Flexibility

We frequently hear, "Get that girl in gymnastics" or "I wish I could do that" in regards to Hailey's flexibility.  It is due to her having Down syndrome.  Many children with Down syndrome have ligament laxity, which translates to ligaments that are too loose.  We have to be careful that she doesn't hurt herself because of these loose ligaments.  Many children we know have had hip surgery due to their hip instability.

As a result of these ligaments, Hailey can sit in positions that make typical people cringe and she can move her limbs in ways that makes you question she has bones.  We have also been known to say, "We don't use our feet for our fork", "We don't comb our hair with our toes", and "Can you please take your feet off the table".  Here are a few examples of her flexibility:

Jason said the angle of her arms in this one looks quite uncomfortable.

Healthy Baby

Shortly after Hailey was born, I was somewhere (I say this because I was really in a fog those first few weeks) and overheard a conversation about a baby not yet born.

Woman #1, "Do you know the gender?" 
Woman #2, "No, but it doesn't matter...as long as the baby is healthy."
Woman #1, "Yes, as long as the baby is healthy."

I'm going to be honest, it really was by the grace of God that I didn't turn around and speak my mind.  I wanted to scream, "So what?  What if your baby isn't born "healthy"?  What are you going to do if your baby isn't healthy?   Are you still going to love that child?"  Apparently I had enough rational thinking to bite my tongue and not interject myself into their private conversation.

We all know what everyone means with the phrase "as long as the baby is healthy".  It truly means "as long as there isn't something wrong".  We really should say, "I'm hoping for a healthy baby".  "As long as" makes it sound like you are going to do something if you don't get what you want.  We say "as long as they're healthy"...almost as if we are making a sacrifice by not having a preference on the gender. 

Yes, there is a long list of medical complications that can come with Down syndrome.  Here is part of that list:
 - Heart defects - almost 50% of children with Down syndrome are born with some sort of heart defect.
 - Leukemia - young children with Ds have an increased risk of leukemia
 - Infectious diseases - abnormalities with their immune system make them more at risk for infection diseases like pneumonia
 - Dementia - people with Ds have a greater risk of developing dementia and Alzheimer's.
 - Sleep apnea - because of soft tissue and skeletal changes can lead to obstruction of airways.
 - Obesity - greater tendency than the general public
 - Thyroid conditions
 - Ear infections
 - Hearing loss
 - Skeletal problems
 - Poor vision
 - Seizures
 - Skin conditions such as psoriasis

Some issues may develop with Hailey later in life, but as of now, Hailey has vision issues (but so do many people in the general population) and she had a heart defect.  So technically speaking, Hailey was not healthy when she was born.  She was a very sick little girl, who was getting more fragile with each passing day.  There is no way of knowing if Hailey would have seen her first birthday.  However, thanks to medical technology and dedicated professionals, Hailey had that heart defect repaired at 4 1/2 months.  I joke that she hasn't stopped moving since, but I believe it's true.  The girl is always on the go.  Knock on wood, we have been lucky.  Hailey is healthy, but we definitely wouldn't love her any less if she wasn't.

Animal Lover

Today's post has zero to do with Down syndrome.  We do not have any pets.  Ian and I are allergic to cats.  We had fish before Hailey was born, but we had a string of bad luck with them and packed everything up a few days before Hailey was born.  As a result of no animals in the house, both boys are rather timid around animals and pets.  It's not that they don't like them, but they just don't have a great deal of exposure to them.  Hailey did not get the same memo.  The girl loves animals of all kinds.  She migrates to them every where we go.  Her face lights up and she is a happy camper.  Now we just need to convince her that her aunt's dog cannot go on our cruise with us!

Turning Off Down Syndrome

This is a post that is a constant battle between ethics, technology and my heart.

It's difficult to watch the news the past few months and not hear or see the headlines, "Scientist found a way to turn off Down syndrome gene".  What does that mean for the future of Hailey and the hundreds of thousands others with Down syndrome?  What are researches trying to accomplish?  The answer to both of those questions are "I'm not sure.  I don't know."

