Zebra's Child

Living With Common Variable Immune Deficiency and It's Autoimmune Friends

Tag: CVID: Joy Is Still Possible

Ordinary Beauty

Flowers and Light

                                Flowers and Light          ©Zebra’s Child

I’m still doing not much other than sleeping, which is exactly what my body needs. I can’t always sleep when I most need to because my sleep cycle is one more part of my body that doesn’t always function quite the way it should. So I am extremely grateful that Wednesday/Thursday’s infusions have balanced that out a little and has enabled me to get some much needed rest. Such is the miracle of adequate gamma globulin levels that the bottom of my left foot is already completely healed, and my right foot is doing it’s best to heal as well. This right foot is a little trickier because every time I walk on it the split opens up again, so it’s going to take a little longer. But with the infusion of gamma globulin, I know it will indeed heal with time.

The weather is a little cooler today, which is a welcome relief. The sinking sun this time of day is shining through leaves and flowers, transforming their ordinary beauty into incandescent light. All will be well.

Weekend Whimsy: Ralf

Ralf the Frog         ©Zebra's Child

                                                    Ralf the Frog                       ©Zebra’s Child

HI. My name is Ralf. I’m a frog. Obviously. Just in case you hadn’t noticed, and all that. Thought I should introduce myself before I told you guys to have a Grrrrrrreat Weekend. If you find any flies out and about, just pass them on to me, please. Thanks. Very much appreciated.

A Profusion of Beauty

A Profusion of Blossoms After the Rain

                    A Profusion of Blossoms After the Rain                                                                                         ©Zebra’s Child

Improbable Hope

Improbable beauty

Improbable beauty

There are no flowers like this anywhere in the neighborhood. Yet somehow the winds brought seeds of beauty, revealing hope in improbable places.

Remember to Tune in to the Spring Concert 2015!

And then let me know what you think. Did you like it? What was your favorite piece of music? What sort of music do you like?

We’ve got little something for everyone, so please join us live @ 5:00 PM, PDT!

http://allsaints-pas.org then click on Live Stream.

Enjoy. 🙂

Announcement: Spring Concert 2015 Live Streamed!!!!!

Hi Everyone,

This year for the first time, our Spring Concert is going to be Live Streamed, AND IT IS GOING TO BE FANTASTIC!!!! It will be streamed on June 7, 2015 @ 5:00 PM (17:00) Pacific Daylight Time (PDT). I know this will be in the middle of the night for some of you, but this concert will not be held in a buffer, so if you want to hear some fantastic music, tune in. And let me know how you like it.

  1. Go to this website: http://allsaints-pas.org
  2. Click on Live Stream at the top
  3. Do this about 5 minutes before the concert starts so that you have the screen up and ready for action.
  4. Get ready to have your socks knocked off! 😉

Nous Sommes Arrives en France!

My husband and I arrived in France last Friday. This is a trip that we never thought we would be able to do. We had dreamed of it whilst raising the kids, and helping them get through college, but then we both got ill, in different ways, and, well, we never thought we would be well enough to travel this far. We tried to take a trip to England last summer to see family, but last minute illnesses prevented that, so we didn’t dare count on this trip too much. But once we were in the air, and feeling well, we thought, “Oh my goodness, maybe this is really happening!

So here we are in glorious Paris, thrilled, and so happy to be here that everything seems truly amazing. My husband fell in love with France, and Paris especially, when he was a boy of 8 and 9 years old living here, and has wanted to come back ever since. And we are actually here, drinking it in, walking, doing a little each day (some days very little), and eating and sleeping. Especially eating and sleeping.

I have some photos, but I haven’t finished deleting the not-very-good-ones, and since I have been lazy about deleting photos in general, I’m running out of room on my iCloud storage. Thus getting pictures from my camera onto my computer without buying more storage (which I’m trying to avoid doing) is a little tricky, and so far I have been so tired that I don’t trust my judgement on which photos to delete.

I tried to upload photo from my phone for you guys, since that is synced, but the free wifi is so slow that it hadn’t loaded after 10 minutes. But here is a simple post to let you all know that I am here, and that I hope I will be able to post some photos before I get back to the States. Right now, however, I need more sleep. So I’m heading to bed.

Bon Nûit!

Dancing Inside

I phoned my younger daughter five years ago and asked her, “Do you ever think something is so beautiful that the thought goes through your head, ‘If I were to die right now in the midst of such beauty, it would be ok.’?”

