The Waltz of Grief and Joy

This week as we passed the mark of having now lived four months without our precious Max, I started to think about my own emotional journey in that time.  I began to jot some thoughts down under the heading of ‘lessons learned 4 months into my journey with grief’.   As I started to think about it though, I realized that I am far more than 4 months into that journey.   Although grief has become a frequently spoken word now in my life and while it obviously has assumed a far more central role, Grief is actually a familiar character in my life.  Emotions are very difficult to conceptualize and adequately portray with mere words.   We would like to teach Addie to communicate emotions through her iPad app, but it is very hard to teach her to recognize and label such abstract experiences.  Likewise, it would be easy for me to tell you Max and Addie’s story as a timeline or to explain these past few months as a list of events and milestones.  However, to do so would reduce a profoundly complex journey that is inherently filled with intense, conflicting, and ultimately complementary emotions.  I find the best way to bring that story to life is really to personify the emotions themselves.  In a very Inside Out-esque mindset,  I visualize the key emotions as characters interacting on some sort of stage, producing an evolving story.   At this point four months in,  I wanted to share a little about the two most prominent characters in my story-  Grief and Joy.    It sounds like they would be at odds, constantly competing to be the lead character.  What I have found instead, though, is that Grief and Joy actually complement and enrich one another and are dancing gracefully together through each day of these chapters of my life.

When I was reflecting on Grief and what I believe to be true about his role in my life, I was trying to determine when Grief first joined the ensemble chorus of my life.  Grief obviously began before the morning we lost Max since we found out 12 days before that morning that Max’s labs were so bad and his medical problems so multi-faceted and dire that nothing more could be done to help him.   We began grieving losing Max even while he was still with us, which was a heartbreaking and complicated experience.  I could rewind a bit further and identify that Grief had really been residing with us since March when Max spent 5 weeks in the hospital following a septic infection and never really rebounded.   We began working with palliative care and hospice when he did come home because his heath took such a sharp decline.   Processing what the loss of his tenuous stability meant for our present and our future filled us with Grief.   But, truly I believe that Grief made its debut in my story 6 years ago.  6 years ago when a neurologist held up pictures of Max’s brain MRI scans and began every sentence with ‘your son will never’.   We received (and that is the wrong word because truly it was thrust at us) Max’s diagnosis 6 years ago and while the absolute details of what it really meant were fuzzy, the gist was that Max’s life was going to be short and full of challenges.   I was so unprepared, so consumed in the hopes and dreams I had clung to for my children (even in the face of a full year at that point of huge medical obstacles), that I hardly recognized that it was Grief entering my life.   Living with loss from death, people readily label Grief.   But, in those moments then, processing instead a loss of dreams and potential, I did not even identify the feeling initially.   Was it Despair or Depression?  At times confused for maybe just Anger and Jealousy?  Was it an extension of Fear or nothing more than Sadness, a known feeling but in a new potency?   It took me a while before I realized it was Grief.   I was grieving the life I had planned for Max.  I was grieving the health and happiness I had wanted for him and felt he deserved.   I was grieving the future, that now looked bleak instead of shiny and hopeful.

I’m sharing my initial experiences with Grief because while this current pain following losing Max is new and acute and decidedly different and more profound and permanent, a lot of the lessons I learned 6 years ago walking with Grief remain true now.   More than a full year after Max’s diagnosis, I finally wrote a blog post really sharing how hard it had been for me to process his diagnosis and the sadness I was feeling daily, even while he continued to be so smiley and bring us so much joy.   The conclusion I came to in my blog post was that “heartache and hope are not mutually exclusive and that joy and sadness can co-exist in the same second.”  My very first year of knowing Grief had taught me what I still believe is the most important lesson for me right now-  that Grief and Joy can dance together through our lives and that their melody can actually be profoundly beautiful.   During the nearly 6 years between Max’s diagnosis and departure, I truly learned that Grief does not negate Gratitute, Happiness or Joy.   We loved and enjoyed and treasured Max richly.  Anyone who knew Max knows that his life was a Symphony of Joy!  To love Max was to be filled with profound, atypical Appreciation and Delight.  And yet, when he would be admitted to the hospital and Fear would return, so would Grief.  When milestones were missed and life stages served as reminders of what could have been, Grief was present.   I learned not to feel ashamed of, or angry with, Grief’s recurrent presence.  I learned that I could Grieve for what Max had to endured and what he missed out on, and at the same time Rejoice in the blessings in and through his life.  Mothering Max was the greatest Joy, but mothering Max meant accepting Grief as well.  Acknowledging that the two emotions could co-exist was a crucial lesson then- and an equally crucial one now.

Looking now at the last 4 months, since that dreadful morning when we kissed Max goodbye, I see that Grief and Joy have been hand in hand waltzing through each moment of these days.   There is no denying that in the initial periods after our loss, it felt like a one-man Grief show that seemed to block all else out.   Yet even in the worst moments, Joy broke through… in Addie’s oblivious enjoyment of having all her grandparents around all the time, when Hannah flew out from Australia to spend 6 days with me, when friends and nurses I had not seen in years showed up at Max’s service to hug us-   during Grief’s solo acts, Joy bravely danced across the stage.   And instinctively it would feel almost wrong.  “This is not your time Joy! We just lost Max, this moment belongs only to Grief,” shouted Guilt from the sidelines.  But we determined to dismiss Guilt and embrace Joy’s much needed appearances.  Joy never removed Grief, but she softened him.  The light of Joy made even the dance of Grief its own form of beauty.  We tend to view Grief as ugly or dark of undesirable but when Joy danced through, we remembered that Grief is the close brother of Love.   Grief sang because Love had exuded so fully through Max.   Joy reminded us of the resemblance of Grief to Love.  Joy enabled us to endure Grief’s most overwhelming melodies.   We could be present with Grief because the glimpses of Joy during that time offered respite, promised the intensity would be temporary and helped us view Grief through the lens of Love.

As the initial days after losing Max turned into weeks and then months, we began to see Joy and Grief co-existing in a constant duet.  Both always present and intertwined, neither stealing the show from the other or removing their own individual significance.  Someone asks ‘how old are your kids?’ and Grief answers “I have 7 year old twins but recently lost my son” and Joy chimes in “but Addie is amazing and Max is running in Heaven”.  We go on our first outings just the three of us and Joy says “it feels wonderful to see how happy Addie is right now” while Grief whispers back “I sure wish Max was here”.  Every happy experience carries the reminder that Max was not here for it, and every sad day is lightened by the memories of his smile and our confidence of his bliss in Heaven.   During celebrations, during challenges- Grief and Joy are both there, front and center, loud and clear.   Just as Guilt tried to tell Joy she was not welcome during Grief’s dominating hours, Guilt sometimes tries to shoo away Grief now.  Guilt says ‘You have worn out your welcome, this is Joy’s moment.  It’s their birthday! It’s Christmas! Today belongs only to Joy”.   But, we once again dismiss Guilt.  For just as there was room for Joy in our greatest moments of Grief, there is room for Grief in Joy’s hours.   Because truly for me, Grief and Joy dance most beautifully together.  Similar to how Joy reminded us that Grief is Love, Grief reminds us that the greatest Joy lies in heaven and not here.  Grief allows us to remember our past and future blessings while Joy sustains us in the present.  It is when Joy can dance with Grief that it is so much more than fleeting happiness-  Joy becomes a resilient celebration of all aspects of life on earth and eternal. 

