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Showing posts from May, 2015

Kenna: A Documentary

Kenna: A Documentary

This is a beautiful short documentary on Kenna, who is the youngest daughter of our dear friends Shannon and Vicky. The young mann who put this together is a cousin of Kenna's. Kenna's "best friend" Ginny, the oldest daughter of our friends Brant and Melissa is also highlighted. Ginny, as many of you know recently left the arms of her parents for the arms of Jesus, and she is dearly missed by all who knew her.


We consider ourselves blessed to have these families amongst some of our closest friends and in many was really consider them family. To learn more about PBD-ZSD and how you can make a difference in the lives of the children and families impacted by this disease, please visit the Global Foundation for Peroxisomal Disorders (GFPD) website.

Making New Friends

"Family isn't always about blood, sometimes it's about who is there to hold your hand and support you when you need them." ~ Unknown
As most of you know the GFPD has become a second family to us since Ethan's diagnosis. The GFPD family certainly isn't the type of family that most people would ever really "want" to be a part of, and while we always warmly welcome in new families impacted by this diagnosis I think I'm not overstepping when I say that we all wish we would have met under different circumstances. Nevertheless, I am always excited when I get the chance to meet and/or spend time with another family who "gets it."
Two weeks ago I got to meet a family who is new to the GFPD, who happens to live less than hour from us! The mom and I met for lunch and I got to meet her son, who reminds me so much of Ethan when he was younger. We talked about the "good, the bad, and the ugly" and hit it off right away. Her sweet little …

My Heart Breaks for My Friends [and for Ourselves]

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In less than two weeks two precious little girls lost their brave battles with PBD-ZSD. Our family has had the privilege of knowing each of these families since we connected with the GFPD. We've even had the opportunity to meet them in person, which is a big deal when you are impacted by a rare disease.

Livi was 4 years old. We had not seen her or her family since the 2013 GFPD Conference in Lincoln, NE but we stayed connected on Facebook through our very active parent support group.
Ginny was 6 years old. We have met her family not only at past conferences, but several other times throughout the last 4 years. I was able to go and visit these dear friends back at the end of February after Ginny had been released from the hospital. It was such a sweet time together. Her mom and I drank coffee, laughed, cried, and prayed. I was also able to love a bit on Ginny and her younger siblings. Our families were also together back in October, when we met up in Kansas City with two other GFPD…

"I don't want to play outside!"

Over the last 4 plus years one of the most frustrating and heartbreaking things for me as a parent of a child with PBD-ZSD has been our lack of ability to communicate with our son. On a daily basis we can see Ethan's frustration and our own at our inadequate understanding of one another.
However, this afternoon after we got home from school and he was successful going potty [this is his most consistent successful potty time for us] I thought perhaps Ethan would like to go outside and perhaps use his walker, play in the grass, let me take some cute pictures of him outside, etc. Ethan however had very different plans. I took him outside and refused to stand in his walker, so he sat on the concrete driveway for just a moment before he started crawling back into the garage towards the van. I thought that he was going to try to get in the van in order to "tell me" he wanted to go somewhere. No, instead he pulled up on the van, cruised around the side and front of the van unti…