If Not Me, Then Who Part Two



Why Support Team Travis?

Travis was asked before he left for Iraq why he had to go and became known for his response, "If not me, then who". He always placed others before himself and helping those in need was something that came very easily for him. In keeping the spirit of his selfless nature alive the Travis Manion Foundation continues his mission.



Where does the money go?

"The Foundation's Mission is to assist our nation's veterans and the families of Fallen Heroes.  We will continue the service to community and country exemplified by these Fallen Heroes and veterans.  In the spirit of the Fallen, we will foster strength of mind and body to create a generation of future leaders."

Click here to see the programs supported by Team Travis



http://travismanion.com/the-mission.html







A huge thank you to the following friends and family for supporting Team Travis, I will be thinking of you on Sunday.

Sarah Forney

Tonya Tiffany

Angie Swindell

Barbara Bryl

Michelle Keller

Steph Bryl

Rose Lasek

Grandma Mary Howard

Jen Patrizio

Jackie Bryl

Sue Franklin

Rachel Densmore

Paul Surlis

Aunt Mary McCoy

It's not too late to donate.

Steps for making a donation:

1.  Go to http://teamtravis.com/
2. Find Marine Corps Marathon in the left hand tool bar and click "sponsor an athlete"
3. Type in Cynthia Bryl under search for a runner
4. Choose Cynthia Bryl and click sponsor
5. Make a donation

OR

Send a check to

PO Box 1485 Doylestown, PA 18901

On Sunday I will run to honor the memories of Travis Manion and Brendan Looney and all of our American Heroes.  It's not enough but it's something.

Brothers in Arms, Side-by-Side at Arlington

1st LT Travis Manion, USMC, sought to live a life of service, caring deeply about his family and friends, and hoping to inspire others through his actions. Today his spirit lives on through the Foundation that bares his name.

Travis Manion and Brendan Looney were roommates at the Naval Academy, close as brothers. One became a Marine and went to Iraq, the other a Navy Seal in Afghanistan. On Monday they were reunited, side-by-side in Arlington National cemetery, reports CBS News correspondent David Martin.

"That's what kinda gets me by is knowing that they're going to be together," said Looney's wife, Amy.

The grief is still raw for Amy, and for Looney's mother Maureen. It's been less than two weeks since his body came home from Afghanistan, where he was killed in a helicopter crash.

Travis Manion Foundation

"After we got the call and everything, actually Mrs. Manion was the first person I called because she was like Brendan's other mom," said Maureen.

"And she just said, 'Janet,' and I said, 'Maureen,' and she started crying and I said, 'Brendan,' and she said, 'yes,'" said Janet Manion, Travis' mother.

Travis Manion's parents have been living with their grief for more than three years. He was shot by a sniper in Iraq in 2007. Six months later, Brendan was still overcome talking about what Travis meant to him.

"I was lucky enough to room with Travis at the Naval Academy for two years," said Brendan in October 2007. "In a very short time he became another brother to me. He was a great friend. I'll never forget him and I miss him."

Travis had been laid to rest in the family cemetery near Philadelphia, but when Brendan died both families instantly knew what had to be done.

"That was the first thing out of my mouth, without even thinking," said Amy. "That they had to be together."

"I'll be at peace knowing that he's with his brother, together," said Janet. "I know that's where he wants to be."

On Friday Travis was moved to Arlington. Both families were there, the two mothers holding tight to each other. Monday they gathered again, to bury Brendan right next to Travis.

"They're together now," said Maureen. "We've got two angels looking out after us."

Travis' father, himself a former Marine, spoke their epitaph.

"First Lieutenant Travis Manion, USMC, Lieutenant Brendan Looney, United States Navy. Warriors for freedom, brothers forever," said Travis' father Tom.

Breasts

I have this neighbor, Jen. 

She lives right across the street. 

She loves my kids.

She helps us ALOT.

She is thoughtful and aware.

She is beautiful and an inspiration.

She is a survivor!

