Carried in His Hands


"Don't tell God how big your storm is; tell your storm how big your God is."

I believe in God.

Sunday, July 17, 2016

Recent Happenings: Pain, Brian, and a Tiny Miracle

--First of all, let's get it over with: Pain.  I have been in so much of it, so many days become the worst I've ever had...because the pain just creeps worse, and worse, and worse.  I saw my pain specialist Friday, and she actually said, "I'm stumped."  I think I felt the bottom drop out of my world when I heard that.  As I put it to someone today so he would know and understand how bad this was, "Up to a seven I don't complain...but it never, ever drops even that low anymore."  I am desperate, truly desperate.

--Now, something more cheerful: Recently, I think last Tuesday, a long-lost friend made contact with me! Brian (real name used with permission) and I took a Creative Writing course together in Fall 2014.  I hadn't spoken to him since--almost two years--but he had been trying to find me since the course ended! Thursday we finally talked on the phone...for TWO HOURS.  He has come alongside me in my time of need, and he is wonderfully there for me.  He loves me and cares about me...not that he's said so yet, but he doesn't have to.  It's obvious to me from our conversations.  We plan to go to a museum together next Sunday.  As always now, I will have to do it in a wheelchair...but that's not a problem because I fully trust him to push it properly.

--And, the tiny miracle: When the Rabbi at the Orthodox synagogue I now attend heard how much pain I was in, and that my doctor couldn't do anything more, he insisted on taking me to the grave of the Rebbe (last great leader of the Chabad movement) to pray for healing.  I didn't think it would do much good, but I could tell the Rabbi really wanted to help and this was the very best he had to offer, so I agreed to go along.  On the car ride there, I was at a 10 out of 10, and thinking "I shouldn't have come; it's not going to do anything, and the bumpy car rides are just going to make me worse."  And yet, somehow, on the car ride back, I felt better! That absolutely should not have been possible, what with riding over bumpy roads, the stairs at the building, and standing up, without leaning on anything, next to the grave for about 10 minutes.  Yet it did! Now it brought me from a 10 to a nine--still an unbelievable, unimaginable amount of pain--but I will take whatever I can get.

--To end my post, here is a Reece's Rainbow Aging-Out child.  With this entry, it is time to post a girl.  So, please meet "ASHLEY," diagnosed with DOWN SYNDROME, and only Down Syndrome! "Ashley" ages out THIS OCTOBER...that's three months.

Ashley (1)

Sunday, June 5, 2016

My New Synagogue

Yes, you read that correctly! The Orthodox synagogue I attended this past Sabbath was much more than a "nice place."  Everybody went out of their way to make me feel welcome, and despite the fact that I acted much more like their men than like their women, even though I am a woman, nobody seemed to mind, and I did feel welcome.  Next week I am even daring to take my prayer shawl; I saw another woman there wearing one this week.  It's going to be a while before I let my holy fringes from my undergarment dangle, but possibly I can even see that happening, too.

For Friday night, this synagogue is an even better option than the one I used to attend; I have a strong feeling I will continue going to this one even after I have a choice again.  This synagogue gets a minyan, the prayer quorum of ten required for much of the service, even without counting women; the other synagogue struggles to make that happen, even though they do count women.  Without a minyan, the service takes maybe 20 minutes; it's not worth walking sixteen blocks each direction for that.  Also, this is an Orthodox synagogue that allows women to sing.  (Some don't.)  Everybody present, including the women, knew what was going on and how to participate, and participate they did.

For Saturday morning, I still prefer the 16-blocks-away synagogue, but this one will do for now, and it's much, much better than nothing.  It's also close enough that I can go back for the late evening end-of-Sabbath services and such.

And the best part? The Rabbi, who is black-hat-and-frock-coat ultra-Orthodox, likes and respects me. I can tell.  I spent the whole Sabbath acting more like a man than like a woman, and he could have chosen to be annoyed.  Instead, he sees that I care about my Judaism, and that's what he cares about.  Perfect example: On Saturday afternoon he gave a d'var Torah, a speech about something Jewish.  Everybody else congratulated him with the usual Yiddish at the end; as is my norm, I used the proper Hebrew.  At first he didn't understand what I said; he asked me to repeat myself, so I did.  He didn't say the proper return formula, but he did say "You too."  From the way he said those two little words, I could tell that he was developing deep respect for my knowledge level.

