Last night we went to Primary Children’s Hospital to visit a young girl who is battling cancer. She was one of Mitchell’s classmates the year he died and held a special place in our son’s heart because she was always so kind to him.
Mitch often made references to Addie. I never met her, but I knew of her and how much Mitch appreciated her friendship. Natalie tells me that when she would pick Mitch up from school he would often talk about her and sometimes point out the window of the car and say "Look mom there's Addie, she played with me today during recess." Another evidence that the little things are indeed the big things. It was never lost on Mitch that she could have ran off with the healthy kids and left him behind pursuing any number of social agendas. Yet, she often chose to sacrifice regular play time to be with Mitch instead. I don't know if this young woman realizes what a blessing she was to our son.
Mitch loved Addie; and by the sound of her voice and the things she said, she really loved him. Two childhood friends who taught each other what it means to be love and serve. I wish I could have been a fly on the wall when Mitch was alive so that I might have seen these two friends play outside during recess or giggle at a game of UNO when it was cold outside. My eyes well up with tears when I think about the tender mercy she was to our little boy.
Last year I posted an entry entitled “Nightfall” which was an account of the moment we realized Mitch had passed away. I described the pain and sorrow of losing our son and how the world was especially dark. I described how it wasn't until our spiritual eyes adjusted to the darkness, which darkness was beyond pitch, that we truly began to see. Only in the darkness did we begin to see the stars … little flecks of light, tender mercies that were given to our family from a loving Father. It didn't take long before we began to see the connections between these tender mercies and they began to serve as Heavenly constellations to guide our way. Evidence we are not alone, nor are we forsaken. I made a short video with an excerpt from that entry: vimeo.com/81861739
Along this journey of grief and darkness, I have also discovered the more we look the more we can see. Isn't that the point of anything we're meant to search out and study? Our eyes adjust, our mind finally understands and our souls begin to learn things far beyond the scope of man.
So when I think of this sweet girl and what she did for our little boy, I see an exceedingly bright star. I see a tender mercy from a loving Father, an evidence He was never very far. That heavenly current of which I spoke a few weeks ago brought these two children together so they could learn to love and grow. For that, I am eternally grateful.
Anymore, I don't know that I know much about goodness or courage. Because when I see these young people face what I only witnessed as a spectator; to see them face death and hardship with such grace and courage, I am humbled to my core. I see what I want to become, and so much more.
I don't know how to gather the words to describe how I felt as we left the hospital last night. My heart was overflowing with gratitude and a deep sense all is well. All is well.
To Addie, thank you for loving Mitch and lifting his little heart. I think I see it now … perhaps you were meant to know each other from the very start.
Forever and more, dear Addie, you have our grateful hearts.
You can visit her page here: https://www.facebook.com/pages/Team-Addie-gofightwin/720147784689212
Mitch had been home about a week and a half and his 5th-grade teacher, Mrs. Masina (on the right) came to visit. With her was also a teacher at the same school, Mrs. Edwards, who was a friend to Natalie. I sat in awe of these two women who took time from their personal lives to show Mitch they cared. They were so sweet to him; although they gave Mitch some thoughtful gifts, the greatest gift they gave him was their love. At the end of the day, things break but love lingers. Love lasts.
As Mrs. Masina left she turned to Mitch and asked if he wanted some homework to do. He smiled softly and nodded as if to say “no thanks”. Everyone chuckled but inside I wished he had homework – for that would have meant he was going back to school and that there was hope he would recover. But he was not ever going back to school and the hope he might beat heart failure and DMD was a distant dream far from reach.
As we left the hospital the senior cardiologist said with tears in his eyes, “Your job is to take him home and love your little boy with all that you've got. You don’t have much time.” And love Mitch we did, the very best we knew how.
As these two beautiful women left our home I remember feeling overwhelmed with feelings of love and appreciation for the good people in my son’s life. I was grateful for all of the teachers Mitch had, for they were all loving and kind. But his last teacher, Mrs. Masina, was a special tender mercy in more ways than twenty. She will forever be close to our hearts because of the way she lifted our little son’s heart.
I can’t help but be grateful for what the truly great teachers teach us; the ones who beautifully balance intellect with heart, mind with soul. Mrs. Masina is just such a teacher. I saw a spark in Mitch that I hadn't seen before – a deeper belief in himself – and I believe that spark in my son was because of the way she taught him. What good is knowledge, after all, if we forget what it means to be human? To be human is to be vulnerable, real and feeling – it is to accept ourselves and others as we are, broken and imperfect, and then strive to be a little better each day in our own way. That is what the great teachers teach us.
Mrs. Masina did just that. She not only taught Mitch – but she taught me that there is much more to life than academics. I am grateful for the gentle teachers of the soul: Mrs. Masina and Mitch have been my teachers and I am forever in their debt.
One thing I've learned is the death of a child is emotionally catastrophic. I know of no greater pain. Now that Mitch is gone our family has grueling homework of our own: the homework of learning to live with grief – which, as far as I can tell, is the work of a lifetime. There are no shortcuts. There are no opt-out tests. Every day is a lesson on love and loss, healing a little, crying a lot, and learning to move forward however fast or slow our hearts will take us.
Because love lasts, so does grief. So long as I love my son I will grieve his loss … and what a terrible grief it is. But grief is the price of love and love is worth every tear, every shard of my broken heart, it is worth the agony of loss. The love in my heart hurts me and heals me all at the same time. I am learning that to hurt is to be human and to heal, even if only a little, is heavenly.
Last Spring my wife and I drove to Mitchell’s elementary school to collect his personal and school belongings. The air was cold and the sky was wrapped in a dull, grey blanket of clouds that seemed to match the mood of things. As we approached the school I reflected on all of the amazing teachers and staff who had done so much to support and love our family and I was overcome with gratitude. There was no coldness in my heart.
