I’ve started writing another blog for our local newspaper ( www.blogsmonroe.com/moms ). I try to keep this blog mainly about Angelman Syndrome and the other one is supposed to be focused on local stuff, and general parenting, and completely random.
But I’ve yet to mention Maddie and Angelman Syndrome. I have a lot of guilt about this. Its been 21 days of blogging over there, yet I haven’t made mention of Angelman Syndrome. What’s the matter with me? AS is a huge part of my life.
I haven’t formally introduced any of my kids. I’ve mentioned them of course, but didn’t say anything specific. Partly because of Maddie. I don’t want to be pitied.
Seriously, what is the matter with me? Am I embarrassed to have a child with a disability? Does it take away from me as a mom? Does it take away from my ability to parent “normally”? Does it make people think less of my family? Don’t I know how to just say it by now?
Every day I put off writing about Maddie, I feel like I’m making it worse. Ugh. I totally suck. : (
9 Comments
June 28, 2008 at 3:44 am
Emilie,
I am shocked to read how you are beating yourself up inside. Truly not what I would have expected of you. You ARE NOT embarrased about Maddie. Look at all she has accomplished thanks to you and your husbands devotion to her and making her life as fulfilling as your other 3 children. When your ready to share Maddie and AS with those who have not had the pure pleasure of meeting Maddie, you will do just that. Possible you simply do not wish to share your private life on such an open blog page as one connected to a newspaper? I say your instincts have gotten you and Maddie this far, so trust them. Whatever you decide to do know that your decision comes from deep within your heart and it will be just as it is meant to be. Your a fantastic mom! Do not doubt this for another moment. Thinking of you….
June 28, 2008 at 4:09 pm
I couldn’t agree more with what Donna said. Sometimes people are too hard on themselves and fail to see just how great they really are. If we are lucky we have good friends to point that out to us when we are down.
Emilie – You are a driven woman and it’s a good idea IMO to keep challenging yourself. Just take the time to lean on your friends when you need them. That’s what we are here for.
June 29, 2008 at 6:01 am
I think that waiting isn’t always a bad thing. It gives people a chance to get to know you, get to know your family before anyone gets a label or preconceived idea about you.
In my own experiences, people remember first impressions. Sounds like you are giving them a first impression of you as a “normal” family. There is nothing wrong with that. You have plenty of time to bring up all of the things that make your life special and to share challenges that may seem unique to others.
It’s late. I hope this came out making sense and I hope I haven’t somehow offended you.
June 30, 2008 at 2:54 pm
I don’t think you’re embarrassed at all about it. I think you’re a lot like me and you just don’t want people to pity you over something that you don’t feel sorry for yourself about. Our Angels are amazing and are such a joy in our lives that we wouldn’t for a second want someone to get the impression that we are upset or resentful about having a special needs child. I also think that when I mention things like that I always get the “ooh, I don’t know how you do it” and I don’t really care for that because I’m not supermom and don’t want others to feel like I’m more than I am.
I think that someday there will be that perfect article that you write that will have a place to talk about it and then you will. It will flow just like the rest of your writing and it won’t feel like you’re looking for anyone to have a different impression than they have of any of your other writings.
I hope this makes sense. I haven’t gotten over there to check out that blog yet but maybe you could put a link to the Angelman website and then if someone asks about it later you can bring it up. I find with myself, in my blog, that it was easier just to put the Angelman link than to go on and on about Peyton and what it is. If someone wants the details then they can check it out. Many have and are quite impressed with the website.
You’re a great Mom and have done wonderful things with Maddie and that alone shows how much you love her and respect her.
July 2, 2008 at 8:31 am
Donna,
You’re too kind! I hoped nobody would find this post offensive. I love Maddie so much, I just feel awful for not “explaining”.
But I’ll take your reply as an online hug! Thanks.
Emilie
July 2, 2008 at 8:34 am
SC,
You’re too kind too! I’m too ashamed to bring this subject up in real life. I’d probably cry.
But you do have a point, I’m sure my friends would be supportive and just let me cry it out.
Thanks.
Emilie
July 2, 2008 at 8:35 am
Joanne,
Thank you! Not offensive at all.
Now if I come back in another three weeks and STILL haven’t said anything, all y’all need to kick my butt into gear!
: )
Emilie
July 2, 2008 at 8:40 am
Jennifer,
Thank you for such nice words. Geez I should whine and pity myself more often! (jk!)
I debated whether to link to this blog in my first post. Angelman Syndrome has changed my life. But I chose not to link.
The ASF Walkathon is too far away to wait on that, but that would have been a natural fit.
Thanks again Jennifer.
Emilie
July 18, 2008 at 1:06 pm
[...] OTHER blog Jump to Comments I wrote about not having introduced my kids on my other blog in this earlier post. Thanks for the encouragement from those who replied. I went ahead and did it, you can find [...]