Joy and Grief are also not dancing alone.  The other partners gracefully twirl around them.  Pain and Peace link arms and together show that we can mourn that we miss Max but rest assured he is completely healed now.  Sorrow and Solace acknowledge that this is a pain no parent should face but remind us that we do not face it alone, but rather surrounded by love and support.   Hurt and Hope accept that the very real human ache of loss is valid but that the promise that we will see Max again is what matters most.   This chorus of opposites, the dance of dichotomies, is the melody of my life right now.  And to have a moment of complete honesty here- this is not the story I would have chosen for my life.   Left to my design, Joy, Happiness, Hope, Peace and Laughter would be the only players, doing one Conga Line after another!  If I was writing my own story, it would be cheesy, sloppy acts of giddiness.   But, I am not the author of the story of my life and I recognize that God is telling a more beautiful story.  We all know instinctively that the greatest stories always have heartache mixed in with happiness. Untested happiness lacks the grace and strength of weathered Joy.  The full cast of my life is what gives it true beauty and what will enable it to continue tell the richest story.

These are my thoughts 4 months after our loss.  I know the dances will adjust and the songs will shift.  I hope Joy gets more solo moments and I expect that she will.  Grief will probably spend longer periods singing in the background chorus and I know that will be a welcomed change too.  I also know Grief is not going away for good and that it will parade through front and center at times when I don’t expect it.   And I am completely okay with that.  I am not trying to ‘work through’ or ‘get over’ Grief.  I am living with Grief.  As one of the many real amazing characters or expressions of emotion in my life.  Grief resembles Love to me and Grief dances with Joy and brings greater meaning and beauty to her dance.  My life story is unfolding exactly as God intended, including my daily waltzes with Grief and Joy.

Lessons Learned from 7 years of loving Max

There is so much I want to share about Max’s life and legacy and I intend on continuing to share about him for the rest of my life.  His nearly 7 years were full of so many remarkable stories, from the medical challenges and scares he overcame to the adventures and experiences we shared as a family.  But, as I have only a few minutes with all of you today, what I want to share right now is three lessons Max taught me that have changed who I am and that exemplify the lasting impact his precious life has had.

The first thing that Max taught me was that Extraordinary things are waiting when we let go of our ordinary dreams.  People that know me well know I am a planner.  I love to plan things and then I love things to go according to my plan.  Going into motherhood I read every book, contemplated every decision and was captivated by my own beautiful picture of what life would be like with my boy girl twins.  When Max’s water broke 9 weeks early and a series of discovered medical conditions resulted in 8 months spent in the NICU, I started to realize my plans were inadequate.   I continued to persevere thinking I could just sketch in a few new additions to my existing picture.  I would draw in a little dialysis machine or two, pencil in some hearing aids and a wheelchair, erase a kidney here and there and redraw them.  I thought I could squeeze it all in and still have my picture of a beautifully ordinary planned life.  It took me a couple years and a whole lot of holidays spent in the hospital and new diagnoses to finally realize that I needed to stop editing the picture I had and instead start with a blank canvas and paint from scratch this life we were living.  When I finaly accepted that, I saw that in place of my ordinary plans, God had given us an extraordinary family.  Max’s pure spirit and infectious smile and love were more beautiful blessings than I had ever planned for.  Max’s life was an extraordinary gift that exceeded my plans and dreams.  At this moment, so soon after we have lost our precious gift, I’m staring into the future and once again the plans and ideas I had for it have changed.  But, Max taught me to embrace a blank canvas and trust God to paint something beautiful on it and I know that his legacy will ensure this next chapter continues to be extraordinary.

The second lesson that Max taught me is that true Strength is the ability to bless others, regardless of our circumstances.  The most remarkable memories I will carry of Max are when he would be in the hospital and he would smile and laugh at every person who came up to his bedside.  He would grin and endear the nurses, never holding it against them that they had to stick him or get blood pressures checked.  Max did not just endure his trials, he smiled and blessed others throughout each one.  None of us who had the privedge of caring for Max will look back and remember what he needed from us- we’ll only remember what he gave- joy on dark days, smiles when tears would have been understandable and selfless love that never expected to be returned but of course always was.  Before I had Max and Addie, I had never truly had to be strong.  I had a wonderful childhood, fell in love and married my first love and had been blessed with good health and great family and friends.  Trials had been few, and probably largely self inflicted, and my resilience had gone untested.  From day one, Max taught me how to be strong.  During the most difficult few years of my own life, he led by example.  When I would veer into self pity territory, he would flash me a smile that reminded me that if he could be okay with this, I had to be as well.  When I felt overwhelmed and questioned how I could handle the responsibilities we had, his calm faith in me reminded me I would do anything for him and his sister.  And when I would head off to work after hard days or nights and wonder how I would be able to smile and put on a brave face, his constant smile and love to all around him served as my example.  Max taught me not just to endure difficult days, he taught me to continue to smile and love others during them.   As I face now a sadness that even these last 7 years could not have prepared me for, I draw upon the strength my son taught me to face the world with a smile and to continue to try and share Max’s love and joy with my family, friends and students.

Lastly, I wanted to share that the final lesson that Max taught me is that the only ability we need is the ability to love.  Prior to having special needs kids, I tended to feel that certain abilities were crucial to my happiness.  Being able to walk and talk were a given, enjoying food was an essential pleasure in life, being able to read and write and maintain friendships were necessary to my every day life.  When Max and Addie were 6 months old and the doctors told us they likely had profound hearing loss, I was devastated.  I cried many tears because I could not fathom life without music and conversation and questioned if they would be able to enjoy life as fully without these things.  When the neurologist first told us about the extent of Max’s cerebral palsy, I once more was shaken and heartbroken because I worried Max’s disabilities would mean he would not be able to have a happy enough life.  But, I need not have worried because Max exuded a joy every single day that surpassed my own.  He took delight in every simple thing- he enjoyed the mobile that hung over his bed every day of his life.  He found watching Addie scatter every toy in our home across the living room most entertaining.  He watched her favorite shows time after time and smiled and chuckled at the same parts each time.  And he loved his family like crazy.  Any time you made eye contact with him, his face would beam.  He loved being held, he loved being talked to and made everyone around him happier.  Max had the ability to love.  He loved his family, he loved life and he loved things we so easily take for granted.  And in the end, that ability to love was the only one ability that mattered for him to have the fullest of lives.  Teaching me that our abilities matter far more than disabilities is one of the most important gifts Max could have left me with.  As most of you know, Max’s twin sister Addie has non-verbal autism and also has a compicated medical history.   I sometimes think if I had not been Max’s mom also and had only been Addie’s, I would have struggled so much more with her challenges.  I could have been very upset by her lack of verbal language and grieved her atypical journey.  But Max taught me to see beyond the cannots and embrace every can.  I look at Addie and I see all that she can do and her amazing abilities.  I rejoice in her running around because Max reminded me that is something to never take for granted.  Her ability to communicate with an ipad is such a blessing and her joyful high energy unique zest for life is contagious.  I am able to treasure Addie exactly as she is and am able to be a strong mom who will fight for her and see always the best in her because God gave her exactly the brother she needed.   In his 7 years on Earth, Max molded me into the mom his sister will need for a lifetime. 

