The Hailey Herald

The Hailey Herald

Thursday, June 18, 2015

Isolation and Fear

I didn't realize how long it had been that I have updated Hailey's blog.  Part of it could be technical issues with our laptop...the other part is life is busy.  The latter isn't a great excuse because I always said I wanted to continue to blog as Hailey got older so that people could see it isn't just cute babies with Ds.  I have lots to update, but all of the big things deserve their own posts.  The end of the school year, Hailey's extremely active imagination, her love for outside, her new negotiating skills when she doesn't like my answer and the dreaded potty training.....

Today, I'm going to touch on something I haven't felt in a couple of years.  I probably felt it the most when Hailey was first born, those first few fragile months.   Those first months while we watched our daughter almost holding our breaths...not sure if heart failure was going to be slow or fast...not sure when open heart surgery was...at the same time, we dealt with the shocking news of a Down syndrome diagnosis.  Those first few months were isolating.  I felt alone in the world.  I felt like no one knew what I was going through.  I felt different than all my friends with typical children.  There is no way they could understand what I was going through.  I felt like an imposter with parents with other children with Down syndrome because I wasn't sure how to navigate that world.  The isolation made me angry...made me sad.  It enveloped me at times.  I couldn't sleep and I turned to lots of Graeter's ice cream at 3 in the morning to make it better (no, that didn't really work either).  Hailey's open heart surgery was finally scheduled and life moved on.  The feelings dissipated some.  I had other things to focus on.  I had a healthy little girl who had tasks that needed accomplished.  The boys were back in school and we had two soccer schedules to juggle.

I remember the isolating feeling returning a couple of time over the past 4 1/2 years.  I don't remember it lingering though.  I think it reared it's ugly head when Hailey was crawling and then again when she started walking.  I know I've dealt with it some waiting for my daughter to learn to communicate.  Since the very beginning though, it never stayed.  It was a thought or two and it was moved to the back burner again.

Last week, however, the overwhelming, smothering feeling returned.  It hit when I wasn't looking and it hurt.  It stopped me in my tracks.  I have a feeling when it started.  We were out and two little girls were standing beside Hailey that are just a little older than her.  There was one on each side of her.  They didn't speak to her, they just stared.  They didn't interact with her...they just laughed and ran away.  No, they did not do anything wrong, but I could see it.  They saw the differences with Hailey and there is nothing I can do about it.  I can't make kids like her.  I can't make kids play with her.

The next day, it hit me that Hailey does not have any friends.  No typical friends that she has play dates with...she occasionally has play dates with kids that have Ds, but let's face it, that is not the real world.  The majority of Hailey's world is with people who are typical.  I have to find a way to build up Hailey's community.  Hailey needs typical friends.  She does well at school with the typical kids, but she doesn't get invited to any of their birthday parties and she's only 4.  How will it be at 5, 6, 10?  Will it be better when she's in a school environment and not just preschool?  Will it be worse?  It makes me anxious and gives me a panic attack just thinking about it.  I suddenly feel like I'm that brand new mom in the world of special needs.  I feel like I'm starting all over again.  I feel alone again....I feel isolated. 

Fortunately, I know what triggered this and I knew what the issue was.  I also realize that spending a TON of time at home this summer (due to attempting to potty train Hailey) is compounding the feeling of isolation...it's can be isolating spending so much time in the bathroom at home with your 4 year old.  I'm partially through this episode and I'm working on a game plan.  Unfortunately, I know that isolation and fear will come back again.  Maybe next week...maybe next month...may not be until next year, but it will return.  I know I am not alone in these feelings, but sometimes they just stink.


In the end, I know I am not alone.  This world may have it bumps and it is not the road I planned to travel, but with this little girl leading the way, it is bound to be full of smiles, dimples, laughter, fun and hugs.







Thursday, April 16, 2015

Motherhood Unexpected

Shortly after Hailey was born, I took to the internet.  Not to research Down syndrome, but to see Down syndrome for real.  What did it look like next week?  Next month?  Next year?  3 or 4 years?  I didn't want to see adulthood...not just yet.  I wasn't even ready for adolescent.  I needed to see that it was going to be okay and this initial hard stuff would pass.  I needed to see with my eyes and my heart that life would be "normal".  Fortunately, the blog world is full of blogs about children with Ds.  I could see all types of behaviors and all types of medical concerns.  Quickly, Everything and Nothing from Essex became one of my favorite blogs.  The blog is written by the mother of a gorgeous little girl, Addison.  She has spunk, impeccable fashion sense and an insane love of chocolate.  Her mom, Deanna, is honest and puts it out there.  She shares her worries, fears, bad days and good days.  I needed this.  I needed to see the normalcy of having a child with a disability.  Deanna's blog has made me cry and made me laugh.  She has a way with words that I can only dream about. 

