Monday, August 24, 2009

I'm Not Alone In This.

So I have to share this interesting encounter I had with my dental hygienist. I came in and we made small talk- she asked how my girls were doing- I have only been to this office once before while I was pregnant but she was the one that cleaned my teeth the last time so I guess she remembered them. I told her they were fine but thankfully I had a friend watching them and I just had Bennett with me. He was in his stroller all covered up because I thought he was sleeping plus I'm a little nutty about germs right now.;)

Anyways, when she was done with my cleaning and we were waiting for the dentist to come in she kept peeking through the little window on Bennett's stroller and noticed he was awake so I opened it up so she could see him better. She made the usual comments "so cute", "aww" and then she couldn't keep her eyes off of him. She just kept staring at him so I'm thinking to myself :does she know, does she think he looks like he has Down syndrome?

After a while she said "Now how old is he?"

I said: "He's almost 3 months old" and then I proceeded (and I have no idea what possessed me to divulge this information but I felt like I needed to for some reason) to say that "He actually just had open heart surgery last week"

She said: "I was going to say because I can see a little of his scar" and then she said "what type of heart issue did he have?"

Oh boy, here goes: "Well, he has Down syndrome and the type of heart defect he had is very common in kids with Down syndrome, AV canal defect" again, not sure why I had to tell her he had DS, I just really felt like I needed to.

Waiting for the "Oh, I'm sorry" (which to this day I have never gotten by the way)

But instead, much to my shock and surprise she said:" I had a brother that had Down syndrome, he was in and out of the hospital, very sick, I was in eighth grade when he was born"

My jaw about dropped. Why I think I am the only one in the entire world that has a child with Down syndrome is beyond me. I know this is not the case of course but when I find out that someone I know has a child or a sibling or someone in their life with DS I'm always just amazed. Maybe because I have never known anyone personally with DS, until now.

So I said: "You said you had a brother, did he pass away?"

Her: "Yes, he was just 4 months old." "We just celebrated his birthday on August 2nd, he would have been 11 years old." "We each have pictures of him and try to imagine what he would look like now"

Me: "Oh, I'm so sorry to hear that he passed away." "And he had Down syndrome?" There I go again, just couldn't help myself - I was just amazed.

Her: "Yes"

She proceeded to tell me he was at CHOP for most of his short life- the same hospital that Bennett went to for surgery and that they (the siblings) would go and visit him on the weekends. As I was leaving she said she was so glad I brought Bennett in.

Ahhh, so maybe that's why she couldn't take her eyes off of Bennett. She knew, I believe and whether or not it brought back sad memories or wondering what her life would have been like with him or if her brother looked similar, I don't know.

You know, sometimes I hold back and I don't mention the fact that Bennett has Down syndrome but I feel like every time I don't hold back, it reveals something about someone that I never would have known and more times than not it shows me I'm not alone in this. Stay with me here...

Like 2 weeks ago I was responding to an rsvp for our neighborhood block part by email. I emailed the person that was organizing it (I did not know him at the time) and under my signature on the email is my blog address. I had totally forgotten that it was there- I added that a long time ago when I first started the blog. He writes back saying that he got my rsvp and that he happened to click on my blog and told me how lucky he was to have an uncle with Down syndrome and how he was the nicest person and wouldn't hurt a soul. He then sent me The Special Mother poem. How thoughtful was that?

I think my point in "I'm not alone in this" is that we sometimes keep things to ourselves about our lives because well, maybe we feel like we're the only ones dealing with it but when you open up a little or reach out to someone and sometimes by accident, you may realize you're not the only one. And the more I do, the more I realize Bennett is not something I have to "deal" with, he was born with a purpose and so far he's brought out the good in people time and time again.

So while I'm fully aware that many of you that read this blog do not have a child with DS or have any one in your life with DS, you may have things going on in your life where you feel you are alone in your own "issues" because maybe no one in your "real" life as opposed to the internet or phone is going through that, you'd be surprised. I'm not saying to tell people every little thing but keeping it bottled up and not being some what open about it can end up hurting even worse. I don't know, that's just been my experience so far.