I know this only touches the surface of what Max has done for me.  But I cling to these dearly and know that I carry Max with me every day.  I hope Max that you will be proud when you look down and see me abandoning my ordinary dreams trusting God for an extraordinary path.  That you will smile with me when I choose to give joy to others, even when this new phase of life is hard.  And that even as you do now have the ability to run and sing in heaven, that you’ll always remember the most beautiful ability you have is your ability to love and that will forever live on in our hearts until we see you again.

Comparison: The Thief of Joy

A couple of weeks ago, it was the end of Spring Break week and Addie had gotten in the habit of staying up late and sleeping in so I was trying to convince her to go to bed earlier by letting her go to sleep in my bed.  She was alternating between sitting up and bouncing and laughing and then lying back down and stroking my face. I was struggling to be firm in my message that she must go to sleep when she was being so adorable.  Finally around 10pm, she was dozing off so I got my phone out and was reading a blog to wind down myself and it was a mommy blog and it was full of cute and funny tales about her precocious three year old.  I read one about her rocking her daughter to sleep and her daughter telling her she was her best friend but if she really loved her, she wouldn't tell her no so much.  No sooner had I chucked than I felt sadness kicking in.  I looked over at Addie lying next to me and suddenly felt this great loss that she did not talk to me and tell me things like that.  I started thinking about all the cute things 4-year-olds normally tell their parents and becoming aware of what I was missing.  In a matter of minutes, my complete happiness over my sweet little girl whose arm was still wrapped around my back had turned to sadness and grief over what I suddenly felt 'should have been'.  Nothing had changed but my perspective.  The simple act of stopping to compare my life instead of just live it had cost me my happiness.  I gave myself a good talking to and eventually shook it off and was fine but it made me think about how often we do that.  We lose our contentment with what we have when we start focusing on what others have.  

It reminded me of a quote I love that I actually have a printed off version of behind my desk at work: "Comparison is the thief of joy".  I have it placed somewhere that I look every day because it's a reminder I definitely need.  It's actually surrounded by a ridiculous number of quotes because a few months ago I decided that I needed to be surrounded by wise words. 

In October we got Addie's autism diagnosis and for a couple of weeks, it was all feeling very overwhelming. New developmental diagnoses have always been much harder for me than medical emergencies and I can make that claim with a wealth of experience in both over the last four years! In a medical emergency, it is all about right here, right now and there are doctors and nurses making sure you are okay and numbers to follow and people bringing you cupcakes.  It's chaotic and scary but I know what to do with myself and how to stay busy and purposeful and calm.  When I'm facing a new diagnosis and a new change to what I thought my future was going to look like, I get more restless and panicky and sad.  There are no doctors doing anything to fix it, there are no quickly changing numbers to track progress with.  There is just normal life and people handing you daunting packets with names of therapists who may or may not take your insurance.  So, when we got the autism diagnosis, even though it was completed expected, it still started to make me feel all worried, sad and woe is me.  And there was no time for that so I decided some inspirational quotes would help me.  I went straight to the source of all wisdom- Pinterest- and began pinning all these quotes about strength, trials, the future and hope.  It became the perfect project for me when I then printed them out and mounted them all on cardstock and laminated them.  If you know me at all, you know that nothing relieves my anxiety levels like melting plastic onto paper.  As I pulled each freshly laminated warm quote out, I was starting to find my calm again. I taped them up all around my desk and to this day I am surprised that none of my students have asked why it looks like a self help book threw up on my wall.  But, those quotes really did help me!  I would show up at work every day and read all my little pep talks and get my groove back. I was given this life because I am strong enough to live it! The best thing about the future is that it comes one day at a time!

And of course: 'Comparison is the thief of joy'.   Clearly I should have enlarged that one and made an extra laminated copy for every room in my house.  Because it is a struggle.  I need that reminder every time I go to the playground (perhaps I need a little business card sized laminated copy for my wallet) and a little kid asks Addie to play with them and she keeps walking with her hands full of mulch because clearly it is more fun to throw mulch down slides than play princesses with the other kids.  I need that reminder every time I log on to Facebook and see adorable pictures of little boys playing t-ball and I wonder what Max would look like standing up with a little bat in his hand.   I need that reminder when I'm out to eat and I marvel at a toddler eating chicken nuggets because oh my goodness sometimes I forget that other children eat with their mouths and not with a tube.  Come to think of it, I should probably just go straight to a tattoo parlor and get 'Comparison is the thief of joy' tattooed all over my arms because I need to be reminded of it constantly.

I am still a work in progress on this but I do think my being aware of it has been an important step because at least when I do start getting sad in those moments, I have been able to catch myself and re-focus on what IS and stop my mind from stalling on what COULD BE.   To clarify, none of this is to say there is not a place for real genuine sadness.  I think God completely understands when I feel sad that my children experience frustration and pain because of their disabilities.  I believe He wants me to take those very real and fair hurts to him because He too aches for Max and Addie when they suffer.  And although I know there is little merit to worrying or anxiety, I also believe those concerns for the future can spur us into action and therefore have a place.  It is helpful that it is the desire of my heart to help Addie find her voice.  My dream to see her talking and telling me how she feels has helped motivate us to make the sacrifices we are now making to get her into this school that will best help her get there.  That I don't want my kids to be sick or uncomfortable and that I long for them to develop new skills in their future- those make me a good mom. And I believe God honors that.  What is not good or helpful is that I can be in a perfectly happy moment in my home where I am genuinely enjoying my kids and they are both smiling and happy and I can let the thoughts of 'but it could be better' or 'this is not everything I wanted' slip in.  In those moments, I am just letting my comparisons- to other families, to my previous dreams- rob me of the genuine deep joy that day to day life with my adorable family brings.  That's when I need the reminder.  To stop focusing on anything other than right here right now and the blessings God has given me.  

The reason I am sharing all this is because I don't think this is just MY struggle.  I think it's something we all struggle with and I think it is more difficult than ever when social media makes those comparisons much more frequent and hard to avoid.  In the end, my getting sad because Addie cannot tell me she loves me (despite showing me all the time) is the same as if I were being very happy with my home until I go visit a friend whose home is bigger.  It is the same as feeling happy with my marriage until a friend tell me a story about her husband and his grand romantic gestures and I kinda feel slighted.  We do it all the time- we look at one snapshot of someone else's life and it looks better than our reality.  It's illogical because we don't always want to actually put the effort in it would take to have their life.  I can be completely jealous of someone who is really fit and still have absolutely no desire to exercise ever. It's also irrational because we do not always even know the whole story or want the whole story.  I admire their vacations and think I want that!  But I may not want the work hours that would pay for that vacation.  When we start comparing and wanting, we are trying to trade in a real, true, full life for a series of still frames that would themselves only disappoint.

