Something Humbling

I’ve been a blogger since 2005.  I wasn’t blogging about the wonderful world of writing; I was writing about my son.  He was diagnosed with a strange genetic syndrome and it very much felt like we were set adrift after that.  Few had seen the syndrome before.  We were alone.  I started my blog at because I was standing atop my raft and I was screaming for somebody to hear me.  More than that, I knew the feeling of absolute isolation. If only one person stumbles across my experience and it helps them in any way, then that is what I want.  I would have sold my soul to read somebody’s blog when our diagnosis hit. 

The Williams blog is a much more honest blog than this one can ever be.  “Blah, I got a rejection!” is far less visceral than, “My son is dying today.”  The Williams blog is a blog of happiness and even more so of pain.  I updated religiously for about three years until somebody said, “Hey, I found your blog. My child has Williams, too.”  Somebody finally heard the screaming.

I started this blog in 2008.  I kept updating my other blog as well, because there was a lot to say.  Then I gradually started spending more time here.  I apologised for my long absences on the Williams blog, and I urged them to come here if they wanted to keep their finger on my pulse.  Why?  Because this is my safe, happy place. Because sometimes it’s too hard to write about the struggles that we’re going through, and also because I’m embarrassed.  I’m embarrassed that I can’t always be strong.  I’m ashamed that things in the Williams World have temporarily broken me to the point where I didn’t know if I would ever be able to stand up again.  But look, I’m standing.  We all are.

I received an email the other day.  A mother told me that my blog was her introduction to Williams Syndrome when her child was diagnosed. She said that she read my blog start to finish.  She was my one person, the one I wrote it for.  But the very next day, another mother told me about when she started reading my blog.  I had written about looking for a park with few children so they wouldn’t tease my son as he played.  She said she sat at her computer screen and cried, because she did the same thing.

This humbled me. Greatly.  These women are some of the strongest that I have ever met.  It’s humbling to hear that some of the tiny things that I said affected them. I know that these women have greatly affected me.

My Williams blog updates have become extremely sporadic.  I keep in touch with most of these women via Facebook.  I cry privately to my friends instead of crying publicly on the blog. I spend more time here, in my whimsical little writing world, because it’s easier, quite frankly.  I love the joys and challenges of writing.  And compared to genetic testing and seven years of potty training before it finally took hold (Hooray, it finally took hold!) writing challenges are a breeze.  And the best news is that my son is doing so extremely well lately that I simply choose to enjoy it instead of writing about it.

I’m realizing, though, that simply because our life is taking a delightful turn for the better, that doesn’t mean that other people aren’t still struggling.  It had never occurred to me that I was being selfish by not keeping up the Williams blog, but I realize it’s true. When you child is diagnosed with something scary and seemingly insurmountable, you scour the universe looking for hope.  My son is speaking. He’s holding a crayon. Today he washed his own face.  There was a time that we didn’t know if that would ever be possible.  These are things that I need to write about.

I’m going to recommit to my other blog.  I’m telling you this here because…I’m not sure why.  Perhaps you’ll be hearing from me less.  Maybe you won’t.  I need to figure out how to balance life, family, Shock Totem, writing, and two separate blogs.  We’ll see how it goes. But I wanted to let you know that you feel like family.  And if you ever want to pop over to the Williams blog, you are definitely invited.  Come over and play. 🙂

19 Comments on “Something Humbling”

  1. *hugs* and congratulations to you and yours on your (plural–can I say y’all’s?) accomplihments.

  2. This is why I respect the hell out of parents with special needs children. My own tiny taste of health issues with my son gives me a whole new level of appreciation for those who struggle with more profound medical conditions day in and day out.

    It is humbling to find out you’ve touched another human being. I’ve felt that before, in lesser ways, and can only imagine how it feels to be a comfort to people in more painful circumstances.

    God bless you, darlin’. You got heart.

  3. *hugs hon*

    Sometimes it takes just one person to make us realize how important our smallest acts make in someone’s life. Keep it up you strong wonderful woman.

  4. Mercedes,

    There are so many things that popped through my mind while reading this post. I think that while you believe that you are selfish because posting here is easier, I hope that you realize that it’s okay to do so, it helps make those instances where you need to be strong, easier as well.

