Saturday, February 22, 2014

Dancing in the Rain: Prologue

“Your daughter is flooding the operating room table with pee”

Those are the most unexpectedly beautiful words of my life.  I cannot remember the exact words my husband used to propose or even the vows he wrote himself and then cried through.  I can remember the elation and atmosphere on the occasions when I got my positive pregnancy test, when they found two hearts beats and when the ultrasound showed one set of girl parts and one set of boy parts.  The joy of those moments I will always remember but the words, the exact phrases, are somehow lost.

But not those beautiful words, delivered to me by my mom while I lay in a hospital bed fighting off nausea from the general anesthetic.   Although I was barely coherent from the pain and medications, the news that my kidney had just saved my 17 month old daughter’s life and enabled her to pee for the first time in 10 months was so exhilarating that those words were etched in my memory, but more significantly on my heart.

Then there are other words I never expected to hear but are now forever engrained in my life’s story.  A series of phrases really:  “an awful MRI,” “never walk, talk” “severely cognitively affected”, “choose to withdraw care”… a set of words that surely could not be being used to describe my precious blond haired smiling one year old son.  Words that surely belong only in nightmares or Lifetime movies but not in my world. These phrases over time became replaced with more palatable but no less emotive ones like “cerebral palsy” and “with a lot of therapies, maybe” But regardless of hard I try to forget them, the terrifying words from the day we found out are there jumping back into my consciousness uninvited and frequently.

A million years ago, or more accurately three, I never would have believed such big words, such unfathomable heartache, such miraculous joy could be a part of my ordinary life. I once had a typical life full of normal experiences headed for an expected future. Until the two tiniest most beautiful and complicated people entered it, far earlier than anticipated and brought with them a storm of the unexpected.  A storm that demolished my carefully constructed ordinary world.  And in its place, something far more beautiful, far more resilient and far more memorable is being built. Out of the rubble of my previous ordinary, extraordinary is being established.

And I realize I have a story to tell.  A story of heartache, and of hope.  A story of defeat, and a story of victory. A story of sadness but more significantly, a story of joy. Max and Addie’s story. Their extraordinary story. 

Thursday, February 20, 2014

Writing My Book

Before I start publishing weekly chapters of my book on here, I thought I'd give a little background on why and how I am writing this book...

I have always loved to write.  When I was in 6th grade, I carried around a turquoise binder full of notebook paper that I was writing my book on!  I would sit on the bus and brainstorm ideas for my captivating novel.  It was a ridiculous little story about a group of friends, of the Babysitters Club genre and definitely lacking in profound truths or brilliant literary prose.  But even back then writing my silly book, I loved to write and use my words to craft a story and paint a picture I had in my head.

When I was in high school, I wrote for the high school newspaper so I went from writing fiction to reporting on events> I wrote about everything from the major world news stories to fashion trends within my high school.  I loved writing for the newspaper! It must be what athletic or musical people feel like when they discover they can belong somewhere with people with shared talents and interests!  Being incredibly uncoordinated and lacking in pitch, I had never really felt good at something other than being a teacher's pet and getting good grades! But writing felt easy for me when it was hard for others and that felt rewarding.  I won UIL competitions for my writing and even got a letter jacket for writing (yes, turns out you can letter in being a nerd!)

With my history of loving writing, the idea of blogging about Max and Addie ended up seeming like a great fit.  It did take me a long time to be ready for it though.  I did not start the blog until over a month after they came home from their 8 month NICU stay.  Prior to that, I just wasn't ready to put everything we were going through into words, or at least not words for the whole word.  Most of my journalling from that time is in the form of emails to my best friend Hannah in Australia.  I would write these incredibly long emails all the time to her describing all the details of what was going on with a mixture of humor and distress most of the time. Writing was therapeutic in that form.  But blogging is different.  When I started blogging, I decided not to blog to vent or for my own therapy if you will.   Although it does at times prove very helpful to me to blog, I blog usually either to update people on medical information or to reflect on what is happening and how we are feeling and dealing with it.  Recently I definitely have been using it more as a post crisis reflection place. Sometimes that makes writing posts difficult because I don't always feel like I have any positive or wise words yet.  There have been stretches where my blog has been neglected when I have not felt like I was ready to write something I wanted everyone to read.  But usually I do love writing on my blog and having a way to share more of our experiences and my heart with people.

