The circle of (grief) life

Robert Kondo - Beat Board: Goodbye Andy - Impaginazione di Jason Katz e John Sanford - TOY STORY 3 (2010) - Dipinto digitale. ANSA / UFFICIO STAMPA PIXAR +++NO SALES - NO ARCHIVE - EDITORIAL USE ONLY+++ +++FOTO DA USARE SOLO IN RELAZIONE ALLA MOSTRA+++

It has been 9 months. And this seems so significant to me for some reason. Landon left this life on the 9th day of the 9th month in the 9th year of his life. And here were are 9 months later, still living in disbelief at times, but none the less still living. Still moving forward and still loving our boy as fiercely as when he was here. Still carrying his memory and his legacy, still sharing his life, and of course, still missing him. And those are things we will always do. Always with a heart that isn’t quite whole, but always with love, with joy, and with appreciation for having had someone so outstandingly beautiful in our lives to love and to miss.

The grieving process has been….strange. And unpredictable. And a million other tiny little things. Continue reading

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Down The Rabbit Hole

rabbit hole

It has been quite sometime since I blogged. So much has been packed into the last few months, and I have yet to blog about Landon’s fantastic trip to Disney World, which as I said, was fantastic and memorable in every way. But right now, my mind isn’t in a place to do that entry justice. My mind is in a place that I desperately want out of.

This year has gotten off to a rough start for our MPS community. In the first 19 days, we have lost 2 boys, another is fighting for his life, and a beautiful young lady may have just had her last birthday on Earth, as her body is tired and nearing the end of its fight. As parents of these children, I know that we all take the lose of and struggles of our kids very personally and always wonder when our turn will be. Because it’s inevitable. We all face the same fate and it’s not a matter of “if” but “when.”

 

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Baby Mine Pt. 1

It occurred to me that all three of my boys are at the same place in their cognitive development, none being able to express their thoughts, feelings, and needs in words. Even without having this ability, Gabriel not quite yet, and Landon or Blake, who will never have it, my boys have taught me so many things about life, love, and happiness that go so far beyond any words that they could possibly utter.

And so, I want to use my words, regardless of whether they are heard or understood, to express my love and gratitude to my sons.

My first letter is dedicated to my beautiful, first born son.

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Frozen

I tried quite a few times yesterday to pick up where I left off in the story of our journey. Nothing seemed right, and I was so frustrated, and then I realized…I can’t continue when I’m feeling so stuck in the grief of the moment. There is too much weighing on my mind NOW to even think about going back and taking on that pain as well.

There is no other way to say what’s been on my mind so often right now: we are losing Landon, and that is becoming so real to me right now. Since diagnosis, we have known that this stage would be coming. I have been watching it happen to other kids in our MPS family, but because Landon and Blake had remained largely unchanged since diagnosis, it didn’t seem as real. It was easier to feel removed from the effects of San Filippo. Over the last year, all that has changed for Landon.

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The darkest day

As long as I live, I will never forget the utter despair or the sickening feeling that consumed me the day that our lives changed forever. Even now, reliving it through these words has my stomach in knots. As hard I as I try, I don’t know if I will ever accurately be able to put to words the way it feels to have everything ripped away in a split second by three letters. It’s a devastation I would not wish on my worst enemy.

As I mentioned, the physical therapist, Jann,  at Landon’s school had arranged for her and Landon’s teacher, Miss Iverson, to come over to our apartment to talk about what she thought may be going on with Landon. As soon as they walked in the door, I could feel it. This was serious. Landon’s teacher was a very sweet young woman, not much older than me. I’ll never forget the look on her face.  She looked at me with eyes full of sympathy, and appeared to be very nervous and on the brink of tears.

They came into the living room and sat down. Jann (PT) had some papers in her hand. She handed them to me and asked me to look at the pictures on the page. I had to do a double take….the little boy on the paper could have been Landon’s long lost twin. The resemblance was uncanny. I then noticed that website in the upper corner of the paper had been scribbled over with a permanent marker, along with every mention of the name of this disorder.

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