Developmentally delayed. I hate that word. Delayed. I suppose it implies hope, as in, "Mrs. Cheever, your train will be delayed, but not to worry, it shall arrive momentarily." Well, we can't see Jane's train, but we can hear its distant whisper.We don't have all the answers, but we discovered a few things these past few weeks. A recent MRI showed the same damage initially seen on her first MRI. That is, scarring in the white matter of the brain that affects vision and vision processing. Initially not thought to be significant, they now think this is the primary source of Jane's issues. This scarring follows a pattern similar to premature babies, although Jane was full term. How the scarring happened is a bit of a mystery, although they think it occurred during pregnancy.
So, here we are with a little more knowledge and a little more hope. The damage is done, and she is moving forward and making great progress. No more seizures. Steps here and there. Small things, like how she quietly folds her arms for prayer, even though she doesn't say the words. A small, imperceptible wave goodbye.
What of her future? She'll set her own course, improving steadily and surely. It is a blessing I shouldn't forget. For my reality check, I sit in the neurology clinic at Primary's and watch the other parents. Some parents breeze in, navigating their wheelchair-bound child effortlessly, and check in with a smile. Whee! Other parents can barely hold it together. I watched parents of a teenage girl who was mentally disabled and they just looked so exhausted.
I don't know what kind of parent I am. I know I won't do therapeutic scarf-dancing. I know I feel guilty for sometimes wishing she were normal. I know I'm scared for her future. I know that I will hunt anyone down that is mean to her and run them over in my white minivan. Most of all, I just love her.
I love her gentleness, even when she "helps me file the papers".
I love her blonde curls and sweet smile. 
I love her patient way of figuring things out.
I love her growing strength.
I love her curiosity.
I love her determination.
I love her.
8 comments:
What a beautiful post! It made me cry. Jane is such a sweetheart and we are glad that she is in nursery with us. If nothing else, that calling allowed me to get to know her better and James and I both adore her.
I'm glad she is Bridget's age and that they can be friends. What a great thing for both of them!
We're glad you moved down the street from us!
That was the most honest, open, and raw posting you've ever done. I loved it. We've talked about it a lot before, you are still figuring out your "new normal". Some days "normal" means different things. On hard days you should read the last half of this posting again, the things you DO know and the reasons why you love her. I'll bet you could write a book using the life lessons that Jane is going to teach you and Ed. Thanks for the update, I was wondering what was up with you guys these last few weeks. I love Jane too, I think she is amazing and beautiful!
Yay Jane! She is so darling. I love the picture of her looking out the window. I'm glad to hear you guys are getting some answers and that Jane's improving and developing little by little. She's such a sweetie.
The scarf dancing thing makes me laugh...
way to make me on the verge of tears. I don't know why, but i thought of grandma sitting in the recliner rocking jane back and forth singing rock a bye baby.
way to make me on the verge of tears. I don't know why, but i thought of grandma sitting in the recliner rocking jane back and forth singing rock a bye baby.
Aw, Cath! You made me cry. There is nothing like a mom's love. Jane is such a sweet little thing.
Loved your post! Jane is adorable and precious and YOU are a fabulous mother. :)
I didn’t expect to cry when I started reading your blog, and yet I loved your post. I remember when we took Ashlee to Primary Children’s hospital to be tested for leukemia, and just watching all the caring, tired, and worried parents come and go, and I thought how I didn’t think I could be one of them. Fortunately for us, it was something much easier to deal with. You have always been one of my favorite people because you live life with such grace. Thanks for sharing.
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