Brandon and I have remained so optimistic in reference to Demi’s needs and future for the most part. Obviously there are many moments when I feel very overwhelmed and scared concerning all of this, but I truly hang on to the fact that nothing is impossible.
The eye doctor told us that she would likely not be able to read and would need to learn to read Braille. When we talked about her surgery we understood the purpose is not to increase her vision but that it is, in fact, a possible outcome. She is so young so it’s hard to know what she can and can’t see. I know there are tons of very successful people with visual impairments who have families of their own. That’s nice to see and hear about, but it really doesn’t settle my own feelings for Demi at this time (this statement is not in reference to stories people have shared with me. Continue to share them). I know we will be fine. I know she will be fine. We always are and we always will be.
Yesterday I received a package for Demi. I had signed us up for free Braille books. Our first book was in this package. It was a sinking feeling to open that package. I’m not sure how to explain it. I just keep telling myself that Braille is just an option and I’m keeping all options open for us. It’s a tough pill to swallow and I’m not ready. I’m just not ready. I still feel like there is unfinished business with her eyes before I have to accept anything. Some people may think it’s denial. Others may see it as optimism, just as I do. Either way, it doesn’t really matter. All that matters is that I maximize all options for Demi and fight to give her the best that I can, so when I lay my head on my pillow at night I know she is getting the BEST from me. So far, I feel as though I’m doing just that.
It was Gods design that we had made plans for me to stay home after having Demi. I’m so blessed to have this opportunity with my children and so thankful. I never imagined my stay at home journey would look like this. We have been on “house arrest” for 4 weeks. Demi’s meds are suspended due to her immune system dropping but we are hopeful. I’m ready for my girl to be back on her meds. I’m ready for my family to be able to leave the house. I’m ready for Beau to start school. Not because I’m worn out, tired, or frustrated but because he really needs some time to play and have fun with friends. We have limited his exposure to other kids in this past 4 weeks as well. We can, so we have. Once he starts school, that will be a lot harder to do.
I’m so in love with her sweet soul already that I can’t even fathom what joy she will continue to bring to us! I have noticed her interactions with Beau as of late and it’s absolutely precious! He loves her and she is seeming to enjoy him as well!
Lab work tomorrow! Big prayers for big numbers so we can restart meds!! Believing in our God for some big moves too!
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I discovered your blog on Facebook. I went way back and read a lot of your story. Thank you for sharing. You and your precious Demi and your family are in my prayers.
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