The apples on your tree are growing ... a symbol to us that life goes on...but it will never be the same. The hours that turn into days and the weeks spinning into months without you here bring no relief. The grief is still overwhelming to each of us who love you. Though 17 months have passed since you were snatched away; it feels as if it were just today. You are and will always be Grammie's Sunshine- I miss you dearly my little Angel.
My son has DiGeorge syndrome and I feel for your loss. I hope since you started this blog you realize that you have some misinformation in your oldest blogs. DiGeorge is not always passed from the parents...my husband and I were both tested. In fact, only 8-10% of the cases are passed on through parents that have the same deletion. Also, not all DiGeorge kids have heart defects. Most do, 75%, but not all. DiGeorge Syndrome affects all children differently and there are many that are thriving at all ages. It really depends on the severity of the heart defect and immune system function.
ReplyDeleteI am so sorry that you did not have well-informed doctors that could care for your grandson. Our docs were well-informed and we knew what to expect before he was even born. It is heartbreaking to read your story. My thoughts and prayers are with you and your family.
Thank you for your prayers. Yes, We realize there is some misinformation -it was given by the misinformed doctors here. That is a large part of the reason for the blogs. We want everyone facing this to get all the CORRECT info they can get.
ReplyDeleteHi, I just want you to know that your sorrow and pain are very real to me and what you are doing with your blog and with all of the links to it are a beautiful tribute to your little angel, in spite of the hole in your soul, how strong you must be! I'd love to know what you think of my last posting about pain and wonder if there is anything you would like to add to it.
ReplyDeleteAnne,
ReplyDeleteI left a comment on your blog. I think you 'nailed ' it ! I think about you often and appreciate your prayers more than you can know :)