivah’s face. She was taken by ambulance to the nearest hospital and is in their burn unit. She suffered 2nd degree burns on her whole face and neck.

The doctors said she is very fortunate that her glasses shielded her eyes or she would likely have been blinded. Her eyesight was not affected. The doctors are optimistic for a good recovery. At this point they told us she would be in the hospital for a week, but they will reassess in the coming days.

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Avivah and our family would appreciate your prayers.

Edited to add – thank you to Yael Aldrich for setting up a tehillim sign up.  If you would like to participate, please sign up at this link - https://docs.google.com/spreadsheet/ccc?key=0AsKJxK1rRZoTdFdmbWkzVVdOVS10TTNKM2Y3M3ZYSEE&usp=sharing#gid=0

Avivah’s DH

 

Switching seasonal clothing highlighting how fast kids are growing

Ds4 on spring hike with dh last week

Ds4 on spring hike with dh last week

Here in Israel spring is in full force.  The trees and flowers everywhere are blooming, the breeze is warm, the sun is shining brightly…yes, I feel for those of you who are once again dealing with snow in the US.

The last couple of days I’ve taken a good chunk of time to go through the clothing boxes I have stored in my attic, to take out clothing better suited to the warm weather we’re having.  (I buy when I find good sales and set aside clothing in good condition that was passed along to us and then we usually have what we need when a new season begins; instead of running around to stores I can just take out the box for each child.)

Goodbye, winter!

Snuggling up for reading time in the winter!

Snuggling up for winter bedtime reading!

Since the three younger boys were born within three years, I tend to hold on to a lot of clothing in the sizes they’ll be wearing. Today I realized that I’m finished with the size 4 clothing until Yirmiyahu will need it.  Since I won’t need as many duplicates as I’ve had until now, I went through it all and set aside lots of clothing to donate.  There’s nothing like giving away too small clothing and taking out clothing that was previously too large to highlight how fast your children are growing!

With ds7 having a birthday coming up in a couple of weeks, followed by ds4 having a birthday six weeks later, I have a bittersweet feeling of watching the chapter close on having this cluster of littles being little.  Below are the three cute boys who have long been referred to on my blog -until this year – as ‘the littles’.  I can sit at the park and watch them play without having to get up and run after any of them.  It’s very nice, actually.  :)  From left to right are ds4, ds6 and ds7 on a spring hike a few days ago.

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How quickly they’ve grown!

And here are the three children long referred to – until this year – as ‘the middles’.  When I started this blog they were 4, 6 and 7, about six months younger than the three in the picture above are right now.  No need to call them the ‘middles’ anymore with the three ‘bigs’ out of the house this year.  From left to right, ds11, dd13 and ds15.

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Enjoy the time with your children – the years really do go by quickly!

Avivah

Yirmiyahu update – 20 months

IMG_2282Time is zooming by and Yirmiyahu is already 20.5 months old!  And since today just happens to be World Down Syndrome Day, it’s the perfect time for an update!

Where is our busy little man up to now?

Climbing – For quite some time Yirmiyahu would climb up the first stair of our home, then go back down.  When I take him to the park (usually at least twice a week – all the  kids there know that’s his spot!), he spends most of his time at the bottom of the slide, standing next to it, climbing up and then climbing down.  And then a couple of weeks ago, literally from one day to the next – he climbed up the entire spiral staircase in our home to the second floor.  This was very exciting – he loves it and has a great time waving to us from under each step as he does us – but it’s also a little nerve wracking.  A couple of times I found him upstairs with no one in sight; both times he had climbed up himself when no one was watching him.  He’s really fast and he loves being able to go where he wants to go!

We quickly got a baby gate to close off access to the stairs and closed off the open spaces along the sides of the stairway so when he was climbing there wasn’t the fear of him slipping through the side to the drop below.  The gate works fine as long as we latch it.  For a while we were pulling it shut behind us, until Yirmiyahu began to push it open and then climbed up. A day or two after this,  I watched him push the gate open, climb up a step, then turn and carefully pull the gate shut behind him – funny to watch since he’s copying what we do but the reason we close it behind us is to keep him out!  Since I want to encourage his climbing, I let him climb as often as he wants as long as someone is there to keep an eye on him.