It was soon after Addie's transplant when I was getting lots of great feedback from my blog posts and I was feeling so excited about the difference transplant had made in her life that I decided I wanted to write a book.   I knew it would be hard to live up to the greatness of my 6th grade Babysitters Club-esque novel but I realized that I had always wanted to write a book and now my life had a remarkable story to tell.  I got pretty excited about the prospect and decided then that it would be a story of our quest to transplant so it would end with Max's transplant.

My enthusiasm took a bit of a dip when Max's transplant was so difficult and I stopped thinking about it for a while.  And then over last summer, I got my groove back and started writing.  I worked out my plan and style.  The book is not intended to be focused on medical details or telling of the events specifically.  I wanted my book to be a chronological story but focused on the emotions behind the events.  It's about how our family has endured and embraced this journey and the ways in which we have grown through the trials. In that respect, it is as much MY story as Max and Addison's story.  The events happened to them but really the only story I am equipped to really tell is how being their mom through this has changed and moved me.

Admittedly my desire to write my book is somewhat 'selfish' because I want to document this journey for myself and my children and for the challenge of writing a book about it.  But there is also a side of it that is for more than that.  I would love for our story to encourage others.  I get a lot of great emails from people going through various things from having sick kids themselves to totally different trials who say that my blog posts have ministered to them in some way.  So I hope that as well as doing this for me, God would use my words, my story, my book to encourage and bless others in the process.  Or at least provide them with some enjoyment from reading it.  I am putting it all on my public blog so feel free to pass it on or link to it or anything if you like.  I always take it as a huge compliment if someone asks me if they can share a post I wrote and always smile if I see posts linked or shared!

I have decided to write lots of short chapters as it just felt like the best way to divide up all the ups and downs in the journey.  I have 50 chapters intended (9 of which are already written) so if I publish one a week on my blog this will be a year long process.  So hopefully a year from now I will have my book written.  Whether I decide to then try and get it published or not, I'm not sure.  I'll just be happy to have written it!!

I reformatted the home page on my blog and changed the title of my blog in preparation for this new project. I'm titling my book "Dancing in the Rain" after my favorite quote:  Life is not about waiting for the storm to pass, it is about learning to dance in the rain."  What I hope more than anything to portray in my book is that although this journey has been difficult and at times painful, we have experienced great joy and happiness through it.  And as you know if you've been reading this, our story has continued long past Max's transplant (although my book will stop there) and we are still Dancing in the Rain through each storm that continues to come!

I'll be posting the first part of my blog this weekend.  Thank you in advance for reading along and encouraging me in this endeavor!!!

Sunday, February 16, 2014

The Audacity of Hope

Despite the title, I promise this is not a politically minded post.  I borrowed our President’s phrase only because I love the concept behind it that it takes fortitude and courage to hold onto hope, especially when evidence and logic can make it feel foolish at times.

To quote a wiser source, the Bible says “these three remain:  faith, hope and love.  But the greatest of these is love.”

I’m really grateful that the greatest is love and not hope.  Because for me, love is so much easier than hope.   In all that we have been through, my ability to love has only been amplified.  My children have taught me the depths of love and all that they have been through has only made my love for them fiercer.  I have grown to love our families more deeply as they have stepped in and helped us in amazing ways.  I have fallen in love with some of the nurses, therapists and doctors who have taken care of my kids and taken care of us.  For all the difficult times, my heart has only stretched to love more people more intensely.

Faith admittedly has, at times, been more difficult.  But, I have reached a point now where new trials do not challenge my faith anymore.  I have come to peace with the eternally impossible question of ‘why do bad things happen to good people?’ (to be clear I ask that not implying that I am the good undeserving person but instead looking at my completely innocent children who have suffered).  I am not going to tell you I have the answers.  But I am at peace that tragic things have happened to my children but that God is still good.  And He has a plan.  One that does not always make sense to me.  But that is ultimately for His good.  I have learned that my faith is necessary to sustain me.  I need to believe in God.  I need to hold fast to the glory of Heaven and the knowledge that this is but a temporary home.  It hasn’t been an easy journey but I can say that through the trials, my faith has strengthened.

