I've been sad and tired and worn out.
And yet I've put on my big girl shoes and stood up tall.
Sometimes that's just what you've gotta do, right?
I've thought so much this week about the things that Sammy will never do.
The things that we will never do with him.
The ways that we will remember him.
And the ways that we will not.
Our incredibly strong and kind friend Emma Rose (and her family) served a dinner on the HOT Unit last Friday night, in Sammy's memory.
This was the fundraising campaign that I set up for his birthday, in honor of that incredible milestone. Things seemed so hopeful at that moment. We had donuts for breakfast, we planned parties and cakes and celebrations...thinking back to his birthday, it seems like an entire lifetime ago.
Emma did a wonderful job of creating something meaningful and beautiful in memory of our sassy Sam. I'm glad that people said his name and remembered him. I'm glad that a really good thing was done, a really good thing that brought smiles and laughter and happiness...I'm glad that Sam's name can be associated with things that bring joy.
Tomorrow...Saturday...would have been Day +180 for Sammy's bone marrow transplant.
One hundred and eighty days since Sam met his new marrow.
It seemed like a day filled with light and hope, with excitement for the future and for all the potential that it held.
I wanted so badly to celebrate these milestones with him.
Imagine what we could have done with 180 days...
I wake up each morning and wonder what we would be doing today.
Would we be going to clinic?
Would we be negotiating about meds and IV lines and would we be worrying about the flu season?
Would Solly's cough that is keeping me up at night be a ticket for him to sleep at someone else's house?
Which old movies would we have introduced to Sam?
Which favorite books would we have read?
Would I be busily convincing the four of them to choose a foursome costume for Purim?
As I braid my challah with its forever-six strands and prepare for this Shabbat, I wonder what we would have done to celebrate 180 days. Fundraising? A party? A quiet little celebration with carrot cake? A visit to deliver gifts to the Ronald McDonald House? A snowy walk in the woods? Baking cookies?
Instead...we remember him.
Will I ever stop thinking about what would have been....?
 |
| November 2010 |
 |
| December, 2010 |
 |
| February, 2011 |
 |
| September, 2013 |
<3.
ReplyDeleteyou've shared your Sammy with the world, more people than possibly would have ever had met him. That's a big thing.
ReplyDeleteShabbat Shalom
I don't have answers, but I'm here, and I'm listening, and I'm holding you and your whole family in my heart with love. May the coming Shabbat bring some balm to your soul.
ReplyDeleteHugs. Beautiful, honest post.
ReplyDeleteAs always, thank you for your honesty. Always thinking of all 6 of you.
ReplyDeleteYes, yes, yes, what @rbarenblat wrote. Present and listening and reflecting and sending so much love out into the universe for your family.
ReplyDeletemuch warmth and love. thank you for sharing with us. wishing you and your family shabbat shalom.
ReplyDeleteLove, I send you all the love I have in my heart for a beautiful little boy whom I never met but morn his passing every day. My oldest son is participating in St. Baldrick's next month in Sam's honor.
ReplyDeleteI've never commented on your blog, but I've been reading it for awhile. I'm so terribly sorry for your loss. My son was stillborn, his surviving twin sister will be 6 in May and I have another daughter that will be 10 next week. I still think about what could have been, what our life would be like now if he had survived. The thoughts aren't as all consuming as they once were, but they still come. Sometimes life feels like a landmine and you never know what will trigger the feelings. I hesitate to say it gets easier, because the pain is always there, but it changes. I think you become more able to manage it, but at least in my experience you never stop thinking about what could have been. I know I haven't. I can't stop imagining what my life would have been like if both my precious twins had survived. What our family would have been like with 3 living children. What raising twins would have been like, what raising a son would have been like. Again, I'm so sorry your precious Sammy died. Thank you for sharing your family with the rest of us through your writing. I think it's It's harder to choose life and move forward than it is to let the grief swallow me whole, but I remind myself that the best way I can honor my son (and my other children) is to live and try and be happy.
ReplyDeleteA beautiful boy who will always be remembered.
ReplyDelete"Would have been" must torture you, and all I can say is somehow "sassy Sam" lingers in your words, and possibilities in my own life can become realities, thanks to him.
ReplyDelete