And when we compare and feel slighted, we lose sight of OUR blessings and we forget to thank God for what we do have.  Because, it may be true that someone has it better, but it is most definitely true that someone else has it worse.  And neither of those really matter.  What matters is what we have been blessed with.  My children have a long list of complications but they are ALIVE and God did that (using some pretty amazing doctors).  There were days when I prayed for nothing more.  When I sat by an isolette and dreamed of them being in my home.  When the very idea of Addie laying next to me in bed was the most precious thing I could imagine.  They have overcome enormous odds to be home and healthy today and beyond that blessing, God has given us generally very HAPPY children who smile most of the time and find great joy in their lives.  Sometimes it's in unusual things- like throwing mulch or the fact that to this day Max acts like the mobile he has had since he was 2 months old is the Most Hilarious Thing Ever.  But you know what, it really does not matter whether it is 'normal' things that make them happy- it matters that they are truly abundantly happy.  And that is just talking about my children.  Some days I think about everything they go through and am working up some mighty self pity that I forget how much I have to be thankful for like seriously the best parents and in laws in the world who have the means and the HEART to help us out all the time and who love spending time with us, or a devoted husband who hasn't been home to Australia in six years because he wouldn't leave our kids for even a couple of weeks and who has given up his career to care for our kids, or a workplace that let me take time off when I needed it and supports me and co workers that really should abandon education and take up stand up comedy because seriously they are hilarious.  There are struggles in my life, for sure, but there are SO MANY blessings.  There is so much joy.  And I'm determined to hold on to every part of it and let nothing steal it from me.  Especially not comparison.  

I am going to have to settle for my laminated cards and my memory because I feel like I might look like a sketchy 80 year old if I have quotes tattooed on my arms.  I am probably going to slip and let those thoughts in sometimes and have those moments where I feel sad for the words I do not yet hear or the freedoms our situation does not afford us.  I am, after all, human.  But, I will try not to let it consume me.  I will try and focus on the sweet little arm on my back in my bed and how many miracles have already happened in her life and how many more I know we are on the cusp of.  I will savor the nights when Max is home and soak up his smiles because let's face it, I was never really cut out to be a baseball mom anyway.  And on top of that, I will every day thank God for my wonderful parents, my witty co workers and my warm bed.  There are some with more and many with less but as for me, my blessings are many and my joy, complete. 

The Significance of the Signature Smile

I will always remember the first time Max smiled.  He was four months old and I was taking pictures of him and Addie and he started giving us these big grins, complete with dimples and all the adorableness we can imagine.  He actually started really smiling a few days before Addie and he definitely made his reputation in the NICU for being so incredibly smiley.  He smiled at his nurses almost constantly and the smiles brightened the room up.  Those were all days 'before' and his smiles were precious and endearing but they did not yet have the significance and the necessity that they do now.

I say 'before' because being Max's parents did seem to change almost in an instant when we got the diagnosis about his neurological damage when he was 13 months old.  Our expectations and dreams changed dramatically over the months that followed.  Difficult conversations with doctors were frequent and we were constantly hearing about the things Max would not do. We had many dreaded conversations where doctors encouraged us to really think about the concept of quality of life in making our decisions for transplant and long term care.  Some of these conversations were delivered with tact and compassion, others less so.  But the thing that made these talks and the new realities we were facing bearable was his smile.  We did not have to agonize over wondering if Max did have a quality of life because he was pretty much constantly beaming at us.  Al and I quickly realized that although we may sometimes doubt that WE could be happy if we were not able to move or communicate effectively, we never had any reason to doubt for a second that Max was happy.  If you asked anyone caring for Max to describe him in a word, I'm sure most would choose happy.  His smiles were also not random but almost always directly in response to seeing us and they told us that for any of things we were not sure if he understood, it was clear he knew very well how loved he was!

Through all the highs and lows that have followed in the years since, Max's smile has remained extremely important to us.  When he is sick and not feeling well, the smile fades temporarily and that is usually his way of telling us something is wrong.  Then, as soon as he is better, the smile returns and we know he is okay again.  His smile is often more telling than bloodwork or any doctor's assessment.  Frequently we will notice he is not smiling as much but be unsure why and then a day or two later, he spikes a fever or his labs come back bad.  Max does not have words or signs but he has the most expressive face and his smiles and frowns are how he communicates with us and they are how we try and understand what he is feeling in his world.  In that respect, his smile is so much more than just an expression, it is his primary form of communication.

And just as his smile gave us peace during those early conversations and queries about his quality of life, it continues to be our main source of reassurance that for all Max endures that he is ultimately happy and at peace.   There are so many discomforts and limitations that Max endures that we feel powerless to prevent but on a day when his whole body smile is beaming at us, those seem less significant than the things he can do like laugh, enjoy family outings and find joy in his surroundings. If you were to describe Max's limitations and his medical history, it could certainly sound like a very sad situation.  And yet, if you know Max and spend time with him, it seldom feels sad in the moment.  He is charming, personable and his giggling at his mobile is so adorable, it is near impossible not to smile yourself.  I've called Max's smile contagious many times before because being around Max truly is an uplifting experience.  And not just because it will make you appreciate the things you can do (although that too is certainly true) but because he is so happy and his smile is so full of joy that you will end up smiling with him.

The fact that Max's smile is so important to us, to our ability to understand Max and to our sense of peace that there is more good than pain in Max's life is why these past few months when Max's smile had vanished have been so difficult for us. Max was quite happy and smiley through his hospitalizations in December but when he came home in January, we knew something was not right because he was crying a lot and not smiling.  He ended up readmitted a little over a week later, stayed for a little over a week and then came home but still unhappy.  We were worried about him and not surprised when he then ran a fever and was admitted again, and for over a week.  More concerning was that when he came home then, he did not smile once for over three days.  Those were long stressful days.  We couldn't pinpoint what was wrong with him.  No fever, no obvious source of pain.  And yet it was just not like him to not smile and to give us non stop pouting faces and crying.  Finally he began giving some half smiles but for two weeks, the smiles were few and far between and the crying and sad faces were prevalent and really troubling us.

When Max is miserable, we feel very stressed trying to determine what is wrong.  Although he is four, he has no way to tell us or show us more specifically what is wrong.  Although Addie still does not use words to describe what is wrong, she pulls on her ears or touches her throat or finds some way to usually indicate what is bothering her.  With Max, we have this sad pout lip and tears but no real clue as to why.  And when he is sad and his smiles are gone, our hearts are so heavy for Max.  We long to be able to take away his pains and we feel sad that he cannot do the things his sister can that would cheer her up.  His limitations seem bigger, his trials seem less surmountable and our ability not to dwell on the past or fear the future begins to fade.  In a way, his sad faces are as contagious as his smiles.  Without them, the sadness and fears creep back in and his situation starts to feel upsetting and instead of focusing on the great things in his life and that he can do, we find ourselves discouraged and worried.

