The Birthday that Wasn’t Supposed to Happen

Dear Alexander,

DSC_0307Tonight I kissed you and wished you Happy “Almost Birthday.” Tomorrow you will wake up and be a different part of a statistic. Tomorrow you will join the 66 percent of children with Wolf Hirschhorn Syndrome who thrive beyond age 2.


I wonder if other mothers think like this? I wonder if I am the only one? Who has been holding my breath to pass this milestone?


I’m not in denial. I know that “turning 2” won’t suddenly stop the seizures, or doctor visits, or mean you are never sick. I know that a day doesn’t mean the end of our medically fragile world.


I also remember those first days in the hospital. I wonder if I will ever forget those cruel words from the doctors?  They still cut so deep – they literally make me catch my breath and clutch my heart.   I wonder how many times those words have fuelled us to push on to this point?


You are my fighter baby. So many times… you have fought like no one I’ve ever known. You make me proud to be your Mommy. And it was with pride that we celebrated the birthday you were never supposed to have – with our friends and family.




We forgot the tears of the past two years. We forgot the fears. The frustrations. The medicines. The everything. Instead…we had cake and ice cream and hamburgers and hotdogs and laughs. And we loved you. It wasn’t a “small wedding” like your first birthday. Grandparents, Uncles and Aunts, cousins, and a few friends. To fill our home with love.







Sweet Baby. My heart over flows with love for you. Every. Single. Day. Keep fighting.  I promise – I will be here fighting with you.

Happy Birthday. xo


  1. Kim says:

    Happy Birthday, Alexander!!!!! Can’t wait to watch you continue to grow and develop in this coming year. We will be cheering you on right alongside your mommy.

    • Kristen says:

      Thanks Kim! We are so glad to watch Leo grow up with Alexander. And congratulations on his big move today!!!

  2. Dea says:

    Happy Birthday to Matthew’s sweetest buddy! Hope ya’ll have a great time, Alexander!

  3. Natasha says:

    Happy Birthday sweet boy!! Well done in showing that you have come this far, keep fighting xx

    Big hugs to you and your mommy and family xx

  4. Angela says:

    Congratulations!! Happy Birthday Alexander! Wishing you all the best. xo

  5. Bonnie says:

    Wishing a happy birthday to you all! It’s the best feeling to defy doctors expectations!

    • Kristen says:

      Bonnie – your blog was one of the first ones I found. Thank you friend, for helping us push through these last few years. xo

  6. Laura says:

    Happy birthday! What a great celebration of life and love!

    • Kristen says:

      Girl – you have such a big heart. Being a sponsor. Twin mommy supporter. You are going to do amazing things with your business.But I LOVE.LOVE.LOVE. that you love my non – twin baby. because the twins brought us together, but this… this is amazing. xo

  7. Laura says:

    What a great celebration of life and love!!

  8. Jen says:

    How wonderful it is to see all these lovely pictures of everyone in celebration and to read your loving words of the sweet blessing that is Alexander.

    • Kristen says:

      You are, as always, an inspiration to me. You are one of a handful of people who really understand what I meant in my darkest hours. And I love that you are here – on this day. Thank you. xo

  9. Jennifer says:

    What a beautiful letter to your son. Happy birthday, Alexander!

  10. Helene says:

    Awww, this is such a sweet post filled with love and adoration!!

    Happy 2nd birthday Alexander!!!

    • Kristen says:

      Girl… I must have spent 2 hours on your blog today. **random, I knwo*** and then – here you are – when it means the most. Love you girl. xo

  11. Teresa K says:

    Love it! It’s so great watching him grow (and the twins, too), what a beautiful family! I know what you mean about the statistics; it was one good thing about getting the boys’ diagnosis when Carson was four- we didn’t spend the first few years with that hanging over our heads. Welcome to the 2/3 club!

    • Kristen says:

      Teresa – you are an amazing mom and role model. Thanks for the welcome. Thanks for the congratulations. Thanks for understanding my fears. Thanks for being you. Because it makes me want to be a better me.

  12. GRAMPS says:

    Got me again

  13. Life As Wife says:

    And there will be many more birthdays to come!!!

    • Kristen says:

      I feel it. I just know it…. many many more to come. Thanks for that – that simple statement makes my heart smile.

  14. Susi says:

    So sweet. Happy, happy Birthday, Alexander. And here’s to many more. :)

    • Kristen says:

      Thank you so much! We waited so long – and … thank you for helping to celebrate it with us. Seriously, my eyes are tearing up as I read through all these comments.

  15. Beautiful post, sweetie. My eyes are filled with happy tears that this wonderful milestone is here. Here’s to many more birthday celebrations to come!!

    • Kristen says:

      Thanks Jenn….I knew you would understand that this milestone would seem like no big deal to some – but it really is a big deal to us. xo

  16. Kimmie Edwards says:

    Love Love Love this post. I, too, remember that day 2 years ago… I am so happy for all that Alexander has accomplished – and his superhero, wonder woman mom certainly plays a HUGE role in his success! Happy Birthday Alexander!

    • Kristen says:

      It is funny. Kimmie – you will forever be in my heart for those special hours we spent together. I wish I could explain how those memories calm my heart. There is no one I would rather share them with. Love you.

  17. Kristen says:

    Okay, and now I am right back to tears…tears of joy though! So happy for Alexander and your family. He is an amazing boy with incredible courage and strength to keep fighting his way through everything thrown at him. Something special is going to come out of his life, I can feel it whenever I look into his eyes!

  18. Anna says:

    Happy 2nd Birthday Alexander!! Birthdays are always milestones in themselves. The photos are a testament to the beautiful family that you are. Here’s to many many more birthdays to come. Much love xoxx

  19. Hilary says:

    Happy Birthday!! No, you are not the only one who thinks like that. I find myself holding my breath until we have a second birthday party. I, like you, know that will not stop anything, but I still hold my breath.

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