What it does do for us at the moment is question things.  Ethical, emotional and personal questions.  The biggest question that has to be answered is "What part of Hailey is Down syndrome?'  Some of it is obvious.  Some can be seen immediately when a person looks at her....lack of a nasal bone, almond shaped eyes, small mouth, occasional tongue protrusion (due to small high narrow palate and low muscle tone), small low set ears.  A few other traits, one would notice after watching Hailey for a few minutes, low muscle tone, speech delay and hyperflexibility.

After that, everything blurs and things are no longer black and white.  Everything is gray and murky.  What other traits of Hailey's are due to Down syndrome?  What traits are just because she is Hailey and they are a part of me and a part of Jason?  She is incredibly stubborn...some would say that is a part of Down syndrome and others would say that they have never met my family members :-)  What about her love of music.? The "need" to dance no matter where she is or who is around.  What about her love of people and the desire to interact with every person she sees?  People in church, the man waiting for his oil change, the car beside us, the gentleman bagging our groceries.  She has to wave, blow kisses and touch them.  What about her sassiness?  The way she shakes her hips and her finger as she tells me "no".  Her smile, her dimples, her laugh, her hugs.

Where does Down syndrome end and Hailey begin?  The answer isn't simple because they are melded together.  I personally don't think there will ever be a way to separate the two.  I know that I personally don't think I could ever agree to anything that could possibly change WHO Hailey is....her personality...her soul.  Down syndrome is a part of her, not all of her, but it isn't black and white.  There is only gray, but in this case the most beautiful gray I have ever seen!

Day in the Life of Hailey

A Day with Hailey

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 or cereal, 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 so she waits for the bus with the boys.

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 boards the bus.  I'm not sure how many kids they pick up a day with that much enthusiasm for school and the bus!

Singing at school

As soon as she gets off the bus, she has to check the mailbox and then we have to check her behavior chart.

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.

She loves dress up and her babies!

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!  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!).  

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.



31 for 21: Time to See

This year again, I will be participating in 31 for 21 Blog Challenge.  What is 31 for 21?

- Down syndrome is 3 copies of the 21st chromosome (in medical terms it is Trisomy 21, frequently shortened to T21).
- October is National Down Syndrome Awareness Month
- There are 31 days in Oct
- Blog every day (31) in Oct to raise awareness/acceptance about Down syndrome (T21)
- So ... 31 for 21 Blog Challenge

On September 28, 1984 Ronald Reagan signed a resolution proclaiming October as National Down Syndrome Awareness month.  It makes me a little sad though.  That was 1984...fast forward to 2011 when Hailey was born.  I was aware of Down syndrome, but I didn't know as much as I should have.  That was almost 30 years later.  So this October, I would like you all to continue on our journey.  We all started with awareness.  Slowly, we worked into acceptance.  We accept that all individuals are different and we accept people with Down syndrome, each with their own weakness and strengths.  Now let's move on and do more!

This is the year I want all of you to SEE Down syndrome.  Don't see just their differences, see their strengths.  See who they really are.  Treat them with respect.  Treat them just as you would any other person.  Don't turn around and walk away for fear they will speak to you.  Don't treat them as less of a person.

I know in the Cincinnati area, it is VERY common to see another person with Down syndrome just running errands.  Say hello and thank you to the girl with Down syndrome that is bagging your groceries.  Be a little more patient with the man busing the table beside you.  If you work at a school, encourage other children to play with a child with Down syndrome, not coddle or "mother" them.  Help the children find common ground with that child.  As a doctor, don't give your patient every "worst case" scenario.  Please don't scare or push your patient for an abortion.  If you are a nurse to a mom who just received a diagnosis, don't apologize and please do not act like the baby doesn't exist (I had this happen to me).  Ask how the baby is doing and gush at how cute and cuddly the baby is (because they really are the cutest and the cuddliest babies in the world!).

If you remember only one thing from this October, an individual with Down syndrome is a PERSON first!  A person with thoughts, feelings and dreams.  They want to have a happy, full life...just like you!

I hope you read about Hailey this month and also visit other blogs (click the 31 for 21 button on the right) as well to learn more about Down syndrome.

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.