Thankfully Max's smile free streak has come to an end, for now at least.  He woke up happy on Saturday morning and is back to giving us full whole face light up the room open mouth exuberant smiles.  He is still having some grumpy stretches but we have been able to handle those because a few minutes later we can hear his sweet laughter and see him grinning at us. We know that there are challenges of course for Max, but we know that in spite of them, he is happy.  He sees the joy and he knows he is loved and that there is so much goodness in his life.  When he sees us and flashes us that smile, we remember not the struggles but the sweetness, not the limitations but the love.  His smile heals our hearts and are house becomes lighter and happier. It's pretty remarkable the power this sweet little face has over all of us.

I love to share the pictures of Max's huge smile in hopes that I can share his message with everyone.  Yes there are difficulties and challenges in life, but there is also so much joy and hope.  This weekend we got our happiness back and we are so grateful,  We are soaking up the smiles, focusing on the good and praying that we can keep Max happy and smiling in the days, weeks and months ahead.  Just for fun, some of my favorite pictures of the Signature Max Smile... I bet you cannot look at them and not end up grinning and falling in love with this boy!!

First afternoon home from the NICU and we got a smile bigger than we had ever seen in the hospital! He knew he was home!

Watching him smile while he watches Addie play is one of the sweetest joys to me! 

No doubt he knows how loved he is!

One of my favorite pictures, loving the view from his new chair. 

One of his last really great smiles in late December before he went on his two month smile strike

And our most recent picture of the most beautiful smile in the world that was back this Saturday!!!

Chapter 27: The Holiday Card Assembly Line (Addie's First Hemo)

Once upon a time, when I had a normal life and simpler problems, I taught Psychology.  I loved learning about how the mind works and the tools to treat it when problems arose.  Of all the mental illnesses we would cover, students were particularly drawn to learning about phobias.  From the unusual things people could be afraid of to the creative ways to treat them, it is undeniably an intriguing look at the human mind.  One theory is that the best way to treat a fear of phobia is simply prolonged exposure.  We tend to fear things that we have not experienced and were we to experience it, the irrational fear would be replaced with a logical understanding of the previously terrifying concept. There is plenty of debate as to whether that form or therapy is brilliant or downright traumatizing but it has certainly been widely used.

Obviously I was not always afraid of hemodialysis.  Back in my blissfully simply psychology teaching days, I never even thought about hemodialysis, if I even really knew what it was.  But over the course of the year since Max and Addie, I had learned enough to be truly terrified of it, complete with sweating, heart racing and shuddering at the sound of it.  Any parent could surely identify- imagine holding your new small, dependent, soft, just starting to smile and cling to you new baby and hearing about inserting a plastic tube into their heart.  Then hooking them up to a machine that pulls their blood out of that tiny baby's heart, running it through the machine, easily ten times the size of your wee one, and then after three or four hours returning that blood, hopefully without encountering seizures, blood pressure swings or fatal infections. It would surely be enough to terrify any new mom.  On top of the whole removing my baby's blood fear, we had been warned that babies on hemodialysis often need repeated blood transfusions, even every single hemo treatment and that more than six blood transfusions can make finding any compatible donor for transplant close to impossible. Both the immediate and long term risks scared me to death.

For this reason and because every doctor seemed to say the word quietly as if it was the medical equivalent of Voldimort and simply saying it would wreak havoc, I had a full blown phobia of hemodialysis. And throughout those two weeks in November, it was lurking at every corner and filling me with fear.  I was so adamant against it initially that spending two weeks in the ICU, having chest surgery, and essentially starving my child all felt like a better option than hooking her up to the dreaded machine.  However, my phobia was about to be put to the ultimate test- it was about to receive exposure therapy and time would tell if I would fear it more or less after seeing it face to face.

Exactly two weeks after Addie initially came to the hospital with fluid in her chest, we are sitting in the hospital room with a new chest tube in place, restricting her fluids and providing pitifully insufficient dialysis and feeling thoroughly defeated.  The kidney doctors rotated weeks on service in the hospital so after a year of being immersed in hospital culture, we knew that Mondays would mean a new doctor, a new perspective and a new plan.  Dr Doom and Gloom had moved to another hospital a few months ago so at this time, there were only three kidney doctors who would alternate: Dr Optimistic, Dr Nice and Dr Funny.  I even told them I had them all pegged and really with those descriptions, we clearly liked them all and felt they all brought something useful and distinct to their way of interacting with us.

That Monday, Dr Optimistic came on to replace Dr Nice.  This doctor was also the head of dialysis and the head of transplant so the doctor we had the most experience with and attachment to.  She loved Max and Addie and had invested in our family and did always try and encourage us that we would survive all of this and see a great outcome.  That Monday though, she walked in looking very sad.  Since she had been one of the key ones emphasizing how hard hemodialysis would be on them, she definitely came in with a heavy heart to tell us we needed to start Addie on hemodialysis.  By this point, though, we definitely saw it coming and had begun to make our own peace with it.

Dr Optimistic (or Dr S as we actually call her) went through all the reasons why we did not really have any other option.  It was pretty clear that we did not know how to stop her from leaking fluid into her chest and continuing to withhold food, run poor dialysis and leave a plastic tube coming out of her side were not appropriate long term solutions.  I will never forget Dr S saying to us that we needed to move to hemodialysis immediately because Addie was getting very sick on the inside and if we did not act soon, she was going to be backed into a corner that we could no longer get her out of.  Right now, we could still help her and get her sorted out but if we left it much longer, it could be too late.

Those words were exactly what I needed to sign all the consent forms for hemodialysis confidently.  I knew we needed to help Addie now and that this was the only choice we had.  After all, everyone knows you never put a baby in a corner...

We actually could not act as quickly as we would have liked though because Addie was actually too sick and compromised for anesthesia that Monday.  I always assumed you could be so sick you needed anesthesia,  I had only recently learned you could be so sick you were denied anesthesia.  Without good dialysis, all the electrolytes in Addie's body had become so messed up that it was not safe to put her under.  The plan was we would substantially increase her peritoneal dialysis, running it with greater amounts of fluid and for longer for the next day.  This would cause much more fluid to go into her chest but we had a chest tube in place to handle that.  And then once we got her levels acceptable, she would go to the OR and have the plastic hemodialysis catheter tube placed into her heart.  It would protrude out of her chest, in the area where you hold your hand over your heart to say the pledge.  Then, because she was needing good dialysis so badly, the plan was to take her directly from the OR to the PICU and go ahead and have her first dialysis treatment that day.  We were assured that there would be lots of doctors in her room and standing by during that treatment since we were not sure how she would respond to Hemo and especially having just been under anesthesia.

After that, we would remain in the hospital for a week or so for healing and monitoring.  And then we go home and return five days a week for a three hour hemodialysis treatment. That which I had so feared was about to become a very big part of our lives.  But, her home machine would no longer be used, there would no longer be fluid in her belly to get into her chest and she could breathe comfortably and sleep free of any machines.  It had its clear pros as well.

