A Letter to Max - Our First Year Without You

Dear Max,

I can't believe it has been a whole year without you. A year without seeing you, giving you hugs and kisses, telling you secrets and just holding you. Some days it feels like we've been apart for so much longer...other days it feels like it all just happened.  You took a piece of my heart with you when you left, and I'm forever changed.

It has been hard navigating life without you here.  We miss you. We miss planning events and outings with you. We miss creating memories with you here. Every time we go on a family trip or adventure, we try to have fun and make memories but it just isn't the same without you, and it always feels like someone is missing.   We miss playing with you and reading to you and singing to you. We miss dancing with you.  We miss waking up to your wide eyes and messy hair and we miss kissing you goodnight and tucking you in.  We miss talking about you. We still do...we just have to lean on our past memories together - it is hard not being able to share anything new. We miss YOU being here every second of every day.

BUT we don't miss Krabbe...your suffering, questioning if what we were doing was correct, the fear of sleeping through an alarm or causing you any pain. I'm sorry you had to endure it all. You were extremely brave. You taught us a lot about priorities, fighting for what is right, living in the moment, unconditional love and teamwork. We pushed for answers, fought with insurance companies, tried as hard as we could to expedite everything you needed - even when companies were taking their time or not meeting your needs quickly enough. You introduced us to some amazing people and families who we may never have met. You taught us how fragile life can be, but how much can be accomplished in a short amount of time with focus and drive. You gave us a community who still checks on us, writes us, cheers us on, sends us gifts, and supports us. We became a stronger family becuase of you. We individually became better because of you. But we still have a lot of work to do to make the pain you endured...the long days and nights, the uncomfortable times mean something. You've all made us stronger and better, but I'm sorry you had to suffer through it. It isn't fair that you had to endure all of it. It isn't fair that our state chose not to test. It isn't fair that if we had lived in New York or Missouri at the time, that we may still have you. It isn't fair that we didn't even know that Krabbe existed and didn't know what questions to ask. It wasn't fair that the specialists we trusted told us there was no hope and when we did find a doctor who gave us some - we were late in the process. But life works in mysterious ways and through all of the "unfair" moments, you provided us with a lot of insight about ourselves and a lot of insight on how we can help others. You are a hero.

Emma talks about you a lot. She says you are still with her, so thank you for finding a way to keep your memory alive to her. Thank you for helping her not to forget your incredible bond.  She still wants you here. She tells me that she hopes she has dreams with you in them because she is concerned that she hasn't had many. She asked me how long you have been gone. She's told me it isn't fair that you get to be in heaven and we have to stay here. She says it isn't fair that she doesn't have a brother she can play with. She says she can't remember things about you and bursts into tears. She wishes you were still here to play but she's glad that you don't hurt anymore. It's hard to comfort her becuase it breaks me too in those moments, but please keep sending her messages and ways that she will remember you. She needs to remember you.

We celebrated your third birthday this year by taking Emma to the zoo and we sent you some balloons and had a cake in your memory.  We gifted ice cream to a random family to share the joy that you brought to us with them. Emma still says you are two - you will probably always be 2 to her.

You continue to make a difference and your legacy is living on through an amazing art exhibit focused on bringing awareness to rare diseases. It is called Beyond the Diagnosis. You are the only child in the exhibit with Krabbe. The painting was at the FDA building this past spring and will be influential at so many other important locations (especially this fall). It is beautiful and my wish is that we get to see it in person some day. It perfectly captures your spirit beyond Krabbe, and it is bringing awareness to the disease to hopefully help future children.  You've also inspired others to talk about rare. Two people we know, have given presentations at their schools on Krabbe, but more importantly on you...that has resulted in making future nurses and doctors aware of the disease. Getting them to look beyond the disease, and show the impact on a family and on a child. People still wear your wristbands and shirts in hopes that others will ask questions and we can start conversations (and share everything about you). We still have a lot of work to do at the local level but we'll keep moving forward and keep your memory alive.

Dad still sees daily butterflies on the tennis court or driving places. He thinks of you often but he's quiet about it. I know he still hurts a lot. He supports Emma and I and helps us through some tough moments. I still see butterflies but not as often. I wish I saw them more. You seem to speak to me through music and I listen to the speech that I gave at your celebration very often because it reminds me of the moments with you and all of the amazing memories we made together. Please keep finding ways to send us messages - we still need to hear from you.

This first year without you was a tough one. But we somehow got through it. We continue to try our best to move forward with life, find laughter and joy, and we hope you are watching from a distance. We'll forever miss you and will continue to talk about you and share what you offered to us. You taught us how to live - so we'll do our best to keep living until we see you again.

Love you always and forever,
Mom

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