The Hailey Herald

The Hailey Herald

Thursday, October 11, 2012

31 for 21: What I Never Expected

Once Hailey was diagnosed, I started my research of Down syndrome.  I followed doctor's orders.  I was given strict orders from our neonatologists that our internet research at the beginning could only come from www.dsagc.com and www.cincinnatichildrens.org.  They both wanted us reading newer more accurate information (and I think they didn't want us coming across any negative information/comments).  I read all the physical characteristics that she could have (Hailey does not have the palmar crease on one hand nor does she have the sandal toe gap), all the medical complications we might encounter, and information on quality of life.

There is one thing that I have found over the past 19 months that no article or book on Down syndrome listed.  I have found the most fabulous support system...the most wonderful women in the world all because Hailey has Down syndrome.  Some of the women I met through message boards, some through blogs and others through our local Down Syndrome Association.  They have become invaluable to me.

My first focus was Hailey's open heart surgery and gaining weight.  When scouring the internet late at night, I came across The Blessing of Verity.  I emailed Susanna late one night and she gave me wonderful ideas on getting Hailey to eat.  Once we had surgery scheduled, I wanted to see pictures of children post-op.  My husband thought it was the worst idea in the world, but it helped me immensely.  It gave me the opportunity to know what to expect.  I could then focus on Hailey's beautiful face and not all the wires and monitors hooked onto her tiny body.  That search led me to Our Cora Bean, Life as We Know It,  and  Fearfully & Wonderfully Made.  Cora, Kennedy & Reagan all had open heart surgeries before Hailey.  All their mommas posted their fears, their experiences with OHS and photos of their little ones.  Ironically, Kennedy is exactly 7 days older than Hailey and had her OHS exactly 7 days before Hailey.  Their stories also gave me reassurance that everything was going to be okay.  They weren't just a statistic....they were real.  I had faces to go with the statistics.

I've also met moms whose little ones are a little younger than Hailey.  Deborah, from What a Team, has told me on occasion that she enjoys seeing Hailey accomplish goals and her antics.  Hailey is just a little older than Ben, but enough to provide some vision into the near future.  I've spoken with moms whose little ones are older than Hailey.  365 Days of Abby, A Perfect LilyThe Bates Motel, Big Blueberry Eyes, and The Chronicles of Ellie Bellie Bear.  These fabulous ladies have helped me see past the small stuff that seems so big right now.  They share their knowledge of what worked for them and give advice for the future.  These women make me think of obstacles and issues in a different perspective..for example With a Little Moxie, Meriah made me realize it isn't as important that Hailey speaks as it is that she learns to communicate.

We definitely can't forget Hailey's future prom date (unless she takes care of that one on her own!)...Ben's Blessings.  Ben has quite the list of prospective dates!

This is just a small list of the wonderful people I have met online because of Hailey....there are so many more! (check our more of them in the blog list to the right.  Pudge & Biggs and Everything and Nothing from Essex always have funny antics).  They have been through it or are going through the same journey as we are.  They give fabulous advice...support when I'm down...tips and tricks for eating, therapy and dealing with medical staff and insurance.  They understand what a big deal it is for your child to finally sit independently or pull herself to stand.  They have been there.  I'm quite grateful for technology!  It is fascinating to have such a wonderful group to rely and lean on that I have never spoken to any in person.

I also have met wonderful women/families in person through our local Down syndrome association.  We have a huge association so we do some function as a large group and some as smaller groups.  I always look forward to our Mom's Night Out once a month.  Yes, I do enjoy a small break from my three lovely children, but I truly love the company.  They are funny and full of wisdom and advice.  I know if I had any issues, I could call any of them and they would help me in a heartbeat.

So you see my life is fuller because of Hailey.  These individuals are people that I would have probably never met if Hailey didn't have Down syndrome.  I'm thankful for all of them.




Look how big my little girl is!  She is definitely looking more like a toddler and less like a baby every day!!!



13 comments:

  1. You have definitely been a beckon of hope for us. We are always encouraged by seeing what Hailey is becoming!

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    1. Thank you, Claire. That makes my day!

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  2. Hailey looks so cute in that outfit! Technology has opened so many doors for us as well. It has changed the world of special needs. I wish I had it when Beth was growing up.

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    1. She does, doesn't she? I wish you had it when Beth was little, too. I don't know how you did it!

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  3. Ben is already counting down to prom! Only 16.5 more years!

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    1. So how many dates does he have lined up?

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  4. Thanks for the shout out! I love our community!

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  5. Yes I am very thankful for our community!!!

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  6. That is so so sweet and so true! Thanks for including me in the list. You have been important to me too. And we'd better hope that Hailey and Cora have prom on different nights so Ben can make them both! :)

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    1. I wonder how many he has lined up :-)

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  7. It is great to be a part of such a supportive community. I love watching Hailey grow and show the world how awesome she is.

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    1. Kamdyn has helped us get through some rough spots!

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