For the 48 hours after we formulated that plan, Addie got a lot of dialysis and the doctors measured her bloodwork carefully and we prayed and worried.  It was the worst part- knowing what was in store and knowing how many bad things could happen but having nothing to do but still in a small room and wait for it.  Finally, the waiting was over and Wednesday arrived.   They wheeled Addie off to the OR to get her catheter placed and we sat and waited.  Normally, we were waiting for the surgery to be over and the relief to set in that the worst was past.  This day though, we were anxious to get her out of surgery and our eyes back on her but knew that it would be a short-lived relief as we then went straight to dialysis.  This day, more than any other, was jam-packed with anxiety and uncertainty.  My mom, her best friend Becky and I spent the day together, trying to make small talk or read or tell each other stories, anything to take our minds off it all but the anxiety was so thick, it was as much a presence in the room that day as we were.

After a couple of hours in the OR, we got to go see Addie in recovery.  She was groggy, whimpering in pain and now sporting her large new plastic tubing.  It was nearly unbearable to fathom putting her through another traumatic event that day.  The emotional part of me wanted to unhook her, grab her in my arms and just run.  But, any time I thought about that, I remembered the metaphorical corner she was backing herself into without hemodialysis and knew that loving her meant holding her hand while she faced this and not whisking her away from it.  So, I swallowed the pain and fear and walked with as they wheeled her into the ICU room and placed her next to the machine that towered over her in size.  Addie was still drifting into and out of sleep so largely oblivious to the chaos in that room.  There were two dialysis nurses- one of whom was our good friend who was their peritoneal dialysis nurse and another nurse who would be running the machine with her.  Her PICU nurse was in the room and several PICU doctors were either in her room or just outside of it at all times.  Dr S also wanted there to be a nephrologist kidney doctor in the room for the entire hemo treatment and could not be there herself for it all as she had clinic appointments that afternoon.

So into the crowded room where we all were hushed and stressed, entered Dr Funny.  As with the other kidney doctors, I had known him close to a year now and always welcomed his stints as his jokes and cheerful approach lightened the atmosphere.  Back in the NICU when Max's breath holding spells were scaring the other docs, he would make quips about how interesting it was that I decorated one babies bed in pink and one babies bed in blue and they had each matched their surrounding in their own coloring.  He was no stranger to seeing us mid crisis as he had been on the terrible week when Addie was on the ventilator with heart failure so he did not seem particularly surprised to walk in and see me pacing the room in my yoga pants, sweatshirt and ugg boots and crazy hair thrown up in a ponytail looking stressed out and overwhelmed.  He didn't seem surprised that I had my mom and Becky with me, as he was used to my support system always being a few feet away.  He sat down at the end of the sad little hospital windowsill couch and pulled out a bag of cards.

We were surprised and intrigued as we saw him carefully take a letter on pretty paper and fold it, enclose a picture in it, stuff it in an envelope and then place address stickers and stamps on it.  When I stared at him quizzically, he explained that he expected the next three hours to be completely boring and uneventful so he may as well work on his holiday cards while he was sitting there.  It is hard to explain how much those words filled me with relief.  Here I had been convinced the next three hours were going to be horrific, filled with blood splatterings, seizures, monitors alarming and utter panic and heartbreak.  I had prepared myself for the worst few hours ever,   But he who knew so much more than me had instead expected boredom and some down time.  Surely if he expected blood to shoot from the machine, he would not have his precious cards out.  Surely if he anticipated having to leap up to do CPR or dramatic medical interventions, he would not want a lap full of cherished photos.  Certainly if he thought he was going to be making constant life and death decisions he would be pacing and scowling like me and not chuckling at his charming family's letter.  But he did not seem to be worried about any of those things.  And with that assurance, I exhaled, calmed down and paced at least a little bit less.

My mom and Becky, sitting there as bystanders to this scene and feeling quite restless, asked Dr Funny if they could help with the cards and so he handed one a stack of letters and pictures and the other a stack of envelopes and so the Holiday Card Assembly Line began.  As the dialysis nurses fiddled with the machine and watched the monitors and Addie slept and I paced, they sat and chatted and stuffed.  And that simple set up at once made the room seem less tense and less scary.  As other doctors would come in and out, they would check on Addie and see that she was doing fine and then go over to check out the holiday cards, smile over the adorable children, debate about which recipients' names had changed and make cheerful small talk about the upcoming holidays.  It was the next best thing to setting up a Christmas tree or placing Santa in the corner.  In a room of anxiety, a little bit of cheer had snuck in.

Three hours later, the cards had been finished and Addie's first dialysis treatment came to a completely boring and uneventful finish.  She had either slept or just tiredly glanced around.  The dialysis nurses diligently managed and watched the machine but the handled it so well that from the outside, there was no obvious issues.  Her vitals remained stable and the PICU team who were circling around found there to be nothing for them to do.  The bag of blood standing by in case she needed a transfusion remained untouched. Addie's blood was cleaner than it had been in weeks, and we had just faced and survived our biggest fear.  We were exhausted but also at peace that evening.  That which had felt completely insurmountable had just had happened and we were all okay.

I won't say that I was 'cured' of my fear of hemodialysis.  Nor should I have been.  We would learn in the months ahead that the dangers of hemodialysis are real and that one uneventful treatment does not garauntee the same for the next one.   I will never not fear hemodialysis for my children but my first exposure to it certainly removed my deep phobia of it.  My panic and dread of it was replaced with a much more appropriate caution and rational concern.  There would always be risks but if Dr Funny could waltz in with his holiday cards, certainly I could handle this and did not need to be on the constant look out for disaster.  It was clearly a success story for Exposure Therapy.

Chapter 26: Because Staples are for Papers and not for Lungs

During Addie's post Thanksgiving hospital admission, I described living up at the hospital like having chronic jet lag.  All concept of night and day dissolves when you have nurses and doctors who work night shifts and when you have a child who is not only going to have medical dramas during respectable waking hours. It was a completely typical night when a doctor would wake me up at 2am to ask me a random question about their medical history.   It also had that blurred confusion feeling that I always associate with jet lag.  The feeling of not being entirely sure where you are or what is going on and like the world around you is moving faster than your mind can work itself around.  Looking back on that three week hospitalization, I still feel the fatigue and confusion.  It is still difficult to put words to the highs and lows that happened constantly, at all hours of the day.  More than any other phase or any other hospital stay, this one tested the limits of my physical strength and intellectual capacity.

Twelve hours after Addie first arrived at the hospital, she was sleeping with a chest tube in place constantly draining clear dialysis fluid from her chest into a white plastic collection container that doctors and nurses would come stare at every few minutes with serious pensive faces.  She had a canula giving her oxygen since her flooded chest was making breathing more challenging.  Her dialysis had been turned off to limit new fluid entering her chest so as a result her food had been watered down and significantly reduced.  Exhausted from working so hard to breathe recently, she was sleeping oblivious to the concerned faces gathering around her bed all night and the hushed voices trying to work out a plan.  No one really knew how to procede because no one had seen this complication before.  They had no precedence to look to for direction.  So they continued to stare of the box collecting fluid and grimace and sigh a lot.  Laying on the couch in the room, it was nearly impossible to sleep myself as I was trying to make sense of their mutters and raised eyebrows.

