Tuesday, December 20, 2011

Very superstitious..

Today, during a session with our wonderful school team, something was pointed out to me:  "Boy, Sydney sure is a kid that is really into routine, isn't she?  Is Madi that way too?"
Hmm.. yep.  They both are.  And you know what?  I did a bit of thinking this evening and have come to the conclusion that they get it from me.  And I, despite my very best intentions at just being an "on-demand' kind of mom, have become a Scheduler.  Even worse, I am a Superstitious Scheduler.
Before my children got sick, I did schedule things here and there, but for the most part I kind of just let them determine what they needed and when.  Then I got thrown headlong into the cardiac unit of Children's Minneapolis and skidded across the first of many visits there.  When I was able to pick myself up and dust myself off, I latched onto the first coping mechanism that came my way: something in my brain just clicked somewhere and decided "You. Must. Write. Everything. Down."  So I did.
I find it oddly comforting, writing.  It doesn't really matter too much what it is either.  It started with medication lists then progressed to vital signs, liquid input/output, calorie counting, and the like.  I have to say that it has come in handy more than once-being able to quickly spout off the days "stats" faster than any nurse can read them off of  a computer screen.  Now that we are past the transplant days-that seemed so long ago and now are quite a blur-I can look back to my oversized calendar pages and see exactly where Madi was at on any given day.  I think it makes me appreciate how very far she has come that much more.
Being a mom of kids with medical needs has changed me in a lot of ways.  I never would have anticipated, though, the level of superstition that has come over me.  It's like I slip into my "rituals" without even realizing that I am doing them anymore.  For instance: if we have to go to the Mayo Clinic, I have to have my house totally clean before we leave.  Just in case, for some strange and unexpected reason, we would have to be admitted.  When Madi first got sick, my mom stopped by my house for something and had to clean up waffle batter that had been sitting out since the ambulance came and took Madi to the hospital a few days before.  I hear it wasn't pretty.  Also, the night before we go to Mayo, I have to take out everyone's clothes and lay them out-in certain places-and then reorganize my diaper bag and medicine bag for the twentieth time.  Following that, I always write a Post-It note with things that couldn't be packed ahead of time on it.  Like meds that are in the fridge.  Cause, you know, I might forget my kids' heart meds.  Pssh.  I also absolutely refuse to make solid plans that are for after the date of a Mayo Clinic appointment.  Again just in case we were to get unexpectedly admitted.  Go ahead, shake your head.  I am too.
But cut me a little slack here.  It's these small (if not slightly obsessive) "rituals" that get me through what can sometimes be brain-deteriorating feelings of helplessness.  Don't judge this Superstitious Scheduler.  It's not like I have a voodoo doll.

Wednesday, December 14, 2011

Dear Donor Family: A Christmas letter

Dear Donor Family:

There will never be a Christmas gift that will ever touch what you have given us.
I cannot imagine the strength and unselfishness that it took to make such a brave decision in the face of losing your child.  A child that was ten months old, taken from you so senselessly.  But you looked past your pain somehow.  Maybe it was God that helped you to make this decision.  Maybe it was something you always believed in.  Either way, you decided to give another person's child (or children) the chance to live.  To be a child.  To carry on.
Today, my daughter is in school.  She learns and grows.  She is pink and aglow with life.  You made this happen.  You took my baby from the brink of death, and made her into who she is today.
I know that there are no words or gestures that will take away the pain you must be feeling.  The ache of losing a child is something that never leaves a parent, and while I do not know how you are feeling, I can respect it.  The enormity of it.  The finality of it.  The longing.  I wish that this never happened to you.  To any parent, for that matter. 
I so hope someday to meet you.  To put my arms around you and hug you with every fiber of my being.  To hear about your child and see photos.  To place your ear to Madi's chest so that you can hear this beautiful, strong heart that saved her life.  To let you know that your child lives on in our child, and that we will do everything in our power to treasure, to safeguard, and to honor this precious heart and the meaning behind how it came to be Madi's.
Our family will never need an angel atop our Christmas tree.  We have a guardian angel watching over Madi whose heart beats strong and sure in her chest.  There can be no greater gift than that.

Tuesday, December 6, 2011

Oh, Christmas Tree!

Some people's Christmas trees look like they could be in an issue of Martha Stewart Living magazine.  They are beautifully coordinated, with bows and bells and globes that all go with a certain color scheme.  The ornaments are placed just so, with the perfect amount of greenery peeking out between each one. 

Not my tree!  I have to say, even though others' trees are absolutely gorgeous, I like mine and my mom's the best.  Why?  Because they are full of memories.  Each ornament has a story to tell, and it adds to the experience of the tree-decking to be able to recall all the details behind each decoration.  My husband likes to give me a hard time because of a few "infamous" ornaments made by yours truly.  Two of them are miscellaneous scraps of wood slapped together with glue and doused in glitter.  These I made in preschool.  The one that tends to bring the biggest amount of laughs, though, is my Virgin Mary ornament.  I made that beauty in Sunday school when I was very young.  It's a simple paper cutout of Mary with a hole punched at the top, strung with some old yarn.  The image of Mary was one that we colored with our crayons.  For some odd reason, I chose to color her eyes red.  Hmm.. Either Mary had a serious case of pink eye or she was possessed.  At least that's what my hubby says.  I just laugh with all of the rest of them, because I am thankful.  To some, these little scraps may not be worth saving, but to my mom they were bits of undeniable treasure.  I am so glad that she had the love and warmth to savor them, and the foresight to hold onto them so that I could fully appreciate them once I had my own tree.
Our Christmas tree is chock full of ornaments.  But still, we continue to get them.  They commemorate so many things.. there are the two clay pregnant ladies for the two Christmases that I spent with babies in my belly.  The one that is in honor of our very first home.  One from the first year Noel & I were together, and one for the year that we got married.  Our cat, Sheena, has several ornaments on the tree-many featuring her picture-and Noel's dog Harley, who is gone now, has a special star of his own.  Each year we get Madi & Sydney each a new ornament to add to their collection. Madi & Sydney help us to decorate the tree, of course, which often results in clusters of ornaments in weird places-piled on top of branches, flung into the center of the tree, laying underneath it, or sometimes they turn up in a toybox a few days later.  My "Baby's First Christmas" ornament, shaped like a little pillow, takes its place of pride near the top of the tree every year, so that the cat doesn't mistake it for a toy. 
Then we sit back and enjoy it.  No popcorn or cranberry garlands drape my tree.  I don't have matching sets of colored balls, nor do I have a plethora of beautiful sparkling bows.  But my tree?  Every year it has many a story to tell.  It's one of the best parts of the holiday season, and one that I cherish every year.

Monday, December 5, 2011

Welcome To Holland, Part 2

 If you are a special needs parent, like me, you have probably heard of the beautiful essay entitled "Welcome To Holland".  If you haven't, you can read it here.

 Anyway, this morning a friend on Facebook, Kristi Pena-read her son CJ's miraculous story in this previous post from my blog-posted this follow-up to that much-beloved "Welcome To Holland."  Like its predecessor, it's beautiful, well-written, and resonates so much with what my life is like.  Though I haven't been "in Holland" for over a decade like this writer, it's been awhile now since my first foray into this world, and I would like to think that through the stress, the fear, the anger, I have grown.  I hope you enjoy this as much as I do.

Welcome to Holland (Part 2)" by Anonymous
I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.
I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger—the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay.

Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land.

I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.
I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?
Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift.

I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its' tulips, windmills and Rembrandts.
I have come to love Holland and call it Home.
I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.