Guest Blogger: Fear and Isolation

My friend, Michelle, wrote this emotional post on Fear and Isolation on her blog The Hailey Herald last week and has granted me permission to share it on The Chronicles of Ellie Bellie Bear.  She is a mother to 3 beautiful children - 2 boys and a little girl with a little something extra who reminds me so much of Ellie.  I really identified with her writing - "oh my goodness!  How did you know that is how I feel sometimes!?"-  and I imagine that many of you can too.

The Hailey Herald

Fear and Isolation 

by Michelle

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 impostor 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.

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A Typical Tuesday according to Miss Kamdyn

When Ellie was younger, I didn't know really anyone else with Down syndrome.  I was overwhelmed with trying to juggle doctors' appointments, new motherhood, as well as update a whole slew of people.  I started to write a blog to keep everyone in-the-loop. . . only none of the intended people read The Chronicles of Ellie Bellie Bear.  BUT, I started to follow other bloggers with children with Ds and they started to follow me.  One thing lead to another and some of us became Facebook friends--which is awesome because I totally wanted to stalk, er, follow this beautiful girl; Kamdyn.  Tricia from Life is Beautiful has graciously written a Typical Tuesday post from Kamdyn's point of view.

Hi, everyone!  Here's a little peak into some things about my day.  First of all, if you don't remember, a few months back, I had hand surgery.

My arms were in casts that went all the way down to my thumbs.  Mommy thought that the one silver lining of that 2 week recovery was that I would stop sucking my thumb.  Little did she know, I am not giving up my thumb!

Silly Mommy underestimated my persistence.

After a peaceful night of thumb-sucking and possibly waking up in the middle of the night to go sleep in Mommy's bed, I wake up and get ready for my day.  On Monday, Wednesday, and Friday, I go to preschool in the morning.  I can put on my own pants and shirt if it doesn't need to be buttoned.  Mommy got me a lot of dresses with leggings, because they are easy for me to put on and pull down for using the potty.  I'm still not potty trained, but I'm working on it.

Mommy does my hair.

I hate having my hair done.  It really bothers me, and I usually cry.  Mommy usually puts it in a pony tail, because it's fast.

I like to put on my shoes by myself.  Sometimes I will even put on my shoes and sneak out the back door and try to go play.  But Mommy has to help with my shoes and sure steps, because they are tricky.  The doctor told us that my ankles still turn a lot, so I have to keep wearing my sure steps.  I don't mind wearing them now, and Mommy got "chips" from the doctor that help them not rub against my foot.  They have been much more comfortable since we got the "chips".

I also need glasses, because I am nearsighted.

Multi-grain cheerios is my favorite breakfast.

But sometimes Mommy lets me have cake and yogurt.

Other foods that I like to eat are marshmallows, broccoli, and sauteed peppers.

School is a lot of fun.  I get to play with friends, read books, do crafts and art projects.  Our class made "All About Me" books, and I like to sit at the table and look at all of the "All About Me" books.

At home, I like to play dress-up.

I like sensory play with water, sand, and rice.

I also like to paint.

My favorite movie is Frozen.  My favorite shows are Caillou and Daniel Tiger.

I also like it when Mommy takes me to the library.

The last time we went, I gave Mommy a break by not trying to escape when she wasn't looking.  Ever since I took a solo ride on the elevator that one time, she watches me REALLY close.

Some of my other favorite activities are:

Removing items from the refrigerator.

Climbing the cabinets, usually to get marshmallows or candy.

Sitting in silent protest when I'm not getting my way.

I am slightly addicted to the iPad.  I have one of these schedules to help understand when I can have time with it.

Sometimes my little sister is really pesky while I'm trying to watch one of my favorite on the iPad.

If she's bothering me too much, I will go into the bathroom and shut the door to try to get away from her.

But we have fun together too.

    

I also like to help Mommy with dinner.

I love my family. They are the best.

Thank you both Kamdyn and Tricia!

You can continue to check out Kamdyn's antics at:

Life is Beautiful

http://teal915.blogspot.com

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Typical Tuesday: Little Miss Hailey

Today, I would like to welcome guest blogger Michelle from The Hailey Herald.  Her daughter, Hailey, has an even more impressive fashion sense than Ellie Bear.  This is the 2nd post in my new series-Typical Tuesday.  I love seeing what a typical day looks like amongst friends as what a day in our household looks like may be different than another family's.  It gives newer parents a glimpse into the day-to-day life of an older child with Down syndrome.

A Day with Hailey
by Michelle Arthur

Being the youngest of 3, Hailey's days sometimes are not her own.  Some of them are dictated by her very active older brothers.  Between baseball, basketball and soccer, they keep the entire family's calendar booked.  Our week days are quite similar though (well...unless we are dealing with the lovely Midwest snow like we have all this winter).

