It was on the weekend where I cried to Doug after we had gone to our room for the night as the grief loomed over me once again. I was so disheartened that she can't or won't use the toys appropriately. It makes my heart ache as I watch her play in such a toddler-like fashion. I was angry that things have been bought for her and she isn't able to use them for their purpose. I ask myself many times over as to what would be a better play thing for her? What would she enjoy playing with? And nothing comes to mind. I simply draw a blank. She likes playdoh but can only do that for a certain amount of time. She loves playing in water but I can't have her sit in the tub all day either. When I see kids her age and younger exceeding her academically and developmentally I am saddened by it once again. It means that homeschooling her requires my imagination, creativity and time so I can create a unique to her curriculum that will help her learn about her world.
I have learned (and am still learning) that I can feel this way. It is okay for me to be hurt and to cry over this stuff. I occasionally feel helpless and that transforms into guilt. But I am doing the best that I can for Sarah. I am a good parent and the best one for her. I also have to remember to separate Sarah from her diagnosis's. Cerebral palsy, microcephaly and developmental delays are what Sarah has, not who she is. These have become part of our "normal" and are simply a part of our lives now. We are learning to adapt to her and her needs, like needing to go to a different park because there are too many kids already or because construction crews are running their loud machines close by. I am grateful for the flexibility of a friend who made it so simple to pack up and find a new place to play.
After I let it out, Doug reminded me of the wonderful things that Sarah does. By simply taking her camping last week, I gave her the "best day ever" every morning. It takes a drive to a park with sand to delight her and make her day complete. And when the day comes to an end and her teeny little arms wrap tightly around my neck I am reminded once again of the amazing gift that she is.
As Doug said to me earlier today, perhaps those joys are made all the sweeter because they come in spite of, and likely because of who God made her to be.
That was beautiful. It's not always easy, but it is always worth it. Hang in there!
ReplyDeleteI love the permission you give yourself to feel the way you do and then the truth you speak and know who you are as her parent. Beautiful post.
ReplyDeleteStephanie - I am the mother of a young woman with Down synsdrome. She turned 24 in May. Believe it or not, I still have to allow myself space and time to feel grief at the loss of a 'typical' child. She's not. But you and your husband are so very wise in looking at all of the things your Sarah can do - look at all of her accomplishments. I wouldn't trade my Sierra for a world of typical children; I can't begin to tell you how much she teaches me, the light she shines on everyone she meets, how she demonstrates a purity of spirit and faith that transcends what is considered a disability. I think of it as a different ability. Your words remind me of how debilitating comparisons can be, yet we live in a world of comparison, don't we? I pray that you and your husband continue to strengthen each other, listen and support each other. You are on a journey. An adventure. (Oh! And don't sweat the play-doh - she's playing with it in her own way...) I hope you have a blessed week, I'm your new neighbor at the Special Needs Blogger Link-up - apparently late to the party. :)
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