And then there is hope.  Hope is the hardest.  Particularly lately.  Honestly I will tell you that since Max went into respiratory distress in November, I have been struggling with my attitude and perspective.  Mainly, I have been struggling with a feeling of my hope fading.  For me, hope has always been the belief that better times are ahead.  That this road will become easier, that my children will get better, and that life will settle into a sense of stability.  In stages, that hope has been essential and it has sustained Al and I.  Our absolute hope that transplant would be the turning point and the delivery of health to our kids and happiness for our family got us through the first two years.  And it provided us with the necessary motivation to get the kids transplanted, when it was an arduous process.   And that hope only grew so much stronger after Addie’s transplant and she really did amaze us with her turnaround.  We hoped that the effect for Max would be similar and that we would reach what I called our ‘new normal’ and that even though their developmental delays and disabilities would continue to be a challenge, life would be steady and they would be healthy and happy.

It is not a hope we quickly abandoned either.  I am proud of Al and I for how stubbornly we kept believing the worst was past and things were going to turn around.  Transplant was difficult for Max but when he came home from the hospital after nearly 7 weeks, I wrote enthusiastically about our Happily Ever After on my blog.  We were excited, even after he had a lot of hospitalizations afterwards.  Our summer was eventful with Max’s rejection issue and new neurological symptoms.  But that did not stop me from writing on my blog about my fresh start this school year and how it was going to be a smooth year without major dramas or surgeries.  When I did my 13 presentations for the students at my school, I said with confidence that the major medical issues were in the past now.

And then that night, Max took his first ambulance ride.  And I stopped believing that the worst was past. Since then, it’s been a huge adjustment to the reality that Max has taken a turn for the worse with his breathing and that we would need major changes at home, including nursing support, a Bipap machine and many other forms of breathing treatments.  In addition to the respiratory issues, Max has had bad luck and ended up with an infected port- twice and now a clot in the line where the port was, requiring blood thinner shots and probably a month of IV antibiotics.  We have had difficult conversations about what we will do if the Bipap ceases to be enough, we have contemplated the unimaginable.  It’s been pretty awful honestly.

And along the way in the past three months, I stopped hoping things were going to settle down and that we could still end up with our healthy and happily ever after.  Partly it was just an emotional reaction to what was happening.  And in part, it has been deliberate.  Hope hurts when it doesn’t deliver. I have felt such frustration that I really thought we were past these frequent hospital trips and now we are back.  Because I so genuinely hoped for better, the reality has been especially difficult to swallow.  So during Max’s January admission, I just resigned myself that this is how it is going to be.  I decided that if I stopped hoping for different, it would be easier.  The doctor tells me ‘he may make it home Friday, otherwise I am on this weekend’ and I reply with ‘Ok, I’ll see you Saturday.’  I say ‘see you next time around’ to our nurses and doctors because it just felt logical and emotionally safer to assume that is how it will be.  Then, when next time comes, it won’t involve that shock, that contradiction to expectations.

I let myself stop hoping.  But in the past few days, I have thankfully recognized that was wrong of me.  After all, the Bible commands us to have hope.  And we need hope.  Because I haven’t been happier since decided this is how it is.  I’ve actually found it discouraging to think like that.  And I don’t want to become jaded.  Even if it would be understandable…  Even if, on some level, it might be emotionally safer…  Even if, frankly, it just feels more logical.  Despite all that, I want to keep being a hopeful person.  I want to keep believing that the tides are turning soon!  I want to think that we will now have a nice long uneventful stretch.  And I want to raise hopeful children.  I don’t want to let them become  cynical or defeated or accept a lower level of joy in exchange for a reduced risk of disappointment.

So, my goal for myself at the moment is to hope again.  To have the courage, the audacity, to hold fast to the hope that we will not be in the hospital again any time to soon.  To look forward to a nice long stretch with my family all together at home.  To believe that between the Bipap and the port being out, that we really could be free from the need for hospitalizations for a while.  To not let the nagging fear of ‘what next’ consume me.  To not be on the look out for the other shoe about to drop.  My goal for today, and for each day is to risk the tears and discouragement to experience the joy of hope. 

So last night we celebrated.  We had a huge dinner.  We smiled and laughed and were so happy.  We celebrated Max being home and we didn’t talk about ‘next time’ or how long.  We celebrated him being back with a hope that is a permanent return.  We embraced the hope and it felt so healing and the joy so refreshing.

--Coming Soon on my blog--  I have been writing a book about the first two years of our journey (through Max’s transplant).   I am about 9 chapters in but keep getting stumped with the motivation and energy to keep writing.  So, I have decided I’m going to publish a chapter every Sunday starting next Sunday on my blog until I finish it.  I’d love to one day try and get it published but right now I just want to get it written and I figure publishing as a I go will give me motivation and a chance for anyone interested to read along with!  So stay tuned next week for the start of my book…