When Brendan was just a few months past his second birthday I remember seeing a friend posting a link to this blog post on their Facebook page, and I remember how long it took me to read through the entire story.
The blog story was one woman's account of the birth of her second child and the beginning of their journey with Down syndrome. It is raw, and honest to the core. She had not had a prenatal diagnosis, and even though we did I so related to every word that she poured into that blog, and before I closed out that window from her birth story post, I became a follower of her blog.
Kelle Hampton is the author of the blog "Enjoying the Small Things", and she is a great writer, an amazing photographer and the kind of mom that I wish I could be with all of the fun crafty things she does with her girls (very Auntie Jo like, although I don't think she has had the Nativity re-creation..that is still unbeatable!) She is not an expert on Down syndrome, she is an expert on being a mom of two girls (soon to add a boy) and an expert on the ups and downs of having a child with special needs, well about as much of an expert as I am!
When she announced that she was writing her memoir I remember wondering if I really wanted to read it, especially remembering how hard it was to complete reading her post about Nella's birth. The day it came out, I didn't go out and buy it, and I didn't buy it the next day either. Then I kept seeing people post on her blog about how great the book was, and well on day 3 I bought it..
I would love to say that I read the book in one sitting and it was amazing, but that would be a lie. First of all, if I was able to read more than 10 pages at a time that would be a HUGE victory.....no need to go into any stories of the shenanigans of Rory, Brendan and Jack... I made it to page 6, that was it. The words "I will never forget my daughter in my arms, opening her eyes over and over...she locked eyes with mine and stared...bore holes into my soul. Love me. Love me. I'm not what you expected, but oh, please love me."
I was done. My mind went back to November 2007 standing over Brendan's incubator in the NICU at Wilford Hall in San Antonio. I remember looking at him, his eyes were shut as they were for at least the first week of his life, and he had an EEG machine wrapped around his head to measure his brain activity. I said a million times in my head, and to God, I don't care if he has Down syndrome, I just want to be able to hold him and be his mom, please make him OK. See, it didn't matter that we knew that our child had Down syndrome before he was born, until we saw him, could see the 'tell tale' signs of Down syndrome, I don't think it was going to sink in. Then he was born fighting for his life and Bryan and I didn't care, Down syndrome was not our first concern, getting him breathing on his own and getting his heart fixed became the priority.
For those reasons I think I had a very difficult time getting through 2 pages before my tears would drip onto the typed words. I have heard people say that when parents find out that their child isn't 'perfect' that they grieve the loss of the child they had anticipated. I guess I never understood that until I read Kelle's book and was brought along her emotional journey. I had many a Wednesday night sitting in my car in the church parking lot after I had dropped Rory off at CCE (what I knew as CCD) and reading my book with 2 small packets of tissues next to me. (I had to make sure that I wasn't parked too close to someone else because I was sure that there would be a knock at my window to make sure I was alright, and trust me...it would have been ugly!)
Anyway, this book is amazing, and very personal. It helped me to sort through some of my emotions and heck, sometimes you just need a good cry. More importantly this isn't just a book for parents who have a child with Down syndrome, I think it's for anyone who has had any challenge or struggle. If you don't think so, just pick it up and look at her amazing pictures...stunning!
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