A few short hours later and the day doctors came on and formulated a plan. Initially it had seemed inevitable that Addie would need to start hemodialysis, the form of dialysis that removed blood from the body and filters it through a large machine before returning it.  Because of her very small size, the risks associated with this were terrifying.  Such that every time a doctor mentioned the word 'hemodialysis' I envisioned a big terrifying black cloud of doom entering the room and immediately darkening the conversation with fear and dread.  Raining down threats like 'seizures', 'multiple blood transfusions', 'infections', 'loss of ability to transplant', 'high mortality rate'.   Any light in the room would be sucked out with just the mention of hemodialysis.  So when the doctors came in Tuesday morning with a plan that would avoid hemo, I was all ears.  The cardiovascular surgeon believed he could go in and find the source of the 'leak' that was allowing the fluid into her chest and remove the route for that to occur.  He said it would involve a couple of weeks of recovery in the hospital but he thought she could stay on her peritoneal dialysis at very gentle low settings in the hospital with the chest tube in place in case any fluid did accumulate.   Compared to what we had been fearing in the past few hours since this all erupted, this sounded like a great plan to us.

The next day, Addie was taken to surgery and it was the scariest surgery we had experienced in part because it involved her lungs but largely because the stakes seemed so high.  If the surgeon could repair the area, she could eventually go home back on her machine and this whole disaster could be put behind us.  If, however, he was not successful we all knew that the hemo black cloud would come storming in, terrifying us with its ominous risks.  My mom and I sat there waiting for what seemed like an eternity for the surgeon to come talk to us.  When he finally came out, he was smiling.  He felt like the surgery was successful.  He explained that he put staples in Addie's chest, closing off the area where the fluid had been accumulating.  He stapled the outside of her lung to the wall of her chest cavity, removing any space for fluid to collect.  He was happy with this outcome and presented us with pictures and a little baggie that had several example staples so we could see what was inside of her now.

It was a strange thing to be thrilled about but my mom and I were overjoyed with relief.  We clutched our little baggie of staples and truly believed that those little pieces of metal were going to be the much needed solution to this nightmarish dilemma.  We cheerfully passed on the news to our family and friends that Addie was going to be okay.  And then we prepared ourselves for a reasonably lengthy hospital stay waiting for her to recover.  But, we were okay with that because she was going to be just fine.

Over the course of the next week, we continued to grasp onto our hope even when her 'getting better' did not seem to be happening as quickly or as seemlessly as we had anticipated.  The surgeon warned us that until everything was completely healed, we may still see some fluid collecting so when a couple of days after the surgery we start seeing the white box slowly filling up again, we tried not to panic. Once again the nights were marked with bright lights and concerned faces and staring at a fluid as if through sheer watching of it, we could all will that fluid to go away.  Since she was still collecting fluid in her chest, we had to give her less and less dialysis which meant we consequently had to give her less and less food since we could not effectively clear waste.

Five days after her surgery, I tried to go back to work for a few days.  I figured we were just waiting so I may as well try and conserve some of my time off for transplant or another drama down the road. I stayed the night at the hospital, left around 5 in the morning, taught during the day and then drove back out to the hospital.  Every other night my mom would stay the night instead so I could have a break from the concerned stares and hospital buzz that continued all night long.  I made it through four days back at work before I recognized I simply could not do that.  I was far too exhausted and far too worried.  The fact that Addie still did not seem better was weighing heavily on us and she was starting to become very weak and sick from the lack of food and the poor quality dialysis.

During this waiting phase, I really learned how incredible my daughter was.  She was enduring awful circumstances, stuck in a hospital, being woken up at all hours for chest x-rays and to be stuck for blood.  We were giving her barely enough food to survive on and a quick glance at her bloodwork and it was clear she was very sick inside.  And yet if you saw Addie, you would never suspect as much.  She would sit up and play.  She rarely cried and was happy to sit on our laps or play with the new toys we were bringing in to try and cheer her up. She was often babbling and even smiling.  She was in the ICU surrounded by extremely sick kids, many of whom were completely sedated and on ventilators and Addie was dressed in her Christmas attire, playing and even smiling at those who walked in.  She was something of a celebrity in the PICU, nurses would come by just to see her and smile.  Doctors would come in and comment that she must be doing better because of how good she looked only to get her bloodwork back and be taken aback to see how sick she still was.  I learned in that phase that my daughter is absolutely the toughest, bravest person I will ever know.  She has a strength and resilience I could only strive to match.

Ten days had passed since her surgery and nearly two weeks since she came in and the kidney doctor decided it was time to move forward and hope that she could handle it.  Although she had been draining some fluid still, it was far less so he was hopeful that if we clamp the chest tube and then soon after remove it, she would be fine without it.  He really felt like she needed some proper dialysis and proposed we put her back on her machine so she could get better clearance and more food and start to feel better.  And if she was on her machine and not requiring the nurses to perform the slower dialysis, she could also leave the ICU.   So after 10 days of just sitting and watching and waiting, it was decided that we would now change everything at once.  We would clamp the chest tube in preparation to remove it soon, move her from the ICU to a normal room and put her back on her machine.  If it went smoothly, she could be heading home in a couple of days.

We were nervous about all the changes but more excited than anything else.  We were impatient with waiting and so ready to get Addie back home so we felt cautiously optimistic that Saturday evening as we set up her machine and waited.  It was all very bizarrely timed that after days of doing nothing, we were now making all these changes at 9pm on a Saturday night but there we were.  Al and Max came up and wished Addie luck and then she and I settled in for the evening.  One of our old NICU nurses came up to visit us after her shift and she and I were chatting when it all very quickly went wrong.  It started with her machine beeping and alarming angrily.  It was claiming it could not seem to drain the fluid back out of her abdomen.  I was stressing over the machine trying to figure out what was wrong with it when Addie starts fussing and getting really irritable.  Then we notice that Addie's shirt is soaking wet.  The chest tube itself is clamped so it cannot remove the fluid which seemed to have quickly moved to her chest so instead the water is just pouring out of her skin around the chest tube.  I stood there horrified by the machine yelling at me while my baby girl's chest had been turned into a geyser and I am stuck on a Saturday night with no normal doctors around and out of the PICU with a normal nurse looking shocked and panicked with no idea how to handle this.  I was so thankful Lori our NICU friend was there keeping me calm and helping to soothe Addie while i had to contact our kidney doctors and try and problem shoot this disaster.

Within a couple of hours, the machine had been turned back off.  We had changed about 10 dressings and tops over her leaking chest and cut her food back.  My mom had driven down to be with us and we sat there late that night completely discouraged.  Two weeks into this awful hospital stay and we had made no discernible progress.  Our sweet girl had endured a major surgery and weeks without real nutrition and it seemed we had very little to show for it.  I don't think we had ever felt quite the same level of defeat as we did that night.  It seemed like an eternity had passed since we enthusiastically clutched to our bag of staples and believed everything was going to be okay.