Read Jen's story about Breast Cancer and then go make an appointment for a mammogram. 

http://womensjournalmd.com/blog/2011/10/11/2nd-annual-breast-cancer-awareness-survivor-issue/

Hey Jen, can you watch the kids while I go get a mammogram ;0)!

DIY

Pottery Barn Growth Chart Ruler

Long ago I saw this in a Pottery Barn catalog and thought it was cute but way out of our league price wise.  Then I started blogging and came across this site and a knock off pottery barn ruler and so I had to try it.

http://517creations.blogspot.com/2011/04/ruler-growth-chart-pottery-barn-knock.html

Deke lovingly got me the piece of wood (6 x 6 x 1) that I needed at no cost to me.  So nice.  I had originally planned to cover our old growth chart with the ruler but quickly realized it would stick out too far and look awkward.

Here is the old growth chart on the wall.  Which is perfectly fun and adequate but with the way we hem and haw about moving I thought the ruler would be a great addition and something we could take with us, IF we ever move.

So, I stained the wood which took two coats and less than 30 minutes.  Then I measured and marked from 6 inches to 6 1/2 feet using a pencil (and yes I had to erase a couple of times and it did not mar the stain).  The ruler would be hung 6 inches from the floor.  

To make the numbers I printed them out using a font I liked at 200.  Cut them out  and then taped them to the board and traced them with a pencil, REALLY HARD to get a good indentation. 

Once all the pencil lines were to my liking, I used Sharpie Paint Pens that I got at A.C. Moore. They were 2 for $5 and I had a 50% off coupon.

I used the fine point to trace the numbers and the wider tip to fill in.  Not too difficult with a steady hand.

I let the paint dry for 45 minutes and then sprayed the whole board with Patricia Nimocks Clear Acrylic Sealer.  You must do this outside or you could use a polyurethane clear coat with a brush.  I applied two relatively heavy coats.  Again I bought this at A.C. Moore and I want to say it was $7 with a 40% off coupon.  This was pricey but I feel I will use it again.



Once the clear coat was on I let the board sit in the mud room for a few days.  Then my husband screwed it to a stud in the wall.  One at the top and one at the bottom.

We measured Erin and Eoin right away!  We tried Bridgie but she just buckled her legs!  Then I transferred the old measurements to the board.

Finished Product







Pumpkin Baked Oatmeal

I guess I can officially declare myself a Nutritarian.

So what is a Nutritarian?  Read Dr. Fuhrman's definition

http://www.drfuhrman.com/library/are-you-a-nutritarian.aspx

I don't generally like labels.  But I have been talking about food and Eat to Live so much that it is often the easiest way to start the conversation.

So, I am often in search of great recipes with high nutritional value.  One of the areas I am weakest is eating breakfast.  I love oatmeal but literally cannot, will not, don't have the time or patience to

1. make it every morning

2. sit down and eat it

So, early on I found a recipe on my favorite food blog, Mennonite Girls Can Cook

It is called Baked Oatmeal with Apple and Cinnamon

http://www.mennonitegirlscancook.ca/2011/06/baked-oatmeal-with-apple-and-cinnamon.html

I have been tweaking this recipe for some time and here is what I came up with today:

Pumpkin Baked Oatmeal

3 1/2 C of Oats

2 tsp baking powder

8 oz of 100% pure pumpkin in a can (half of a 16 oz can)

2 eggs

3 Tablespoons of Honey (trying to find the best natural sweetner for baking)

1 Cup of Vanilla Unsweetened Almond Milk (Blue Diamond brand makes this)

2 Tablespoons of Pumpkin Pie Spice ( you can just use cinnamon and nutmeg)

4 Tablespoons of ground Flax seed

Stir and spread in medium size casserole dish

Bake at 350 for 30 minutes

Yummy for breakfast or afternoon snack with coffee!

You know following Eat to Live is not easy and was in fact dreadful in the beginning, but it is so worth it.