Standing - Yirmiyahu began standing independently a couple of months ago and has gotten much more stable.  He regularly cruises around holding on to the couch and chairs, and in the last week he’s begun taking a step in the direction he wants to go in before falling into the arms of the person he’s going towards.  I have a feeling that he may begin walking as suddenly as he began climbing the stairs, with a long preparatory warm up period as he builds his core muscle strength.

Signing – we’ve taught Yirmiyahu some basic words in sign language.  Recently he signed something to one of the older kids, who showed me the sign and asked me what Yirmiyahu was asking for.  It was the sign for a pear and we had only showed him the sign two times a couple of minutes apart a week before – funny that Yirmi remembered what it was better than his older siblings!  He’s done this a couple of times, signed something a week after having been shown the sign, and at the time we showed him the sign we thought he wasn’t absorbing what we were showing him.  We don’t plan to use sign language extensively, but want to give Yirmiyahu the ability to express himself to some degree while his verbal skills are still minimal.

Reading – Several months ago we began an early reading program with Yirmiyahu.  I began using the BrillKids Little Reader program, which is excellent.  If I’m on top of things, he watches this twice a day but it’s challenging since his siblings all run to the computer when I put this on for him and then he gets distracted looking at all of them rather than the screen.

A few weeks ago I began printing my own own flashcards to supplement his computer program.  Each card is half the size of a letter size piece of paper, with a picture of the word on the back.  I laminated them and use them to quickly flash through each side with him.  I thought this would hold his interest more than the computer program but it hasn’t worked out as much like that as I anticipated.  Interestingly, the set of cards he likes best are action words – and that’s the only set I  made that has no pictures.  I act out each word as I show it to him and he cracks up at some of my charades so no surprise that it’s the most interesting group of words!

Ideally it would be best to use the same five to ten cards each day for a week and then rotate and add in new cards.  But I’m not that systematic.  I made almost 180 cards (clothing, body parts, transportation, colors, toys, common animals, wild animals, nature, action words and things you eat with) and I pick up whatever set I think he’ll be most interested in at that moment.  Part of why I’m relaxed about this is because I think of this as reinforcing his computer program so I’m not strict about the structure.   Sometimes I show him the cards a few times a day, sometimes just once, sometimes in addition to the computer program and sometimes not.  It takes less than a minute each time so it’s not an issue of major time, the bigger issue to is to remember to take them out.

The Little Reader program has options for customization that I haven’t explored much yet.  However, I did do some customizing to create a new category called ‘family’.  This includes all his parents, siblings, and this week I added in my mother and her husband.  (I’ll add other family members as time goes on.)  For each person, I’ve loaded two or three pictures.  In addition to dh and I, dd17, ds15, dd13, ds7, ds6, and ds4 each did an audio recording of their names.  So what happens is Yirmiyahu sees the name of each person flash across the screen while hearing that person say their name at the same time, then sees a picture of the person as the name is repeated.  It’s the same structure as the general program but with words that mean something to him.  I play this category kind of as a reward for him after doing his regular words – he LOVES this.  He sits there absolutely mesmerized and can watch it play again and again.   This week I changed the order of all the pictures and people so it’s not predictable what the next screen will show, and in honor of Purim I added in fun pictures of each person in costume.

I can’t really tell you how much he’s picking up or not at this point (though I think it’s highly likely he can at least recognize the names of the twelve immediate members of our family) since my focus is on providing stimulating input, not on testing.  I’d like for him to be reading English well before we start on Hebrew reading and my general goal is for him to be reading English by the time he’s five or six.  That will take work but I think it’s realistic for my relaxed way of doing things.  I know of people who have taught their kids with T21 to read at 3 or 4 and though I’m sure Yirmiyahu is capable of it, I don’t know if I’m capable of the necessary consistency!  My goal is more of a general direction to move towards, not something rigidly fixed in my mind and if we achieve it a bit earlier or later is fine.

Growth – Yirmiyahu has hardly grown since I posted two months ago that we had finally seen some growth after beginning to supplement for cerebral folate deficiency.  I really don’t know what to do about this.  I posted a picture in my last post of him a year ago at 7.5 months and he weighs only five pounds more now than he was then.  It’s not that having a child who is small for his age is inherently disturbing to me; kids come in all sizes and the outside doesn’t determine the value of what’s inside.  My issue is that he has the same tall genes as everyone else in our family and to be so small is a result of that pesky extra chromosome suppressing his growth and that’s a medical malfunction.  Sometimes I feel like I’m failing Yirmi that I can’t figure this stuff out for him.