I had passed the audition for choir and was heady with the music we were singing.  The two major pieces we were rehearsing were Vivaldi’s Gloria and one of Mozart’s masses.  They were both pieces I knew, but had thought I would never have the opportunity to perform.  It was like I was dancing inside all the time, I was so excited.  When I sang, especially those pieces, my voice blending with all the others, I felt as though the beauty was palpable.  I didn’t know if anyone else ever felt that way.

My daughter thought for a long minute.  Then, “I wouldn’t use those words, but yes. When I am working in the lab, what I am always looking for is truth.  And when I get good data, that’s what I have found: truth.  And that is the most incredible feeling on earth.”

It is hard to describe the part singing plays in my life.  It grounds me. It heals me.  It helps me process grief, and give me deep joy.  I feel whole when I sing.  One of my favorite days of the year is our fall Saturday rehearsal/retreat where we rehearse from 8am – 3:30pm.  (With breaks of course.)  This last fall, my energy only allowed me to stay 2 hours, with part of that time lying down.  Even so, when I got home, my husband said, “I love it when you go the fall rehearsal!”  I asked him why, and his response was, “You are always so happy when you come home.”

This year in choir has been a struggle.  In the fall, I could only stay at rehearsal for 30 minutes.  I slowly built up my rehearsal time to 2 hours.  But it is the one thing I have refused to give up.  I have frequently said over the years that if I couldn’t sing, I think I would die.  Part of my concept of heaven is that I will be able to sing as much as I want and have the technique to sing anything I want, (The role of Suzanna in Rosini’s opera The Barber of Seville comes to mind,) and that God will teach me how to play the cello.  But I’d prefer for that not to happen just yet.  I am content to feel like I’m in heaven when I’m learning and singing difficult and beautiful music.

Beauty

The psychologists tell us what we already instinctively know: that joy is healing.  For many of us, one way to find joy is through beauty.  As immune deficient people, we have more than the usual need to have beauty in our lives.

My husband and I have lived in this small, beautiful, 100 year old craftsman for almost eight years.  And for many of those years we have wanted two Persian rugs to put at each end of the living room on the hardwood floors.  But my husband and I have had an on-going discussion.  I was quite willing to settle for mass produced rugs.  But every time I brought a sample home, his comment was, “I could probably learn to live with it.”  Even at mass produced prices, I didn’t want to spend money on something he would just put up with.  Especially since he is by far the more visual of the two of us.

Last fall my friend Barbara and I had driven into Pasadena for my big outing of the week and had stumbled on a small Persian rug store. It specializes in liquidations, so the prices were exceedingly reasonable.  I had returned with my husband and we had spent about half an hour in the store when he said, “I need to leave now.  These are too beautiful, and while the prices are reasonable, it is still more than we should spend at the moment.”  He was right.  We left.

The problem is that both of us understand Persian rugs.  We know how they are made, what to look for to determine the quality, and even the traditional way to clean them.  (Take them down to a river, submerge them, and then beat them with a stick.  We will obviously need to find a 21st century equivalent since we have neither a river nor big enough sticks.)

We also both like tribal designs, which are, wouldn’t you know it, the most complicated to weave and therefore more expensive.  But the half hour in the store with him had convinced me.  After all, we had waited over 30 years before we had the opportunity to buy this small craftsman bungalow.  We already felt as though we lived in a work of art.  It was worth waiting awhile longer in order to be able to buy two of these rugs that we both loved.

So for several months I became even stricter with the budget and saved every spare dollar I could, adding the savings to our home improvement/repair fund.  When we returned to the store, the owner was delighted to see us, and he was willing to give us a good price; we were buying two rugs, and were paying in cash.  The truly expensive rugs were out of the question, but we were able to narrow our choices down to four moderately priced rugs, and since we lived in the area, he brought all four out to the house and laid them down one at a time so that we could decide which ones worked the best.  And it became almost immediately obvious.  There were two that were so completely perfect that we knew that we had been right to wait and save.

That was two months ago.  Each morning I go out to the living room and the rugs’ beauty still make me catch my breath.  I sit down in chairs during the day and just drink the rugs in.  I feel like we have two gorgeous pieces of art on our floor that I can look at any time I want to.  They both define the space and make it feel more inviting, more welcoming. More healing.