This one of the kids is so telling of all their personalities. I love candid shoots because you really see who everyone is. Eli is hamming it up for the camera. Evey is letting the siblings know play time is over. Owen's trying to console Evey to make her feel better. And Zoey is giving the camera stink eye...just because she can. This pic is the perfect explanation of the fearsome foursome. These little people are so cool and always keep us on our toes. We are so grateful for these kiddos, they have giant spirits(and personalities) and I'm blessed to be able to hang out with them all day.
Friday, August 23, 2013
Thursday, August 15, 2013
It was no less than 2 years ago, that Nate and I were openly mocking facebook, blogging, and most other forms of social media. Yes, Nate and I eat our words quite frequently in life. That's what we get for always having an opinion on everything.
We finally started the social media game when Nate started his own business last year and shortly after, Evey was born and social media has turned into one of the greatest blessings in our lives. We found a facebook group for 17q21.31 microdeletion syndrome (aka Kooelen-de Vries Syndrome) right after we received Evey's diagnosis at 2 months old. Since then, it has been a huge blessing to have friends all over the world that can help us understand what to expect in the future and what we can do now to help improve Eves Knees life.
Long story longer, the group has started "informal" gatherings once a year, with whatever brave parent that decides to volunteer their time and home city for the yearly meeting. This year Evey and I had the opportunity to attend a gathering in Indianapolis, Indiana with 31 other "kool" kids and their families. To say it was a life-changing experience, would be an understatement. It was incredible to see Evey's buddies that all have similar features, some could have been her twins, and they all just molded together. My favorite part of it all was the instant bond with the parents of these kiddos. It was so fun to meet parents that we've been talking with online for a year and to finally be able to hug and meet their kids. They felt like they have been family all along.
Last but not least, Dr. Koolen, "the man, the myth, the legend", flew in from the Netherlands just to be at the gathering. He let all the parents ask any questions and gave us all a genetics 101 class. I have met a couple geneticists in this last year and never have I met a more warm, personable, truly humble, man. He took the time with each parent and played with the kids like they were his own. As silly as it sounds, out of all the syndromes, I'm sure glad Evey was blessed to be a "kool" kid. These parents and families are so chosen and it's an honor to belong to this amazing group of people. Can't wait for all the gatherings each year and to watch the group grow for years to come.
I love our new insta-family.
Thursday, August 1, 2013
This summer has been my first legit summer with kids out of school. Needless to say, I did zero planning and thought that things would be there normal organized chaos. Yeah...not so much. Hence the word amateur in the blog title. I have entered into a total fog this summer, that started with Evey's hospital stay at the beginning of July and it hasn't left me. The following is a list of things that prove I've lost my mind...
-I lose my phone in our house at least 2x a day and have to call the phone from my iPad to find it.
-I left my target credit card at target and didn't realize it until a week later when I was checking out at target. On a side note - target cuts up cards that are not claimed within 24 hours....awesome.
- I dropped my phone at the zoo and thankfully some worker found it at closing.
-I've successfully left my wallet at both red robin and California pizza kitchen and not realized it for days.
However, there is a silver lining in me losing my mind. It's the beautiful thing that our kids are excelling and doing amazing in spite of the chaos.
I take them hiking and everyone's blown away at their friendliness and endurance climbing big mountains.
We take them on spontaneous hotel trips and they behave like champions and have no issues within sharing a bed.
My favorite part about our kids is that they look out for one another. Yes, they can fight full on MMA style at any given moment; but if anyone messes with one or the other, they will gang up and take that person out. It's so fabulous to watch.
Now, if anyone has seen my mind, will you please contact me and return it as soon as possible. Thanks!