Sometimes They All Didn’t Live Happily Ever After

sad

 

Usually when I post a blog, I try to make sure that no matter how sad or dark the subject matter of the post may be, that it also finds some light or hope in its words.  But not this time. Not this post.

I am the kind of person who will always try to find a rainbow in a storm. A light at the end of the tunnel. But if I’m being honest, I’m just tired. And I’m angry.

This disease sucks. There is no eloquent way  to say that. I can’t dress it up in colorful, descriptive words that make it sound better.

It stole Landon from us. It will steal Blake from us. That is not a matter of “if” but only “when.” I can’t change that, I can’t fix that, I can’t stop that. I will have to kiss the cold and lifeless bodies of two of my own children and then I will never see them again. Too honest? Too blunt? Try living it.

Because sanfilippo doesn’t just kill children. It robs them of everything. Before it snuffs the life out an innocent victim, it steals all hopes, all dreams, and any chance your child ever had of having some semblance of a normal childhood, a normal life.

Landon and Blake never understood what they would miss. They never cared. But I care. I have never heard either of my oldest two sons say “mommy” or “I love you.” Blake can’t tell me if he’s hurt, if he’s hungry, if he’s cold…he can’t tell me a single thing. He is a prisoner in a body that fails him more and more each day. And that is his life. And no, he doesn’t know any different, but I do. And that eats at me inside. Every single day.

I know how his life could have been so very different. How he could have loved power rangers, or ninja turtles. How he could have had a best friend and thought girls had cooties, only to one day realize that girls and love make the world go round for a teenage boy. He could have loved the  Vikings, or the Blackhawks, or theatre, or chess. He could have been anything he wanted and chased wild and crazy dreams that ultimately might not have panned out, but taught him what he really wanted out of this life.

But he won’t have any of that. And just because he doesn’t know any different, doesn’t mean that it’s okay. It’s NOT okay. It will NEVER be okay. Even though I have accepted that that is his reality, I will never not grieve the child he could never be. Or the man he will never get to be.

Instead of sleepovers and birthday parties, my son has therapy and an increasingly difficult time just sleeping at night. Instead of flag football or city soccer league, he is fighting his body just to be able to stay mobile. He falls every single day. Multiple times. He doesn’t even have the cognition to instinctively catch himself anymore. Most days he can’t even get off the floor without help. At six years old, we are already anticipating a time in the not too distant future where he will be wheelchair bound.  His mobility is the last real skill he has that allows him any sort of independence. Any sort of choice in how his day will go. And it is slipping away. Where do you find any good in that? How do you wrap that up in a nice little bow and find a silver lining?

the truth is, you don’t.

You suck it up, you put on your game face and you do what you have to to make it through another day. And some days it’s easier than others. But it never changes the truth. The nasty, ugly, disgusting truth.

My son is dead. And another son will die. And today, I can find no goodness in any of it.

 

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9 thoughts on “Sometimes They All Didn’t Live Happily Ever After

  1. Words cannot describe the pain that reading this gave and gives me. I am only the grandmother of a three year old child with Hunter’s MPSII, As I read your profound truthfully painful words, I feel this exact same way. Ever word my truth, endless tears that never dry. Brief happy thoughts when I’m with my boy or alone, only to be stolen away by the harsh reality of what my heart tries to push away, but my brain already knows. No amount of self soothing will ever prepare me for that day.No words I can self say, will help, but know that my heart is painfully happy when I’m with Jaxon as well as profoundly painfully despaired. It’s as if my smile is seen on the outside, but my heart cries and I am the only one that hears it. No words I can say to you will EVER be good, but From a Grandmother to a mother I’m sorry for us both.

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  2. I truly appreciate your honesty and love this writing. I feel this and can’t imagine losing and child and watching another fade away. Love and strength to you!

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    • Thank you, Kelli. I know you know these feelings all too well. I know it will be hard for people to read these words, but sometimes it just needs to be said. This life is hard and it’s sad. And those feelings deserved to be validated too.

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  3. Many people will think this is a harsh, brutal description of your feelings towards this disease and that somewhere there must be a silver lining. However, I think you are 100% right and you have described my own feelings perfectly. I lost my beautiful daughter to Sanfilippo IIIA in 2009 aged 13 and even in my continuing grief I am still angry that all my hopes and dreams for that beautiful baby when she was born were destroyed when I first heard those now hated words Mucopolysaccharidosis and Sanfilippo. Like you I never heard “I love you”, I desperately tried to understand the body language and realised all I could do was just show her as much love as I was capable of to make both our lives bearable. You are so right… this disease really sucks…

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  4. I am heartbroken for you. I served as a caregiver to a beautiful little girl with Sanfillipo for 3 years. They were simultaneously the best and worst years. I loved her so much. I honestly didn’t know I was capable of such love. And I wouldn’t trade a second I had with her to erase the pain I still feel at her loss, 7 years later. But that pain, that stop you in your tracks pain, where your breath can’t come out because your heart is trying to escape through your throat…that pain never really goes away. It’s always there, just below the surface; triggered by the most random things. I wasn’t her mother. I cannot imagine that loss. But as someone who loved someone taken by this insidious disease, I’m so sorry. It sucks out loud and there is just no way to sugarcoat that, and sometimes the only power we have left is the power to be furious. You will be in my thoughts and prayers.

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  5. No parent should have to lose a child, I to lost a child due to congestive heart failure, almost 2 years ago Feb 16. I do know its hard to keep the faith, a good book I read was God Enough. And compassionate friends has helped me and my husband be able to talk to others who actually understand
    My prayers to you and your family

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  6. Thanks for your vulnerability and honesty. I don’t know how many times I’ve said “Sanfillipo Sucks!” I’ve watched my brother and his wife bury 2 kids with this horrible disease, their 3rd child will pass from this too. As I approach an empty nest at my house, so do they; but my grown kids will return to visit me and theirs will not. This brutal reality has become the norm for our extended family and it’s good to be reminded yet again how devastating the loss of any child is and how the effects of that stay with the parents forever. Thank you for your words. May God comfort you.

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  7. Beautifully written, the stark reality of life with MPS. I felt for you when you lost Landon and I feel for you now, reading your painful words, words that no mother should have to write, let alone feel. Thank you for sharing them. I know you will have touched on how so many others have felt. Raw emotion and complete devastation and anger, grief, hurt, bewilderment and a whole range of emotions. Bless you. My boys have Hunters and I dread ‘those days’. Be kind to yourself. Much love x

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