Summer is ending!!

I cannot believe summer is ending….it went by so fast, with fall approaching I am so scared and worried for my little girl, we have been able to keep her healthy these past 6 months but not sure what the future holds for her and us. We are preparing to enter “Lock Down” mode, I know it has been very hard on some of our family to not be able to see her, and believe me I want to show her off to everyone but it is just so important to keep her healthy we just need to stick to our rules, everytime we even go near Scneiders Hospital Sophia becomes visibly upset and I will do anything to keep her out of the hospital… we wont be taking her out at all unless for Dr. appts and we will be very careful when we leave to wash up and change our clothes when we return home, sometimes the thought of everything you have to remember to keep her healthy is exhausting and frightning….Vinny will be returning to work shortly and I am thinking about how it will be with Sophia and I alone all day, sometimes I get very depressed thinking about all the things we cannot do together, I need to focus on the things we can do and try to stay positive….. We received an amazing gift in the mail from Bill and Victoria Strong , there daughter Gwendolyn has SMA type 1 as well www.gwendolynstrong.com it is a childrens book called “Thisbe’s Promise” the story is about a little girl who because of illness is confined to her room and bed, and the bond between the mother and daughter reminds me of my Sophia and I, the story has touched my heart and I urge any mother with a child with disabilities to read this book, it has given me strength and courage to stay positive for my little love….

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