The sun was shining in Rochester New York! The Beyers twins and I headed to one of our favorite "old school" playgrounds made of wood with tunnels and tire swings. Blond curls and blond pony tails blowing in the breeze and reflecting sunlight; what a beautiful sight. My children captivate me. I put William in his sepcial tomato chair in the jogging stroller and pushed him to a sunny spot. Normally playgrounds and too many children make me tense. Most do not offer much for William to do; and he is too heavy to carry around. So usually I push him in the jogger and we chase Ella yet the whole time I end up feeling stressed and guilty that he is not able to do what the handfuls of other children are doing around him. Today I let go of the guilt and the stress; do you want to know why??
I opened my eyes and saw how truly happy William was just to be in the sunshine; to hear the children laughing all around him. He was smiling and cooing and I don't think he gives a damn whether or not he is doing exactly what the other children are. It has been MY sadness and MY burden that he is not "typical".... but really it's all about quality of life. Both his quality of life and mine; life is far too short....
So I am letting go of these feelings I carry around like lead weights; like I have to be A Super Mom. Sometimes mothers of children with severe disabilities can be viewed or projected as martyrs; chosen because God gives us strentgh or because we can somehow handle these challenges. Well, for me its simply NOT true. I don't have any God given strength or visions... I push on day by day; through depression and fear. I am letting go... of all those expectations; my own and those I feel from others. I am done with them. I want my life back. To face challenges with courage yet to smile, enjoy sunshine without guilt, and to feel ALIVE.
and for my closing note....one more thing I am letting go of...
this unrealistic (for William) and godforsaken (my feelings ;-)) Ketogenic diet..... William and I will not miss it one bit
Oh Erin! How wonderful for u! You are stronger for realizing that. I know what Cameron has does not even compare but I do understand what its like to have a child that will never do certain things. It's hard to watch the younger one(or in ur case, the twin) surpass the older in every developmental area. Right now I have to tell myself that he doesn't know he's different. I am the one who is sad about "this" and disappointed about "that." I think u have just vocalized how many of is feel. Many, many kudos to u for being strong enough to be ok. There r many that never reach that point. You are an awesome mom, Erin, and I'm proud to know you and call u my friend!
ReplyDeleteCris
YEA!!!! :)
ReplyDeleteHappy for you to have found this place!!! I know its far from easy, the letting go part. In terms of the diet for William, it sounded like a nightmare and am glad you can let go of it. You are an AWESOME mom and you had to give it a try to see if it could help!
ReplyDeleteI love this post Erin! What a freeing transformation.
ReplyDeleteOh Erin, I cried reading your post tonight! Your words are beautiful and you, William, Ella and Wayne deserve the sun to shine so bright!!!! Quality of life is in the eyes of the beholder and William will live a full life with an amazing mother like you. It makes me smile, and cry, to read about your moment of clarity and change. You will always push forward and you will always do what is best for you family, I am glad you are going to try to live for yourself too. I miss seeing you. I can't wait utnil Friday.
ReplyDeleteI think this is amazing - and I totally hear you about the "martyr" thing. I am NOT that. I just want to live our life, whatever that looks like. Cici also loves being in the sunshine! Thank goodness for Spring!
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