What maybe makes it easier for me is watching Bridgie scarf up all the foods I prepare for her.  It makes me so sad that I did not get to Erin and Eoin  sooner.  Erin already eats very healthy foods, adamant that she have the following in her lunch box every day:

1 peanut butter and jelly sandwich cut into a butterfly

4 carrots

1 celery stalk cut in half and into six pieces

red seedless grapes

and a juice box

I even keep a little baggie in there with a note and some Hershey kisses, but she never eats them.

Eoin is my challenge and I love him so, so I love the challenge.  He literally only eats "cakes with syrups", frozen pancakes, sometimes three times a day.  Jerry jests that if it were not for candy corn Eoin would not eat any vegetables.  Funny, but not because it is true.  He will eat an occasional apple and as far as fresh foods that's it.  We're working and we will keep working.  If I add mini mnm's or mini chocolate chips to muffins sometimes he will eat them.  For this recipe I may drizzle some melted chocolate on top and he might try it. 

Bridgie is a good eater.  Eating whatever we put in front of her.  In the early days of her life I came across information on the Metabolism of people with Down Syndrome.  Basically, people with Down Syndrome are prone to Thyroid problems.  And as of Bridgie's 18 month check up her Thyroid test came back high.  No action is required at this time and she will be retested in 6 months.  Thyroids can be controlled to an adequate extent, metabolism not so much.  Therefore, the desire to extend Bridgie's palate is what jump started me to make changes and what keeps me motivated.  Not to mention the girl loves her beans and greens!!!!  Read on for more information about metabolism.

The Effects of Metabolism

Research suggests that children with Down syndrome have a lower basal metabolic rate (BMR) than their same-aged peers. BMR is the rate a person burns calories for fuel when completely at rest -- or sleeping. As a result, a child with Down syndrome uses fewer calories while they are asleep and also throughout the day. In addition, adults with Down syndrome (ages 18-20) have finished growing and require fewer calories than they did as a child. If eating or exercise habits do not change to compensate for this decrease in energy requirements, the energy equation quickly becomes unequal with calories in outweighing calories out.

http://www.kennedykrieger.org/patient-care/outpatient-programs/weight_management_adults_down_syndrome

Naturally, Bridgie will make her own decisions and choices regarding food and exercise but if I can continue to expose her to healthy eating while she is under my thumb I will.  Consequently, Bridgie does not really enjoy sweets.  She also has a bit of a dairy intolerance so we have replaced cow's milk for almond milk.  Even Goldfish (cheddar) seem to bother her.

I hope you will continue your own journey and Eat to Live.

100 faces

My friend Megan came last Tuesday.

To take pictures of Bridgie.

Just Because.

But she turned it into something great.

A little piece of awareness about Down Syndrome.

Just a little bug in the ear of all her blog followers.

What she showed was the beauty of Down Syndrome.

And here she is.

http://proofing.meganevansphotography.com/bridgie/slideshow

And the link to Megan's blog.

http://www.meganevansphotography.com/

Be Kind.  Leave her some comments!!!!



Cruisin'

And we are cruisin'!

Almost ready to tackle going around the corner of the train table.

There's no stopping sister now.  It's on.

We're going to have to get Eoin a helmet.



So walking would appear to be on the horizon.  But we have learned from Bridgie that she can and will do things when she is good and ready.  No amount of 'working with her' or trying to strengthen her legs is going to push the agenda forward.  Remember in the last post...'she's going to do whatever she damn well pleases'...well this applies here as well.

I thought I would post a chart from NDSS that I have found helpful regarding Bridgie's developmental timeline.  This is just a guide and as parents we all know children develop at their own rate, well this is no different for children with Down Syndrome.

I have heard the term 'disorganization' when referring to the mental processes of a person with Down Syndrome.  Though Bridgie's upper body and lower body are equally strong and quite capable when working independently of one another, it would seem her brain is not ready or 'organized' enough yet to send the messages to two different areas which would allow them to work together.  For example, Bridgie is quite capable of pulling herself up to stand.  However, it is either the arms OR the legs doing the work not both.  So, the conundrum occurs when she wants to get down.  She will usually just let go and plop on her butt as she is not able to coordinate her knees to bend or kneel before sitting.  Quite fascinating to watch and now quite celebratory as she has started stepping with her feet.