Also, at one point during the service, the Rabbi noticed me sitting when everyone else was standing.  He walked over and parted the barrier between the men's section and the women's section (I was the only woman present) to ask if I was OK! In the moment, of course I just said yes; it wouldn't have been right to interrupt the service to explain.  People are so warm and friendly there, though, eventually I think I'll have to say something about pain, which I haven't yet.

As the Sabbath went on, I lost my shyness and people saw and heard more of how I do Judaism.  I could tell that they were beginning to both wonder why I was there, and to have some inkling that there was more to my story than I had told.  (All they know so far is that I wanted to try out a different synagogue.)  A few people know that I "didn't feel like making the long walk" to my usual synagogue; one person knows that I "have trouble standing."  That's all anybody knows right now, which is as it should be, but especially considering how kind the Rabbi is to me, he at least is going to have to know something more pretty soon.

And another best part? Despite the fact that I am still hurting just as much as I was before (and Friday night was so bad I couldn't sleep with covers), I feel so emotionally energized and recharged, enough to go back to helping the world.  So here is "GRAYSON," the first boy I came to on the Reece's Rainbow "At-Risk of Aging Out" page whom I haven't posted yet.  "Grayson"  ages out NEXT JULY, and is diagnosed with DOWN SYNDROME, CEREBRAL PALSY, FLAIL LEGS, SECONDARY MULTISYSTEMIC CENTRAL ORIGIN DYSTROPHY, DELAY OF PHYSICAL DEVELOPMENT, and SEVERE MENTAL DELAYS.


Friday, June 3, 2016


I'm really, really struggling with pain right now.  I am having a harder time than I've had since the pre-diagnosis days.  I don't really understand why; we did a full week of Ketamine last week, and now I'm feeling worse than I was before.

I am, however, a mighty strong human.  There is absolutely no way I can make it to the synagogue I like to go to (16 block walk each direction) this week.  I could choose to hole up and be miserable, but I am not.  Instead, I am trying out a different synagogue, the Orthodox synagogue five blocks away.  I can even do a five block walk twice, and I am desperate for socialization, so I am going both tonight and tomorrow.  I hope it's a nice place.

The holiday of Shavuot is coming up in just nine days.  Shavuot is when we celebrate the giving of the Torah at Mount Sinai.  I really doubt I'll be "well" by then, which is a shame because I want to hear the Ten Commandments in "my" synagogue.  If I can get there just one day, I am going the first day of the holiday, and attending services at the Orthodox synagogue the previous day (Sabbath) and the next day (second day holiday).  If I am still hurting this much, I will go to the Orthodox synagogue all three days.  I prayed with an Orthodox congregation my entire last semester in college, and on and off before that; I can do it again in a pinch.

At least for the first few times I attend that congregation, I am tucking in my tzitziot (holy fringes).  A woman in a kippah, especially a gigantic kippah such as I wear on Friday and holiday nights and am wearing right now, is shocking enough; I don't need to shock people anymore than I can help.

Back to the pain really doesn't help that my doctor is on vacation this week.  Don't think for a second I haven't considered calling for the on-call and making this an emergency; I have, because it's that bad.  Two things are stopping me.  Number one, I don't think there's anything a doctor can do for me short term.  The one time I did ask for the on-call, I was told to take extra medication and see if it helped, and to schedule more Ketamine.  Well the extra medication is not helping, and I can't schedule more Ketamine until I can speak to my doctor next week.

The other thing stopping me is whom I might get when I call.  There are two doctors in the practice other than my doctor.  I have nothing against one; he's just not the doctor I have come to trust.  The other one, however, is arrogant and condescending, and it almost literally makes me feel worse just to deal with him.

Depending on how fast my doctor can help me, I'm seriously considering getting a drastic haircut.  That would be sad, because I love the look of long hair; however, it's not worth the pain it puts me in.  I've lost enough weight now that I can pull off short hair.  If I did this, I would get my hair shortened to just one or two inches below my chin.  I haven't had hair that short in years, but again, we're trying to minimize pain.