I was doing okay until his teacher reached for a file box that contained everything that was Mitchells. In an instant, I was overcome by strong emotions and I did all that I could to hold back a massive surge of tears. Tears came anyway. My hands trembled and my body quaked as I quietly gasped for air. The pain of this moment was palpable.
There, in a cardboard box, were items that to a stranger would have no value. But to us, its contents were priceless: a plastic container filled with pencils and crayons that Mitchell collected, a name tag, pieces of paper with his handwriting … a potpourri of elementary school artifacts that to me were more valuable than all the treasures of ancient Egypt.
As Mitchell’s teacher (Mrs. Masina) handed the box to Natalie she gave her a hug. I stood a few feet away fighting back the tears, doing all that I could to keep composed. All I wanted to do was curl up in a corner and sob. This compassionate teacher described how much Mitchell meant to her and that she loved him – it was clear that she was hurting, too. With a broken voice she admitted handing the box over to us was difficult because she loved Mitch and she felt like she was giving part of her heart away.
After Mitchell passed away she had each student write down their memories of him and carefully laminated, then bound the pages into a book. Each page was thoughtfully authored from his peers; each page was personal and authentic. Mitchell was universally referred to by his classmates as kind, deeply caring, fun to be with and humble. Reading through these hand written letters and drawings from 5th Graders, I learned quite a bit about Mitch. I also learned a lot about 5th graders … especially what they notice. I was reminded of one of my favorite sayings: “Oh what a tangled web do parents weave when they think their children are naive.” In reading their observations it was clear these young children were reflective, thoughtful and keen observers. These young students were my teacher and I have been taking notes.
After we collected Mitchell’s desk belongings we went to the front office to get his scooter, which was charging in the Principals supply room. As I unplugged his scooter I noticed a collection of sports day ribbons hanging from his handlebar, evidence my little boy strived to achieve and won. He hung those ribbons from his scooter as a reminder to himself he could do hard things. I was so proud of Mitch and wished he was sitting there so I could hug him and tell him what a great boy he was. But he was not there and nor would he ever be; never had a chair seemed so empty.
This painful but gentle exchange between Mitchell’s mother and school teacher was a gentle reminder education is more than academics – that knowledge without humanity is hollow. The best teachers also teach what it means to be human – not by what they say, but who they are. Mrs. Masina taught humanity and love beautifully … and so did her students.
So here we stand on the other side of Mitchell’s education … and suddenly we are students of the hardest lesson life has to teach. Our homework, invisible to the eye, must be worked out in quiet of the mind and heart. What we take and learn from our hardships is engraved in our soul and shapes what we become. I get the impression the homework of grief will take a lifetime to complete.
When I look at this photo and see an empty-handed mother leaving our son’s school, I am reminded there is a classroom none of us leave alive.
Sometimes we are teachers … but we are always students.
Mitch nervously reached for his mother’s hand, unsure of the adventure that stood before him. Natalie whispered, “It’s okay, Mitchie, mommy will help you.” This was Mitchell’s first day of pre-school and his first step into the brave new world that lay just beyond our fence. Mitchell’s little Spiderman backpack, tenderly filled with his blankets and favorite treasures, would bring him comfort while he was away from home.
It isn't uncommon for children with DMD to need a little boost at the beginning of their school career. Little Mitch attended a pre-school for kids who needed that special boost. It didn't take much for Mitch to catch up and become mainstreamed. But his first day was delicate.
Natalie wanted Mitch learn independence, so she arranged to have the school bus make a special trip to pick him up. Each day she would help Mitchie board the bus, get his seat belt on and then kiss his face. Mitch would smile and say “Bye mommy.” Every single day, as the bus left our neighborhood my noble wife would jump in her minivan and shadow the bus that carried her precious cargo. She could have easily drove him to school each day and avoided the hassle of boarding and un-boarding – or she could have had the bus bear the burden altogether – but Natalie traded inconvenience for love.
Because climbing stairs was difficult [almost impossible] for him, she would greet Mitch at either stop and lovingly help him on or off the bus and into class. But she didn't encourage this routine to help him transfer from bus to pavement (others could have helped him with that), she did this so Mitch could learn to believe in himself – to know he could do hard things. That he was always capable of more.
I marveled watching Mitch hold his mother’s hand on his first day as he took unsure steps toward a new adventure. But even more, I marveled how Mitch became a little more confident and surer with each passing day. That was the gift she gave our son.
Within about 7 years of this photo Natalie, with a broken heart, would hold Mitchell’s hand before he passed away: loving him, encouraging him and letting him know she was there – like always. At my son’s bed I heard her say those same words she lovingly said on his first day of school, “It’s okay, Mitchie, mommy will help you.” This time Mitch would take nervous steps toward a brave new world, just beyond a different fence. Because of his mother, who traded inconvenience for love, Mitch knew he could do hard things.
Today is Mitchell’s birthday. He would have been twelve. When I think of all the gifts he was given as a child, there was none so great as what his mother gave him. The gift of confidence and assurance. The gift of love. For those are gifts money cannot buy – and oft purchased by inconvenience and love.
We will be doing something sacred in honor of Mitch this morning. Tonight we will go to The Olive Garden as a family and enjoy his favorite meal. Though my heart is broken and heavy, I am grateful for my son and my wife – who taught me how to love and so much more about life.
When I look at this image I can’t help but be reminded of the meaning of life. I can see the Father of my soul do the same things to me: from holding my hand as I take nervous steps into the unknown, to the whisper “It’s okay, I will help you” and “You can do hard things.” I sense a greater purpose to everything.