Not a sermon, just a thought.

http://www.ndss.org/images/stories/NDSSresources/developmental_milestones.pdf

Know me before you judge me

Here is a wonderful link written by a young lady with Down Syndrome.

Melissa Riggio

http://kids.nationalgeographic.com/kids/stories/peopleplaces/downsyndrome/

The Birth of a Baby



"Birth is not only about making babies. It's about making mothers~ strong, competent, capable mothers who trust themselves and believe in their inner strength"

Author: Barbara Katz Rothman

January 21, 2010.  Bridgie's Birth Day.  A day that will forever be etched in my heart.

I tried to will the labor pains away for almost 36 hours.  It was 29 days early for goodness sake.  I finally relented to the pressure and drove myself to AAMC "just to get checked".  I had a scheduled C-section for February 19th.  Jerry was on his way to meet me and Aunt Tara lovingly stayed behind with Erin, Eoin, Nora, and 3 month old Pauly.  To this day Erin asks when I will have another baby so that Aunt Tara can spend the nite!

After several hours at the hospital it was determined that I was indeed in labor and they would admit me and the baby would be born via c-section in the next few hours.  Prepped and ready we began what we thought would be our final c-section experience.

Within minutes, she was out!  We knew she was a girl but had not told anyone else.  We had the ultrasound tech put the sex of the baby in an envelope "just in case" we wanted to know.  After about 3 weeks we wanted to know.  The paper inside said "Sarah it is!"  We had shared Erin's desire to name her new baby sister Sarah.

Well, I had other plans.  She was to be Bridgid "Bridgie" Kelly Bryl after my Dad's God Mother and Aunt Bridgie Kelly. 

Born 6 pounds, 1 ounce, 18 inches at 8:20 pm.

Jerry went with her to be weighed and she was screaming and I remember asking more than once "Is she okay, Is she okay?"  There was not much talking going on.  Jerry said "She's fine".
She was wrapped and brought for me to see her little face and I knew instantly that something was different.  I was not panicked or scared, my wheels just started turning at a mind blowing speed.
Though I had no diagnosis or doctoral degree,  I knew Down Syndrome when I saw her.
More than anything I knew she looked different than Erin and Eoin had in that moment.

Once stitched, I was sent to recovery where I could really see my girl.  I was desperate to see every inch of her.  The recovery nurse was super bubbly and working quickly so that I could hold my baby.  I asked, "why does her neck look like that, is there something wrong with her neck"?  You see she had at least 3 inches of extra skin at the back of her neck, I think they call it a nuchal fold? Very quickly the nurse answered "nothing is wrong with her she is perfect", way too bubbily.  Then as desperate as I was to see every inch of my baby, the nurse was doubly desperate for me to nurse Bridgie.  Almost smashing Bridgie's face to my breast.  "It's so important for her to learn to latch".  Um, yeah, but not if she can't breathe!

The nurse left us alone.  I looked at Jerry and said something like, "Is everything okay with her?"  And he said "yes".  And that was the last we really talked about anything being wrong with her for the next 12 hours.

Silently, we were both desperate for the pediatrician to come in the morning.

Early in the am, a Dr. from our pediatric office came in to examine Bridgie.  We asked about her neck and commented that she appeared different than our other two newborns.
He did ask if there had been any "genetic issues" with the pregnancy.  Then declared her perfect.
Man, we were so annoyed.  About 40 minutes after sitting there each reeling with our own thoughts.  Jerry went to find the pediatrician to ask some more questions.  The Dr. assured Jerry that we were crazy and Bridgie was fine.

In my post operation morphine haze, it did not dawn on me to call our regular pediatrician.  Things would have gone oh so differently.

