Sometimes having OI just SUCKS. Poor Molly.
She has been doing so well and her spirits have been up. After we spent the morning at the splinting office Molly said "I hope I don't break another bone, but I might"... it is hard hearing about the reality of OI from her perspective.
She was sitting on my Mom's lap and just started crying out in pain. I was visiting my grandmother and rushed home to help out. She told me she was crying because she was tired and there wasn't any owie. It was clear that was not the case, but Molly really wanted to wish away her fracture. Heartbreaking.
She finally let me put a splint on and admitted that it felt better with it on. She told my Mom she wanted it off tomorrow (we're flying back to North Carolina tomorrow and I think she wanted it off to see her Dad). It is so hard that she beginning to understand that this will prolong the time in a splint and not allow her to walk and stand like she would like to. Oh how I wish I could make this better for her.
It is heartbreaking to know that your child is in pain and it is heartbreaking as Molly slowly learns the realities of having Brittle Bones.
Thank goodness she is such a wonderful kid with a great outlook and disposition. She is interested in so much and has done such a wonderful job appreciating all of the good in life.
It will be wonderful to be back home!
4 comments:
Hi Mrs. Sullivan,
I'm not sure if you remember me, but my name is Shannan Healy and I went to a session of Molly's water therapy with you last year then came to your house for a project on OI. I finished it last May but never thought to put the video up on youtube. If you'd like to see it, here's the link: http://www.youtube.com/watch?v=fsjguqf-tyk
I've been keeping up with your blog and hope Molly's doing well! Thanks again for giving me such an amazing and insightful look into your lives-it made a world of a difference! I'd love to hear your feedback on the video!
Wonderful blog you have here. I have been just reading an incredible book of Jodie Picoult about OI (http://www.jodipicoult.com/handle-with-care.html) and it struck me how strong people must be living with brittle bones and just looked around if anybody is blogging about it. I adore you all, Molly for her smile and amazing spirit to fight every day and you guys also taking care of her. Keep up with the blog I will be coming back regularly and wishing you all the best! Do not despair for any minute. Mira
oh one more thing forgot to mention - Molly born on the same day, 13 January which I mean to born as a present for my mum`s birthday but well, I wanted to come to this world 4 days earlier and celebrate her birthday at home:)
Sarah - We met at the OI conference in Omaha four years ago. I have Type 1 OI as does my oldest daughter, Leah. I think we had some good North Carolina conversations because my husband is from Burlington and all his family is there. Anyway, I just came upon your blog. This post struck me, especially the comment about Molly not wanting to have her splint on when she saw her Dad. I clearly remember when I once broke my leg while my dad was at work, and the thing I dreaded most was having to tell him when he got home. I don't know what that's all about...but reading that tidbit about Molly brought one of those moments of recognition. When we realize that living with OI is something only those of us who have experienced it can truly understand.
Anyway, I'm enjoying the photos of Molly (she was just a baby when we met in 2006) and your blog.
Ellen
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