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/