July 15, 2013 by piratritasavit
Thanks for your kind words of sympathy and encouragement. Venus and I have been mixing our grief with great joy in the midst of it all. We’ve had plenty of space to reflect and rejoice together, and we remember just how special this privilege is to be called parents.
Here are a few glimpses into ways we’ve been helped.
ROOM OF MARVELS
Prior to Fia Jae’s birth, Venus and Zeke and I were preparing ourselves with reading and resources and networks of support. One book we came across is called “Room of Marvels” by James Bryan Smith. It is a semi-autobiographical story of his own personal tragedy, losing a daughter to a similar chromosomal condition. It’s written in a style similar to Mitch Albom’s “Five People You Meet in Heaven” with a Christian focus.
Smith was a close friend of one of my favorite songwriters Rich Mullins who had written a special song for James’ daughter Madeline who had the chromosomal condition. You can hear Rich Mullins perform the song here (shortly before a tragic car accident that took his life). And you can read a touch essay called “Grieving with Hope” written on the Room of Marvels website.
- Madeline’s Song – http://youtu.be/lTwjsorzNz4
- Grieving with Hope – http://www.bhpublishinggroup.com/roomofmarvels/grieving.html
MUSEUM FAMILY FIELD TRIP
We thought it was important to have some focused “Zeke time” just to remind him how important he is to us, and for us to also celebrate him as a great big brother to Fia Jae. Zeke was so strong through the transitions at the hospital and he handled everything so well.
So on Friday, we decided to bring him on a family field trip to the Children’s Creativity Museum.
We all had a lot of smiles and laughs. Here is special video that he created at the museum! It’s hilarious and about 2 minutes long. He dresses up as a superhero and sings 3 songs in an acapella medley of some of his “greatest hits”. He didn’t want any help from the karaoke track, so they turned it off and he just winged it. PLUS, wait til the very end to see how he celebrates his sister =)
VIDEO: http://youtu.be/2Y8DZHIj2ks (NOTE: the first 13 seconds are silent, then he starts singing on his own)