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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Connecticut, Friends, New Foods, and a DIY Laundry Room

It has been far too long since I last wrote.  Life seems to be speeding by at a fast pace lately and I don't want to miss one minute of it!  Every time I sit down to write, I am called away and as such a few weeks pass and so here I am trying to get all caught up on writing.

Earlier in March, Ellie and I headed off to Connecticut to visit my best friend Megan for Spring Break while my husband stayed behind and installed a ridiculously large hot water heater (Yes, this would be the hot water heater to replace the one that went out back in December.  Yes, I said December.  Yes, I have more pictures with a story behind the laundry room demo, but that is another blog post all together.).  I also have the most awesome laundry room sink, but those pics will come later.  As in once the laundry room has walls and the sink is hooked up and well just check back in a few months.

My beautiful, energy efficient water heater.
It is actually located in what used to be a doorway to a closet.

Our ridiculously large water heater wouldn't fit in the original laundry room.
So we knocked down a wall that connected the old laundry room to a closet.
The washer/dryer are in the old laundry room and the water heater sits in what used to be a closet.

Moving on! Ellie and I took a 6 hour long flight to Hartford where I was finally reunited with my best friend.  It had been years since we had last seen each other and while "distance makes the heart grow fonder", I really wish there weren't so many miles between us.  Megs, I am signing the "Lonely" song for you right now.

Aren't they beautiful?  You know what?  Megs is pregnant in this pic!
I am going to be an "auntie" again!

The Chunky Chicken was awesome on the flight up there.  We had a 2 hour layover in Atlanta and that was fun.  Well, not really and I have a few words over Southwest Atlanta's idea of what "disability pre-boarding" is. (Let's just say that they let a bunch of other people [like 30] from another plane board before the 3 people in the wheel chairs and the teenager on crutches.  Seriously, I got all assertive and respectfully asked the attendants just how far these people were supposed to walk to their seats and how much of a sensory overload meltdown do they want to see with my Bear?  The pilot overheard me and requested everyone in the front row of the plane to move back to accommodate those with ambulatory difficulties.).  Anyway, to distract Ellie from all the noise, the altitude pressure, and a small closed in area with a gazillion people, I implemented most of the strategies that I outlined a few years ago with regards to flying.  Although not the passenger escort tip.  Nor the carseat.  Girlfriend was in her seat solo and was pretty proud of being a "big girl just like mommy".

Traveling with a Toddler Part 1
Traveling with a Toddler Part 2

Amazing things happen when you go to a new country. . . er. . . state.

Megan's son, C, is around the same age as Ellie and I cannot get over how much he has grown.  Of course, the last time I saw him he was 6 weeks old!  It was really good for Ellie to be able to play with another kid her age and being able to see him go through the day-to-day activities such as sharing meals together, bedtime, bath time, car rides, etc.  Since Andrew and I cannot provide Ellie with a sibling and our play dates are few and far between, this was quite the treat for Ellie.  As as well as quite the developmental nudge that she needed.

Hanging out at Bertucci's. Bear touched and licked pizza twice.

During the visit, Ellie tried a bunch of new kid foods such as pizza.  She didn't like it, but she tried it twice.  We are talking about melted cheese, tomato sauce, and crust all together.  Like 3 foods touching each other. TOUCHING!  This was HUGE! She also tried and loved: a hot dog, multi-grain crackers with Havarti cheese, and penne pasta with artichoke sauce.   She actually just hopped into my lap and devoured half of my pasta. . . my dinner. . . she stole it.  I about peed my pants with shock and excitement.

AND she slept!  As in all night for more than 5 hours at a time. On a fold out futon.  In a strange place aka the playroom.  She slept past 2:30am each night.  Did I mention that Bear slept!?  As in sleep.  As in shut eye.  As in counting your Z's. It official, y'all! We are moving to Hartford and into Megan's house for my own sanity's sake.  Megan, here we come!

"My darling C with those puppy dog eyes.  I just love you.  I will sit so nicely next to you
in this cart and share my cracker with Havarti cheese with you."

