The Hailey Herald

The Hailey Herald

Thursday, October 24, 2013

It Just Is (31 for 21)

Today is the 24th of October.  For the past 24 days, I have showed a glimpse into our world of Down syndrome.  I am well aware that not all children with Down syndrome are exactly like Hailey.  They are each individuals with their own strengths and weaknesses.

There isn't much else I can say to everyone about Down syndrome.  Hailey has Down syndrome.  At first we hated it and thought our world was over.  Later, we found out that those feelings were normal (I really hate that word!) and we had to work through them.  She had a heart defect and so do about 50% of children born with Ds.  We were fortunate, it was an "easy" fix according to her surgeon.  Her mama's heart though broke in the process.  I thought her going through heart failure and open heart surgery was going to be the end of me.  I couldn't handle the stress and fears.  Thankfully, I had support from my friends and family.  I also gained a huge support group through the world of technology.  A group of women who had gone through what I was going through.  They were there to support me and celebrate with me.  I wasn't alone.

My life has changed because of Hailey.  It changed with the birth of all of my children, but Hailey's more substantially.  It has brought a new awareness to all of us.  We see people differently.  Everyone has a story.  Everyone is dealing with something that you are not aware of...something you may or may not be able to see.  Don't judge people by what you see on the outside.  You may see a frazzled mom who doesn't seem to be aware of how her children are acting or you see a mom totally ignoring her child's tantrum.  What you could see as a mom who doesn't care could be one that hasn't slept in days, her child could have a g-tube (that you don't see) and she is constantly adjusting it, making sure it doesn't leak through the night, making sure she gets the proper nutrients into her child.  She could be a mom that is suffering from post-partum depression.  She could be not sleeping because she is so worried about the mountain of medical bills that insurance and the hospital are arguing about.  You just don't know what that mom is going through or has gone through.  Don't judge her and think you would do better or you could do better.

Don't assume that every behavior Hailey exhibits is due to her having Down syndrome.  It's not!  She is 2 and she learns from her environment.  When she hugs your child and then takes her to the ground, it is not because she is is because she has a 6 year old brother that freqently body slams her.  If she takes a toy from your child, it is not because she is never told "no", it is because she has older brothers that grab their items (that they leave on the floor) from her grasp and yell "no" and "mine."

No need to baby talk to individuals you see that have learning disabilites.  We don't baby talk to Hailey.  We talk to her like any other 2 year old.  We may add sign language and we may have to repeat it, but we do not talk down to her.

Please remember that your actions and feelings towards individuals with disabilities will be passed onto your children.  You are their first teacher.  Please teach them respect for all individuals regardless of size, color, or abilities.  Do not use the r-word...teach them the new r-word "respect".  Teach them that Hailey is just a little girl that wants to play with your child and not be ignored.  She has the same emotions as your child.

Our life is fuller.  We have met so many wonderful people because of Hailey.  Many of them our circles would have never crossed without her.  I am thankful for the women and families we have met.  We have an automatic connection.  They are a group of individuals that I can ask for advice.  They are a group that I can turn to when I feel like no one else in the world understands the battles that my daughter faces.  The obstacles she has to endure.

Most of all this month, I hope that everyone has learned DO NOT GIVE US YOUR PITY!!!  Don't feel sorry for me because my daughter has Down syndrome and I will not feel sorry for you because you don't have a child like Hailey in your life.  Don't pity us, because we aren't feeling sorry for ourselves.  Don't give me pity eyes or patronize me, because I don't want it.  You can ask me any question about Down syndrome (I will answer it), but don't be negative or insult my child.  If you can't stop and say something nice.  Give us a smile and be on your merry way.

Brayden is good at math and has a heart of gold.  Ian is athletic and funny.  Hailey has dimples that will light up a room and a laughter that makes you smile and changes your day.  She happens to have Down syndrome..."whoop dee do".   It just is. It doesn't define doesn't define our family.  We love her, we love our family, and we love our life.

These pictures are repeats, but they are so need to see them again :-)