Monday....

I'm not a person who hates Monday.  I like my job, I like my co-workers, I like my patients.  It's a blessing to be able to say all of that, and I'm intensely grateful for that blessing.  I'll watch the inauguration this evening, but the little snippets I've seen make me wish I could attend such an event in person.  Where else in the world is such power handed over on such a regular basis without the threat of civil war?  I'm grateful for my country.

Babygirl has the day off, so I can be grateful that she isn't missing school today.  Her weekend wasn't terrible, her headaches a bit milder and a bit later in the day than we've been seeing.  Time will tell how well the medication change is working.  I'm grateful (although it might not always seem so!) for her doctors and her medical care.

I have no evening commitments, so it's dinner with family tonight.  I'm grateful for enough food, a warm house, laughter and love. 

Despite all we've dealt with, and the road Babygirl walks, we do give thanks for all that is good in our lives.  Like many people I know, we've started writing down the good things that happen on pieces of paper and keeping them in a jar for review at the end of the year.  It will be an interesting little pile of paper, I'm sure! 

DeeDee

Week Eighty-three - All You Need is Pie.....

I love Thanksgiving.  Sure, there's some work involved, but you can do most of it in your pajamas (one of our foster kids used to call them "pajanamas").  Citygirl is here, so Babygirl has somebody to hang out with, which has cheered her up amazingly.  Which, it goes without saying, cheers me as well.

There are many things I love about Thanksgiving.  Family moments, the sharing of gratitude, good food and the general atmosphere of low-stress happiness.  And why is everybody happy?  Pie.

All you really ever need to make somebody happy is pie.  Think about it.  Is it possible to be totally miserable when the air is full of the smell of cooking apples and cinnamon?  Add the clove-and-ginger scent of a good pumpkin pie, the sight of meringue, the rich color of blueberries.  How can anyone resist a smile?  Put some real whipped cream on top of that - wow. 

Yes, I know that the smell of roasting turkey is amazing.  I know that good stuffing covered in gravy is SO good when it crowds in next to a sweet potato casserole.  But we all know that the whole time we are eating all that deliciousness, we are still looking forward to pie.

So when I accidentally doubled the pumpkin pie filling recipe and discovered I had enough for FOUR instead of two, making it possible for me to make two fresh pies for leftover night?  It was like an extra helping of free happiness.

So happy Thanksgiving to all my friends and family.  I wish you peace, gratitude, good health - and pie.

DeeDee

The Value of a Smile....

Babygirl came down this morning without sunglasses, and gave me a hug and a smile.  Her head still hurts, it always does these days, but it was to a tolerable level.  There was no need to put the big black X on the headache calendar we are keeping for the neurologist. 

I haven't seen that smile in two weeks. 

I'm grateful. 

DeeDee

Giving Thanks.....

The weekend before Thanksgiving has its own concerns, unique to itself.  How many people are coming?  Do we have enough chairs?  Who is bringing what, and when are we going to sit down and eat?

I think we have only fourteen this year, but I am notoriously unable to count.  No matter that we count twice, and then a third time, and then set the table with one extra place setting, we are always one short.  I have no idea at all why, or how that's even possible, but it happens every single year.

Our guests range in age from under one to over 90. There is always homemade music, homemade cranberry sauce, and homemade pie.  There are usually two turkeys (one smoked and one roasted) and one ham (Curlygirl HATES turkey).  Dinner begins with a round of thankfulness, each of us telling what we are most thankful for.

One memorable Thanksgiving my Aunt Mary (rest her soul) silenced the room by declaring that there wasn't one single thing she was thankful for!  In rebuttal, we now have a sign hanging in the dining room that says, "There is always, always, ALWAYS something to be thankful for!"

When I began contemplating what I am thankful for I had an 'Aunt Mary' moment.  After all, Babygirl is suffering daily and we don't know why.  And I have nothing to offer her to make it better - nothing at all!  My level of frustration with this is intensely high. 

But this intense level of frustration should in no way make me so ungrateful. 

So here is the start of list of things I am grateful for:

Babygirl has a kidney that works, and isn't on dialysis anymore.
Financially we are much more stable than we were at this time last year.
My family is wonderful, supportive and generous.
(My family includes a large number of people I'm not even related to!)
I have a home, food, clothes, and a job.
I live in a great neighborhood, with great neighbors.
I love turkey, and I'm going to get to eat it for a week.

Eleven more days until the neurology workup.  I'm grateful that it's scheduled.

DeeDee

Week Seventy - Simplify.....

Babygirl's switch from Prograf (tacrolimus) to Rapamune has simplified her life a bit.  She still has to take medications twice daily, but instead of eight tacrolimus capsules twice daily, Rapamune is five pills once a day, a net decrease of 11 pills/day.  Between that, and the decreasing doses of prednisone, the elimination of her nightly Zantac and a decrease in her Cellcept (mycophenylate) dose from three to two daily, her pill sorter seems almost empty!

