The tulip festival

 I think The Secret Garden was my favorite.

 I keep finding my one strong little tulip in a sea of another color.

We went to the tulip festival yesterday at thanksgiving point. It was so gorgeous! I kept telling Quinn, This is what my heaven looks like! Except little miss is running ahead of me and playing in all the flowers.
As you might have gathered already Tulips are pretty important in this family. They represent my little girl so well. They are little survivors,  they are strong and determined, they represent the story of Holland  (old post) and so therefore represent finding beauty in our situation.  I'm sure we will make the tulip festival an annual occurrence. It will be so bittersweet once Lila is no longer with us but I will still get to see her in every tulip. 

The Kindness of strangers

A few months back I registered our family on the global genes project.  www.globalgenesproject.org It is a site dedicated to those with rare diseases. I was hoping to find more Vici families from it. That didn't happen but I got this in the mail the other day. Its from a complete stranger. People donate bracelets to the project to give to parents and caregivers of a child with a rare disease to show their support. I thought it was very touching. There are so many good people in the world!

Cousins

My cute cousins came to visit us. Thanks Blythe and Ashley! Oh, and second cousin Vera!

Happy Birthday sweet baby James!

This is our sweet angel friend James. He had Vici syndrome. I only know two other families that have had children with Vici and James was the first one that we were blessed to get in contact with. Finding another Vici family was like finally being able to breathe after staying under water for too long. It felt like a lifeline. A glimmer of hope. Something to grasp onto. James's mother has been incredible. She was the one who gave us the information for the researchers in London which is what finally got us a diagnosis. We couldn't love this family more.
Today would be James's third birthday. He passed away when he was 16 months old. Leaving this world while in the arms of his mother and father. For his birthday his parents usually let of balloons. We wanted to honor him today and so as a family we wrote James a card and sent it toward heaven. We also sent up Quinn's and I wishes and hopes for Lila on other balloons. We are sure that her sweet angel friend James will hear us and watch over Lila.
Happy Birthday James. We love you!

We are looking to adopt.

When you become parents, the feeling of absolute love is so indescribable. That beautiful life brings so much perspective and humility. We have been given the most beautiful angel with our little Lila. Unfortunately, with the blessing of having such a special baby comes the uncertainty of having more of our own kids. We still have so much hope to see our own kids growing up and becoming what every parents wants, kids that have a chance to grow and to succeed and to love. Because of that hope and after much consideration Quinn and I have decided to put in our adoption papers. We have heard that networking with those we are close to helps tremendously in the process of finding a baby who needs a family. Please feel free to contact us if you know of anyone who is looking at adoption as an option. We really appreciate your prayers and thoughts.

please do us a favor and post our blog and story on your blogs and social media sites so that we can get the word out. We would really appreciate it!

Happy Easter

Lila's Easter dress. She only wore it for two minutes. She unfortunately brought back a nasty bug from St George and missed Church.

The week before Easter my mom and dad had their egg hunt. The cousins were so cute with little miss. They would build towers and Lila would slowly push them over. They were so sweet and patient. It was fun to see her play back for once.




Happy Easter!

spring break

We had a great time tagging along on the cousins spring break in St George!