AKA: My sister takes some nice pictures!
June 1, 2011
by marfmom
2 Comments
May 31, 2011
by marfmom
20 Comments
On Child Harnesses
To whom it may concern:
Last night, my family and I just wanted to take my sons for a walk through the UW campus: get some dinner, watch the boats while eating ice cream over at the union, enjoy the sunshine. Although you couldn’t tell, we’d had a rough morning because we’d attempted to take my older son, M, to the zoo. He’d had a sensory overload meltdown. We were pretty happy to be able to get out in the evening then.
The first group of you, I guess you thought my sister couldn’t hear you mocking the harness my son was wearing, but she could. The second group of you, being drunk didn’t make you funny (& seeing as you looked old enough to be my parents, you should know that), but it did make you a little easier to ignore. And you two girls who had the audacity to criticize the harness in front of me, using a highly offensive swear word to boot? Well, you got to hear what my mother and I thought of you and your judgements. I only wish I had the time to say more.
So, I’m taking a moment to reach out to you, and ask you to reconsider the things you said tonight. I know it’s hip to think you can parent better than anyone else these days, but try to take a moment and put yourself in the other person’s shoes. I realize my son looks pretty “normal”: we haven’t gotten around to making him a sign proclaiming to the world that he has autism and therefore bolts whenever he hears an uncomfortable noise or something fun catches his attention yet, so you couldn’t have known that his harness (“puppy backpack”) is necessary.
Truly though, his diagnosis is irrelevant. Do you honestly believe parents buy these harnesses for kicks and giggles? We use them because we believe it keeps our children safe. End of story. You shouldn’t even care because at the end of the day, you’re not the one going home with my child. Your comments make my job more difficult though. I’m already stressed trying to keep my son happy and functioning; I don’t need your hateful speech on top of that.
Before you make a snap judgement, take some time to consider that you don’t know – can’t know – the full story. And while you’re entitled to your opinion, no matter how wrong possibly uninformed it may be, also know that if you choose to make a critical remark about how I choose to keep my son safe, my Mama Bear will come out and I will verbally come after you.
Sincerely,
One ferocious mama
May 30, 2011
by marfmom
1 Comment
New Additions
First of all, thank you to everyone who voted for the National Marfan Foundation during the Chase Giving Campaign. If you haven’t already heard, we placed 22nd and won $20,000 in the second round, bringing our total grant money to $45,000! The initial $25,000 goes towards conference, to keep the clinic and children and teen programs free. The other $20,000 will go towards programs that promote early diagnosis.
Second of all, thank you to those who shared your stories last week. I’m grateful and humbled that you allowed me to share them here, and the response to them was overwhelming.
And that brings me to the new additions. First and foremost, I’ve always wanted this blog to serve as a resource. In that vein, I’m going to be opening up 3 new permanent Marfan & related disorders sections of the blog:
– a portion for diagnosis stories
– a portion for birth stories
– a portion for adoption or surrogacy stories
If you’ve shared your story in the past, it will be linked. If you’d like to share your Marfan & related disorders story, just submit it to me via email (preferably with a photograph). I’ll publish it on the blog & then add a link to it in the directory. That way, everything will be in one place, easy to find, instead of having to sift through pages and pages of blog. I’m still on vacation, but my webmaster (aka Mark) and I will work on it later this week.