With the benefit of hindsight, I think that the two weeks of exhaustion and confusion was necessary in its own way.  It was preparing our hearts to accept what was in store.  Two weeks prior when they had mentioned hemodialysis I was filled with dread and determination to avoid it.  I was convinced there had to be better alternatives.  But sitting there that Saturday night confident that we had tried our very best and seeing firsthand how utterly unsuccessful we had been, my heart was already softening to moving towards hemodialysis.  The two weeks of waiting, watching and feeling disappointment may have been exactly what we all needed to face what the next week had in store.  It may have been the only way that when our doctor came in Monday and told us it was time for hemodialysis, we saw a rainbow instead of a black cloud.

Embracing a Blank Canvas

Four years ago as my belly grew and my ankles swelled, my dreams and visions for our future were also growing exponentially.  A lifetime of hopes and plans were forming into a tangible picture that revolved around happy healthy chatty active little boy girl twins.  It was a beautiful picture and I was sure it was what my life was meant to look like.  It was not an overly detailed picture but it showed a happy normal family.

When Max and Addie unexpectedly arrived nine weeks early, I had to sketch in a few additions to my picture.  Same beautiful dream, I would just add in a short NICU stay off to the side.  Three weeks later when we realized they were going to spend years on dialysis and require kidney transplants, it felt like my picture had been torn to shreds.  I cried and grieved for my tattered picture.  And then as I wrapped my head around this new obstacle, I got out some duck tape and tried to piece it back together.  Okay, it was going to take time and be a little more complicated than I had thought but I clung to my wrinkled taped up diagram and it gave me the motivation to get the kids transplanted.  I was determined.  I would not let my dreams sit in pieces, I would tape them back together.

Of course in the process of getting kidneys and trying to arrive back at my planned destination, things got even more complicated.  We were told the babies had severe hearing loss.  The tears I cried smeared the ink on my precious picture.  But I pressed on, sketched in some hearing aids and was convinced I was back on track.  We endured meeting after meeting telling us about all the things Max would not be able to do and I really had to face that his life was not going to look like the little boy in my picture.  And I made my peace with that.  I tore off part of my picture and I allowed him to have a new fresh corner.  I accepted that I was going to have a special needs son with cerebral palsy and that life with him was going to look very different.  And it took time, but I made peace with that and reached a point where I was no longer sad that part of my picture had to be replaced with a new fresh picture.  But, part of my acceptance came with the condition that the rest of my picture needed to stay in place.  I would have a son with special needs and that would be part of our life and then Addie would have a normal and typical life that looked like my picture and Al and I would fulfill our need to have the 'normal' expected parenting experience through her.

And I don't think there was anything specifically wrong with that dream and vision.  I feel like it was basically what all parents dream of and expect- a happy, healthy, talking, walking kid in normal classes, doing normal kid things.  I don't think my dreams were WRONG in and of themselves.  But there reached a point where clinging to my ripped, erased and scratched through picture was keeping me from discovering something better.

On Thursday as we sat at the Autism Center and they told us that they were diagnosing Addie with autism, I sat there with my metaphorical picture always in my head and I felt sad.  For plenty of good reasons like worrying about whether this would make life more challenging for Addie... but I also felt sad because I could not figure out how to cram one more thing into my already so altered picture.  I felt daunted by the task of getting her in enough therapies, but I also felt daunting by how was I going to maintain a 'normal life' and fulfill my vision as a 'normal mom' now with another diagnosis in the mix.  Among all the emotions I was feeling was my fear of losing that picture.  I was so convinced that the picture was beautiful and perfect and good, even though in reality it was so covered in smeared ink, eraser markers, crammed in additions, and thick layers of duck tape.

It took me nearly a week after getting that diagnosis and of staring at my picture and trying to figure out how I would fit this new reality into my old vision and then of feeling sad about the loss of another part of my picture before I finally grasped what God has been saying to me for a long time:  Throw Away the Picture.  Throw it completely away.  And start over.  Let go of the expectations, dreams, images and plans you had for your life and your family.  And embrace new dreams, plans and pictures.  Don't squeeze new blessings into old plans because they never shine as brightly when they are tucked behind tape crammed into a corner of an old vision.  Take a fresh blank canvas and create an even more beautiful picture- not of the kids and life you had envisioned but the precious ones you have been given.

And finally I got the message and realized that as long as I was holding on to what I thought I wanted I wasn't allowing my life to become something better.  So it took four years and more diagnoses that I could even list to finally throw away the picture I had of what my  life and my role as a mom was going to look like.  And in its place there is now a beautiful, undamaged, blank canvas. Now there is more than enough room for a precious little girl to have autism and still be everything we could ever want.  There is room on my blank canvas for a little wheelchair, a breathing machine and a revolving door of nurses and therapists.  On my blank canvas, I can become an awesome special needs mom without worrying about whether I'm still doing the 'normal' mom things I thought I needed to do or be.

And once I finally did let go of my tattered picture, what I felt was not sadness at all but great relief.  And excitement.  Instead of worrying about how to fit my life in,  I was now free to just see how my life would turn out.  When I was constantly editing my picture, I was preventing God from really painting the picture He had envisioned.  I thought I was protecting something important but in reality I was preventing something amazing.

And so here we are.  I have no idea what all the future entails but I know that life with a son with severe cerebral palsy and a daughter with autism and hearing loss will be challenging, rewarding, joyful, heartbreaking, hilarious and exhausting all the time.  And I'm committed to figuring out who I am, both as a special needs mom, and as a person outside of that role- as a wife, daughter, friend and teacher as well.  I started a new Facebook page devoted specifically to my role as a Special Needs mom because that is clearly going to be a huge part of who I am and because I genuinely hope and pray that our journey can bless others- those going through something similar, or just those who like seeing adorable kiddos experiencing real miracles.  I also separated the page from my personal page because although I totally recognize that being a special needs mom is going to be a huge role in my life and clearly one of God's greatest plans for me, it is not going to be ALL I am.  I want to maintain balance in my life and still find ways to connect with family and friends just as me and not as 'Mom to kids with CP and autism'.  So I'm going to try and ensure that as I figure out this new picture, I figure out how to be the fighter and advocate that Max and Addie and the special needs community needs without completing losing the other roles I value in my life!

I wanted to share about my experience and how this new diagnosis has in some ways changed things and in other ways just helped me let go of something I should have done a long time ago.  Partly just because I have always been open in sharing not just our medical updates but about the emotional journey it has taken me on.  But also partly because in some ways this realization has everything to do with special needs kids and in some ways it is something I think everyone goes through in some ways at some time.  Life rarely looks like we expected.  Dreams change, complications arise and our roles and expectations adjust.  And sometimes we get out our duck tape and press on.  And other times, we throw out what was and embrace a blank canvas and look forward to seeing a new beautiful picture come to life.