A lot of times I feel that time is moving on around me but I am standing still. It feels like I am counting the days of my daughters life, the countdown until a cure, but everyone else has moved on in life. My world stopped when we got the diagnosis. I know that I have to move on, that life moves on but it is still very difficult.
I still weep at watching other typical 3 year old girls discuss princesses. I still ache over the lost dreams for my daughter. It is a weird place to be in, one where I celebrate the success of a great transition to school but mourn that her first school experience is in a special needs classroom. I try to live with Rett Syndrome but I also try to hide it, not telling new acquaintances that the reason that Reagan is not at the party is because she tends to have meltdowns on our outings so she is at home with a babysitter.
It has been 1 year and 2 months, and I still struggle with coming to peace with the news.
Abby's first visit to Boston for the IGF-1 Trial
10 years ago
oh dawn im right there with you-we just have a few months on you diagnosis wise and I feel it will just continue to come and go. this weekend was rough here. lots of crying while watching her cry. its all so awful. sending big big hugs.
ReplyDeleteMore big hugs from me too! Don't rush yourself, stay where you are and let the world spin around as long as you need to, what really matters will all be there when you come back :) give yourself room and take a deep breath, over and over
ReplyDeleteIt is so hard to move on, don't worry about how long you stay "stuck" just give yourself the time you need. It does get easier, I promise, it does. There will always be days that break you but those days will get fewer and farther between. Big hugs to you!!
ReplyDeleteI hear ya! It's been over two years for us and we still have those days. It's funny the things that trigger those feelings to come out again. Like the other day I went to pick up Pei Wei and there were these two sisters, probably ages 3 & 4, and they were running around and giggling and telling secrets. I lost it. That was supposed to be my girls life.
ReplyDeletehey dawn, gosh i feel like we are in the same place! we were diagnosed february '10 so just barely over a year. i think God sent me to have my gallbladder out around the one year anniversary of our diagnosis to keep my mind off "d-day"! i hope bridget is right... that it does get easier... or maybe we just become wiser, or more at peace, or whatever "it" is called. we too leave anna at home for so many things because of sensory overload and it isn't like she doesn't know she's being left behind. the other day i went out for the entire day and she was mad at me when i got home. i asked her if she was mad because i left and she said "yes" with her eye gaze cards. of course i then started crying and cuddling her like crazy until we were all "made up" but it is hard. i countdown all the time... lots of hugs. we'll get through this....
ReplyDeleteI love you! Hang in there! You are stronger than you know!
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