Eleven pills in the morning, down from nineteen post-transplant. Five pills in the evening, down from sixteen.  And she's still drinking two teaspoons of the yellow-tempera-paint-like mepron daily.

I have to admit that life has gotten far from 'normal' if you are thinking, "Hey, my kid is ONLY taking sixteen pills a day!"  But I think what makes it seem easier is not the number but the frequency.  This time last year we were dealing with our first week of dialysis, our first post-op recovery, and weekly injections.  The pills then seemed overwhelming, and she was 'only' on ten pills a day then, but she had to remember to take some with every single meal and snack.  Four or more times per day versus two?  Gimme two, regardless of the pill count.

Studies show that compliance drops dramatically each time you raise the number of pill doses per day.  Almost no one is truly compliant with a four dose a day antibiotic, but most people can manage once daily just fine.  Early AIDS therapies required people to take medication every FOUR hours - six times daily!  That meant alarms, midnight wake ups, and so on, and very few people could manage. 

I am very glad that we never had to try for three daily doses of her medications post transplant.  I can't imagine that we could comply, even with a full understanding of the price of non-compliance!  I'm very, very glad that things are getting less rather than more complicated. 

Of all the many things I have to be grateful for, this was what was in my heart today.  After all, it was pill-sorting day.

DeeDee

Six Months Ago.....

We passed the six-month mark with the new kidney more than a week ago.  I mean it when I say 'we'.  Babygirl bears the scars on her body, but Hubby and I carry our own scars. 

Each time a major life trauma strikes you, it narrows your safety zone.  Each of us has said, "That will NEVER happen to me because...." and listed in our private hearts all the reasons why the afflicted are actually to blame for their afflictions.  The homeless could get work.  The mentally ill could take their meds.  MY kids ALWAYS wear their seat belts and would NEVER get into a car with an impaired driver.  MY daughters took their prenatal vitamins, breastfed their babies, and are stay-at-home moms, so nothing bad will ever, EVER happen to my grandkids.

Each of us is guilty, in the secret recesses of our minds, of the kind of Magical thinking that makes us sure that we will not suffer.  And each of us knows, even deeper, that we are lying to ourselves.  As we get older and repetitive trauma strips away our super powers, we understand more, and judge less.  And we adjust our expectations accordingly.  I AM going to have arthritis.  I'm going to take these blood pressure pills for the rest of my life.  Getting up off the floor is never going to be simple or graceful again.

Having your child diagnosed with a life-threatening illness digs much, much deeper.  There's no protection here.  All our imaginary armour fails, and there is no one to blame, no excuse that makes that child's suffering palatable to us.  I see children at CHOP who are undergoing chemotherapy, who are missing limbs from birth, who are hooked to feeding systems, IV poles, pacemakers and dialysis machines, and no one is responsible for their pain.  It just IS. Knowing that the treatments are all, in the end, delaying tactics (with more or less success depending of factors wholly outside of our control) adds uncertainty to unending uncertainty.

I have been deliberately avoiding keeping track of the milestone days surrounding the transplant.  If I did, those milestones could easily overshadow other very important things - Squeaker's birthday, Babygirl's official adoption by Hubby, sunny spring mornings, summer sunsets, mission work.  Keeping track feels a little like some kind of scorekeeping, letting me fall back into the realm of Magic (after all if the kidney makes it through this first year we are good to go, right?). But six months seems momentous.  It hardly seems possible that a little more than six months ago we were still dealing with dialysis, nightly pain, daily exhaustion. 

When I think about now, compared to then, daily life is SO much better.  Babygirl sleeps (when she isn't having all-night-up sleepovers with friends!).  Babygirl is energetic, happy, gregarious and carefree.  She's looking forward to restarting school, getting new clothes, and a new season of Glee.

My imagination is somewhat poorer for all of the experiences of the last 16 months.  I try not to let my mind run riot through the valley of the shadow, I do.  But I'm having trouble rebuilding my Magically safe world. 

No great loss. It never existed in reality. 

It's been a long road to recovery.  It's been a winding, twisted journey to Reality.  Nothing has changed but the view.  Learning to appreciate real life instead of the fantasy has benefits as well as risks.  I really don't want to live fake.  But that means I need to look, really LOOK, at life.  It's scary. It's beautiful.  It's amazing. 

Like Babygirl herself.

DeeDee

Mission Trip, Day Seven.....

Friday, July 20th

Final day of work.  I cannot now remember what triggered this journal entry:

"How can I trust You again when you let my baby get so sick?"