  1. Wow, your post brought tears to my eyes! Yup, it took me a while to figure out that we're not alone. In my vocal group, there are 16 singers. Among them, 6 of us either directly have a sibling, cousin, child or Godson with Down syndrome. I never would've known if not for John Michael. Thanks for sharing!

  2. Tears here! I'm guessing it was a blessing for this woman to get an opportunity to see someone who is near the age of her little brother when he passed away. I also think she's going to request to work on you just so she can see Bennett!!!

    Our kids rock!!!

  3. Great post! That is so true, if it weren't for Alivia being brought into my life I would not have met some of the great people that I have.

  4. I am crying here. Like a baby.

    I was just talking to some friends at church last night about how even though I wouldn't have *chosen* for my son to be born with DS and have all the health issues that he has, I cannot imagine my life without him and without all that I have learned and become since that day, which was actually 16 months ago today. I have met some wonderful people, and my perspective has just changed so, so much.

    You're so right. You're not alone in this. None of us ever are.


    P.S. I never know whether or not to point out B's DS either. Even at his age it is sometimes hard to detect.

  5. Great post. Sometimes I think I share too much; I also add, "we just adopted him", and then I kick myself, because that usually brings something to the affect of "Oh - you must be great people (or whatever adjective)" - but what I really mean is that I feel so lucky to have been chosen to be his mom, not the other way around. Thanks for sharing that poem too - I hadn't read that before. Tears :)

  6. So true Adrienne! I think part of our part as advocate parents is to actually talk about our kids and DS more often so that people get exposed to the positive side of DS and the beauty of well as the fact that we are not alone and that a lot of us are touched in some way by a person with DS. Thank you for your post and I'm so happy for you and your positive experiences with Bennett!!! It's just awesome!

  7. Can't see through the tears. What a beautiful moment you shared. When I first had Em and I would tell people ,yes she has Ds, almost everytime the person would share a story about knowing or having someone in their lives who has ds, it was amazing.And the best part was that they would get excited to tell me. Like they had been waiting to be able to share their experience. Our kids are awesome!

  8. What a wonderful post. I am so happy that you have shared your journey and that my brother and his wife have shared their journey with Gabriel, otherwise, we would have never met. I have enjoyed meeting you and your family. Andrea

  9. Oh my certainly know how to make a girl tear up.......and then to read that poem!!!!

    Thanks for your thoughts,,dear friend. I think you'll find more people that will come up and say they have a brother/sister/aunt/uncle/child that has DS and how blessed they are.....or at least I found that with JEB. I will take him somewhere and these other people just know....because they have been around someone just like him. Amazing, isn't it??? I also find myself noticing others who have DS as well....much more than I ever did before. And I seem to be so drawn to them. I want to talk with them and share my little boy with them.

  10. It gets easier and easier to say. My Ben is 18 years old and the absolute joy of lives. You will find your way and in your time in how you deal with ALL the emotions that go with having a child with Down syndrome.

    I started a blog about Ben but I have not updated it for a while.

    Enjoy this precious gift.

  11. I came across your blog on Friday after getting the screening results from our doctor on Thursday. We still don't know the future of our little unborn girl but the Lord has used His Word, friends & family, and a divine google search that led to YOUR blog to give us a complete peace & joy about who she will be no matter what. Thanks for sharing your story!

  12. Once again Adrienne, you have given me wonderful inspiration and insight. I love reading your perspective on things. It is so wise yet so innocent all at the same time. And you seem to always remind me of little things. I was just writing on someone else's blog how I feel like I WANT to always tell people about Ella having Ds. I am not sure why, possibly because I want that "awkward moment" to be out of the way in case they suspect. But I am thinking that it might also be because I am always searching for people who may have a child with Ds or know someone who does. Thanks again for writing down your thoughts!!

  13. Great post!! Bennett is such a blessing and has an incredible purpose in this life. Thank you for sharing your stories about Bennett's impact on others. What an amazing encounter with your hygienist!

