A Niece Apologizing to Her Beloved, Brave Aunt

Lorenzos_oil_MCD10782Dear Aunt J.,

Because there isn’t anyone who can stand in front of you and tell you they are sorry for the pain you’ve experienced in life, I choose to do it for you, for Life Itself.  Not because I am a big person, and not because other people don’t care or couldn’t say it too, or say it much better than me, or that it wouldn’t mean way more coming from someone else either. I’m doing it because I really don’t think anyone ever HAS.  Because how could they?  Why would anyone accept responsibility for apologizing to you for the cards you were dealt in life?  How does it make sense to apologize to you on behalf of Life Itself?  Yet here I am, someone who could never truly possibly know or fathom how much pain you have been through, trying desperately to give you SOMETHING to that affect.  Because I love you.

Because no one should have to outlive their child.

Because no one should have to outlive BOTH their children.

Because no one should have to outlive both of their children from a degenerative disease which slowly robs them of who they are.  And then on top of that to have their husband drop dead of a heart attack while mowing the lawn one day, leaving you with two invalid boys that you have loved with your whole heart and soul, for whom you took up nursing to help clear out their lungs because they would wake up in the middle of the night unable to breathe.

It isn’t fair and I don’t care that a fucking million trillion *gabillion* people have said that about difficult situations before in their lives.  Because they aren’t you and it needs to be said for *you*.


I will say it as many times as you need to hear it.  You can squeeze my hand until it breaks every bone and then start in on the other one if it gives you even an ounce of relief for what you’ve been through.  Fuck karma.  Fuck “this is your mission”.  This isn’t even my pain and yet my heart goes out to you for how beyond difficult this must have been and someone should damn well answer for it.  I don’t know how the hell you do it and do it with such grace.  Has ANYONE ever told you that?  And truly MEANT it?

It must have been so terrifying and devastating to get horrific news not just about your young, firstborn son – but then also to have his little brother, seemingly healthy and rambunctious and full of life, receive a death sentence too.  And then go down the exact same path and live the whole thing over again with your second son.

I mean – what do you do?  Do you try to console yourself by saying you’d never have had kids if you’d known about such a rare genetic disorder?  Do you say that’s what the good Lord intended and it’s all God’s plan?  Do you say you’ll turn over every stone trying to find a cure, looking in every crack and crevice until your fingers bleed and your impassioned heart gives out?

When you guys came to visit the Mayo clinic and stayed the night at our home as a stopover, and I saw him bumping around into furniture, a youngster who couldn’t see anything clearly in front of him in the middle of the day, walking all funny? And you corralling his little boy energy, a little boy trying to navigate a sea of what was once familiar and all the sudden has become completely foreign?  I had never witnessed anything like that before in my life.  I didn’t have the words or capacity to be able to reach out to you.  I was a self-serving, angsty, sheltered teenage girl who couldn’t see outside of herself.  Someone needed to smack me up side the head and tell me to get over myself and my first world problems and step up to try to be supportive to you.  I am sorry for that too.

Later that year we were all at Grandma’s for Christmas and you were sitting on the couch with him, I only sort of got it then.  I saw you cradle an 8-year-old like a little baby because he could barely move his own limbs.  I saw you try to calm him down, and feed him through a tube, and none of us had any clue what his garbled unintelligible speech was. Yet somehow you knew.  Somehow you understood every word he was saying to you even though it was completely incoherent crying coming from a barely moving tongue and mouth.  You were his mum and you knew.

It took me so many years to attempt watching LORENZO’S OIL to really try to understand what your life was like.  I was such a coward.  And even now, I’ve only watched it twice.  When they get to the end of the film and its credits and they start showing the real-life footage of all the kids who suffer from this awful disease, I ran into the bathroom both times, sick to my stomach.  But you live(d) it every day.  I had to force myself to go back and hear what those kids have to say, see their bright and shining faces and know of the life that they will never have and never know.  It was hopeless for them and it makes me want to punch something for you repeatedly until my arms break off and then I would still want to punch some more.

I am so, so, so, so, so sorry that this is the way life unfolded for you.  You have managed to find happiness and remarry an amazing man who is incredible to you and accepts you for who you are.  He is a saint.  And so are you.  You really are the biggest hero to me in my life, even though nobody knows who the hell you are except our family.

But it still doesn’t make it right.  And that is why I think you deserve this apology that Life and nobody else will ever be able to give you properly.  Actually you deserve so much more than this feeble and pale apology that doesn’t even scratch the surface of the existence that you were hoping to have and had pictured when you married my Uncle T.  You deserve to have your two little boys dancing around you, graduated college, healthy and spry and taking care of YOU as you get older.  Not memories of years and years of caring for sons who were hanging on as vegetables.  I only hope and pray that these two little spirits can find their way back to you next lifetime, in a way that lets them do everything they Life was promising them and more.  I am sorry this is how things turned out, and I will be praying with hope for that.