I remember the time when it was difficult to accept Alexandra condition. Very difficult..... She was not what I wanted or expected. I found out about myself along the way who I am and who she is.
It takes time to heal, and let grief go away. So much to let go! I had to take some conscious steps to accept and these are my recommendations.
- Each time you think she is not what you wanted, switch your thoughts right away to a thought of acceptance. Like : She is beautiful. Watch yourself closely, do not let yourself go to depressives thoughts.
- One things who was making me sick, was when I was thinking of all the things she will not be able to do., and I will not be able to do because of her condition. So stop this. Be vigilant with yourself. One important step is to not compare her with the others, but to recognized her qualities.
- When I started to watch my negatives thoughts and started to replace them by positives ones everything changed.
- My recommendations is that you start to see all the small good things you can found about her. Tell her how cute she is, how strong, how interesting, how intelligent,how sweet, How much she is doing well.
Hi Catherine-
ReplyDeleteMy husband found your blog this weekend while I was in Seattle with our daughter Elle, who has rett syndrome (she is 2 1/2). I was attending an Anat Baniel workshop my friend out there recommended. I live in Utah and would love to get to know you and your daughter better and how this method has worked for you. I thought she had some very good points that made sense, but I am not willing to let go of her other therapists (physical therapy, etc.) right now. Anyway, I will read more of your blog later, but I have to make dinner now :)
I commented on this post, because I read a quote about a year ago that has inspired me so much and wanted to share with you since this post was so nice about the same kind of subject. It is by Joan Ryan, from a book called The Water Giver:
"Motherhood is about raising -and celebrating- the child you have, not the child you thought you'd have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher that turns you into the person you are supposed to be."
That quote made me cry every time I read it for about the first week because it rang so true to me.
Elle just got diagnosed about 2 weeks ago and we know very little about her particular variation right now, only that it is a unique mutation. We will know more in early May when we meet with her geneticist at Primary Children's Medical Center.
Your daughter is lovely.