I'm gonna wash that man right out of my hair.....

 

 

 

Locks of Love

 

In more ways than one.

 

 

Everyone loved these beautiful tresses.

 

 

 

And they required simple maintenance in the beginning.

 

 

But the longer they got the less love and more patience they required.

Until one day everyone was screaming and crying while Mommy 

brushed out the Rapunzel strands.

 

 

It  was decided to trim those glorious locks.

 

 

But in the spirit of all that is this journey with Bridgie, we could not simply trim the tresses.

 

 

We decided to donate all 12 iridescent inches to Locks of Love.

 

We think Lucy approves.

 

 

 

And Bridgie too!

 

 

 

 

 

 

 

 

 



Staring

I used to think Staring was rude...

 

 

Until it started coming from little kids.

 

I had high hopes for this summer at the pool.

 

But navigating the pool with three kids is a high anxiety roller coaster ride for me.

 

Erin is a good swimmer, Eoin is getting better, and Bridgie loses focus quickly.

 

Bridgie's idea of fun at the pool involves about 10 minutes of initial pool time, then quickly running to the snack bar for a "POP!!!", then into the baby pool, back to the big pool, and finally back to the snack bar for a "POP!!!!".

 

She is now even going over to the bag first to get the money and then sprinting to the snack bar.  She runs over grabs onto the counter then looks back at me for the money then waits for me to prompt her "Bridgie, what do you want?"  then she screams "POP!!!!".

 

The pool has freeze pops for 10 cents.  The teenagers manning the snack bar have been great and I usually see them chuckle after she says "tank-oo" and blows a kiss. 

 

With Bridgie's rounds around the pool, it does not make me feel safe having Erin and Eoin in the pool alone, therefore, we still usually wait till Daddy is home and all go together.

 

This summer has also brought about many stares.  Usually, from children but some from adults as well.  For many people, the realization that Bridgie has Down syndrome only set in this spring.  I am guessing because she was usually in a stroller or in the baby pool last year it was not as noticeable.  Now she runs around the pool like she owns the place. 

 

Many, many, children between the ages of 7 and 10 have come right up near her in the big pool and just stared at her.  Trying to figure her or it out.  Usually, there are no words and then they swim away.  The under 7 set are too busy navigating the water and the under 4 set just smile and bounce in the water with her.

 

One afternoon in the baby pool a Mom and her 4 year old were with us and the 4 year old was chattering away with us, wanting to know Bridgie's  name, age, what shows she likes etc... the 4 year old flitted about the pool bringing Bridgie toys and eventually she sat down next to me and she said in a curious tone "Why are her eyes like that?"  I looked at Bridgie and she was sitting in the water with her hands in the 'bubbles', the jet, and she was in her zone where she is kind of staring off into space.   When she does this her tosis is in full effect so her right eye is nearly closed and her left eye is tracking outward. 

 

I did a quick double take and decided to tell the little girl that Bridgie has strabismus and that her eyes track out away from each other, making it hard for her to focus them together.  I then said but she can see just like you and will have a Dr. fix it for her soon.  This appeased the lass and she flitted off and the mom smiled.  She could have meant the shape of her eye but I did not think she would understand Down syndrome and since her mom was there I hoped that she might answer her other questions later.

 

I sincerely hope that her mom would talk with her about Bridgie later but who knows.

 

Another afternoon a little girl about 5 was in the baby pool with Jerry and Bridgie  with no parent to be found.  The little girl was desperate for Jerry's attention and when he did not really give her what she wanted she started 'messing with' Bridgie in order to get the negative attention.  From teasing her, taking her toys, pouring water on her head, and then trying to push her under water.  At this point Jerry picked Bridgie up and they left.

 

Unfortunately for this little girl, there was no parent present to teach her how to interact with smaller children let alone the bigger picture of someone with Down syndrome.

 

You can sometimes tell a parents stance on people with disabilities or differences by the behavior of their children, some come over and love all over her, some ask tons of questions, while others avoid at all costs.

 

It would be my hope that parents we see would talk with their kids about Bridgie or about Down syndrome and encourage their kids to ask questions to them and maybe even to us.  Age appropriate reality answers is what we give.

 

The staring has been tremendous this summer and will continue to grow.  It does not really bother me coming from kids because they are curious and trying to figure out their world, I only hope they have parents who will not shut down their curiosity by telling them only that "Staring is rude."

 

What questions do you have about Bridgie or Down syndrome?  How have you talked with your kids about Bridgie or Down syndrome?

 

I love to talk about both!

 

Discussion will only make their world a better, safer place.

 

 



Shopping Carts

 

 

A Necessary Evil

 

 

 

Your average person probably does not spend much time thinking about Shopping Carts.

