Monday, January 23, 2012

Crowdsourcing for Wisdom.

As we start planning for Ellie's first birthday in a bit over a month, I'm reflecting a lot on this time last year.  The anticipation, the waiting, the "already" of her Down syndrome diagnosis and the "not yet" of knowing Ellie made for a stressful start to 2011.

(Ellie hanging out with Olivia.)

Recently, I asked some other moms of children with Down syndrome what they learned in the first year, and what they're glad they did for themselves or their child.  There are some smart mamas on the online forums.  Most of these women have been walking this road longer than I.  Many have answered specific questions for me about everything from heart surgery to keeping Ellie's feet in her shoes.  Like any other time I've sought advice from a large group, some advice is conflicting, but I know that every person quoted below is seeking the best way to raise their particular child. 

These women directed me to blogs when I was pregnant, and showed me that life would continue, and that life would be good.  Those women I've met in person have become friends.  Here are some bits of wisdom they shared.

(Courtesy Jaidin's Journey.)

"I've learned how 'normal' it is to raise a child with Down syndrome." - Jaime

"She truly is more like my sons (without Down syndrome) than she is different." - Michelle

"A parent's love for their child knows no boundaries, does not discriminate." - Cindy  

"I learned, from Calvin during his first year of life, that the unexpected is that much sweeter and more exciting. I learned, with that, to give up expectations and control and let others decide things, too!" - Ilisa

"Joanna has taught me more then I will ever be able to teach her." - Jessica

(Photo courtesy Pudge and Biggs.)

"During this first year of Liam's life (or at least his first 8 months) I've learned to take things one day at a time."  - Lauren

"I would have to say I'm glad I gave my daughter a lot of sensory input right from the start, ie: music, reading, activity etc. I think that's been the most helpful." - Laura

"I decided that the best thing I could remember is that we were raising a whole person - not just someone who could button things, or who could reach gross motor skills on a timetable, or who could speak clearly. Sure she needs those things, but she needs discipline, empathy, confidence, the ability to read people and make good decisions and to say 'no'." - Melissa

"I'm glad we made Amélie a big sister. Seeing her in the role of big sister makes me love her even more than I imagined. She is so kind and caring to her little brother. She can also be a noodge with him too, but let's face it, younger siblings can be annoying at times. (Spoken like the oldest in my family)." - Kathleen

"The best thing I did was attend the DownsEd conference when Olivia was only 8 months old.  I got a LOT of great ideas from it.  The best thing I wish I had done....hug and hold her more. The baby baby stage still goes by quick.  I was so worried she wouldn't be independent that I didn't hold her as much as I could have.  My husband says I held her a LOT, but I honestly, don't feel like I did." - Chris

"I am glad that we went to the conferences and symposiums that were in our area, because I learned a lot, and it was a huge encouragement to meet other parents." - Tricia

"I am glad that I treated her as I would have treated her if she did not have Down syndrome.  I exposed her to as much as possible and made sure that we participated in as many activities as possible that typical infants and toddlers would do.  I never believed that she could not do something because she has DS." - Jennifer

(Photo courtesy The Bates Motel.)

"I'm forever grateful for Dale's first teacher, Stacey who came to our home every two week to "teach" him as an infant.  She was spectacular and I am still in contact with her today, though she hasn't seen him in almost 5 years." - Tammy

"I'm glad I reached out to the Down syndrome community, online and locally.  Without my fellow moms and dads I really don't know where I would be today.  Because of my fellow 'club' members' support, patience, and knowledge I am a happier, more well-adjusted parent to Matti.  I thank you all! " - June

"My main advice his let them be themselves, savor the milestones and smoother them with love." - Michelle

"I'm forever grateful that I took the time to meet other parents in my local area who had kids with Down syndrome and without DS." - Shema

"I am glad I allowed myself to enjoy him as a baby and to develop on his own time. Although we were busy with doctor appointments, therapy etc. I made it a point not to get caught up in milestones and what other babies were doing. It helped to lower Mommy stress." - Sherry

(Photo courtesy Yo Momma Momma.)

"I'm glad my friends, co-workers and family enveloped me in a blanket of support. I needed it." - Johanna

"I'm glad I took the time to enjoy my son's infancy, and really savor every smile, new experience, and accomplishment. I also learned to forget the charts, and let him show me what he could do when he was ready. It took a lot of pressure off. Lastly, I learned it's okay to put therapies and appointments aside if we needed a break, or wanted to do something fun instead. We're better off for it!" - Kerry

"Honestly, I think the most helpful 'tool' I've used during parenting both Pudge and Biggs is my commitment to respond...whenever possible...with as much humor and grace as I can muster when I'm interacting with others less familiar with what the diagnosis of Down syndrome entails.  I will always be an advocate and fierce defender of my children when an occasion demands it, but there is often a fine line between educating others when it's needed and being on the offensive, looking for a battle.  I sincerely believe that my children are easy to love and that people are eager to do that...however clumsily they might attempt it.  I am QUITE sure that my children will have socially inappropriate mishaps in their futures and I hope others will respond to those incidences with grace and tolerance.  I'm making deposits in that bank now, on Pudge and Biggie's behalf, I suppose.   So, I guess my motto has been, 'Trust that good is going to happen, and step around stupid when it shows up instead.'  It's served us pretty well so far." - Courtney

