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.