There is not now, nor will there ever be, enough of an explanation for me.  In the deep bedrock of my soul I know that the answer simply does not matter.  I also know that the answer may not actually exist, any more than there is a sensible answer to "Is red round, or square?"  For the Great Eternal, who stands outside of time, the answer is irrelevant.  Outside of time, she is not sick, and her sickness will represent the briefest imaginable portion of her eternal life. Outside of time, my memory of her suffering and losses will only stand in contrast to what she REALLY is, for "it does not yet appear what we shall be, but we know that when he shall appear, we shall be like Him." 

It's NOT enough.  But it will have to do.  We have work to finish. I manage to cry in private this time.

Heading to the home that we now all view as "ours," we map out the day:  Young people, dig the trench.  We'll figure out where.  Sabrina has a board to install.  Somehow yesterday she lost track of her skill with the drill, but by the end of the day, she's gonna have it or die trying.  Adults, finish the danged backer board and start the tile.  There is no way this can all be accomplished today, but we'll do all we can.

I took the younger folk (minus Sabrina, who was busy with a drill LOL), and we scoped out the land.  Where does the water come from?  And where would a trench successfully drain from and to?  While we are staking out a potential pathway, a neighbor comes and tells us that it is partly on his property.  We mark what he says is the line, and shift the trench route a couple of feet.  Our homeowner returns and disputes the line, but we convince him that it doesn't matter - the trench will do very well in it's new location.  ASP staff arrive, and concur with the location of the trench and we give the go-ahead for the digging.

The floor drags on.  The kids FINISH the trench.  There are only THREE of them digging, and it is 18 inches deep, 18 inches wide, and about 20 yards long.  Sabrina installs her board and moves on to framing a window, refusing to let anyone else in on the job.  The rest go to clean the van and sort tools into their owners' toolboxes.  They all finish, and by this time we have laid the first four rows of tile, starting with 4 in the middle and working out concentrically. 

At this point the home owner's daughter joins us.  She sits in the middle, handing out tiles, managing tools:  "I need a knife!"  "Got it!"  "Pencil?"  "Here you go!"  We are all so sticky from tile glue that we don't need to actually pick anything up, just slap a hand on it and it comes right along!  Taking off a pair of scissors requires manually pulling fingers back apart.  There is much, much much laughter.

It's time to leave, but there are eight people in that small room absolutely determined to finish even if it means no dinner.

And by some miracle, we do.  We did everything on the list except painting a room (it was too full of the things from the room we just finished!) AND dug the trench.  We laugh.  We hug.  We get stuck together.  We'd clap, but we can only do one each. 

Then it's time to leave them, Moody and Molly and Linda.  It's like leaving family behind. They thank us for what we've done.  But more than that, we thank THEM for letting us do it.  We all feel like we've gotten so much more than we gave.

Back at the center, we make it (barely) in time to eat - many teams, like ours, stayed to go the distance, so they delayed dinner.

After dinner is the final EG.  The one where we all share our "God Moments," the one most special moment of the week.  Eighty-two people listen to each other's stories.  No one is bored.  No one wants to leave.  I say that my God Moment was watching Ryan become a leader.  And it's true - the transformation from boy to man has been a gift to observe.  And I can say it without crying.

But my personal God Moments were all in the tears.  God reached out His hands to me each time a teammate held me through the struggle, each time a total stranger from a far-away church hugged me, each time a kind word landed in my Warm Fuzzy bag, and especially in the moment when I realized Babygirl's name was up on the prayer request board, and I didn't put it there.

It is true that God has no hand but our hands.  I went to lend my hands to God for a week. And I honestly went to escape my life. But I received love and support and relief from God through the hands of others.

Nothing has changed.  Not God, not Babygirl, not life.  Usually we return from these trips exhausted. But I feel lighter, rested.  Relieved.  Thankful.

DeeDee

She Makes Me Ashamed.....

Since the last few posts have all been me-me-me-me, I thought it was time to tell people how Babygirl is doing.  Not the kidney, not her mom, Babygirl.

Overall, she's doing well.  She's upset because she misses so much school, and always happy to return.  We play games together at night, and it's gotten to where I don't need to 'let' her win. She's becoming witty but without the teenage edge to take away from  her overall sweetness.  She's watched every episode of Glee, (maybe twice) and has become a fan of a much broader range of music, which makes her willing to switch stations to oldies and country as well as pop.  She's begun doing extra chores without being asked.  I love it when I find the dishwasher not only unloaded but reloaded.

Last Friday as we were driving home from the hospital, I said to her, "You must be getting tired of all of this."

She replied, "But you meet so many new people in the hospital!"

She makes me ashamed of myself.  But I'm always proud to be her mom.

DeeDee

Random Acts of Kindness.....

Throughout our journey we have received many, many kindnesses, and I plan to dedicate a post to that theme later. 

But for now, I'd like to direct your attention to this blog:  http://www.366randomacts.org/

This is an amazing story of what one person can do.

DeeDee