As many of you know I am part of the 1p36 Deletion Syndrome yahoo group. It has been my lifesaver and saving grace almost everyday since I found it! There are some truly amazing and inspiring people on that site and I just wanted to share a bit about it.
I try to check the yahoo group everyday..I usually don't go two days without looking at it. I don't always have time to respond to some of the topics that are being shared but I do try because I appreciate it when the other parents respond to my posts. I have read soooo much about the other kiddos and their families. It's a group that I can share anything and everything about my little Sammie with and they have either gone through it or have some incredible advice about how to get through it.
Some weeks I am overwhelmingly reminded of how important the group is to me and the other members. Just in the last seven days..one mother reported her little peanut is seizure free! How exciting that is! I would venture to say that 100% of the people I know are terrified of the thought of someone having a seizure, myself included. There is nothing like being told your baby is seizure free. As the parent you are absolutely helpless in the sense that there is really nothing you can do for your child except wait. Another mother told us her story about her last days with her girl. I cried my eyes out on Sunday reading about her and her daughters struggles during her last months. How to respond to this? I can't possibly begin to imagine what it's like to lose a child and hope to NEVER be in that position. Another mother told about an upcoming surgery on her little one's spine that is very risky but must happen sooner that later. Another was writing about her 20 month old not being within the growth charts..something my Sammie has never been in either! And another was telling us about her little one's Cardiac issues. Of course there is always good news on the site to! But some weeks are much more medically busy then others.
And I sit back and think how darn lucky I am. My little Sammie is plugging away right now without any major concerns at the moment...phew! I send my thoughts and prayers out to my yahoo people everyday. And I am reminded to take life one day at a time and enjoy all the happy moments.
There are no other people in my life like the people on the yahoo group. They are my people...the one's that know everything about my struggles and triumphs as a parent with a child with 1p36... I can't wait to see them again!
2 comments:
This is one of the most touching posts I've read regarding our 1p36 group. I couldn't have said it any better myself! I appreciate you and everyone else in that group so much. I send my very best to you and Sammie and I too thank my lucky stars for Alayna.
Thank you so much for reminding me how precious every day is with our little ones. Sometimes I get so bogged down by the day to day tasks of raising all of my children that I forget to take a deep breath and really appreciate them. We look forward to meeting you and Sammie in a few days! Julie, Jason and Lily
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