Tuesday, December 29, 2009

Thinking of Castian and pieces of perspective

My life has been put into perspective today. Today is Tuesday, December 29th and a little 3 month old boy with Down Syndrome is about to have open heart surgery for heart defects in Canada. I know this because his mom, Arlene, is part of a social network called BabyCenter that I am a part of. I have met many women through this website…women who were pregnant the same time as me and women who have children with Down Syndrome.

Arlene is one of those women. I have read her posts regarding her little boy, Castian. She has been in the hospital since he was born (except for 4 days) waiting for this surgery. Surgery has been moved due to Castian having colds, fevers and due to the hospital not having enough space. She is ready for this surgery. He needs this surgery to survive and he needs it so he can go home and begin to have a “normal” infant existence with his 2 older sisters and his dad. I think back to when Jack was in the hospital for his duodenal atresia repair for 1 week or for when we were in the hospital for croup a few weeks ago and to when we will be in the hospital again Jan 29th for his hernia repair…all of those times I hated being there. I hated not having him home where it was comfortable and warm and safe. Where he wouldn’t be poked and prodded at. I hated not being able to hold or feed him without restriction…or worse of all not being able to hold or feed him at all. However, I knew all of those instances were absolutely necessary. And today I think of Arlene. She has not been home in quite some time and Castian was only at home for 4 days. She hasn’t seen her 2 daughters in quite a while. And so I pray for Arlene and Castian today. I pray that Arlene would have peace and strength. I pray that she feels how much love and how many prayers are being sent her way. I pray that God would heal little Castian’s heart. I pray that surgery would go smoothly and that he would be back in his room this evening feeling the joys of the start of recovery. I pray that he would wake up and smile…breathing easier and better.

I remember going to the Cardiologist the week after Jack was born. We had just found out that he had Down Syndrome and the 1st thing on the agenda was to see a Cardiologist. I remember waiting with Michael and holding Jack as they performed the tests. I remember trying to keep little Jack still during the ultrasound. And I remember hearing from the doc “He has a completely normal heart…no defects”. The doctor, Michael and I cried in celebration. I thank God for that news. I thank God that our Jack didn’t have to go through what little Castian is going through now. But I still feel Arlene’s pain. I know what it is to be a mom and what it is to have impossible, uncontrollable love for your son. And so I pray for them today. I cry for them today and I wait eagerly to hear how the surgery goes. And I am thankful for the piece of perspective given today…when everyone is complaining about the weather, having to go back to work, being tired, traffic, etc….when I hear all of these things, I am remembering a little boy in Canada fighting for his life and all the other things don’t even matter anymore. May God heal you Castian. And may today be a very, very good day for you and your family. I will hug my little boy and kiss him even more tonight than last night because of you. My prayers are with you both.


  1. Hello! I just got your blog address from Missy (Violette's mom). Jack is adorable!!! We're in St. Charles and we'd love to connect if you'd like. There's a great group of moms out here who get together for playgroups and just hanging out... our DS group blog address is DownSyndromeStC.blogspot.com

    Hope to get to meet you guys soon! :o)

  2. you always make me cry at work, B. I love you for that. :')