Yes, it has been months since I’ve written anything. For those of you that actually look forward to my blog posts, I apologize. My family has had to pull together during a really difficult time to help take care of the most beautiful girl on the planet, my niece. Without going into too much detail, I will say that Stevie has had ongoing health problems for the last year and a half. Now five years old, things have become even more challenging. I wish I had words to express my feelings… my feelings for how much I love her and how I would give anything to make her well again, my feelings for my sister (Stevie’s mom) who is honest to God the strongest person I have ever known and the feelings I have for my husband and stepdaughter who would do anything to be there for this family.
I will be posting a video within the next few weeks that tells you a little bit about Stevie and asks for your help financially. Stevie’s hypothalamus in her brain does not function correctly and funds are needed to try treatments and get through the medical costs that are beyond enormous.
This is a photo Rob took of Stevie at her fifth birthday party in September. Doesn’t she have the most edible face you’ve ever seen?
Does that mean we have more clarity as far as a diagnosis: a malfunctioning hypothalamus? I hope so, I know that not knowing what the hell is going on must be agonizing; at least with a clear culprit they can move forward.
Sort of. They still need to meet with the geneticist, but we know that her hypothalamus is not functioning.
I’ve got tears in my eyes. I think about all of you daily, honestly, daily you are in my thoughts. I want to do so much more…give so much more. I am in my own tornado right now, fighting for my son continually with his “father”, my back has been giving me excrutiating pain, and I’ve had to get an MRI myself….lovely. As Jess told me….we should all live in a community so we can help each other all the time. I love you guys and I want to help you. I’m in touch with Jess, and I’m not going anywhere…!!!!!
Thank you, Heather! You are so sweet. I am so sorry about all that you’re going through right now. I hope you can have some closure… and relief from pain very soon! We hope to see you soon! We love you!
She is beautiful!! You are all beyond amazing and we think of you all the time. My daughter asks about her too. I’ve been through a lot of medical yuckiness but can’t imagine how awful it would be if it was my child instead of me. XO
Wanna know what that picture makes me think of? Sunshine. No, seriously. That’s the sweetest, brightest face I’ve ever seen.
I’m sure that this is the hardest thing you’ve ever been through. But I know you Sonie. I know that your optimism and fortitude are contagious. People like you don’t come along every day and I’ve got to tell you, I bet your niece feels as lucky to have you as you do to have her.
I admire you both.
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