Comforts & Connections...Summer Blog Hop

I will never know what it feels like for Hailey having a disability.  I sometimes wonder what she will verbalize about it when the time comes.  It's weird me talking about Hailey's disability when I don't know that opinion.  I can only write from my point of view.  An outsider to disability really.  This week's prompt is "comforts and connections."  Just as with the challenges of her disability were a surprise and sometimes are outside of my comfort zone.  The positives have been just as surprising and outside of my comfort zone.

I never dreamed how exciting small milestones could be before we had Hailey.  How much we cheer and chant when Hailey learned to sit up or crawl!  You would have thought she won a gold medal in the Olympics the way we carry on.  I remember crying and cheering in the hospital when Hailey drank a 3 oz bottle after open heart surgery.  To most parents of a 4 1/2 month old, that isn't anything out of the ordinary.  Hailey had never finished a 3 oz bottle and when she came close, it would take over an hour.  To see her finish on in less than 10 minutes is overwhelming.  I had NEVER seen it.  This abundance of excitement "might" be why the girl is such an attention seeker, but it is quite deserving.  The girl works hard.  She's not struggling or suffering, it just takes more effort for her to accomplish things that we take for granted with our typical children.  Due to that extra work that she puts forth, we celebrate smaller milestones and we celebrate often.  We break out into spontaneous dance parties because Hailey shouts, "Dance daddy" or "Dance mommy".  We do it like it's second nature.  We are proud of her perseverance and proud of all of her accomplishments no matter how big or how small they are.

We occasionally encounter people who look at Hailey as if she is "damaged goods" or not worthy of their time because she is "less" than typical.  I can honestly say though that for every 1 person I find like that, I encounter 10 that feel the opposite.  They will seek Hailey out.  They will go out of their way to make her smile, say hi to her, or shake her hand in church.  She has a personality that seems to draw people to her.  There are days that I feel bad for my boys, but they seem to take it in stride (sometimes with an eye roll). 

The boys like the extra activities they get to do because of their sister.  Baseball games, play dates, picnics, ice cream socials, etc...all because their sister has Down syndrome.  They seem to make a new friend no matter where we go.  Sometimes I'll see them play with siblings and other times, I'll see them playing with an older child with Ds.  They are going to be great role models one day.

One of my biggest fears when Hailey was born was that our family would be isolated.  That we would be all alone.  I was afraid we would have no one to turn to or relate to.  I was afraid we would become hermits and not out in the world.  I actually have laughed out loud at this fear since Hailey has been born.  First off, if you have ever met my family...quiet, reserved and shy are not three words that could be used to describe most of us.  Secondly, I have never had more support in my entire life.  The Down syndrome community is absolutely amazing!  Shortly after Hailey was born, I started receiving emails.  All of them were from friends and acquaintances of mine that knew someone who had a family member with Down syndrome.  All of them came with a contact name, phone number and an email address.  I couldn't do that.  I couldn't just start talking to a total stranger about the biggest, most shocking thing that had ever happened to me.  Each email also included the same message, "contact them when I was ready".  Seriously...I would never be ready.  I have to laugh at that one, too.  Little by little, I have contacted many of those individuals.  They have helped me through some bumps in the road about acceptance, feeding, behavior, etc.  They didn't know me from Adam and were willing to help a complete stranger based on one common factor...we both had children with Down syndrome.  I didn't understand that bond at first.  I do now.  I have now been on the other end.  I have had family and friends contact me saying, "I know such and such.  They just had a baby with Down syndrome.  Can I give them your name and email?  Can they friend you on Facebook?  I think it would be good for them to see Hailey and her pictures."  So then, I become that person that is reaching out to a stranger trying to help them through some of those initial unfamiliar waters.  I get to pay it forward.  I get to help them like someone helped me.  I get to see their little bundles achieve the same milestones Hailey did.  I get to celebrate with them.  It is so amazing. 

Not only have I met amazing people online, but I have also met amazing people in person.  We are very fortunate to live in a large area with a large Down syndrome association.  We have a very active community.  I'm lucky enough to attend a Mom's Night Out dinner once a month.  It is a group of women that I may never met had I not had Hailey.  I honestly don't know what I would do without them sometimes!  I look forward to the dinner every month and am extremely disappointed when I have to miss it.  We don't even talk about Ds all the time, but they are a group of women that I can be 100% open and honest with.  They understand it all.  There are no explanations necessary.  They are always there.  If I need to vent with a one sentence text or I need a full blown conversation, they are there.  We are tied together by what many would think is just a thread, but that bond is more than that.  I thought it was just a local thing until I attended the National Down Syndrome Convention in Indianapolis this month.  Wow.  It left me speechless.  It's definitely a common bond no matter where you are.  I need to blog about that later.

We have been very fortunate with our team of therapists as well.  Even though these are people that are paid through their career to help my child, they have all gone above and beyond.  They truly love their jobs and many times, they come to love your child as well.  Most of ours have even made themselves available to us for questions and concerns outside of our appointments. 

I also take comfort in knowing that Hailey was no mistake.  Hailey was created just as God wished.  Why Hailey and not someone else?  I'm not sure, but I do not doubt for one minute that she was intended to be who she is...even with all her stubborn opinions and personality!

Who would have ever dreamed that my fear of being alone would be so far from the truth?  I never dreamed our life could be so full. 

I never could have imagined the world that this little girl would open up!