Comments for Ramona Mae

Comment on 22q11 Deletion Syndrome by Alexis's Grandma

Alexis's Grandma — Tue, 23 Apr 2013 04:15:14 +0000

My prayers go out for Ramona, Our granddaughter has 22q11 too. She is still in the hospital and it has been nearly 6 months. Over 30 surgeries. God Bless

Comment on 22q11 Deletion Syndrome by Heather Abbott

Heather Abbott — Tue, 23 Apr 2013 04:04:51 +0000

My son is 2 and a half and also has 22q11.2 Deletion Syndrome. If you ever need to talk, let me know.

Comment on Many Mansions, Part Three by pollyspresent

pollyspresent — Wed, 17 Apr 2013 22:04:35 +0000

“We love you just like you are. We’re all missing something. Don’t worry about it baby.”
What a beautiful love story!
Thank you for sharing this Jane, it is so well written and moving.

Comment on Many Mansions, Part Three by Anne

Anne — Mon, 11 Mar 2013 01:12:46 +0000

Thank you, Jane (and Andy), for sharing your story as well as dear Ramona’s… and for labeling all of those emotions, even the illogical ones like guilt. I appreciate your leading us with your insight into those many sacred rooms… the Kingdom of God. Bless you both and brave Ramona too.

Comment on Many Mansions, Part Three by janel

janel — Thu, 07 Mar 2013 05:30:08 +0000

I feel honored that you shared this journey with all of us again. Thank you for your vulnerability over and over. Your whole family is amazing.

Comment on Many Mansions, Part Three by Lisa O

Lisa O — Tue, 05 Mar 2013 17:53:36 +0000

This is a beautiful story, Jane. Ramona is such a cool kid and I feel so blessed to be a part of her awesome life. She really is a gem and will accomplish everything she sets her mind to do. She is so lucky to have such a nice family in all of you. Thank you for sharing your story with me.

Comment on Many Mansions, Part Three by Tracy

Tracy — Tue, 05 Mar 2013 02:03:37 +0000

As a mom with a 22 Q-tie I can offer a word of wisdom–Ramona will do what Ramona wants to do when she wants to do it. That is our motto with our now three year old. We have severe delays, feeding issues, developmental issues and a myriad of other medical complications. But, I thank God everyday that He brought to me exactly the way that He did…He is perfect and only gives us the road that we were meant to travel. Blessing sweet Momma—you are exactly who He has called you to be!

Comment on Many Mansions, Part One by Big PaPa

Big PaPa — Fri, 01 Mar 2013 19:32:53 +0000

What a magnificent job you have done with this story! It brings back many memories of tearful and extraordinary prayer sessions with the Lord and the assurances that came as a result of these sessions: a process that has yielded a special love for Ramona and the extraordinary spiritual interactions with heaven which I can never forget.

Ramona is especially blessed and gifted. She has a place in God’s kingdom and will have a role in and contribution to it that is commensurate. Ramona has had a significant affect on my life, and I hope I live long enough to see her mature and flourish.

I love you,
Wayne

Comment on Many Mansions, Part Three by Jen Ostrum

Jen Ostrum — Thu, 28 Feb 2013 16:13:16 +0000

Ramona’s story is lovely, Jane. You write in such a way that I feel like I was in the Panic Room with you. May you be blessed with a lifetime of news without the snack cart present.

Comment on Ramona So Far by Jane

Jane — Mon, 14 Feb 2011 04:01:19 +0000

Hi Tanya,

It is such a shock to learn your child has such a serious diagnosis. I would be honored to talk with her when she’s ready. Everyone deals with this sort of thing differently. At the beginning I was not very interested in talking to other families affected by TOF or DiGeorge. I think I just really didn’t want to be in that “club” and talking to another mom would make it so real. Your daughter may just need more time to find her own way through this wilderness of worry.

Your daughter is blessed to have a loving mother and congratulations on the birth of your granddaughter, I hope her days will be long and happy ones.