Some background info:
My name is Brook. I am married to Jake. I have twin daughters, Sydney and Carynne. They are beautiful sweet girlies who were recently diagnosed with Werdnig-Hoffman Disease. I am devastated. These days I feel like I can’t keep the thoughts in my head straight so bullets will have to do.
Today:
- Today we celebrated the girls’ 5 month birthday with a princess party. They weren’t really into it because they were tired and overstimulated.
- Today my mom and dad brought us their generator because the girls are using so many machines that we can’t survive without electricity.
- Today Carynne threw up and scared the shit out of me…I didn’t have the suction machine put together and it felt like it took forever before I could help her get her throat cleared.
- Today I told my mom and dad that I don’t want to bury the girls in my hometown, an hour away from where we live now, because I can’t handle the thought of being that far from them.
- Today I was mad that I had to think about my girls dying.
- Today I didn’t cry.
I feel bitter today. Almost angry that I have no control of time, or genetics or breath. It was so hard celebrating a birthday when I know that we’re just trying to get in as many birthdays as possible before there are no more. I’m out of words. I wish that I wasn’t feeling so down; I wish that nights weren’t so hard. I feel like I am trying so hard to soak in every single minute of my girls’ life that I come down off of this high at the end of the day. I know that some days will be easier and some days will be harder, but today is just bittersweet.
Nevermind…Today I did cry.
my heart is breaking for you as i write this with tears pouring down my cheeks. we do a prayer for your family everynight at bedtime. much love,
goldenmama
I came across your story on The Bump. It breaks my heart. You are a very strong woman and it sounds like you have a good support network. I will keep your beautiful little girls in my prayers.
Brook you are a very strong women. I have been a member of the nest for a few years, and although I don’t have multiples, I have seen you post many times. You, your girls, and your family are in my prayers.
I just wanted to tell you that, even though you don’t know me, you, Jake, and your sweet girlies are in my thoughts and prayers every day. My heart is breaking for you.
Love,
Kris (aka Krisc)
I smile and cry everytime I look at their pictures. They are gorgeous. The girls and your family will be in our thoughts and prayers. Enjoy every moment with them, they are so precious.
Ann (aivi08)
Hi there. Someone from my car seat message board came across your blog and asked me to come and see if I could help you with your unique situation. I am a car seat tech, with special needs experience. And I am also the mom of a little boy who passed away from SMA Type I in 2002. I am so sorry to read that you had to be introduced to SMA this way. Your girls are absolutely beautiful. I am heartbroken for you.
Anyway, if you would like any type of help, be it car seats, or just a supportive shoulder, please let me know. I am looking into what the possibilities are for transporting your girls around with the current situation and I would love to try to help if you are open to that.
We also run a nonprofit organization helping families who are dealing with SMA. http://www.marshallsmiles.com
We have also made many friends at the national chapter of Families of SMA http://www.curesma.org and I know they would be glad to try to help as well. Hang in there.
~Laurie Potter
I guess it would be helpful if I put my email – info@marshallpotter.com