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Final Farewell and Thank You

Thanks to all who supported us during our struggle with EB and the Time to Fly 2013 5k fundraiser at Harriet Island Regional Park in St. Paul, Minnesota, which benefited Pioneering Unique Cures for Kids (PUCK). Our team (Team Puck) had the most members of any team at the event (113) out of 2,200 total participants. Team PUCK also raised the most money of any team (over $34k) thanks to our team captain’s hard work and dedication, Christie Zink. We hope to top that amount next year and participate for years to come in this and other EB events.[...]

Missing my girl

I apologize for not posting since April. I feel like I needed a "time-out". It’s been 3 months since we lost our butterfly princess. It’s hard to believe it’s been that long. Some days I can manage the grief well, others not so much. To look at me you’d never know. I don’t know if that’s a good thing or a bad thing, but I suppose it’s just my way of coping. I’m not one to share how I’m feeling very often. If you ask how I’m doing, you’re always going to get a “fine, thanks”. One of my husband’s coworkers, who has supplied tremendous support and who has also been through her share of misfortune with her children, tagged me in a picture in FB that sums it up well: “you never know how strong you are until being strong is the only choice you have”.[...]

Farewell My Sweet

Brad and I would like to thank everyone who came to support us at the funeral and those of you who supported us virtually. It was a beautiful day here on Saturday and I like to think that baby Katelyn and her brother Evan were looking down on us. We received many beautiful flower arrangements too - thank you!! I'll post pictures of those. I'm posting my eulogy as well, for those of you who couldn't understand me thru my tears or weren't able to come.[...]

Our Beloved Butterfly

I broke down today buying flowers to surround Katelyn at the funeral. Having been through this before doesn't make it any easier. It's hard trying to move on with your life when you feel a multitude of emotions. Regret, fleeting moments of happiness, sadness, and selfishness - for trying to carry on like normal. I am so thankful that I have Sean, he is my little rock, and I hug and kiss him even... more now, much to his dismay.  Her service is this Saturday and I know it going to be a hard day for all of us as we say our goodbyes. [...]

Katelyn's Funeral Service

The funeral service for our beloved Katelyn will be on March 9th at 1400 hrs. Visitation will commence at 1100 hrs and all are welcome. We will try to have some type of finger type food, snacks, and drinks. We are also working on a photo collage DVD. We will be going down to get her remains tomorrow or Friday. We have not heard if she is ready to be picked up yet so we will call tomorrow to be sure before we head down. We are headed out for a snowmobile ride again tonight. It is nice to get out and let our minds relax on the trails. We have created a donation page on and will not be updating this page much longer.  We set a goal of $10,000 on the page and will have to work at that. I am sure we will have several thousand to donate once we pay our medical expenses. We also donated all of Katelyn's extra wound care supplies the hospital could not reuse to DebRA. It is nice knowing they will go to someone who needs them and not the trash. If you have time this weekend check out Jonah's EB auction.  All proceeds go to DebRA as well and you get some pretty good items too. We have already found a few things we will be bidding on.[...]

Some News

We are having Katelyn's service at the Reamer Galer Funeral Home in Pickford, Michigan.  It will be on the 9th of March at around 1300 hrs. We have to solidify the time with the Priest who will do the service so nothing in stone yet except for the date. There will likely be a few hour visitation before the service as well. I will post once we have a definite date and time. The announcement in the paper will not go in until the Sunday before the funeral service to avoid confusion since it is almost two weeks away. Thanks for all the well wishes and support. It is nice to read through all of the posts. We are slowly getting organized at home and unpacked. Katy's cousin is coming over tomorrow to help clean out Katelyn's room. We have to go through all of our baby stuff and try to find it a good home. I also have to install the new washer and a few other projects around the house. Plenty to keep me busy so I hope it does not snow so I can concentrate on the house work. We went for a 1.5 hour snowmobile ride tonight. It was nice to put some miles on the sled. I will post once we hear on a definite time. It will be nice to see all of the family, but hard to go through everything again. We are ready to bring our girl home. We better plan our trip down to get her since it is coming up soon. Good night.[...]

Home Safe

We dropped Granny off at the airport this morning and made the journey home safely. The roads were the best they had ever been and the sun was nice as well. Lots of snow here at home. We will call the funeral home tomorrow and solidify Katelyn's service and let everyone know. Next weekend would be best for many of my coworkers but the following (9th) would be better for us I think. It is nice to be home but we are still not whole. Lots of work ahead here and we will have to find a good home for all of our baby stuff. I am sure we have enough to fill one if not two stores.  No joke! It will be sad to see them go but nice to have the extra room at the same time. We have been saving most of them for almost 5 years now. Katy thinks she might have someone for some of the items. I better get back to cleaning and unpacking. It is amazing how much stuff we accumulated down there over the past 7 weeks. [...]

Life on Paper Photos Added

We were able to post 20 or so photos that our good friend Bri from Life on Paper Photography took. We used the B&W ones so you can focus on our beautiful daughter and not her wounds. EB is a terrible condition and it is hard to believe our little butterfly had to suffer so much. I can only imagine how much pain and suffering those with EB go through who make it to adulthood. I have more photos on our camera I have not yet had time to post. I will as soon as I get them on the computer. If you are in the area please use Life on Paper Photography for your photos. Bri is awesome and we cannot thank her enough for all of her time and support.[...]