Conference decision

I’ve come to the realization, the last 24-hours, that the conference in July probably just isn’t going to happen this year. I’m humbled by one thing in this realization/decision.


I have one of the best and supportive families and group of friends behind my kids and I. When I’ve asked, people show up. Some I have known for a long time, some people who I haven’t even met. Its one of the best feelings in the world to know people care. Really and truly.
They’ve given themselves and what is needed. They’ve heard me cry and whine over silly things and celebrate with excitement and happiness yet grateful and thankful hearts!!

I can’t do it all on my own and by myself…and others know that. When I ask, our people, Ryan supporters, show up and I am so grateful!! For you. And you. And you. And you too!!

To my family, Tim, and our closest dearest friends – Thank you!! You know my struggles but love my kids and I anyway. I love you guys! Thank you!!

To those we know but don’t see or connect to very often, thank you! We are in awe of your giving hearts.


To those we have never met but you give/gave anyway, you’re generosity amazes me! Thank you for giving! Thank you for trusting me.

I’ve realized there is only so much I can do and go through in a year.
Double brain surgery.
Need I say more?! I’ve had one of the hardest years of my life.
Emotionally. Mentally. And at times physically. It’s drained me.

I remember coming down from my ‘high’ of the conference last year. It was the very first vacation and ch18 conference I took my kids to.
Just them and me.
Across the country.
Just us.
We were so ready!!
We saw old friends. Met new friends. Saw some we never met in person until this conference but had been discussing our common ground…chromosome 18 abnormalities in our children. It was the best most exciting yet exhausting week I had since Ryan was born, believe it or not. I was exhausted when we got to Savannah but the excitement kept me going. I slept like a rock each night after days were filled with adventure, new information, discussions, new friends/family, walks and exploring Savannah, visiting old friends, more questions but yet lots of answers too. The week ended and I couldn’t believe it was over and time for us to head back, 16 hours, to go home again. There was so much I still wanted to do and people I wanted to spend more time with…but it was time to go.

wpid-img_20140309_132308_357.jpgThis year, we just can’t do it.
I can’t do it.
Connecticut. 15 hours. 4th of July weekend?
Financially, emotionally, mentally — I can’t do it.

Brit, Ryan, and I have other things that are taking priority to the conference this year. We will continue to press on and save what we can for the conferences following in the years to come. Maybe we’ll make it to the conference in Utah next summer, I don’t know… But we definitely want to make the one in Houston – the home of the Chromosome 18 Registry and Research Society, the following year.

We have definitely been raising money and will be walking the 5k in Chicago this summer. And there, we will see some of our Chromosome 18 buddies.
No, it won’t be anything like the conference, but we’ll still have fun.  (That’s a given!)

If you’ve given for our trip to the conference this summer, please know we are so thankful for your giving heart. The money will continue to be saved and put away for future conferences, the Chromosome 18 Registry and Research Society, and things Ryan needs when the need arises.

If you want to give for the walk in Chicago, please email us and we will send you the link!
If you want to join our team, Ryans Rockstars, and do the half marathon, walk, run, or join us in spirit (free) as a spirit runner, please email us!!

Thank you for being a loyal reader, for caring, and supporting us. We are forever grateful to have you in our lives!



  1. Pam Kehoe

    It’s all in the timing.

    Are there more local events that you could go? Love you


    • We’ll meet up with a few of our Ch18 friends/family in Chicago the end of July for the walk/run. 🙂

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