The Hailey Herald

The Hailey Herald

Wednesday, January 25, 2012

The world looks different

Yesterday's blog was freeing...liberating...even a little embarrassing.  It's hard to admit some of the feelings that you feel when going through a life-changing event.  It is hard to admit some of them even to myself.  It is difficult baring your soul to people you know and people you don't know.  It makes you an open wound without a band-aid.  You wonder what people think and you wonder if they are going to judge.  I  had to put them on all paper to get them out (honestly, I would have had a harder time saying them out loud to anyone....there they may be able to hang in the they can eventually get "lost" in cyberspace!).  At the time, I thought those feelings were awful, that I should be ashamed of them, that there was something wrong with me.  Now, thanks to all the wonderful other moms in the DS community, I know that it was totally normal and okay.  That alone helped me move forward.

Now that those feelings have been officially filed away (not forever, of course, they have a tendency to creep back up when you are least expecting them but nothing like the first time around).  I think it is time to share how those feelings have evolved and what they are now.  My feelings really aren't much different than the emotions of moms with typical children.

I'm not going to lie...I am over my anger with God.  I know that "everything happens for a reason" and "God only gives us what we can handle" but there are still days that I question God.  It is crazy to see the long list of "things" that one extra chromosome can affect in such a tiny body.  It is frustrating at times.  I hate that it takes  Hailey so long to "get" motor functions or cognitive skills that come so easy to other children.  I hate that we have to teach her every step of a process.  That it can take her months to learn something that a typical child can master overnight.  It drives me batty that she has smaller ear canals that can fill with fluid...that can affect her hearing...that can affect her learning and her ability to communicate with others.  The extra chromosome can affect how long it takes for her to get teeth and when they do start to appear, they don't generally come in the same order as a typical child.  It is frustrating knowing that most of the things we take for granted every day, will come harder for Hailey to accomplish.

There are not enough words in the dictionary to truly explain how much I love this little girl or how much I admire her.  She is the absolutely strongest person I know...yes, at only 11 months old.  She's a fighter, she is determined, strong-willed and funny.  She believes she is a comedian and knows exactly the things that drive her mommy crazy.  I know this because as soon as she removes her left sock, she looks for me and smiles from ear to ear.  She is now sitting up by doing the splits...a major PT no-no.  She knows she isn't supposed to do it because she searches for me when she sits up this way and I redirect her to do it properly.

Would I want to "cure" her DS?  Nope...there is no way to change that without changing who she is.  Without DS, she wouldn't have those beautiful almond shaped eyes.   She probably would not still be the cuddler that she is.  We wouldn't celebrate every achievement she makes like she has won the Nobel Peace prize.  Other families would think we were nuts if they watched us celebrate her "trying to" patty cake or army crawling.  These are all huge accomplishments in our family because she has worked sooooo hard for each one of them.  I wish there would be progress in research to assist with some of her cognitive function.  I keep praying there is a breakthrough but I don't want to "take away DS" because that is part of who she is....just like Brayden is good at math and is a people person...just like Ian is left-handed and quick-witted.

Am I still scared?  Yes...but for different reasons.  I still worry about how people will perceive her.  I worry about her having friends.  I worry about other children making fun of her.  I worry about her feeling like she is different and not "enough".  To overcome this, I try not to worry too far into the future...another thing I can't control (and everyone knows how I like to control things).  I try to educate everyone that Hailey is more alike their typical children than she is different.  She loves feeding herself, she loves loud noisy toys, she loves her brothers, she knows exactly what she isn't "supposed" to have...ipods, the boys video games, legos, etc.  She loves to throw her toys on the floor repeatedly to see how many times we will pick them up.  Hopefully, my child and other children with DS can help break some of the barriers that still exist for them.  I know she has changed the opinions of a lot of people in a short amount of time by doing nothing but being herself.  It was effortless.  Aren't we all scared for our children and what the future holds for them?

Am I still jealous...yes and no.  There are still times that I get down when another child her age or even younger accomplishes something that Hailey is working so hard to achieve.  There are no two children that learn or develop at the same time.  So why do we compare?  We all do it, but why?

I don't get as annoyed when people tell me how "special" Hailey is or that we are the "perfect" family for her.  There is no ill-will or malice behind their words.  Their hearts are in the right place.

I still get me a mom that doesn't and you might very well be looking at a saint!  I do get frustrated when Hailey doesn't "get" something after repeatedly working with her.  I have given up drinking with a straw for a couple of weeks but it is driving me crazy.  I was frustrated when my oldest wouldn't ride a bike without training wheels.  I was frustrated when my middle child was a biter.  I get frustrated dealing with insurance and the medical appointments.  I don't like arguing why this or that was necessary and not elective. 

Am I embarrassed by the way Hailey looks...not by a long shot.  Have you seen how many pictures I post of my children...ha!  Do I weed through them to find the best one...yes....but I do with the boys to...I definitely do when it comes to mine.  Heck, if I could figure how to airbrush part of my body out, I would alter every picture of myself!

Do I feel lost...not by a long shot.  I am playing the role I was born to play.  I was born to be the mother of these three beautiful children...through all the ups and downs that life throws our way.  I am right where I should be.

This will sound crazy to most people but I think anyone who has a child with DS will understand it.  Most of the time in our daily life, we don't "see" Down syndrome.  That isn't all of is just part of her.  It is in the background like Ian is left handed.  It's hard to believe that it was so much the center of our world when we first found the center of a circle.  Now it just sits out in the perimeter with everything else.

I consider our family extremely lucky.  There are many mothers who have lost children before they are born.  They would have given anything to have 5 minutes with their child.  There are people who have lost children to accidents and cancer.  There are families that watch their children suffer in pain from diseases that have no cure.   My daughter doesn't suffer.  She is healthy.  I pray for those families...I can't imagine their pain.

Yes, this little girl is special...but so are her are my friends' children...all children.  I am looking forward to her first birthday.  I will always hate that her birth was overshadowed by so much pain and hurt.  I look forward to celebrating on her birthday, everything that she is!

Look how excited she is to see a pic of her new cousin!

 There she goes with the left sock again!

 Mom, I'm so sleepy.  Maybe this would be a good book.

 The girl doing her two favorite things...eating and talking!

I love bath time!!!

Hailey's newest frustration...she's not fond of wearing shoes.


  1. I love this post too! I really enjoy how honest you are and I think that others do too. I am further along in this process (Ellie is 2+years) and yet I go through the same cycle of feelings. We still do not have patty-cake, but we almost have high-5. At times, I get so annoyed that it takes so long, but then Ellie surprises me and shows off all sorts of skills. The celebrations (as you well know) are positively wonderful and that much sweeter because it did take her longer to achieve them. Anyway, what I am trying to say is that I really enjoy your writing and your honesty. Plus, I LOVE the Hailey pics. She is beautiful.

  2. Ditto all of the above! And that girl is standing and sitting on her own! A veritable rockstar!

  3. This was such a fantastic post!!! Once again I can relate to everything you said!

    There are still times where I get sad when I watch Russell struggle with something. My heart still hurts a tiny bit when I realize he doesn't quite understand something we have been working on...Its just hurts to watch your child have to work extra hard. But all that extra effort and hard work makes those milestones and accomplishments so much sweeter.

    Hailey is too cute for words! Loved this post :)

  4. I'm healing too! I'm not jealous anymore but still get annoyed with moms who take things for granted. I'm still a little scared of all the health conditions that Ds can bring. But I wouldn't change Ben a bit - I like him just the way he is!

  5. Your blog is a gift to me. I think Hailey is adorable, and I appreciate your honesty and vulnerability.