I was quite excited when Deanna shared that she was writing a book.  I was impressed.  I wish my thoughts came across as eloquently as hers do.  I was even more excited when the book released.  The book, Motherhood Unexpected, is different than most of the books I have read from others of children with Ds.  This book is not a nonfictional tale of her life with Addison.  It is a fictional story about a woman who had her life mapped out.  Claire has made sure all her i's were dotted and t's were crossed.  We all know the type...type A personality that knows what she wants and what she needs to do to reach those goals.  Maybe a little bit of a perfectionist in everything she does.  Claire, her mother, and her sister all embark on journeys that they didn't expect...that they didn't plan.  But isn't that what life is all about?

I think this book can make everyone of us think of a time in our life that events didn't go as planned and rocked us to our core.  This book isn't about Down syndrome, but about life and motherhood.  It made me reflect on events that have happened in my life.  Times when I have questioned, "Why me?" or "This isn't fair."  These times are a crossroads in our life.  This is when we have to decide which path to take.  Let the circumstances overcome us and give up or accept them, turn to our faith, and fight life head on. 

I laughed, cried, reflected and even cringed while reading this book.  At times, I felt like Deanna's words were mirroring my life.  I truly believe this book is for everyone.  A wonderful story that tackles life's biggest decisions.  A story that everyone can relate to.

Thursday, March 19, 2015

Time to Celebrate!

Everyone has their own traditions.  Everyone has their own celebrations.  We know that we have a few family "woohoo's" that are different than other families.  We love St. Patrick's Day because Hailey came home from the NICU that day to be with her family.  We love July 12 because that is the anniversary of Hailey's open...the day Hailey was given a second chance at living.

 We also celebrate World Down Syndrome Day which is this Saturday, March 21. 3-21...the significance in that is that individuals with Down syndrome have 3 copies of the 21st chromosome.  We are celebrating again this year with our county group of the Down syndrome association of Greater Cincinnati.  It is a wonderful get together of families that have a child with Down syndrome. This year we have 160 people planning to attend (this is just families from a two county area).  That's quite a party!!!  We are looking forward to an obstacle cource, open gym, swimming, dancing, pizza, cake and celebrating with other families.  Hopefully, I can convince my diva into getting her nails painted again.  She doesn't like sitting down long enough to get them painted!

There are other ways to celebrate World Down Syndrome Day.  This was taken from the World Down Syndrome Day website.  In honor of World Down Syndrome Day, the National Down Syndrome Congress and six other national Down syndrome organizations are promoting "Random Acts of Kindness" in the United States.  In collaboration with Down Syndrome Affiliates in Action, Global Down Syndrome Foundation, International Down Syndrome Coalition, International Mosaic Down Syndrome Association, Lumind Foundation and National Down Syndrome Society, we have created a toolkit for WDSD 2015 that you can use to share information about Down syndrome with your community, celebrate people with Down syndrome, and spread a little love and kindness in the name of Down syndrome!   It's as easy as 1-2-3-4!

The kids and I have decided that we are going to attempt 21 random acts of kindness...unfortunately, we have started a little late.   I wonder if we can get them all finished in 2 days.  I guess we shall see.

What will you do to honor Hailey and all the other individuals with Down syndrome?  Nothing is too big or too small!

I would love to hear what you did!


 
 

Friday, March 6, 2015

Is She Sofia or Doc?

Hailey has an odd quirk that almost slipped past me.  Things are always chaos when the kids get home from school.  When Hailey and I get home at noon is just as bad.  I try to feed her lunch as quickly as possible so Hailey has time to play before taking a nap.  One day last week, I was making lunch and noticed that Hailey was talking to her bunny chair.  She walked in the house, made a bee line into the family room, and crouched down in front of her bunny chair.

After that day, I was more aware of what she was doing.  It's the same every day.  She walks into the family room and talks to this stuffed bunny.  She speaks softly enough that I can never make out what she is saying.  It is always a very animated conversation.  I try so hard to listen to it, but when I get closer, she stops speaking and grins at me.

I may never know what's she's telling this bunny nor know why she has full conversations with it every day.  Maybe she thinks she is Sofia the First who understands what animals are saying.  Maybe she thinks she is Doc McStuffins and her stuffed animals come to life.  Either way, it is a cute little stage that I look forward to every day.

 
 

Wednesday, March 4, 2015

Where Hope Grows

From day 1, I've realized how lucky we are to be raising Hailey in Cincinnati.  The support here is phenomenal.  We have one of the best children's hospital in the country and one of the largest, most active Down syndrome associations in the country.  This week, I was reminded of this once again.  I had the opportunity to watch a screening of a new movie, "Where Hope Grows" thanks to our Down syndrome association, Reelabilities, and LADD.  Before I touch on the movie, I would like to share information about Reelabilities and LADD.

