Thursday, February 17, 2011
tear................
I was just going through my computer routine. I'm sure many people do this. Check email, check facebook, check blogs, etc. I had company during my routine. Finley Faith cuddled up beside me with her binky and blankie and had her head on my shoulder quietly watching what I was doing. I got to my blog, scrolled down the page and came to the birthday post with the baby pictures of Livia. She perked up, pointed, and said baby..........HOLD! She loves babies! I then told her that they were pictures of Livia when she was a tiny new baby. Finley then said "aaaaawwwwww, Livi-Loo." I immediately started to tear up. I love it when Finley calls her sister Livi-Lou, or sissy. I couldn't help but get emotional about their situation as sisters. I pray so hard that Finley doesn't have to ever know the word terminal when it comes to her sister. I dread the day she starts asking questions or we have to tell her something scary about Livia. I don't dweal on these thoughts, but at moments like this it's hard not to think about it. I thrive on the love and support of my sister. She is one of the most important people in my life. I'm so blessed to have such a great relationship with her. I admire her, look up to her for her wisdom, kindness, and unique self. I can't imagine life without her. I was so excited when we found out we were having a second girl. I was excited for their relationship. I hope and pray that my wishes for them will come true. For now, I love the sisterly relationship they have today. I'm blessed to have both of my girls. Livia full of Grace is my tender hearted angel. Finley full of Faith is my miracle. I'm blessed to have both of their unique and special selves in my life. I love you, girls!!!!
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I'm reposting my comment since I'm not sure if my other one went through. :) Here goes...wow. reading about your daughter is like reading about my own. the delay in walking, loud breathing, runny nose, seizure like activity. we just turned in a urine sample for our daughter (lexi, our youngest, 3 yrs) on jan 6th, results came back high for mucopolycsaccharides so the neurologist ordered another round. once again her level came back high (19.8). we have 3 biological children and our youngest (lexi) we adopted. the neurologist has now referred us to a metabolic disorder doctor and suspects that she has san filippo syndrome. i'm not sure how i found your blog...google or facebook...but i am searching for information hoping and praying that the neurologist is wrong. although i have a pit in my stomach and am afraid he is right. thank you for sharing your story.
ReplyDeleteJessy,
ReplyDeleteI'm so sorry you are going through this. Please email me at kelfish121880@hotmail.com with your info. You can also find me on facebook under Kelly Fish Hubert. Thank you for your comment. I'm here if you ever need to talk!