Hi,
I am over at Segullah today. (shoot, I can't find my hyperlink page..here is the link
http://segullah.org/blog/
I was asked to write about how it felt to learn about Grace's Down syndrome. I was also asked not to submit the sanitized version. The goal, I think, is to get a real person writing about a real experience. With it you get MY experience I don't (nor should you) assume that another person's experience is the same. This is my story and my journey. I realize that by choosing to share it with the world, I am opening myself for criticism. That is OK, but it doesn't mean that you can't hurt my feelings. Just as you shouldn't assume that you know ME via the things that I write here or on any other blog, I won't assume that I know YOU via the comments you write. I might think you are a big fat meanie and spam your blog if you write something that makes me cry, but I WILL try and remember that there might be more to you than that. Let's just play nice. OK?
If you are coming to this blog FROM Segullah, welcome. I am Rebecca. I wear many hats in my life. Mostly I am a regular ordinary mom that could stand to loose a few pounds and never keeps up with her laundry. I am the mother of four small children. Two of my kids have special needs. Two of my kids are adopted. Two of my kids are black. Two of my kids are biological. It is kind of a grab bag in our family. I have learned along the road that I am capable of more than I thought, to be thankful for the tender mercies that Heavenly Father extends to mothers and to just laugh a lot. It takes as much work as crying, but people like you better if you are a laughter rather than a crier. There you have it.
P.S. Las Vegas update (titled "Las Vegas is NOT an appropriate place for children" by Lulu B, age 8) coming tomorrow as well as the explanation of the famous "sad bath". Stay tuned (and remember, don't write anything unless it is nice, but do feel free to spam the blogs of others that say mean things about me...).
18 comments:
Thank you, thank you for your words. I needed to read them today.
Loved your post. I really appreciate reading about others' experiences, it helps give some insight into others struggles, and reminds me that is ok to stumble through my own experience.
P.S. I also appreciate that you don't judge others based on comments. Because sometimes i say some pretty stupid things in comments....unintentionally, of course. That is why I am instituting a new "no commenting after midnight" rule for myself. I lose all tact and have a skewed sense of humor when I'm sleep deprived.
Obviously I can't thank you enough. I absolutely love your introduction to yourself. It's perfect. I love you, too.
p.s.citimama1--you can comment on my blog after midnight. I adore skewed senses of humor.
i loved it too. I think you're a jewel and we should be friends.
It's not every day a post really makes me stop and think (because ignorance is bliss, no?). Yours did, so thanks.
Just wanted to tell you again that I adored your post. I think it's always helpful for us to show others how things really are.
Okay, so your "Noone Told Me" post is amazing. Truly. I can't wait to read the rest.
Just as long as you're not reposting the Holland story. I thought it was cute the first time I read it. But really.
I only see 3 cuties in your header. I originally heard about your blog from Monica, and I have popped in a few times to read it. I enjoy reading about your family & your life. I enjoy reading about mixed race families, and Down Syndrome, neither of which apply to me but both of which are close to my heart.
I don't even really have words to say; however, I can relate a little but not completely. When we found out that our son had a congenital heart disease the doc told us we had 4 weeks to make a descision to keep him or not. It was never a question. Some of our own family members said we should abort. What if he is born with major genetic probelms, What if during surgery he loses oxegon and becomes a vegetable? It won't be fair to your other children they said. They robbed me the joy of my pregnancy. My husband is still having a hard time with it because he know his son will never be able to play contact sports and could die early. He will always be a heart baby even with a repair. People always say, "so good-he is reapaired right." What they do not understand is that he will never be like our other children. However, I am starting to wonder what is normal. I think we all come here with challenges. Some more apparent then others. We all process life on our own time schedule.
Just one more thing that might give you some hope. About 6 months ago either on 20/20 or 60 minutes they ran a story of a girl who had Down's who was defying the odds. She is married and works in a Daycare center caring for children. It was a really nice story.
I loved your brave and honest post. I think anyone who has been through it can relate and those who haven't can maybe sympathize a little more. There is an amazing array of emotions associated with the first year. They are not good or bad, but just "are what they are." I really hated all the comments about "special people getting special children." They seemed to imply that I didn't love my daughter or wasn't grateful enough if I dared to be hurt, angry or saddened by her Down Syndrome. As if we are not complex enough beings to separate a syndrome from our child. I love my child, but I had to work to come to terms with the syndrome. And I honestly don't see ever being a parent who wouldn't choose to have the syndrome disappear if given the option. If she was in a wheelchair, I would not turn down the option for her to walk either...
I'm so happy I have stumbled upon your blog. Your children are gorgeous!I look forward to reading more.
You are VERY BRAVE for sharing your uncensored feelings and running the risk of receiving criticism and judgment (or unwarranted advice).
I'm looking forward to the continuation!
Thanks for your comment on my blog. Methinks we might be kindred spirits. ;)
I miss seeing you. You're a fantastic writer. I'm not quite sure how to express the feelings I had when I read your entries other than to say that stripping the pretense away and showing your raw self makes me love you all the more. What's a word that can encompass the feelings of wanting to wrap a tender soul up in a blanket and hold them til it's all better? Empathy, compassion, maybe a little helplessness? I'm routing for you.
thank you for sharing your feelings so honestly. i am nearly four years on this path with ds, and reading your words took me back to the beginning of our journey, i could very much relate. i do not think that i could have written so honestly and publicly just months into my journey. your family is beautiful.
Bek, you made me smile with that last comment. And your "No one told me" post was very beautifully written!
You are too cool!! I really do love readiing your blog. I'm a rather "new" lurker. I have to say you have given me so much inspiration and touched my heart in ways you would never know.
I love what you wrote and how you stated it.
(((HUGS)))
I don't wish to be hurtful, and I don't think you do either, but here's some food for thought. . .
I have mental illness in my family and I have the same reaction to the word 'crazy' that you do to the word 'retarded'.
frv..
I really appreciate your comment. I also have mental illness in my family (and myself) and it never even occured to me that was a hurtful phrase. Thank you for the respectful way you shared this with me. I will watch that one. I wish you had left a contact so I didn't have to do this publicly. It just goes to show we all have something to learn, eh?
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