 

Unless you are a mom, then you might choose your stores based on whether or not they have shopping carts or the type of carts they offer.

 

And if you are a mom you may have had the thrilling experience of your toddler not wanting to get in the seat.  You know how they go all rigid, start screaming, and won't bend their legs.

 

Chances are you have probably had this experience with car seats or baby swings at the park, too.

 

Or perhaps it's not when you try to put them in but when you try to take them out that they go berserk -- you know yelling, rigid, unable to help you get them out in any way.

 

Well, this is the case for little Miss Boo and I on a regular basis.

 

I am guilty of avoiding the store with her because of the exhausting nature of trying to get her in and out of the darn shopping cart.

 

The only difference here is that she is NOT having a tantrum when I try to put her in or take her out.

 

It's like her body has never done these things before--you know like being picked up and carried, put in and out of a car seat, putting her in a chair, grocery cart, baby swing.

 

Everyday things that kids just kinda you know learn.

 

So yesterday at Target and Old Navy we struggled once again until I decided I needed a system, because the way I am doing it is back breaking.

 

I usually lift her up, with the cart being above a comfortable level for my height, then have to lean over engaging my hamstrings and then try to get her to bend her legs into the holes in the seat.

 

There's the tricky part, at first I thought she was just being defiant or resisting being put in the cart but there is where I am wrong.

 

She either does not have mental memory or muscle memory as to what to do in this situation. At times she is extremely rigid and unbending other times she's all loosey goosey like a wet noodle.  And being picked up into this odd angle, she's yelling at me like "what the heck are you doing to me?'

 

As with everything Bridgie, if you turn it into a song, she gets it.

 

"I lift you to the sky, you stand up really tall, we place your legs into the holes, and now you're really small!!!" 

 

Kind of to the tune of farmer and the dell or is it farmer in the dell.  Whatever, it must be sung with great enthusiasm and a bright cheery face.  And it worked.

 

The step by step for me was way less trying on my back, shoulders, hamstrings, and way less stress inducing.

 

The break down:

 

1. Lift up under the arms, using legs for the lift

(really helps if sibling holds cart still)

2. Lock elbows at sides (kind of like when doing a bicep curl)  lift arms out over the lip of the cart while asking child to stand up tall on the seat.

3. Steady child with one hand while guiding opposite leg into hole. Reverse for other leg.

4. Give a great big hug and kiss and maybe a round of applause.

 

This may seem silly to some, but for me I need a process or else I just get frustrated, annoyed,  and exhausted.  And I don't want that for her.

 

So we shall see if the song with help her 'remember' how to help when getting into and out of the cart.

 

The above break down must be reversed when removing child from cart because lifting out is way worse than lifting in for me anyway.

 

Things to remember with this post.  I am not a physical therapist, doctor, or in any other way an expert.  This is my experience.

 

I want my girl to enjoy going to the store with me like her brother and sister do, but as it stands right now she is not free to roam about the country.  She still runs away, grabs things off of shelves, and does not listen to commands like "this way", "over here" very well.

 

One of my goals for Bridgie this fall is for her to learn to walk with me in public places.  When given freedom she takes it and no amount of vocal commands change her course.  Thus the physicality of taking her out and about without a stroller or cart.

 

While Erin and Eoin are in school you may see us at the library or Target or Wegman's walking around, singing, and learning.

 

Learning through repetition and song how to listen to direction in public.

 

And if you see me out struggling with a cart, chasing her down, or trying to redirect her through song.

 

Please stop and steady the cart, say hello to her (which stops her in her tracks every time), or darn it join in the singing of wheels on the bus and yes hand motions are required!!!!

 

 

Love you Boo and I will always sing for you!!!

 

 



Making History

 

 

Applause Worthy

 

 

 

 

If there is one thing our Boo is good at it is applause.

 

Heart felt, heart warming, sincere applause.

 

I came across this article this morning about 8 people with Down syndrome who have made history this year.

 

 

http://www.babble.com/babble-voices/living-and-loving-with-down-syndrome-eliana-tardio/8-people-with-down-syndrome-who-are-making-history/

 

 

We definitely applaud these individuals for their achievements.

 

And while on the topic of achievement, let's talk about one of Bridgie's surprise achievements.

 

Potty Training.

 

We were told several times by pediatricians at our old practice not to worry about trying to train her until she was older because the range for children with Ds to be potty trained is anywhere between 4 and 9.

 

And before I continue I want to be clear that there is a difference between day training and over nite training.

 

Erin and Eoin were not quick or hip to the idea of using the potty and neither were trained until late 4's.  However, was they made the decision there were no overnight accidents for either of them.