  14. Thanks for sharing this!!! I too have been amazed how many encounters I've had in the most random places!!! I feel like we're part of this special club or something! I'm so glad you and Bennett are part of our club! :)

  15. I'm all in tears over here over your story with the gal whose brother passed away...that got me. So glad you were able to have this special exchange!

  16. Excellent post! As you are discovering, I often find that many people have personal experiences and exposure with individuals with Down syndrome. It made me more bold to bring up the subject with acquaintances and strangers--not always just to educate them, but to learn more about their experiences. Don't be shy about sharing Bennett's bonus! You never know if the person you're talking to will one day need to look back to that day and remember that Down syndrome is not what they once thought it was.

  17. Awesome. Never saw that coming with the "had"....funny how the "allergies" flare up at times like these!

    Anyway, I can relate to the need to tell about Ds. I would often wonder of 'people could see it.' Now, though those thoughts are few and far between - not that they were bad, it's just a different season.

    It's great to see how people who look 'hard' melt at the baby wave, infectious smile and giggles, and are blown away by the baby-blown kisses.

    Seems like God expands our hearts a little bit more every day to let us love our special kids just that much more moment by moment.

    Thanks for this great post, and we're really enjoying your journey.


  18. Awww, what a sweet post! I've always thought that God sends babies with special needs to very special mothers, ones he knows can nurture their babies well.

  19. What a great post! Well said with a good reminder that we really aren't alone, in whatever circumstance we are in. I've had similar encounters and it sure feels great to be able to share the experience a little more openly.

  20. What a beautiful family. Thank you for finding my blog and reching out. Madi and Bennett do have a lot in common. I love you last post and look forward to following your blog.

  21. I think you are right about the positive impact of sharing with others. At some point in my struggle to get pregnant I decided not to hide the process, and this led to many supportive conversations. Sharing your own story brings out others' stories, which taught me I was not alone. I am glad it is feeling like a good thing for you too.

  22. I couldn't agree more! Thanks for the wonderful reminder and great post. (And a belated happy three-months to Mr. Bennett!)


  23. It's true, we aren't alone. The only thing that makes me upset from time to time is that some people think that because Kristen has down symdrome that her life isn't as meaningful and say the person that doesn't. Wow do some people have it wrong. She has a purpose here and is truly the light of my life.

  24. Nope, never alone! It's like the Kevin Bacon connection...someone always knows someone who (insert relationship here).

    Just be prepared for the first time someone recognizes and acknowledges Bennett having Ds. That one blew me away. I always thought, like one new mom said in these comments, I didn't think my son's features were very noticable, then 8 years later I look and BAM. :) We do love our kids!

  25. beautifully written. thanks so much for sharing!
    you have a gorgeous family! so glad i found your blog!

  26. WOW, that post left me in tears, your visit to the dentist surely made that hyginest day I am sure, bringing back surely good but sad memories for her..BUT, how beautiful for she was so comfortable to share with you as you were with her ...*warm smiles* ...and now I know Bennett is soon to be ONE !...BRAVO ...I will look forward to HIS ONE yr OLD celebration !...Deborah the Canadian Nurse !

  27. this really touched me... i was 18 when my son was born with DS. he's been through the heart surgury and the hospital stays and this feburary he will be 2. i've been so afarid to confront my feelings about it all and reading things like this posted by other people really helps me to feel. with the lack of support its nice to know that there are others out there

  28. Adrienne,
    Before you moved in, Kasey Wood had spoken to me about your blog and the experience your family has had with Bennett. So, being inquisitive (my "nice" word for nosey)I wanted to read a bit. I just have to say, God does have a plan and he doesn't give us anything that we can't handle... You are obviously AMAZING parents and your story gives such a feeling of love and compassion. It's amazing to see how many other parents you've helped simply in your writing and sharing of your journey. Your children are beautiful, so well mannered in the short time we've had to spend with them and I know that you are so, so proud of them. We look forward to meeting Bennett and seeing that beautiful smile and spirit. -Tara


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