The Reelabilities Film festival presents award winning films, music, dance, theater, discussions and other engaging programs, bringing together the community to explore, discuss and celebrate the diversity of our shared human experience.  These films are by and about people with disabilities.  ReelAbilities strives for inclusion of all people.  Here is the link to more information about the festival that was hosted in Cincinnati.

Last year, LADD, Living Arrangements for the Developmentally Disabled, collaborated with them enabling them to focus more resources and provide more support to festivals around the country.  Their goal is independence through education.  They provide a variety of programs and services for people with disabilities, from young adults just leaving high school to older adults who qualify for senior services. Their community-based services are unique in the way they teach independent living skills that will help people become self-sufficient and less dependent on others.

Fortunately, Cincinnati was a host city of the Reelabilities Film Festival.  On Monday, Reelabilities, LADD, the Down Syndrome Association of Greater Cincinnati and the Cincinnati Reds made it possible for a 400 of us to see Where Hope Grows.  I've wanted to see this movie since they showed it at the Down Syndrome Convention last summer. 

I've included the trailer of the movie. 


This description was posted on the movie's webpage.  Calvin Campbell is a former professional baseball player sent to an early retirement due to his panic attacks at the plate. Even though he had all the talent for the big leagues, he struggles with the curveballs life has thrown him. Today, he mindlessly sleepwalks through his days and the challenge of raising his teenager daughter. His life is in a slow downward spiral when it is suddenly awakened and invigorated by the most unlikely person – Produce, a young-man with Down syndrome who works at the local grocery store.

Calvin slowly loses the chip on his shoulder as he begins to experience the world through Produce’s eyes. Faith, work, purpose and most importantly family, blossom into Calvin’s life as their friendship develops. The unlikely pair becomes intertwined giving Calvin’s life new meaning and purpose, but unfortunately leads to tragedy due to single decision echoed from Calvin’s past.

Where Hope Grows is a story of finding redemption through faith, hope and love.





I'm going to be 100% honest...there were parts of the movie that made me cringe.  Comments, actions...they stung to my core.  The r-word, the stigma of people with disabilities, how some people truly do feel and treat people with disabilities.  I shuddered but stuck it out.  They were there for a reason.  It was necessary for the development of the relationships in the movie.  I know some people were offended by the stereotypes that they portrayed with Produce.  His optimism (always happy) and him hugging everyone at the grocery store are a couple of them.  I'm going to be honest, those didn't bother me because right now, Hailey is generally happy and does love to show affection.  I loved that the film portrayed an independent man with Down syndrome with a job.   It also showed him having true friendships with people.  You could feel the love these people had for him.  The movie showed that love and friendship can change people.  I also believe on a larger scale, the movie proves once again that people with Down syndrome are employable...even in acting.  This movie pushed to end the r-word and it also showed how to treat people with disabilities...how we should treat everyone.  Respect for all regardless of abilities.    I would love to touch on more but I don't want to give away the movie :-)



After the movie, one of the producers, Milan Chakraborty, Ted Kremer (Cincinnati's famous bat boy and now employee of the Cincinnati Reds) and David DeSanctis (Produce) answered the crowds questions.  I loved watching and listening to David and Ted answer questions and respond to the crowd.  They are both very animated men and love to talk!  Milan was very frank and honest.  He told us he wasn't happy with the original ending so the writer told him, "Fine, you write it!"  He consequently rewrote the beginning.  I can't give that information, but it was PERFECT!  Milan also told us the movie was originally written about a man with autism.  He said that it has been done why not try someone with Down syndrome.  Immediately, they started asking, "well what actor can we get to play that role".  Thankfully, Milan encouraged them to seek an individual that actually has Down syndrome.  Yes, I would have boycotted the movie if they had someone pretend to have Down syndrome. 



I know that most of the people that attended on Monday had a connection with Down syndrome, but I do believe this movie would be good for everyone with or without that connection.



The good news is this movie is being released to theaters on May 15.  The bad news is this is an independent film and is not released everywhere.  Cincinnati is not on the short list.  The only way it can be brought into another market is if they can guarantee 500 sold tickets.  At that time, the production company can contact the theater.  Milan was told by Hollywood that no one wants to watch this film.  It's been in the making for 6 years.  I'm hoping society can prove Hollywood wrong!  It takes baby steps for us to make the world a better place for Hailey and others with disabilities.  This is several of those steps rolled into one. 



If Where Hope Grows is released in your area, please go see it.  Please support Hollywood making meaningful movies about people of all abilities. 