 

A little before her 3rd birthday, I noticed Bridgie in the bathroom with all of us trying to see our business.  So I decided to start sitting her on the little potty while we went.

 

I have not love for the little potty and none of my children have either, preferring to use the inserts for the big potty. 

 

Backtracking a bit here, last summer Bridgie's constipation because remarkably outstanding.  It was some of the worst pain I have seen any of the kids in.  We started a course of Miralax (see why we are not fans here: http://www.gutsense.org/gutsense/the-role-of-miralax-laxative-in-autism-dementia-alzheimer.html#.UfQckynXYbI.facebook) which kept her in a comfortable state of the opposite and made for some horrific diapers.

 

I did not like having her on the Miralax opting to try to find a natural way for her to have healthy bowels.  We made changes to her diet and added fruit-eze (http://fruiteze.com/) and a probiotic. 

 

Bridgie is a great eater of fruits and vegetables and beans, so I was having a hard time understanding the bind.

 

Low muscle tone in the digestive tract could be part of the culprit as well.  Since is was so painfully obvious when she needed to go and she would come to be held.  We started massaging her belly and back to help her move it through so to speak.  We would just hold her and sing and switch on and off as it was exhausting and upwards of 45 minutes per movement.

 

One day we were in the middle of one of these marathon sessions when I got tired or one of the other kids needed me and Jerry was at work, so I sat her on the potty with the insert, knowing she could not and would not climb down.  Exhausted, I sat myself on the kids step stool and pulled it up next to the john and hugged her, sang, and rubbed her back. 

 

She made a movement on the toilet that day and the applause, standing ovation in fact as Erin and Eoin wanted in on the excitement, was tremendous.  The pride on her face was enough for me to actually stick with putting her on the potty even when too busy.

 

We are poopy diaper free in this house for at least 9 months.  She will now tell me when she has to pee pee as well.

 

So at 3 1/2 or just shy of 3 Bridgie has made history in our house.

 

Youngest to be 'potty trained'!!

 

Again, overnight is going to be a different story.

 

I wanted to share this because her story is different.  Not in a better way not in a worse way, just different.

 

Her-story.

 

 

 

 

 

Oh and the youngest to stick her face in the water and blow bubbles too!

 



Peace of Mind

 

 

Certain things need finishing

 

 

 

"Learn to do good; seek justice, correct oppression; bring justice to the fatherless, plead the widow's cause".  Isaiah 1:17

 

 

I have started a series of calls to AAMC to retrieve my records from Bridgie's birth.

 

To talk to people in the know about how more than a dozen medical professionals at this hospital could 'miss' the face of Down syndrome.

 

For a certain peace of mind and for the next child born without a prenatal diagnosis.

 

Let it go you might say.

 

I can't.

 

I just want to hear their stance, to learn what their protocol is in a situation like this.

 

The only thing I can think of or the only justification I can find in my limited medical brain is that because she had no serious health issues at birth or in those first 3 days that they brushed her off as 'fine'.

 

The risk for serious issues could have been there and could be in the next child.

 

I do not WANT anything from this except information.  And peace of mind.

 

The peace of being heard in hopes of this not happening to someone else.  Someone else who may not have the strength in the moment to use their own voice.

 

 

While I can appreciate the safety of silence afforded me, I can't ignore the urge in my heart to seek answers and information.

 

I am fully aware I may never get that which I seek.

 

But try I must.

 

 

It's easy to do it for you.

 

 

 



Finding my voice

 

 

Safety in Silence

 

 

There is a certain sense of safety in the dark of a hospital room with your newborn daughter all swaddled tight in the crook of your arm.

 

Especially when that daughter was born with a wink and a gleam in her eye.

 

A daughter bright with beauty and gleefully mischievous even in those first living hours.

 

The bond between you unbreakable but also choking you with fear and questions.

 

In those early hours, early days, I seemed to have lost my voice.

 

I really only spoke to my best friend and I remember choking out

 

"It doesn't matter, It doesn't matter" to Tara.

 

I know Jerry and I spoke and that I spoke to the nurses about how I was doing but that is all really fuzzy.

 

I never really questioned anyone in the hospital except in those first few minutes to the recovery nurse.

 

 

"Is she okay, why does she have all that extra skin on the back of her neck?"

 

 

I remember that question and repeating it clear as a bell and hearing

 

"She's fine, she's beautiful".

 

In those early minutes, hours, and days there was a certain peace that had washed over me.  There was safety in the silence.

 

My most vivid memory of that silent stay was in the middle of the first nite nursing my girl and searching, reaching, mind reeling, knowing.

 

Knowing Down syndrome personally. 

 

I prayed that night and I don't remember what exactly but I know I prayed.