    You’re posts hear are always touching, I can not wait to find your Williams Blog. I truly think you are an incredible woman, inspiring, talented and genuinely kind. Thanks!! And {{hugs}}

  5. *Hugs*

    I don’t know you at all, but this made me cry. I am a mother of a beautiful son, a preemie who is now doing very well. Congratulations on his success (we’re still going through potty training..) and your strength.

    I don’t really know what else to say, other than the fact that I know from lots of experience that writing is a big help, even if nobody reads it. It is also a rewarding feeling to have someone touched by what you have written.

    I hope that things continue in a positive direction 🙂

  6. I don’t know precisely what to say. I am fairly new to your blog. Tend to read more than comment. I think that you are a light shining in the darkness. Only very special people are chosen for that job. It is hard being special. As in literally hard. When you think of the people you admire the most, it is the people who had it the roughest and their light was the brightest. You, my dear, are one of those people. Congratulations. You are one of the Chosen Ones. God only picks the Best And Brightest for these jobs. You write as often as you need to on the Williams blog. Write as often as you want to here. We will still be here. Admiring you even more than before….

  7. Wow, Mercedes. Hats off to you for your honesty, always.
    I’m glad to hear that people have responded to your Williams’ blog, as you know what a relief it is for them to find someone else.
    Keep it up.


  8. Mercedes,

    I am new to your blog, but I have been following you on Twitter for a bit now. Don’t feel that you have been selfish to take the time to write other things. As you say, it is the balance that is important. That you have reached others through your own struggles is a great act. Do not begrudge yourself the necessity of time away from that.

    I look forward to following you in both places, though, and I wish you much luck, light, and love.


  9. Mercedes, you always make me want to be a bigger, better person. Quite simply, you rock.

    We will always be here, your big, slightly dysfunctional extended family. And we will be reading the Williams blog, too.

  10. This is precious and lovely and you are the strongest woman I know, Mercedes.

    I consider it a true priveledge to call myself your friend. You are a delight to know and a testament to mothers everywhere.

  11. Your strength and honesty are two of my favorite things about you. And I’m sure that’s what the other mothers have gravitated towards in your Williams blog.

    Thank you for sharing your story.

  12. Yeah, made me cry too.

    Like the others said, thanks for sharing–however much you want to share, we all appreciate it. We all need to laugh and cry all over someone. We all need to be honest.

    You’re wonderful.

  13. I’m a bit teary, I must say. The feeling of touching someone else’s life and helping relieve their burden, even a little bit, is extraordinarily powerful. I’ve only experienced it once. But that fact that you spent three years before you finally reached out to the people you sought is incredible.

    I have so much respect for you… what you go through each day with your children and your migraines… that you still show up to the page and connect with all of us… that you tell us about the hardships in your life. That’s a level of honesty that’s hard to find. I am so very glad I found you here.

  14. Again, to repeat what the others have said. Thank you.

    For being so honest. So open. So true.

    For the Williams Blog. I am glad you are going to continue writing there again. (I am going to go read it.) I think it will be good, for you, and for others who are finding it, and have found it, who are in earlier stages with their children. It will give them hope, and somewhere to go when they have had a day where the darkness is descending and they need more than anything to feel and know that it will not always be that way. That someone who has been where they are can show them that it will get better. That there will still be bumps, and hurdles, and days of darkness, but that within that the sun will shine so bright they too will burst with it.


    I am so thankful to have ‘met’ you. I look so forward to reading what you share here, and there, always.

  15. Mercedes,

    When we have so many things going on in life, it is okay not to be everywhere at once. You are an inspiration to many and I am sure that even if things become more sporadic for a time until you find your balance that your faithfuls will still be here and there supporting you every step of the way.

    I love your positive outlook and your creative style and will always look in on you from time to time. Every time I read a post, a tweet…from you, I am reminded that everyone had a battle and am always encouraged to keep pushing myself harder. Thank you.

  16. So glad things are going well for your family, Mercedes. As this is your time, commit to what you need to, what you value and what you find the most satisfaction in. That you have managed to form community and friendships with other individuals who understand your struggles is wonderful. 🙂

  17. Hi Mercedes,

    Catching up on stuff after being out of town this past weekend…

    Wow, I have so much respect for you and your strength and your family. You go right ahead and let us share in the joys of all those accomplishments. *hugs* You rock!

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