Oh and girlfriend sat in a Costco grocery cart without screaming, standing, or climbing out.  Nor pulling food off the shelves.  Or pitching a fit. Or me having to bribe her with ice cream.  Why?  Because she was  in-love.  "Oh my darling, C.  You are so handsome and strong and sitting in that cart so nicely.  I must sit next to you and make eyes at you.  Sigh. " 

The most heartwarming thing was to see C and Ellie play together.  C would come home from school and ask to see his friend Ellie from Taxis (Texas).  He treated her just like any other kid, which is sadly something we no longer see too often, even amongst family.  C is a little charmer with a  big heart and these big brown eyes that seemed to hypnotize Ellie into being on her best behavior.

After going to the Kid City Children's Museum, we checked out this local cupcakery.
Bear was so excited to see the mini-chocolate iced cupcakes.  Strangely, she didn't eat more than 1 bite
of the cupcake. I am questioning whether or not she is truly my child.

For myself, I have to say that most exciting part of the trip was the lack of electricity for several hours.  You know, when you have a well that runs off an electric pump so that you not only have no lights, but also no water?  Yep.  No water.  Not to fear, y'all!  Apparently, this occurs more often than my best friend would like to admit as she owns a back up generator.  When it became apparent that the power wasn't coming immediately back on or just back on in the near future, the excessively loud, roaring generator gave power to the refrigerators, the well pump, and to some of the outlets in the master bedroom.  Most importantly, there was power to the television in the master bedroom and we got to watch The Mocking Jay Part 1.  It was just like old times.

Added bonus, Megan and I went out alone, together, without the kiddos to a movie.  Like a real movie in a movie theater with no lights, stadium seating, and popcorn.  Not a TV.  Not a sensory screening.  Not during the day.  But a newly released in-theaters-only movie in a real movie theater at night after dark.  Now don't laugh, but Megs and I saw Frozen Fever.  Yeah yeah, I know.  Kid cartoon without the kids.  So shoot me.  It was fun! "some day my prince will come. la da da da da".  Oops, wrong princess song.

Facebook Friend Meet!

While in the frozen tundra, Ellie and I had the privilege of meeting up with my other Megan (Megan M.) and her daughter A who made a 5 hour round-trip drive just to see us! Megan M. and I met through Facebook and have chatted on an almost daily basis for a few years and yet, we never met.  It was so lovely to see her in person and spending a day with her and her darling daughter.  As it turns out, we are both talkers.  Every time Megan M. would say"it is time to leave", we would then chat for another 20-30 minutes.  This repeated a few times until it was so late, it would be dark for a huge chunk of her drive home! Isn't it amazing how you can form such a connection with a person that you have never met?  I am forever grateful for our two daughter bringing us together.

Hello Kitty rainboots. Check!
Double socks, shirted, pantsed. Check!
Borrowed winter coat. Check!
Borrowed hat. Check!
Borrowed snow gloves. Double Check!
You can find most of these things in Austin in March, FYI.

Our visit was over all too soon, but we encountered an unexpected surprise. Ellie and I were supposed to return home on a Friday, but the first leg of our flight was canceled due to bad weather in Baltimore.  While we could have been routed through 5 other cites, all flights to Austin were fully booked until late Saturday evening.  Thank you SXSW for bringing much business and traffic to our eclectic city of music. Consequently, the Bear and I got to spend the rest of Friday and a huge chunk of Saturday with Megan and family!  It also meant that Ellie got to play in the snow. . . something that just doesn't happen in Austin.  Being the perfect imitator that she is, Ellie learned how to shovel snow, make a snow angel, and sled as well as get intense sensory input by "tasting" a snow ball. Oh how I miss snow!

Don't worry. . . it wasn't a "yellow snow cone"

Because the flight from Baltimore to Austin was after her usual bedtime, she slept almost the entire way!  That means I got to start reading a good book, Motherhood Unexpected by Deanna J Smith

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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