Monday, March 2, 2015

Birthday Celebrations!!

Even 4 days later, it is hard to believe that Hailey is 4.  It is so hard to believe it has been 4 years since I thought God punished me.  It's been 4 years since I thought I had suffered the worst pain I have ever felt.  I can't believe that we have only been celebrating this little girl for 4 years!!!!

I'm afraid Hailey thinks everyone celebrates their birthdays for three weeks!  Hailey gets to celebrate with both families and then at home with the 5 of us.  I wasn't sure how much Hailey was taking in when we were talking about her birthday.  My question was answered the moment I woke up the birthday girl.  I actually had to wake her up...that is a rarity.  I announced, "Happy birthday!  It's your birthday, Hailey!!!"  Without her eyes even open, she stated "presents open?"  I had to smile at that one!  Guess she got it!  I think she requested the birthday song no less than 10 times before school!  All smiles and dancing when someone humored her and sang it to her. 

It's my birthday...bring on school!

Who doesn't love a birthday crown?


When she walked into her classroom, she threw her arms up and announced, "Birthday!".  She then told all her friends the same thing.  After school, we celebrated with lunch at Chipotle and ice cream at Dairy Queen.  The employees at Chipotle seemed a little smitten with my birthday girl and gave her a free birthday lunch.  She then got to visit Dad at work followed by presents and more birthday songs with her brothers at home. 

I have so many pics of her on this chair......

Apparently, every where is a photo op!


She was so into her birthday this year.  Presents, singing, cake...it made this momma's heart happy to see my little girl so happy.  She's still asking for the birthday song and I'm sure she will for awhile.  I heard her singing it to her Frozen dolls while serving them cake.  She always loves to tell the world that she's 4. 


Taking a break from presents to read.


She loves to celebrate!

Feeding her shoe obsession

Woohoo!  Jewelry!



Ooooohhhh....Doc!

Woohoo!  Cake!

Big brothers tired of singing Happy Birthday!

Blowing out the candles


Me and my big brothers!

Yay for 4!


I can't wait to see what 4 brings to our world!!

Tuesday, February 24, 2015

Celebration Just Around the Corner

We have been talking a lot about Hailey's upcoming birthday.  Most of the time, if we ask her old she will be and she will answer "4" and grin from ear to ear.  She keeps asking us to sing the "birthday song".  Dad will indulge her more than mom :-)  At the end of the song, she always pretends to blow out candles.  I don't think it fully hit me until tonight while I was wrapping presents.  My baby is turning 4 in two days...the little girl who was so frail, tiny and sick...who is now so healthy, strong and full of life.  It's hard to wrap my head around it.  I know that some people might think I'm crazy to get so sentimental over a 4 year old's birthday, but it is difficult not to.  There is a good possibility that she would not even seen her 2nd birthday without open heart surgery and her she is turning 4!  She's my last baby and this will be the last time we will celebrate 4 :-)

It is also difficult for me to grasp the little person we have in our lives.  She isn't what I thought we were going to have.  The wave of fear that washed over me when the doctor uttered those two words "Down syndrome" brought images and stereotypes of what I thought Down syndrome looked like, what it was.  I laugh at those now.  She doesn't fit a single one of them, but neither does any person I have met over the last four years with Down syndrome.  I thought she would be the wall flower in the corner of the room.  The only way she would be in the corner now is if she is in time-out!  Wallflower...she definitely is not!  She wants to world to notice her and loves attention. 

The first night, the first 12 hours of her life, I questioned "why God"?  "Why us?"  "What did we do wrong?"  I still sometimes ask "Why God?", but in such a different way.  Not out of sorrow or anguish, but out of pure shock and amazement.  How did we get so lucky?  Why did God chose to give us this wonderful gift?  This little girl that lives life to the fullest.  This perfect little person that has made us appreciate so many more things in life.  She has brought so many wonderful people into our life that we never would have met before and some of them are in our own community.  Why can't everyone get this lucky?  What on earth did I ever do to deserve her (or her brothers)?



The day before open heart surgery

A few weeks ago, a friend and I were talking about miscarriages.  She happened to have one between her 2nd and 3rd children as well.  I told her how quickly we became pregnant with Hailey afterwards and without missing a beat, she said, "God didn't make a mistake with Hailey, did he?  He had her ready for you.  He wanted to make sure you were ready for her."  I turned my head so she wouldn't see the tears forming in my eyes.  I've always thought that, but it made my heart happy to hear someone else say it. 





Every holiday with Hailey seems to be better than previous one because she gains so much more understanding and gets so excited.  I'm positive this birthday will not disappoint.  She has requested cupcakes, cake, chocolate, presents and Elsa!  I can't wait to celebrate with her!!



Who wouldn't want to celebrate with her?