This year Halloween was pretty much as perfect as it can get. It was beautiful weather, my darling little Elle got to dress up and trick or treat for the first time and we finished up the day with a steaming bowl of chili and cinnamon rolls( a weird N. Idaho combination I still really don't understand...)
I am usually a last minute costume shopper, but this year was a little different. I connected with another mother, Melody, who's daughter also had Alpers( read about it here) like my older two children. Her daughter passed away this year on my son's birthday...she messaged me that day and we bonded instantly...not just because our kids passed away, but because of this story she told me.
Here is her story in her words...
"Leah came home from the hospital (she came home the day before Thanksgiving). She was initially doing very well, much better than when she was in the hospital. She had a g-tube placed the beginning of Feb. and I guess it was around April/May she first started to deteriorate. She was sleeping more and just having a harder time. It was extremely difficult for me to see knowing this was truly the beginning of the end for my only baby. One night, a particular bad night for my girl, I was very emotional and just a mess. When I brought her to bed with me, crying and holding my beautiful girl's hand, I prayed and I prayed. I prayed for a sign that after she died, she would be okay. I needed to know she would be okay and not alone. I never left her...even before her seizures started, I could never not be with her. And it was tearing me up in side to know we would be apart. I honestly thought about taking my own life to be with her, so she wouldn't be alone. So, I prayed for a sign and cried myself to sleep. That very night, I dreamed of your angel. Averie came to me and although she never uttered a word, she told me Leah would be okay. It was as if she did speak, but I didn't hear her with my ears....I heard her with my heart and soul. I would never be able to convey the peace that gave to me. I believe your girl was my sign from God. I was able to come to terms with my daughter's death afterward. I was still heartbroken and sad. I still would sometimes cry myself to sleep. But, I knew she would be okay when it was her time and I didn't feel or have thoughts to go with her anymore.
She died on August 29th. She was 19months old. Come to find out, this was your other angel's birthday....I took it as an additional sign, my girl was in good company in heaven."
I cry every time I think about Melody's story because I know that she has found the peace that I have...we are far from done grieving, but I know that our angels are there with us and everything is OK. She, like I, uses her creativity as an outlet to deal with the grief. She sews the most beautiful children's clothes...they are such good quality and you can feel the love she puts into them.... I would buy everything she makes if I could afford too! One day she posted that she really wanted to make a Dorothy costume...which just happened to be my daughter Averie's favorite movie. She watched it all the time and even dressed as Dorothy one year for Halloween. We actually had Wizard of Oz on loop during the last month that Averie was at home before she passed away. She couldn't communicate with us, but every time the movie was on her heart rate would calm down and she seemed so at peace. I mentioned this to Melody and she insisted on making and sending Ellery the costume. Bless her heart!!
Averie- Halloween 2009
Of course you can imagine how much this touched me...it just seemed like my little angel in heaven was sending me a message this time...letting me know she would be right there with me always. Within a couple of days the costume was here and I was bawling like a baby...it was so beautiful and brought back a flood of memories that I will cherish forever! Do I have you crying yet? Cause I am... If that's not enough, we are doing our 2nd Annual PICU Gift Drive and one of the book/toy sets is Wizard of Oz and Toto! I don't think that is a coincidence!
Here are some other pictures from Halloween this year...!