The Reality We Live With

There is a blog that I follow from time to time and an entry from a mom who has a daughter who not only looks like Sarah, but has some similar issues. I posted her entry below along with her Website because her post really hit home for me and describes the way I feel.

From http://babybrookie.blogspot.com/

"I spend quite a bit of time focusing on the positive in this blog. You'll notice that there are large gaps of time between postings. We live a good life, a happy life, a life filled with love and laughter and all those things people hope for. I won't take away from any of that for a second. With that being said, I feel as though I sometimes misrepresent the reality we live with. I don't know if I do this for everyone else or for myself. Perhaps I feel guilty being entirely realistic. Perhaps I don't want to put it all down in writing, because that's admitting it to myself and facing the truly difficult life we live. And I thought to myself . . . how could everything look so perfect, yet be so miswired inside. How could this life be so cruel to my little angel? Her long dark lashes were resting so perfectly on her pink cheeks and her curly hair lay peacefully on her pillow. When I look at her like that, I can imagine her opening up her eyes and smiling at me, saying "Mommy" and reaching up to cuddle. I can imagine her hopping out of bed and running to Julia's crib to see if she is awake. That's what Brooke wants to be doing!

I am thankful that my little girl does smile. She may not look at me when she smiles, but she smiles at me. She is saying "moma". She likes to cuddle and hug. I am so thankful that we can share those human necessities. I realize that so many people don't get that from their children. I don't take it for granted. But my God . . . I want her to walk. I want her to not be frustrated because she can't crawl and speak and digest her food. She is on this diet that we are so grateful for. Without it, she would still be seizing multiple times a day. Without it, we may never have met the Brooke that we know now. Again -- with that being said -- why can't she live without this diet that makes her stomach cramp, constipates her to the point of needing daily Miralax, tastes horrible, and restricts her eating so severely.

Why!!

Tonight she threw up for the 2nd time today. This simple head cold is a lot for her inexperienced body to handle. She struggles with the mucus because her brain cannot tell her muscles to fire correctly and expel it from her lungs. She gags and cannot stop herself from loosing it all together. We take a little Robitussin or NyQuil and move on with our day. Brooke cannot take these medicines because they contain sugar and that would put her out of ketosis.

She's asleep now. We have the head of her bed elevated. We have blankets rolled up holding her in place. We have her hooked up to her pump with a slow drip of water and a Farrel bag that allows gas to escape from her stomach as she sleeps. That is our reality tonight. One last time -- with that being said, she lays there with her long dark eyelashes resting on her beautiful cheeks. She has her Binky in her mouth, and she is hugging the teddy bear that lights up her bed at night. She looks perfect. Minus all the tubes and strange bed, she looks so perfect. Like she was supposed to end up with this hand in life. Like we were all supposed to be blessed with her. Then again, she also looks like she should be able to crawl out of her sleep safe bed in the morning and into our bed. Like she should be able to wake me up to make her sugary cereal or pancakes.

We have so much to sort through on a daily basis. This is an exceptional life that we live! We have been given a chance to experience something most people never come in contact with. Tragedy mixed with pure joy and love. They can all be wrapped up in one congruent package. I can feel the worst pain and feelings of loss and anger and in the same day I can feel so much hope and certainty. Quite amazing, this life I have been given. Thank you for choosing to be a part of it. Thank you for allowing me to share it with you. And from now on . . . thank you for letting me be very honest about it all -- for all of our sakes."
Posted by Brooke DeMar

Posted by Sarah's Mom at 1:15 PM Permalink