A letter to Max on your 5th Birthday

Dear Max,

Today would have been your fifth birthday here on Earth. You would have been graduating preschool and entering into kindergarten this year. It is hard to imagine you as a 5 year old - I only knew you as a 2 1/2 year old. I wonder how your personality would have changed and what your interests would have been. I know that you would still be following your sister everywhere and enjoying each other's company.

Emma has had a hard year without you. She's brought you up many times and told me that you came to her in a dream. Thanks for visiting. We've had some emotional moments that we've worked through with Emma this past year. She tells me that she gets mad at herself for not remembering you when she is at school or playing tennis, or even some of the past events we got to do together. Thank goodness for our pictures that help us retain and remember those wonderful memories with you. The one organization who has continued to help remind her of you is  HopeKids, who didn't turn us away when you had to leave, but rather embraced our family and has continued to support us. Every time we get to go to an event - we talk about you in some way or remember you. I am so grateful for them and what they continue to offer to our family. We have met and continue to meet such amazing families and people who volunteer their time, fund raise and support families who really need it. And we give back too. Emma even helps raise money each year with her lemonade stand (that she loves to set up with her friends and neighbors who continue to think of and honor you). Emma says she needs to cry every time she thinks of you but I'm trying to encourage her to smile. I can't always follow my own advice but the thought of you fills my heart. I miss you so much and always will.

I don't see as many butterflies anymore but maybe we are beyond that phase. I do think of you through music and have some mornings where I cry my way to work just remembering you through the lyrics of a song and then I pull myself together and move forward with the day - you would have wanted me to. I heard a song the other day that I needed to hear. It helped me resonate with missing you but also reminded me that you were here for a reason - a reason that I needed you...a reason we all needed you. You helped me learn and prioritize a lot in my life. While I wish every moment of every day that I still had you with me, I thank you for those lessons and for helping me while you were here.

The song is "Broken Halos"by Chris Stapleton. The song was inspired by people who passed away before their time. When these lyrics come up in the song, I always think of you and my eyes tear up. You taught me so much and in thinking about our time together, you continue to remind me of those lessons.

Seen my share of broken halos
Folded wings that used to fly
They've all gone wherever they go
Broken halos that used to shine

Angels come down from the heavens
Just to help us on our way
Come to teach us, then they leave us
And they find some other soul to save

It was funny because when this song came on, it immediately became a gift from you...your dad played Chris Stapleton on and off for the month that we were in the hospital with you over your birthday...when you turned two...and fought so hard to be with us a few more months - thank you. Dad is good - but he misses you too. I know he often wonders what you would be like today.

Emma's idea this year was to celebrate your 5th birthday at the local Butterfly Experience because that was one of her favorite memories with you. You both had butterflies land on you while you were there - and we had a really good day at that event...this time will be different but we are all looking forward to going. It made it really special coming from Emma.

The painting of you that is in the Beyond the Diagnosis exhibit continues to travel the country. It will be at the Albert Einstein College of Medicine in New York February 11th - March 15th. I know the spirit of the painting will help influence and move people who can make a difference. This painting is such a living gift of you and I'm so grateful that this continues to be a part of our world.

Thank you for finding a way to reach us and live on through us. I need your help some days to make that happen but somehow your spirit touches me and I find a way. I know that Emma's day off from school today (on your birthday, in the middle of a random week in February) is not a fluke...there are too many of these coincidences that you continue to have a hand on. I just know it.

We miss you every day and can't wait until our spirits reunite one day. Until then...we live in the moment and know we are one day closer.

We love you, Max.

Happy 5th Birthday to my favorite boy.

Love,
Mom