Saturday, June 1, 2013

:(

 I don't know if it's the hormones or if I'm just long overdue a good cry, but last night and today have been rough. I find myself mourning the toddler I am missing out on if Naysa was a neuro typical child. I was reading to her last night and she did her usual feeling of the book but not paying any attention, head back and forth and I just started to cry. Here I am so desperate to bond and read to my baby girl, wishing she would bring me book after book to read to her or read the same one over and over while other parents are ignoring their kids or telling them to go play by themselves. I want to constantly be picking up toys because SHE left them all over the house, not because I pulled them out to play with her. I want to step on barbies in the middle of the night and have princess tea parties. It's so unfair and today I can't handle it! Don't tell me to be thankful, she's come so far or anything else you are thinking to say because I KNOW! I know you mean well but until you've been in my situation and know the things buried deep down I would never dare share, you cannot say anything to make it better so please don't even try. It's not fair my girl gets so frustrated because she wants to talk but can't, it's not fair I know she would be so much fun, so loving, so funny and kind if she could do things like a typical child. Why isn't she progressing?? All of the therapy, the diet, the supplements, the time, the repetition...why can't I help her?? I feel like there is something I'm not doing and I don't know what. I feel like I'm failing her and it's making me lose hope, lose motivation. I just want to hear her say a word...any word, a clear, intentional word.

4 comments:

  1. I have a granddaughter with lissencephaly, microcephaly, cerebral palsy, epilepsy and blindness (to name a few). I just wanted you to know that I read your beautiful blog and it touched my heart. My daughter sometimes writes about those buried things that you think no one shares in her blog at anabellerose.blogspot.com You are entitled to have really bad days. Much has been asked of Naysa in this life and of her parents. My wish is that tomorrow you find the strength to keep moving forward. Just wanted you to know that your words were read and felt. All best to your family.

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  2. Love to you all, but NEVER EVER lose HOPE and you most certainly are NOT failing this dear child

    i read everything you wrote and am always touched by all you write its from the heart
    thinking of you Ashlyn as i often do ..... ((hugs)) xx

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  3. Thank you, it means so much you take the time to read and follow my ramblings. I'd love to get in contact with your daughter if possible? & Liesa thank you for the love as always :)

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  4. Ashlyn,

    Keep your head up and remain strong as you do every day. Naysa is a beautiful darling girl, and I am grateful to you for sharing her story. I can only imagine the grief, heartache, frustration, joy,hope, and complete love you experience each and every day. Just know you have a community full of people that are your support group if and when you ever need us.
    Wishing you and your family the best,
    Tammy

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