Monday, November 16, 2009

Clemjontri Party

This weekend we had the privilege of attending a very special birthday party at Clemjontri Park. It was Waverly's birthday party. The rain held off for such a special occasion!

Waverly and her brother Oliver have terrible disease called Sanfilippo, they have the most aggressive form of it. Each birthday for them is such a milestone.

Many months ago, I was reading our university alumni update and read about this family (both parents were the same year as Jeremy), realizing that they live here in NoVA. Shannon, the mom, and I got in touch and have been checking in with each other ever since...sometimes even getting together for dinner. Through this short time I have come to ADORE her and her children (although this was my first time meeting Waverly). Shannon is such a great mom to Waverly and Oliver.

It was wonderful to be a part of Waverly's special day. To read more about this family please check them out at Exploring Holland and consider giving to their home fundraiser. Please pray for this family, the disease is a mean one and taking away the children little by little.

Not only did we get to be at Waverly's birthday party but we got to see our little buddy Daniel. Daniel is a little guy fighting a big nasty brain tumor. He has been fighting it for several years. Despite all that he has been through. He is the sweetest child ever! His little voice melts my heart. Daniel's mom, Laura, get together with Shannon and I; we check in with each other and often laugh about our crazy experiences with doctors and such. Laura is wonderful with Daniel. They name most of his equipment; like Wayne the walking cane and Bubba the feeding tube!

It was quite a special day. Of course we went on the playground and the carousel. Since the park was pretty empty, Carter and Luke loved to push Brayden through the maze and all around. It gives me such joy to see them involve him in so much. Brayden always seems to enjoy being in on the action.


The VW's said...

Hi there! I found you on "A new kind of Perfect's" blog. I just wanted to say "HI!" and tell you that I think Brayden is a beautiful boy and I love the title of your blog for him!

I have a son with Down syndrome, who has many other special needs, so I can somewhat understand the road that you and your family are on. May God Bless You! HUGS!!!

Wherever HE Leads We'll Go said...

Sounds like a great weekend spent with wonderful people1 Love the shots of Brayden with the boys - what a gorgeous family you have!