What is hard?

I am currently training for the NYC marathon and raising money and awareness for Running for Rare.
A few weeks ago I was off to meet some friends for my long run. We meet bright and early ready to run at 5:30am. We were running our longest so far which ended up being 17.5 miles. Driving there at 5:15 I was thinking how hard it is to get up and get there, and then how hard the start of the run is. It all gets easier, as we continue, but I just kept focusing on the word hard. Is running hard? Getting up at 4:45am to run? Overall no, I don’t think it is. An inconvenience? Yes? Hard? no
So what is hard? I think of Joseph, my son who has a rare disorder, Galactosemia, he had a very rough start in life, and we almost lost him at 9 days old. That was hard, seeing him so tiny and fragile, and not being able to do anything about it, yep I’ll just say it again hard. Thinking back, the hardest part was the not knowing, not knowing if he would make it, and not knowing what this disorder would bring.
Then I flash forward to now and think about how extremely fortunate we were to even know what the disorder was. We had lots of doctors’ appointments, but we always knew what we were dealing with. Then we found the Galactosemia Foundation, which was a god send. We were able to chat with other families online, and eventually meet other families. We had the support of the Galactosemia community and could go to them whenever we needed.
I can’t imagine how hard it must be for a parent to not know. Not know what is needed to help their child because they have no diagnoses. Not have a community of supporters who have been where you have been and know what (more or less) what’s to come. This is what I consider hard. Being in the dark, and not knowing if you’ll ever see the light.
So when I go out there and run, I run for Joseph, I run for those who do not know, but are fighting every day.

Posted in Running Stories
4 comments on “What is hard?
  1. Anne Burtenshaw says:

    ❤️ It was so nice to meet you and your family in Hartford Nicole. Next up NYC. You are doing amazing things.
    Anne.

  2. Em says:

    Beautifully said Nicole. We enjoyed every minute we spent with your family. Jojo made lots of new best friends last weekend. He is such an amazing little boy. Good luck in NYC!

  3. Erica says:

    As a Rare disease Patient whose been part of RfRD Team for some yrs now thank you for sharing.
    Reminds me of Sarah, my runner from last yr and her story w Madi (CCHS)

    Erica
    http://www.rarelydefined.blogspot.com

  4. Phil says:

    2 weeks until NYC. I can’t wait to see you and Jojo again!

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