(Ellie appreciates all the early literacy advice!)
"I'm still in that first year since our diagnosis at 20 weeks, and can't name just one thing.  The most important, I think, was learning how to get into the now of things and enjoy my daughter." - Lisa

"I'm really glad we did the Buddy Walk and met so many people.  I'm glad to have (an online) group of women for support and I try to use it as often as possible.  I'm glad I did a blog just to look back at all the time that has passed and how much she has grown." - Denise 

"We came out of the box running, and our transition was pretty easy, so there really wasn't one particular "thing" that really helped us, it was a lot of different things.  Initially, having such a positive response from the hospital and all of our doctors/nurses/etc., and getting a folder of information and resource materials from a social worker that came to visit us in the hospital was the very, very best thing these new parents, with absolutely no clue about Down syndrome, could have gotten.  Several myths and stereotypes were blasted away from the get-go with that.  Further into Samantha's first year, I'd say that personally, having a positive attitude all the time and being completely smitten with our new baby was the biggest thing that helped us" - Becca

(Photo courtesy A Perfect Lily.)

"I often wonder - what was I so worried about - life is so good." - Kari

"The first day we were home from the hospital after Lily was born (which was actually a week later due to a long stay in the NICU) I got online and started googling Down syndrome. I looked for real life stories of families who were raising kids with Ds- I didn't want a host of medical facts or things to be on the lookout for.  What I wanted were real people with real stories to give me hope.   I didn't find one.  I found over THREE HUNDRED.  Ds bloggers, as well as experienced moms from the Down syndrome boards on were my lifeline. They gave me a window into a future filled with joy and reward and yes, challenges, but above all hope. I am forever grateful for my network of online friends who showed me that Lily had a beautiful future ahead." - Patti

"(My advice is) to connect with people who have been through this, whether it's through (an online group) and/or through a local group. It's nice to be around other families and see they are normal just like you and they are doing it so you can too. It's nice to talk with people who understand, because most people in your life won't truly understand even if they are wonderful and try very hard." - Alysia

(Photo courtesy Pudge and Biggs.)
"I am glad we bought Baby Signing Times. I think it was the best investment we made. It gave Emily a way to communicate with us. I don't know where we would be today without Signing Times. Emily is 32 months and we now have almost every video Rachel Coleman has made." - Tracey  

"Best thing I did for Kelly, hands down, was birth him AT HOME!  I had him checked, rechecked, triple, quadruple, etc, checked to make sure he was healthy and then we planned his beautiful homebirth.  I made plans for emergencies (like not breathing properly or pinking up or keeping his temperature up) which weren't needed and was completely prepared.  And when the time came, he came into this world at home, was put straight to the breast, and celebrated like his siblings before him.  Absolutely the best start for his journey." - Heather

"I'm glad I took time off therapy and doctors appointments that first year.  The first year was daunting, therapy, doctors appointments, running around to different places all the time or always having a therapist in the house. So throughout the first year when I felt overwhelmed I would go for a week or two without either.  It was therapeutic for me and for Seth. A break is always needed.  Being not only a new mom, but a new mom of a child with Down syndrome, I felt like I was supposed to always be busy doing the therapy and making sure he was 100% healthy - wow how stressful - the weeks off made both Seth and I much happier and healthier.  So my message is - take a break from it all!" - Shanna

(Photo courtesy Pudge and Biggs.)

Thanks for sharing, everyone.  I received far more responses than I could reasonably fit in one post.  I am so very grateful for the bonds in our little community, and I look forward to celebrating for years to come through first dates, graduations, and watching our children come into their own.  And an extra thanks to those who allowed me to use photos of their little ones, and for providing those photos on short notice!  

In our family, we're glad we exposed Ellie to as much as we could.  We followed her cues about her capabilities.

I'm glad I reached out to the online community and local Down syndrome community, and learned we aren't alone. 

I'm glad we made a decision to choose joy.  I'm glad I started this blog to look back and to connect with others.  I learned that my life isn't so different from that of any other first time mom.

I learned that our best friends will love and support us in the times our lives are different - the hospital stays, the medical worries, the concerns over milestones.

We know Ellie will continue to bless us, to teach us, to drive us crazy, and to make us laugh.  I know that the parents who are walking this road ahead of us will be a valuable source of information for years to come. 

Click on Down Syndrome Pregnancy for online resources and community. Click on Real Life Down Syndrome for a great collection of stories.

Wordle: advice from crowd

What are you glad you did in your first year of parenting, regardless of how many chromosomes your child sports? What do you wish you did?

PS. Yes, I made a Wordle.   Because I'm nerdy  awesome like that.

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  1. Such a lovely compilation. Wish I had responded, but these great mamas said a lot. The first year is quite the journey. So glad we "met" you during ours.

  2. Really beautiful to see everyone joy in raising their child! I wasn't there for my brothers first 18 years...but all those years after I learned that no one should place value on a life for any reason...ever.


  3. This is a beautiful post!!! What a great community you all share! What a blessing!

  4. Great post, Megan!! So glad to be a part of it, and so glad to know you all IRL!

  5. Awesome Post! there are some really amazing families out there.

  6. Beautiful!! I love our community. It is so nice seeing our kids growing up together!

  7. I love this post! The Ds community rocks!

  8. This was really cool to read, even as a mom to kids who don't have DS. I think most new parents could learn a lot from what these moms have to say. Thanks for putting this together.

  9. I love the first picture of Ellie in this post. It is so beautiful. Wonderful post as usual, Megan!


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