Miracles.......

My sister-in-law's nephew is autistic.  His disability is severe.  He is unable to speak more than a few words.  He has difficulty with fine motor skills.  He has never been able to make his needs known.  His parents are devoted to him, but have never heard "mama" or "dada" from him.

He attends a special school that specializes in teaching autistic kids.  They've tried, over the years, to teach him, well, anything.  They never give up, never stop trying, never stop innovating.  And last weekend, they found a miracle.

They have been using iPads with the kids, helping them learn how to manipulate a touch screen, familiarizing them with a keypad.  They discovered that if they support Finn's hand, he will purposefully tap keys.  His first message?  "No color."  They replaced the colored keypad program with black and white.  And off they went.  Finn, who cannot talk and appears uninterested in most everything, can READ.  And SPELL. 

Remember how relieved you were when your toddler could finally ASK for something to eat instead of just screaming?  Imagine if you waited 13 years for that moment! Imagine being Finn, and FINALLY finding a way to make people listen to you!

Miracles.  They happen.

DeeDee

One in a Thousand......

I saw my family doctor Thursday morning.  He's not happy about the headaches and wants them controlled (not that I disagree, but I'm doing all I can from this end!).  Everything else except the fifteen pounds I added because of the gabapentin seems okay to him, pending blood work results, of course. 

Because Babygirl is not immune to the chicken pox despite two vaccinations, the transplant team has asked Hubby and me to get shingles shots, so I asked for one, and told him that the team had told me to simply cover any resulting rash (live vaccines.  Sometimes they imitate disease.).

He laughed and said, "What, that's like one in a thousand, right?" 

Yup.  One in a thousand. 

Guess what I have? 

I'll be walking into a clinic full of transplant patients with a silver-dollar-sized patch of blisters on the back of my arm, all oozing varicella virus.  Long sleeves and a gauze wrap should keep it all safe, but JEEZ, really?

DeeDee

Die Fledermaus....

There is nothing quite like a night at the opera, especially if you know nothing at all about opera.  For a music lover I have always been woefully ignorant on the subject.  My hometown was not known for the arts.  Our highschool put on a musical once in a while, and plays frequently, but not opera.  And while our high school chorus teacher did a great job introducing us to classical music, he was an open admirer of Baroque music.  If I learned an opera tune (not counting the theme from "Pippin"), I can't recall.  Bugs Bunny did what he could to remedy the lack, singing "Figaro!" at the top of his lungs in the shower, but it wasn't enough.  So I never have the slightest clue what sort of thing I'll be seeing when I go.  Tragedy?  Comedy?  No idea.

Babygirl, however, is a fan of the opera.  She's a fan of any stage show (almost left the 'e' off of that, and spellcheck would have missed it!).  We were gifted tickets, so we made a night of it.  We drove downtown to discover crowds of people.  We'd forgotten about First Friday, and our theater is in the heart of the arts district.  There were street performers, restaurants were full, and there were a much larger than average number of families with small kids wandering everywhere.  It took us a while to realize that not only was it opera night and First Friday, but the circus is in town.  It was a good thing we went early - parking got tighter and tighter as we wandered around deciding what to eat.

The opera was hysterical.  The music was lively, the cast talented, the costumes lovely.  Many of the people seated near us were so familiar with the music that they were dancing in their seats.  I've never heard such laughter at a classical performance.  It would have been the most fun imaginable, except...

Babygirl and I were both on edge a little.  Migraines trigger so easily!  Both of us were aware of the shrill of the piccolo warming up, the sharp edge of the percussion, the dance of stage lighting on costume glitz.  Each of us knew that anything - or nothing at all - could trigger a headache that would send us both home. 

Migraine is a crap shoot.  You never know when you're going to need to pull the car over.  There is no predicting when you are going to have to choose between suffering the pain of the supermarket lights or leave a basket full of needed shopping behind.  Keeping a Ziploc bag in the bottom of your purse for sudden nausea is normal. 

I had severe headaches Wednesday and Thursday nights.  The week before last I had headaches for six days in a row.  Babygirl has them almost every day.  Making plans more than a few hours ahead is a big risk.  Migraine adds a level of fear to every aspect of life:  Every plan, every hour, every moment.  Is this when it's going to hit this time?

But it makes the good times all the sweeter.  Babygirl and I came out of the opera house laughing and triumphant.  We both made it, we both had a great time, and we both laughed out loud.  A LOT.  She took my hand as we were walking, both of us jabbering about the joys of the evening.  Nearing home, I took a corner rather abruptly, and Babygirl said, "You're going to fast!"  "We didn't die, did we?"

Her reply was profound:  "How do we know we didn't?  For all I know I died when I was born and I just don't know it yet!"  I asked, "If we don't know we're dead then what is the point of dying?"  "I don't know if dying has ANY point."

Amazing thoughts.

DeeDee

PS As best I can remember Bugs Bunny never sang anything from Die Fledermaus.

PPS Even after watching the entire opera, I had to come home and use Google to find out that a fledermaus is a bat.  Shoot me - I'm slow.

Post 500.....

Three years, five hundred posts, fifty-five thousand pageviews. 

