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Sometimes… Always.

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It's very hard to believe that three years ago I was watching my son struggle through his last night. Truth be told, it's very hard to believe at times that I had a first son, the Bene's Internet abbreviation is DS2 not DS1. That Freddie came first, even though now sometimes I look at his name written on the page and it jars a little, looks a little wrong, like I've accidentally written out the name of an alien mix up child. It's not that I'm forgetting him, but it's very hard to keep the real boy alongside the much more real living girls and boy

It's very hard to believe that this is the night that he was rapped in his blanket, it's imperfect and unfinished wrong side crochet captured for eternity.

It's very hard to believe that no one but me expected it. That no one really knew what to do. That we went from being prepared for a life with a disabled child to funeral arrangements so very fast. That doctors and nurses stared in disbelief as his body gave up and no one could pull him back far enough from the edge.

I wish I had said some different things.

I wish I had said no to the drugs.

I wish I had thrown the cleaning lady with a cold out of his room.

That the scramble to preserve his life on this evening 3 years ago was so temporary, so ineffectual. That it bought us just one night. That I went to bed for some of that night. That I only learned how that evening went for my other children, summoned in from playing in the garden by a broken daddy to be told there was no hope, just a few weeks ago.

That I loved him so much in his eleven days and that eleven nights of candles in the window at bedtime seem so very short now. Such a little life. So fleeting. So small. So big. That he changed my life without keeping his own.

Sometimes I wonder, almost make myself believe that I've made too much of a drama of it. That 11 days of a son is not long enough to cry all the tears I've cried. That I really should do better. That I got what I asked for in so many ways; that he gave up without dragging us through months of pain and fear and love in our home while our hearts broke daily.

And then I look at the pictures of that last night and see my face and I know how much I loved him and how awful it was. And still is.

It's true that when he died the next day, at a time of our choosing and in a room alone with us, it was peaceful and gentle and as good as such a thing can be.

But those 11 days, that last night…. They were brutal.

I really did love him very much indeed. 3 years is way too long to do without my child. Much, much too long.

 

Comments

  4. Oh Merry, I’m so so sorry. You have not made too much of a drama of it. 11 days is so short and yet easily long enough to fall in love. I remember when Bene was newborn you said it made you realise how completely you loved Freddie from the very beginning. I wish I could turn back time for you. I wish you could have both your boys together. Sending you love and hugs xxxx

  6. I will never forget that night, or any of Freddie’s life. The girls were so loved, supported and hugged through that night by all of us there, I promise you that. xxxx

  7. Everyday this week, as Ernest and I have walked through the park to school and back, we’ve said “hello Freddie” to the daffodils that have finally arrived.
    Freddie is always remembered here, and there is no doubt he is loved.

    This post, as yours often do had me nodding along with tears and sad smiles. I understand so much of this.x

  9. Tears have been shed for Freddie by so many of us who never had the privilege of meeting him in person, by so many of us who have never even met you Merry. None of those tears were ‘too much’, he is loved x

  10. Every day, I search my email for new posts from Still Standing. And there is seldom a one that doesn’t bring on tears. But this post, so loving and haunting, touched my soul. You see, I am only the grandma to my daughter’s lost angel. She presented us with tiny granddaughters on January 1, 2012. Big sissy fought and suffered and finally lost the fight, after 9 days. Her baby sis struggled for 146 days in the NICU and now is a thriving 15 month (corrected, would be a year April 18)old miracle. I troll the internet looking for stories, for medical news for mommies with infections, for memorial ideas. I never tell anyone how consumed I sometimes become over the loss of my granddaughter. I have 4 living grandchildren…every one a treasure. I have no right to be so devastated. This is my daughter’s story. But, how do I give up on the love for the angel that left? How do I ignore the pain in my daughter’s eyes? I won’t give up, because this angel deserves the remembrance. Because I want her baby sis to always know she is a twin to an angel that was so perfect, so strong, but never had a chance. Merry, you could never over dramatize celebrating the life of your beautiful son. There can never be enough tears to wash away the hurt, nor enough to feed the lives “left standing” You have helped me to accept that. Thank you for posting. And good luck in all you do.

    • Oh Sharon, what a beautiful thing to write. I am so sorry for the loss of your granddaughter and the relatively silent position it puts you in. What a terribly tough place to be. Much love.

      • Thank you, Fran. This was so sweet of you. I have lit a candle. Do you have someone there?

        • Unfortunately, yes. A few actually, but not all are children. Please let others know that their loved ones can be remembered and that others can remember them too.
          I’m sure you’ve heard this before…One of my favorite quotes, “grief is something you never get over, you just learn to manage it differently, day by day.” I find it cathartic lighting the candles.

  12. Beautifully written memory of a beautiful boy. There is not enough time in the universe to grieve a child lost.

    I hope you don’t mind this quote from last week’s Doctor Who: “a future that never got lived. Days that should have been and never were. [..] a whole future that never happened. There are billions and millions of unlived days for every day we live, an infinity. All the days that never came.”

    :hugs: xxx

  15. Sending love, Merry. You are an amazing, strong mama and your love for your beautiful baby boy is a testament to that. Your children are lucky to have you xx

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