No Reece's Rainbow kid today.  I need to focus on me.

Thursday, June 2, 2016

My "Jacob" Turns Six

I'm in more pain than I've been in since forever (I'll blog about that a different day), so this post is going to be short, without pictures, because that's all I can manage.  I missed doing it yesterday, however, and wanted to do it before we got farther into the month.

My "Jacob," the little boy listed on Reece's Rainbow whom I've been "praying home" for over three years now, turns six this month.  I don't know the exact day, and I probably couldn't share it if I did, but his description lists him as being born in June, 2010.

Six.  Years.  Old.  My "Jacob," whose pictures still show a two-year-old, maybe even a one-year-old, is turning SIX.  Can you take a minute to offer birthday prayers and wishes for him? Pray and wish that he is safe.  Pray and wish that he is not hungry.  Pray and wish that someone loves him and nurtures him.  I love him from afar, and my next charity donation will go to him.  That's not enough.  It's never enough.

Let's pray him home.

Friday, May 20, 2016

A Week and a Day

In exactly one week and one day will come the three year mark of my being "Jacob's" Prayer Warrior.  He is the child on Reece's Rainbow for whom I have prayed longest.  I had "Isabella" for a matter of weeks, "Grady" for a matter of months, and "Rheann" for abotu a year and a half.  I feel very attached to "Jacob" because I've had him for so long.

"Jacob" is turning six in June.  His chances for adoption are against him.  He is older.  He is a boy.  He is disabled.  His pictures are not cute, and his description is not encouraging.  Despite all this, I have faith that one day--hopefully soon--a family will come for him.

"I believe, with perfect faith, in the coming of the Messiah.  And even though he be delayed, with all this, I will wait for him."  One day, when the Messiah comes but hopefully before, my "Jacob" will have a family.

I end this post with whispered prayers for "Jacob," and rather than with pictures of an Aging-Out child, "Jacob's" pictures will conclude this post.

JacobJacob sm

Thursday, May 12, 2016

Yom HaZikaron and Yom HaAtzMa'ut 2016

I got the dates when Yom HaZikaron and Yom HaAtzMa'ut are observed this year wrong.  I had the correct dates, but because Yom HaAtzma'ut would fall on a Friday, everything is backed up a day so nobody is frolicking on into the Sabbath.   So I missed wearing the special kippah yesterday...but I still have my chance to wear blue and white and recite "Hallel" today.  If the weather is as warm as it's been recently (short sleeve weather), I am going to wear my royal blue stretchy skirt and a puffed sleeve blouse in navy and white.  I will top the outfit off with jewelry and my special kippah clips, and wear my royal blue suede kippah, which matches the skirt perfectly.  If the weather is cooler than that, I will wear the same outfit, except I will substitute a denim button down for the blouse and add black tights.

It's hard for me to get excited about these two days because I feel very little connection to Israel.  I don't want to say no connection because I went there and enjoyed myself, but certainly very little connection.  On Yom HaZikaron I feel nothing at all.  On Yom HaAtzMa'ut I feel more connected, probably because wearing blue and white and saying "Hallel" are such strong customs, whereas I made up the one about wearing the special kippah.

And here is this post's Reece's Rainbow child! A girl this time, this is "WINNIE," again from my "Jacob's" country.  The picture shows her at age eight, in a new coat.  Her special need is MILD HUMPBACK; she ages out in DECEMBER.

Sunday, May 8, 2016

Good News and Bad News

--The Good News: I have reached a milestone.  Last night, I finally used up the last sheet of the five-color cardstock I got for my letters to God.  The beautiful stationery I ordered in February is unwrapped and in the back pocket of my "prayer portfolio", ready for use.  I intend to start using it today.  At my current letter rate (one per day), this stationery should last me just a little under three months, which puts me picking out and ordering whatever I get next in early August.  I think I will be very satisfied using this stationery for that long; it's absolutely gorgeous.  So that you all don't have to scroll back through the blog to find the entry with the picture, I will describe the paper for you.  It is pinkish-purple in color with a beautiful flower (an Easter lily, to be specific, which I only found out was a Christian symbol after I ordered the stationery...and I'm not about to waste 80 sheets of paper just for that.  I will absolutely use it anyway.)  in the upper left-hand corner.  The flower looks handpainted; I know it isn't, but I adore the look.  For an affordable price, I have something special for my letters to should last me a long time, too, which is nice.