 

I got very anxious and nervous and fearful and started to sweat.

 

My mind racing my heart pumping I came to my Red sea place.

 

And in that silence I heard.

 

Go on.

 

Be not Afraid.

 

Many say happiness is a choice and to that I say then so is fear.

 

Fear is a choice.

 

And in that Silence I chose not to fear.

 

To go on.

 

For the rest of the silent stay, I just listened.  I just was.

 

 

Looking back at the silence of the hospital staff and the pediatricians.  I wonder how did that happen.  How did more than a dozen members of the medical profession not see it or choose not to say a word.  They handled my girl, they came into our private moment of the birth of our child and they were silent.

 

I've been angry about this, I have been confused and hurt, and felt that it needed fixing.

 

But lately, I've begun to wonder if God was keeping me Safe in the Silence.

 

Giving me time to find my voice and spread my wings.

 

Getting me ready to fly.

 

No I don't mean fly as in an angel.  I mean fly like a butterfly.

 

To emerge from the cocoon of uncertainty and doubt.

 

To let people in to see the beauty where many say there is none.

 

To use my voice for good and to silence that voice when it is meant for me to listen.

 

 

Through this blog I will also use my voice and hopefully be able to listen to yours.

Random Thoughts by Bridgie's Mommy

It's been awhile since I last blogged.


There are many reasons for this.  Some remarks here and there, moving, stress, questioning, and of course there is always depression to blame. But there is no need to point any fingers, ultimately I needed a break and honestly only two people asked me why I stopped blogging so no biggie.

 

In the beginning, I wanted to rethink the purpose of the blog and the why behind it.  And I think I am close to closure on those two fronts.

 

I blog for these three people.

 

 

When Bridgie was born I did not cry over spilled milk so to speak, I cried over Erin and Eoin's future.  I cried for the added joy and pains to their lives.

 

Early on, you know that first second I looked in her eyes, I knew Bridgie was going to take us for a ride.

 

 

And before I continue I want to make one thing abundantly clear. 

 

This child is not a burden.  She never has been and she never will be.

 

NOT A BURDEN

 

 

And in the same breath I will tell you that they can be hard.  Any honest parent can admit that parenting is hard.

 

For the better part of three years I have searched for words to describe parenting a child with Down syndrome.  And there is part of the focus of this blog.

 

Parenting a child with Down syndrome or better yet Parenting Bridgie

 

 

Every parent struggles, every child is different from the next, therefore, parenting a child and the siblings of said child is different.

Not different in a bad or better way just a different way.

 

Different, different, different.

 

 

Blah, blah, blah.

 

So why would I want to talk about parenting a child with Down syndrome and who would really care?

 

Part of this journey for our family will most likely include a time where Jerry and I are not here to care for and parent Bridgie (or E and E for that matter).  So a time will come where the primary care giver for Bridgie with be Erin, Eoin, or Both.  If we never talk about Bridgie's differences then they are going to have questions and a lot of them.

 

I have never been a happy go lucky person (insert your own theory diagnosis here) rather choosing to be realistic instead.  I don't sugar coat things or put on a happy face.  At the same time I try really hard not to be a bottom feeder living off the mire and the muck either.

 

So, there will be no pretending here.  There will be hard and happy.

 

I recently read a book called Carry On, Warrior by Glennon Doyle Melton.  In her story she talks about life being brutiful.  Brutal and Beautiful.....Brutiful.

 

I love this.  She says in this Brutiful life "We can do hard things".

 

For the Bryl family 5 life is Brutiful and we can do hard things.

 

Many people say Happiness is a choice.  I have to call BULLSHIT actually double BULL SHIT on that one. 

 

I have chosen happiness many times, but for me it is fleeting.  (insert you own theory/diagnosis here). 

 

I have found only one thing to be truly helpful in this arena and that is exercise.  The power of endorphins for me is tremendous.

 

Off tangent back on course.....Erin and Eoin will have questions and I want them to come here to find some answers.  I want them to know that mommy and daddy struggled, a lot.  Mommy and Daddy worked hard to make life brutiful for their family.  To find that it is okay to be unhappy and to recognize it but to feel the joy of happiness when it arrives.  To know that if something makes you unhappy to steer clear of it or if it is truly important in their lives to find strategies and ways to break down barriers, to compromise, to carry on.

 

Lastly (for this post),  GDo (as she calls herself) says 'do the next right thing'  forget the rest and move forward.

 

So the next right thing for this blog is to keep moving forward (swim bike mom's motto).  To keep talking, sharing, and striving for this brutiful life.

 

 

 

 

 http://momastery.com/blog/

 

 

http://www.swimbikemom.com/