Monday, February 15, 2010

When was your first experience... meeting someone w/ Ds?

Thanks to Kimberly over at Chromosomally Enhanced for giving me the idea to post about the first time I ever met someone w/ Ds... (below about 5 paragraphs)

When John Michael was born, and for several weeks thereafter, I was very sad and frightened of this new world we had just entered.  The medical books that were meant to be "helpful" were causing more anxiety than comfort.  At night, I imagined that any day the doctor would call me to say John Michael had this or that medical condition requiring XYZ treatment or surgery.  I struggled with this diagnosis and the misperceptions I'd had as a child hearing the word Down syndrome, or (gasp) Mongoloid.  Was my child a Mongoloid? 

I soon set aside the heavy 4" binder from our local Down Syndrome Information Alliance and began embracing uplifting anthologies, like Gifts, edited by Kathryn Lynard Soper, and Whispers of Hope, a book of local Sacramento families who loved their children deeply and their family photos that showed very cute children with Ds.  I also thoroughly drank in every word of Road Map to Holland by Jennifer Graf Groneberg, and sobbed deeply through her descriptions of the NICU.  I finally felt a connection to other moms who had gone through the same or similar feelings I was having.

I found Jennifer Graf Groneberg's Pinwheels blog and began clicking on other blogs.  I couldn't stop reading and staring at those beautiful faces.  I was amazed at how many other families were blogging about their experiences and the majority of what I read was the joy that these families were experiencing.  I began following some of the blogs and soon after, found my own blogging voice.  At first, I was a bit intimidated.  I had no idea how to start a blog, or what to say, and worse yet, I couldn't ever keep a written journal for more than a week or two, so who would I write for and how long would it last? 

Fast forward 19 months.  I love blogging... I'm amazed at how many people tell me they read this or that post (BUT DON'T COMMENT!), or others that ask if they can share my blog with a new mom they know.  I never expected my words to comfort or console or encourage anyone, but I'm humbled to know that somehow I'm making a small difference in the world by educating and advocating for these little gifts from God.

This brings me to why I started this post.  Do you remember the first person you ever encountered or touched with Down syndrome, besides your own child?  John Michael was a baby and I'd already come to view him as a true gift from God.  Doug and I were at a dinner for Immaculate Heart Radio and a mom introduced herself to me, having recognized John Michael as having Ds.  That was the first shocker for me.   A few minutes later, she came back with her son who was about 10 years old.  I wish I could remember his name.  He had a modern, touseled blond hairstyle, was very trim, hip-looking and polite.  He held out his hand without any prompting on my part and we shook hands.  His words... "Pleased to meet you."  His eyes sparkled, his face lit up, and his crooked-toothed smile spread from ear to ear.  I was mesmerized by this boy.

That was my first experience meeting someone with Ds and it was fantastic.  He gave me hope.  Later on, the mom came back to us (I think she really wanted to hold JM), and told us a funny story about her son.  She said he likes to splash in the toilet and one time, pretended he was the family dog and drank from the toilet.  Internally, I was horrified.  I was still on cloud nine and she quickly burst my bubble as I could only imagine my own son doing that at some point in time. 

Once again, fast forward to just last week.  John Michael is learning to open the lid to the toilet and Greta has taught him how to pretend to drink from the dog's water bowl.  I just hope and pray he doesn't put those two together and follow in that boy's footsteps.  And if I end up blogging about it one day, I hope a new mom or dad out there don't read it and think, "Oh, horror of horrors... my son will never do that."  I always say... never say never.  It might come back to bite you.

So, what was your first experience?


  1. Very GOOD...I am getting more comfortable! I wonder what your "first" little guy is doing today! and I so enjoy your blog...thank you...smiles

  2. Love it! Joaquin's favorite play to play is the toilet!!! Thank God we only have one toilet in the house to keep watch over :)!

  3. The toilet thing cracked me up as BOTH of our typical boys have done this! Ack! I'm resigned to the fact that little brother, Eon, will probably follow suit. :) I don't remember my first experience with someone with Ds, but I've been an OT for 15 years, so I've had many. At one point, early in our marriage, we discussed "some day" adopting a child with Down syndrome. Now that we have Eon, we still may.

  4. My first experience was amazing and much needed! Since we found out Justin had Down syndrome at 6 months of age... I already felt very alone. I happened to be out to eat with my sisters and they pointed out a sweet little boy to me that they thought had Down syndrome. I was so afraid to approach the mother. We were only into the diagnosis a few weeks. I did it though and she is a great friend to me now! A few minutes later a lady came up to me and asked if she could hold my little boy because her sister-in-law just had a baby boy with Down syndrome and she missed not seeing him! (we are now great blog friends too!) It was the best day ever!

  5. I honestly don't remember if it was my very first encounter with someone with Ds, but when I travelled with Up With People in 1991-1992, we did a lot of community service and several times got the privilege to work with adults with Ds. I don't mean to perpetuate a stereotype, but they were the most wonderful, loving, sweet, and in many ways, innocent people I had ever met. I enjoyed every moment of being with them. No specific person stands out, just a very positive general impression.

  6. Hi Monica! I LOVED this post. Shortly after I got over the INITIAL shock of Colin's diagnosis of Down Syndrome, I decided to start a blog that I wouldn't share to anyone and was just going to be a way for me to "vent". Hah! How silly that sounds now! Little did I know at the time that it would create such a community for me. These blogs have become so important to me! I think Ria was the 1st person to start following my blog and then it just took off. I kept clicking and clicking and found so many wonderful blogs to read (like yours!!). I have become so in love with all of your families that I am taking away from things I should be doing (like my work right now, but I am reading blogs!).

    I don't remember my 1st experience of meeting someone with DS as I can recall different points through my childhood, but I have a moment that stands out after Colin was born. We were in D.C. for a weekend away over the summer and I got in the elevator at a hotel with Colin to go down to the lobby for something. There was a family in there and the Dad was holding his son who had DS. He immediately starting pointing at Colin saying "Baby! Baby!" and smiling so big. I started shaking because I so BADLY wanted to say something, but didn't know how yet.

    That little boy was so adorable and I was disappointed afterwards (after circling the lobby so many times figuring out a way to then approach them) because I just didn't know what to say. My, how much I have learned since then!