The atonement of our savior means a little bit more when your in the hospital with a sick baby. I know that because of Him my family will be together forever. Lila will be perfect one day. She will dance and run and give me mountains of kisses. Endings are not our destiny.
It was especially sweet to take the sacrament in Lila's room. I was overcome with gratitude.
2 comments:
I have been wanting to write you for awhile now. I found your blog in october 2013. Our son was born July 2013 and we were expecting a healthy baby. Its a long story between then and now but I found your blog while researching Vici syndrome. My baby had some very strange things going on and this syndrome seemed to come closer than any of them. I still wasn't positive in thinking this was it because he did have some dysmorphic facial features that weren't a characteristic. Your blog hit me like a ton of bricks. I knew that whether Kellan had VICI or some other rare syndrome, that is was going to be devastating. He already had too much and too many rare things going on for it to be "ok". It was a couple months after finding your blog that I finally found the syndrome that he is now diagnosed with. Pallister killian Syndrome. Although not as rare as VICI, it is a rare chromosomal disorder with less than 200 diagnosed world wide. Of course I was devastated when I finally got the confirmation. We dont know how long Kellan will be here on this earth and I try to just enjoy him now and not think about the future. Very hard to do at times. Although our children have different diagnosis I have been drawn to your blog. I pray for Lila and I find myself checking up on her. Before we got Kellan's diagnosis I read some of your touching blogs. Your words were often sweet reminders of things I already knew. Lila is an angel, I can see that just in her pictures. I feel the same about Kellan. So many are drawn to him and I know its because of his bright and beautiful spirit. Thanks for sharing your journey.
Kristi, My thoughts and prayers are with you today. We are so saddened by the passing of Lila. What you wrote on this post is so beautiful, sweet and true. You will be together again because of the Savior. We love you!
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