A sick kid, a kidney transplant, a dying car, new grandchildren.  Surviving being sandwiched among four generations of family.  Storms, floods, remodeling.  Laundry, housekeeping, vacations.  Special education, opera, making wishes and Paris.  Surgery, sadness, fear and despair.  Hope, happiness, silliness and games. 

Three years is a long time.  It's nearly a quarter of Babygirl's life.  It's almost half of the life she can remember.  Maybe that is why she has adjusted better to it all than I have.  I have vivid memories of 'normal' that she hasn't got, and despite three solid years of experience to the contrary, I keep mentally expecting to wake up and discover that things have gone back.  She's over that.  She might hate some parts of her life as they are, and she still fights daily to feel better, but she doesn't do it expecting or even hoping that things will magically change.  She has more peace about it than I do, or at least it seems that way. 

It is in my nature to fight to change things.  There is always at the back of my mind a plan for making things better, easier, less of a struggle, and there always has been.  From crazy schemes to make my parents like each other better to going to medical school so I could keep working on that cancer cure to caring for the poor and underserved, there has always been an interior script, a narration in my head, something that I see and want to make real.  With Babygirl I've lost the thread of that story.  Truth be told, I've lost the thread of the story for all my kids, but with the older ones it's because they've taken it into their own hands and are making their own lives, which is as it should be.  It feels right.  But it doesn't seem right with Babygirl.  It seems too soon to let her take her life into her own hands and work out her story, but being sick grows a kid up.  She may be 14, and sometimes she's REALLY 14, but the real story is that she's never going to be like any other kid at school.  She's been pushed into maturity.  She's scripting her own life and doesn't need me as co-author.

I started this blog to tell our story.  I hoped if enough people saw it we might get a kidney from a living donor.  I thought that that was the key to "happily ever after."  Now, the blog is my story.  Babygirl is not a child anymore, and she'll tell her own story in due time. 

DeeDee

Early Morning Meetings.....

Thursday is my 'late day' at work. I start seeing patients at ten, and finish at six, giving a handful of patients weekly the opportunity to be seen a little bit 'after hours'.  It's a tough day - lunch happens after I've seen about four people and the afternoon is eternal.  But one thing that makes it more than worthwhile (aside from giving people access to care who might not be able to leave work for it) is that I get a morning to sleep in, handle some household chores, make phone calls.  Those two hours are incredibly productive, or delightfully de-stressing, depending. 

However....

Today I have a mandatory meeting at work at 7:15 AM.  I'll be working from that time until at least 7 PM.

I'm going to go have another cup of coffee.

DeeDee

Strawberries.....

Last evening, Hubby made strawberry shortcake. 

Cooking for Babygirl, given her post-transplant immunosuppression, means that you have to follow different rules.  Strawberries are a no-no don't-touch you-can-NEVER-eat-it food.  Even at their freshest they carry dangerous mold - well, dangerous if you have no functioning immune system.  Making strawberry shortcake, like making a salad, is an act of loving devotion.

Hubby went to the store and looked for containers of strawberries with no visible rot or blemishes.  Sometimes this is simple:  You look at the first four containers, they all look faded, and you walk away.  If you REALLY want strawberries, it takes longer.  I usually reject at least five containers of strawberries before I find even one that passes visual inspection.  It requires a thick skin, since there are usually other people wanting to get into the space you are occupying. And once you have your berries, you have to use them right away.  

The rules are simple:  soap and warm water washes to the outside of any raw product that Babygirl intends to eat, including lettuce.  But grapes, blueberries and strawberries have surfaces or stem holes that can allow germs deeper entry into the fruit, so even that level of clean is considered inadequate. Cut off the tops of the berries, wash with soap and water, and then:  Cook 'em.  This is truly horrible with grapes, and although blueberries and strawberries cook well, it doesn't leave you with the taste of fresh fruit.  So we've figured out how to rapidly blanch strawberries.  It's a compromise.  I'm sure the interior of the fruit doesn't reach germ-killing temperatures, but the surface certainly hits the required "steaming hot" level.  We then rapidly chill them in the freezer and then cut them, add sugar, and Voila!  The process takes a bit of time and patience, two commodities that are in general short supply here.

But.....it is impossible to be unhappy while you are eating strawberry shortcake.  It is one of the happiest foods there is.   I remember, as a child, that once a year in strawberry season my mom served strawberry shortcake for dinner. Not dessert:  Dinner.  What could be happier than THAT? 

Happiness isn't always something that just happens.  Happiness requires dedication, devotion, discipline and an open heart: The ability to look for an excuse for a celebration.  The gift of setting aside stress and being in the moment.  The joy of family.

Life, in the end, is lived moment by moment.  Last night was strawberry shortcake good.

DeeDee

Y4-W1 The Start of the Fourth.....

Three years ago yesterday our world flipped.  It refuses to flip back. 

Today we begin year four.  Babygirl has felt like crap for 2 days.  Thankfully there was no school yesterday, so she only missed today.  At dinner she said something to the effect that her body felt better - an odd way to put it - and that it is a relief to feel that way.

I'm sure it is.  But, ugh.

DeeDee