Friday, April 13, 2012

Mighty Mito Mom's

I met up a bunch of new Mito Mom’s (and dad!) last night for a night out. (If you’re a Mito mom reading this in the Houston/Katy area, private message me on email and I will send you the info).
We spent two or so hours swapping stories, meds and advice with new and old friends. I met the couple whose son was just diagnosed with Leigh’s in January. My heart ached for them and for me. The pain is still so fresh from July 5.
If you are a mito mom and reading this, please I ask you not to be offended, with this post and know that it’s coming from a place of good and that this blog is where I have to be true to myself.
I realized that Will is one of the healthier mito kids and I felt stupid or “not sick enough” to be sitting at this table with these amazing women (and man). I left realizing that I – WE – are taking things for granted with Will.
I sit here and write and tell people never to take things for granted and here I am, doing it. I take it for granted now that Will can walk (albeit not sturdy all the time), or get into cabinets, or vocalize his needs and wants.
I guess I just am thankful that this group of women (and man) really grounded me last night. I remember the time I would marvel that Will could sit up without falling or even take three steps. Now, I take it for granted to some extent.
The catch is that I know there’s going to be a day when things are NOT so grand and I will remember the days of Will walking and talking and “wire” free with tremendous sadness and a heavy heart.
So thank you Mito moms (and dad) for the gift you gave me last night. I am humbled to be in this group of amazingly strong and unbelievable women (and men).
I also just bought this book Living Well with Mitochondrial Disease by Cristy Balcells, R.N., M.S.N. off Amazon after it was recommended by two new friends. Perhaps I'll do a book review when I'm done with it haha.
I'm feeling nostalgic - Will's First Birthday - April 24, 2010.
My how time flies... almost time for birthday #3.


  1. I wish I could have been there! I saw that recommendation on Facebook so I also just bought that book! I'm looking forward to reading it!!

  2. Great seeing you last night!! Hoping I can make it to the next. I always leave with more knowledge than before and with a new friend who "gets me". Great experience!

  3. Lori,

    So glad you have a group of mito parents to gather support from and knowledge. Big hugs to them and you!

  4. I am so blessed to have met you last night! And don't EVER feel like you don't belong- we all all on similar journeys, and are here to support each other, not compare who is "sicker". Will is adorable and I can't wait to meet him!

  5. I'm so glad you found this group, everyone needs a group who just gets what they're going through. Adorable pic of you and Will!

  6. It was so great to meet you and so glad to find your blog.... I have had the same "my kid looks too good" guilt before also, thanks for blogging about it...I am glad to know it is not just me! And as Elizabeth said so well... we are here for support on this journey not to compare degree of sickness.

  7. That is so great! I'm so glad you found a group where you can share things and get advice from people who know what you're going through!