I can't always tell you when Hailey's day begins.  Most days, it starts between 6:30 and 6:45.  Right before mom wakes up.  Hailey has a baby gate at her door to keep her from roaming through the house at night.  Last week, we woke to our door being slammed shut repeatedly!  She stands at her gate and exclaims quite loudly, "Bray-den!  Bray-den!"  He bounds up the stairs quickly trying to not wake the rest of the house up.  By the time I come downstairs at 7, Hailey is either in full play mode in the playroom or cuddled with her brothers on the couch.  They are deep into an electronic and don't seem to notice her curled up against them. 

Eventually, I can coax her to the table for breakfast.  She will generally eat the exact same breakfast every day.  Yogurt, waffle, fruit and water.  She will dictate that you use butter and syrup and she will tell you which fruit she wants.  Breakfast seems to be a nonstop battle recently because the boys eat and then head upstairs to get dressed.  Anytime one of the boys exits the room, Hailey believes that is her cue to leave the table.  Sigh....some days she is too observant.

She prefers for Daddy to get her donuts!

The boys leave at 7:45 and 8:15.  During that time, we convince Hailey to stop playing with the toys and dress up items she has chosen and we get dressed.  She's getting better at dressing herself, but still needs some assistance.  Four days a week Hailey has preschool.  I still drive her everyday so we head out around 8:30. 

Every now and then, she tries to convince me that this is proper attire for school!

Hailey loves school!  She gives me a big kiss and hug before she bounds in the front door.  I pick her up a few hours later. 

Singing at school

My predictable daughter asks for a snack or applesauce as soon as she tells me she had a good day.  One day after she first started school, I brought goldfish or an applesauce pouch for her to eat on the way home (busy work to keep her from falling asleep before getting home!).  Apparently, one time is enough for her to create a habit...unlike the 21 days it takes the rest of us!

She likes to look at books in the car, too.

Sometimes, we don't make it all the way home without falling asleep

Love seeing this gorgeous face every afternoon

Hailey walks into the house and has a "chat" with her bunny chair and then requests lunch. 

Telling Bunny about our day

It's hardly a request though.  It's more of a dictatorship.  She tell me "crackers, yogurt, cheese, celery, ranch, turkey and grapes".  It will vary sometimes, but she seems to want the same every day.  She will not give me any objections if I change the "menu", but I generally do not fight her if we have everything she asks for.  Ironically, when she is home by herself, I don't have to fight her to remain at the table.  Just when big brothers are home...hmmm.....  Lunch is followed with play time and if I am fortunate, nap time. 

A little playtime after lunch,

She loves dress up and her babies!

Hailey sleeps with a small army of stuffed animals.  Doc McStuffins, Chilly, Stuffy, Squeakers, Hallie, Lambie, Gabby, Boppy and her dolls, Bob and Abby.  Everyone has to sleep on their stomach...just like Hailey does.  She also sleeps with a weighted blanket.  It seems to calm her and help her stay asleep (yay for Mom and Dad!).  Her nap varies from an hour to two hours.  Some days she will open her door and bound down the stairs looking for her brothers.  Other days, she will cry at her door until one of the boys comes to get her.  I don't always see her when her brothers arrive home.  

She loves being with them even if they ignore her from time to time. 

The boys' work on their homework so we work on identifying shapes and letters and occasionally use apps on the iPad to work on letters and sounds.  She works better while the boys are doing their homework. 

Dinner varies depending on the night.  Some nights we eat as early as 4:45, but overall we prefer 6.  Most nights we eat, clean up and then head out the door for one of the boys' practices.  They aren't Hailey's favorite, but she has been getting better at them.  Some days she runs the entire time up and down the halls of the school...giggling the entire time.  Other times she will look at flashcards or a book.  It all depends on what Hailey's mood is. 

Sometimes, dinner must be eaten on the go.

She is their biggest fan!

Some days we play with other siblings at practice.

Bedtime starts at 7:30 with a bath and her medicine.  She currently takes two medicines for season allergies.  They are the only thing that seems to keep her sinus infections at bay.  I don't like to give her medicine, but she seems to have a runny nose year round if we don't.  After medicine, she asks for milk.  She will steal a snack if her brothers are within sight.  Ian has been known to hide so he doesn't have to share!  She will then tell you if she wants milk or kefir.  Sometimes she will even try to sneak chocolate milk.  She lines it all on the counter ready for you!

Here she stole someone's ice cream.

Bedtime for Hailey falls between 8:15 and 8:30.  99% of the time she lies down without a fight or disagreement.  Some nights she will tell us good night and head up the stairs when the boys head up.  Those nights, she sneaks in bed with them...hoping we will let you stay with them!  She will tell me good night and tell me to turn the light off. 

Sneaking into bed with the boys.

She didn't even make it to bedtime!

Daddy referees and sometimes works late hours.  Whenever he comes home, she will stop any of these activities and park herself either beside him or on him...for as long as he will sit still!  Hailey is a pretty easy girl, but overall she likes her schedule and it seems to keep her centered.  Older brothers change it up a little, but she rolls with it.



You can continue to follow Hurricane Hailey 

over at The Hailey Herald

http://thehaileyherald.blogspot.com