Health – Overall Yirmiyahu is doing great – he’s strong and healthy and smart!  There is one medical issue that needs to be taken care of now.  We had an appointment with the nephrologist this week who was appalled that he hasn’t been treated surgically yet for the bladder malformation and felt it was medical negligence that the other doctors recommending leaving it this long with it being at the most severe level, when it could be taken care of so easily surgically.  It’s hard to know which doctor to trust when they’re both saying such different things and both are supposed to be good doctors.  At this point my preference is to do surgery; once it’s taken care of we never have to worry about this again.

The alternative to surgery is ongoing daily antibiotic treatment, which the first urologist and I have a difference of opinion about.  He felt there’s no downside to taking the long term daily antibiotic route (for the next five years at least) and I feel this will seriously compromise his health.  Yirmiyahu restarted antibiotics again a couple of days ago and as of today his stomach is already a mess. I’ve worked hard to rebuild his gut after he went through so much in the NICU and then the PICU and it’s like starting at square one again except if he has to be on antibiotics every single day, that doesn’t leave time to help him grow good gut bacteria.  He’ll need to stay on antibiotics until he has surgery.

The earliest appointment I could get with the recommended urologist is in two months; the appointment is to discuss surgery and we’ll schedule surgery based on his feedback.  I don’t have any idea when we’re moving so I hope we’ll still be here by the time the surgery is scheduled; otherwise I’ll have to start this all over again with different doctors in the area that we move to, and that will delay the surgery by several months more.  Right now I’m making plans with the assumption we’ll be here and if something changes, I’ll adapt my plans at that point.

What isn’t new is the joy and light this little person has brought into the lives of us all!  I love watching my older kids come home each week and interact with him – they are so in love with him!  I joke that his first words are going to be, “Oh my gosh, you’re so CUTE!” because he hears this all the time.  They younger siblings enjoy him but the older kids ages 13 and up simply delight in him!  Last night one of the kids said he hopes Yirmiyahu doesn’t get spoiled because of all this adoration he gets, but I told him a child can’t be spoiled with lots of love.  They can be spoiled when they’re allowed to act badly and it’s considered acceptable, because after all, he has a disability.  But to return some of the love he radiates out to us all back to him isn’t spoiling at all!

Avivah

(This post is part of the Day in the Life Series that is part of World Down Syndrome Day.)

Purim pictures 2014

Five middle boys - ds15, 11, 7, 6, 4

Five middle boys – ds15, 11, 7, 6, 4

Dd17 made a large batch of cinnamon rolls before Shabbos and put them in the freezer, then made another large batch this morning so we’d have enough to give out to everyone.  Ds15 confirmed they tasted good when he came home – while he was out he stopped at one family who was in the middle of eating our cinnamon rolls and told him how good they were, continued to the next family who had a pan of our rolls on the table and told them how good they were (and offered him some, which he was happy to accept!), and went to a third family who was eating – guess what? – our cinnamon rolls!  (They also offered him some and being a teenage boy, he didn’t mind having some more).

I enjoyed a relatively peaceful morning with all of the coming and going; the kids and dh did most of the deliveries while I got ready for our meal with 24 people.  In the end one guest didn’t show up so it was only 23.  There were a lot of kids but everyone got along beautifully and we all had a very nice time together.

For our Purim meal, dh did a story presentation accompanied by quickly drawn pictures to illustrate each scene.  The kids were all very engaged, even the one who just turned two years old!

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Ds15 and Yirmi watching cartooning show together

Ds15 and Yirmi watching cartooning show together 

Yirmiyahu didn’t like either of the two costumes that I got for him, so when he woke up wearing his green pajamas this morning, one of the kids had an idea to make him a little green boy.  Hence the green face paint on his forehead.  He found having it applied quite a blissful experience.  Seriously.  When it got rubbed off at the end of the day, the kids wanted to reapply it just so I could see how much he loved it!

Yirmi - 20 months

Yirmi – 20 months

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I have lots of other pictures but all of them have people who aren’t family members in them so I won’t share them here.  I’ll make up for it with a couple of pictures from last Purim instead. :)

Dh, me and Yirmi the bear (7.5 months)

Dh, me and Yirmi the bear (7.5 months)

Me and Yirmi

Me and Yirmi

This year was a slow start for me for getting into the spirit of Purim, but in the end it was a wonderful holiday with family and friends.  I hope all of you who celebrated Purim also had a wonderful holiday!

Avivah