--The Bad News: The very first Reece's Rainbow "Aging-Out" child whose picture I ever posted here in an effort to find her a home...has aged out.  So have several others I posted here, actually, and I feel a twinge of pain in my heart for each one because s/he becomes special to me when I post his/her picture, but this girl is even more special than that because she was the first.  Her name on Reece's Rainbow (not her real name) was "Veronica," and I think I chose her because she has brown hair and brown eyes, just like me.  Her only special need was "mild cerebral palsy," so mild that in the pictures she was standing up unsupported, and she was described as able to walk.  She could have made such a wonderful daughter to someone if they would just overlook her age (yes, I understand it can be scary to adopt a fifteen-year-old, but still, someone has to do it)...and now she's gone, probably to a mental institution.  I've talked about Eastern European mental institutions here before, and this post is not the place to do so again for various reasons (among other reasons, I literally get sick to my stomach and have trouble breathing just thinking about those places, let alone writing about them, and there are limits to my bravery), but suffice to say they are NOT good places, and it  literally hurts me to think of "Veronica" there.

--What's coming up in the next few days? Today and tomorrow are Rosh Hodesh, the start of a new Hebrew month, specifically the month of Iyyar.  We celebrate by adding extra prayers tacked on to our morning prayers: a series of psalms and praises known as "Hallel" and an additional central standing prayer known as "Musaf."  I also celebrate by wearing a ladies' tallit katan, jewelry, and, if  possible, my special kippah clips.  (It's not always possible; for instance, right now I am wearing the kippah Sami recently made me, and it is too thick for those clips...they simply will not open far enough.)  I also have to check with my father; I'm not sure one is allowed to do laundry on Rosh Hodesh.  I usually do my two loads of laundry Monday and Tuesday...this week they might get bumped to Tuesday and Wednesday, or even Tuesday and Thursday.

--Wednesday night through Thursday is Israel's Memorial Day, Yom HaZikaron.  Israelis take their Memorial Day much more seriously than we take ours; Yom HaZikaron services usually leave me with tears streaming down my face.  For that reason, I don't plan to go this year; I just don't want to embarrass myself.  I will, however, wear the black kippah I save for such occasions.

--Thursday night through Friday is Yom HaAtzMa'ut, Israel's Independence Day, and the mood instantly changes to one of joy and dancing.  On Yom HaAtzMa'ut, we wear blue and white clothing to match Israel's flag; I don't want to get all-out dressed up, so I will probably wear a denim skirt or my royal blue stretchy skirt, with my blue-and-white Sabbath blouse.  Once again, I will wear a ladies' tallit katan, jewelry, and my special bobby pins to pin my kippah in place.  Attitudes over prayer on Yom HaAtzMa'ut divide.  Orthodox Jews do not add anything extra; Conservative Jews (including me) see the existence of the State of Israel as evidence of God's miracles in modern times, and add Hallel just as it is added on Biblical holidays.

--So there you have it! A very long post with good news, bad news, and an overview of a very eventful Jewish week.  I will probably post on Yom HaZikaron, and almost definitely on Yom HaAtzMa'ut.  Enjoy!

--Now, a Reece's Rainbow Aging-Out child.  Even as some I have posted age out, I can never stop this project, because once in a while, a child I post finds a home, and I can never be absolutely sure that they would have if I hadn't posted.  Today's child is "BRANDON," diagnosed with DOWN SYNDROME, and aging out THIS JULY.


About Me

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I am a bipolar, Jewish young adult (had my Hebrew birthday, the one I count, and turned 23 this past January) who also suffers from Reflex Sympathetic Dystrophy. I love life and I live for my best friends: they are my purpose and my reason for trying so hard. I remain passionately devoted to those I love; I will not let my disorders make me totally self-centered. I like to read, write, and sew. My Rabbinical school plans did not work out, and I am now hoping to go into the field of Early Childhood Education. Please note: I am currently maintaining only Carried in His Hands. Enjoy!