Dear Akiva,


It’s been eight years since Akiva’s “Day 1.”  For those of you who are unfamiliar with my husband’s own story, he underwent very risky brain surgery to remove a tumor from his brainstem on November 8, 2005.  Akiva, this post is for you.

When we first locked eyes across that small table in Lerner (Columbia’s student center), my heart skipped a beat and I had to catch my breath.  Never in my life had I felt that feeling before.  I felt as though my life had just changed course.  Yet, despite intuitively knowing that in that moment I became the luckiest woman on earth, I had no idea just how lucky.

Idan’s disease is inherited from the mother.  It is what they call “X-linked.”  This means that – no matter who the father – there is a 50% chance that my children would be affected by the disease.  Every boy I have has a 50% chance of having the disease as Idan does, and every girl I have has a 50% chance of being a carrier, and thus would carry the burden of knowing that she could pass this along to her children as well.  So when Idan was born with Hyper IgM, it was nothing short of a miracle that he is also Akiva’s son.  Who better to fight Hyper IgM than the son of a superhero?

It’s not just that Akiva learned how to navigate the healthcare system because of his own brush with death eight years ago – which, don’t get me wrong, was instrumental in helping us find Seattle and getting Idani cured – it is his personality.  Akiva is optimistic, certain, determined, and resilient.  He is incredibly funny, silly, and loves to make others laugh.  He will drop everything to lend someone a helping hand.  So how does this play out?  Well, he got me and Idan through the worst days of our lives.  He can entertain a toddler for all his waking hours without breaking a sweat.  In the middle of the night, he wakes up if he so much as hears Idan turn over, and will rush to Idan’s bedside at the slightest hint of discomfort.  Akiva dropped everything to take care of Idan full time when we first received the diagnosis so he could ensure Idan stayed healthy and happily unaware of all the things we had to do (or not do) to keep him safe. Akiva called doctors, fought with insurance, and gave me the strength to continue forging forward despite the many obstacles in our path.  When we thought we’d have to come up with a million dollars to get Idan to Seattle, Akiva smiled and said, “no worries.”  When we needed a jet to get to Seattle, Akiva shamelessly posted the question on Facebook to make sure Idan did not have to fly commercially to his bone marrow transplant.  And in the middle of the night, when Akiva is sleeping at the apartment and I am at the hospital, I get an email asking how things are going.

Akiva, thank you for giving Idan his smile, his resilience, his determination, and most of all, his silly sense of humor.  I could not have asked for a better father for my son.  Happy re-birthday.

3 comments for “Dear Akiva,

  1. Becky Peterson
    November 8, 2013 at 8:57 am

    Beautiful story, Amanda! I totally agree, you two were meant to be, and so was Idan! It’s all in God’s plan, so it’s no surprise to me, that you are with your “perfect” soul mate! You are all such a beautiful inspiration of the “true meaning” of love! May you have many, many, many more blessed years together!

    Love & Hugs, Becky Peterson

  2. Linda Wachtel
    November 8, 2013 at 9:03 am

    Amanda… You take my breath away…
    From the moment I met you, back when Akiva first brought you to a Cbtf event early on when you were first dating, it was clear to me how special you were. I already knew that Akiva had passion and a fighting spirit from the story he shared with me and by the writing he has generously shared through ipatchman. Perhaps the stars were aligned to bring you two together to forge this road together with so much optimism and hope and all that you are teaching everyone by giving the gift of sharing your incredible story. You have so much hope ahead for your futures and whatever bumps in the road there may be, you are an amazing team. Love you two- you are the best!! Xoxoxo

  3. Linda Wachtel
    November 8, 2013 at 9:05 am

    Oh… And Akiva… Congrats on your milestone today and make sure to take a moment to recognize and be thankful for how far you have come…. Even if it’s just toasting with an extra special Starbucks! xoxo

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