Grace for Rett » Grace's Life with Rett Syndrome

Blowing Chunks – What a crap way to wake up

It’s becoming a 5am date for Grace and I. I stumble to her room out of a dead sleep, woken by her desperate plea for someone to pleeeeeease come save her. And before I even open the door, I can smell the vomit. Why does it happen at 5am? I have no idea. It’s been at least weekly for the past month, and now twice this week. I then have to stumble to draw her a bath while hoping beyond hope that her crying doesn’t wake the boys. And then stumble down the stairs to quickly start washing all the bedding before the smell becomes permanent. Then stumble back up the stairs to disinfect her mattress, wash and dress her. And then clean out the bath which is left rimmed with chunks of last night’s dinner. I know many dates and nights out end in puke. Our days begin this way. She’s so lucky I’m head over heels in love with her. Little madame.

Rebecca - August 5, 2010 - 10:55 am

Beth,
I went through that with Billy when he was Grace’s age. It turned out to be the beginnings of syliac’s disease. We came SO close to losing him that year! His weight went down to 8 pounds before I learned that God heals. First it was the chunks, only once a week, then the diarrhea every morning that smelled just like coffee grounds. I know that with the Rhetts, you probably have her on a glutten and milk free diet. We actually had to put him on a diet of NOTHING but rice, and bannanas for a couple of months to let his system heal(it didn’t work, and the doctors gave up). I still have nightmares about those days. I will be praying for you, Grace and the boys. As bad as it was watching my baby boy waste away, he at least could come get me when he needed me. I can only imagine how much harder it is for you and Grace. Do yourself a favor, pour all of your anger at this situation, at this disaese into prayer. I did. I ws so angry at the church for not preaching on healing. At God for letting this happen to my baby, At myself for not making the doctors listen when I knew something was wrong. Angery men take the kingdom by force. I learned to understand that statement. USE your anger!

Love you all!… PRAYING

Rebecca - August 5, 2010 - 11:23 am

I should add, for those that do not know us, that my son, Billy is almost 30 years old now. He never seems to watch what he eats, and is very healthy, and happy. God DOES heal. It is His business as to WHO He heals, also when and how. It is our business to ask Him to do it. I just wish He would hurry up with Grace’s miracle!

Samantha Turner - August 5, 2010 - 6:46 pm

Hi Elizabeth,

I used to working with your mad, funny, but very lovely husband. I have a little boy who is 4, Cameron and a baby girl Olivia 5 months.

I adore your pictures they really are amazing but I think you are very lucky to have such a gorgeous model in Grace.

I have just read this blog and it brought me to tears!! You are an amazing, strong woman. You should be very proud of yourself. Keep your chin up

Love Sam xxxxx

Catriona - August 6, 2010 - 8:18 pm

Us too Elizabeth. It’s grim. Miserable, exhausting, soul-destroying. I’ve heard people with older girls with RS say that it improves as they get older. We’ve just had a full week with no vomiting at all – amazing. It comes and it goes, we find. But we think, we hope, that it’s less frequent than it once was. Amy will be three next week. Hoping Gracie gets less pukey as she gets older. Love to you all.

angelatownend - August 7, 2010 - 10:35 pm

I’m with you on the blowing chunks,thats where God is with Grace at that momemt and He’s inviting us in,because that immense love we feel for Grace, He is going to explode into an exciting move forward in faith and love which will lead to a cure for Rhetts, but at this moment the beauty of Grace is awesome and enough to demonstrate His glory, she’s amazing! x

Mila - April 20, 2011 - 5:58 pm

Angela,
I completely agree. Also, the way Gracie loves, purely and innocently, is the way true Christians ought to love. Nothing less than that, is the way God loves us – pure and holy.

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