To My Son Who Passed Away 1,036,800 Seconds Ago

We had known for five years our oldest two sons, Landon and Blake, would die.

In 2010, when Landon was 4 and Blake was just 6 months old, they were diagnosed with a terminal and incurable genetic condition called Sanfilippo syndrome. Because their little bodies are missing an enzyme that leaves them unable to break down complex sugar chains, their cells can’t remove waste material, which leads to brain damage and severe cognitive regression. It takes away their ability to walk, eat and, inevitably, takes away their lives.

It was devastating, but we decided to give our boys the fullest and happiest lives possible in spite of the 10- to 15-year life expectancy the doctors gave them. We went on vacation, celebrated birthdays and holidays, visited Grandma, ate cookies for breakfast and stayed in pajamas all day just because we could. We crammed a lifetime of happiness and memories into the short time we had, because we knew someday all that would be left of Landon and Blake would be memories. And then it happened.

September 9, 2015, felt like a perfectly ordinary late summer morning. Nothing felt different or out of place. But that morning, Landon slipped away silently in his sleep into eternity. Although he had a terminal illness, his passing was sudden and unexpected. He had been doing well. Even in the Sanfilippo world, 9 years old is young. I can honestly say I never considered Landon not seeing a double digits birthday. My life was shattered.

In all the years I contemplated what it would be like to lose my children, I never considered the physical pain. I could never have imagined just how much this would hurt or how much it would change me in every way. The constant, physical ache deep down inside. It’s there every moment. Even during times when I feel “OK,” I feel like I have aged 30 years in the last two weeks. This pain is all consuming, even when I’m not crying, even during moments I can smile, even when I’m distracted.

I don’t think this will ever hurt less. I will never “get over it.” I assume in time, I will just find a way to live with it because it will feel “normal.” Part of me is gone. Part of me died with my son. There is no sugarcoating that, there is no making it better. I will mourn his leaving this world all the days of my life. Even when everyone else has moved on, even when I’m able to find happiness in my own life again, I will mourn.

And then, when things begin to fall into a “new normal” and we have learned to live again, we will lose Blake. And really, it could happen even before we find our new normal because in the last two weeks, I’ve learned that even if you prepare for how you think things will go, it’s all just a guessing game. Life is random, unfair and cruel.

But it is also beautiful and full of amazing things that make the pain and the unbearable ache of loss worth every second. The beautiful memories I have of my Landon and the beautiful memories I still have the opportunity to make with Blake before he leaves this world are worth any pain, any price.

And to cope with the ache of having a piece of my heart leave this earth, I talk to my son. I will always talk to and about my son because he will always be my son. I write him letters. Letters like this one:

Landon,

1,036,800 seconds have passed since you left this place for the next.

And every single one of those seconds has felt like an eternity. Every single one of those seconds has ached from the depths of what’s left of my deeply bruised soul. From the second I open my eyes until the second I close them at the end of each long, long day, I am flooded with the beautiful memories of you and the unbearable pain of having to try and move forward. I am paralyzed by your absence. This world feels darker without you.

Your leaving has left a hole in the lives and hearts of so many, many people. You touched more people in your short stay with us than I ever could if I lived to be 1,000 years old. You made people want to be better, love harder and live happier. Despite the agonizing pain, we have had laughs and smiles, albeit through tears, of the amazing years we spent with you. Thank you, my sweet love, for leaving us so many beautiful memories. We will need those to be strong, to move forward and to make you proud. And I will spend the rest of my life doing my best to do just that. To make you so proud and to honor your precious and amazing memory.

I’ve always hated cliches, but there never was one more fitting than, “If love could have saved you, you would have lived forever,” because you, my tornado child, are so loved. So very, very loved. And that love will keep us going, even when it seems impossible.

I love you, to infinity and beyond,

Mommy

Follow this journey at A Special Magic.