For the next 24 hours, 4 different nurses were in and out to care for me and Bridgie.  No one said anything.  Those nurses were taking my Bridgie stripping her down, bathing her and I know they saw it and I know they talked about her and us and did we know.  No one said anything.
I called my oldest friend in the world and I said "We think she has Down Syndrome".  "She does not!" "You are just being like me with thinking my kids head is too big".  "No, really here's why".  List of all the differences.  Being my oldest, dearest, and insanest friend she spent the whole day googling Down Syndrome for me.

Family and Friends came and we celebrated Bridgie.  For she was this wonderfully spunky little peanut with the sideways glance.  I swear her first focused look at me was to give me that cocked headed glance out of the side of her eye as if to say "so you are my mom, hmmm, you'll do".
Jerry had shared with Tara our concerns and then Tim and Deke took over telling my parents and other family members. 

I only cried twice in the hospital.  Once after being on the phone with Deke and him telling me that Tim had called our mom and told her she had to come to the hospital and that he would come and get her if she did not want to drive at night.   The other was when Tara came and held Bridgie and we talked about it and I kept saying "it does not matter, it does not matter what it is".

Later that second nite after my parents had come and the Surlis clan had come, Tim came back.  Late.  He came in and I was about to ask what he was doing back when I saw his bag.  And he said he was spending the nite since I had sent Jerry home to be with Erin and Eoin.  I am pretty sure Bridgie slept for a solid 6 hours with him there.

The signs were a plenty and many of us knew.

NOT ONE MEDICAL PROFESSIONAL SAID A WORD.

The silence was deafening.

36 hours after birth a nurse practitioner came from the office.  She said she did not think so but mother to mother she would order the test.  20 minutes later she came back and said it was Saturday so the testing could not be done.  No one else from the practice came and we were released and sent home with a slip to come back Monday morning for testing.

Testing was done at the hospital and they had to drag some lady from the basement to draw a newborn's blood.  Poor Erin was in the room with Bridgie and I while Jerry parked the van.  More than 5 attempts were made to draw blood from her little veins.  Though she did not cry.  Nor did she cry when they did the many heel pricks and shots in the hospital.  I feared she could not feel pain.

Finally, we were on our way to wait the many days for the results. 

 I took her to see Dr. Nguyen, our regular doctor.  With much certainty and confidence he said "It's highly probable".

And we waited.

Google never saw so much activity from our house as it did in those days.  I learned so much about Down Syndrome in those days.  For some reason I was hopeful for Mosaic Down Syndrome.  As if that would change anything.

Diagnosis Day.  Jerry, Bridgie, and I were escorted into the examination room at the end of the hall with the big desk and the old leather chairs.  Dr. Nguyen shook our hands and let Bridgie grab his pinky.  He sat down, looked us both in the eye and then with a tear in his eye said  "Bridgid's results came back positive for Trisomy 21, or Down Syndrome".  Further explanation was given, he had scheduled an appointment for us with Dr. Rosenbaum a geneticist at Children's hospital.  She would need an ultrasound of her heart, though there are no signs of heart issues at this point.

We thanked him and we left.  There were no tears and no words.
We kissed Erin and Eoin and went back to the work of being parents.
Somehow we ended up in Erin's room later and I started crying.
"How can something be so wrong with someone so perfect?"

Since then we have learned that Bridgie's heart is sound, that she really is not different that Erin and Eoin were, and that she is going to do whatever she damn well pleases.

Our great Dr., Dr. Nguyen has left the practice. Surprise.
Erin has had more than 6 different Doctor's since her birth 6 years ago.

We are blessed.  Blessed with three healthy children, blessed with accepting family and friends, blessed to have had Dr. Nguyen for as long as we did.

Jerry and I look back at the events surrounding Bridgie's birth and it is almost laughable how ignored we were.  Almost.  This story will go to Dr. Graw at some point.
There is nothing for us to gain by relaying our story, but perhaps everything to gain for the next family blessed with a baby with Trisomy 21 who does not know ahead of time.

We are blessed that no one came in and said that we had to send Bridgie to an institution. Or told us she would never learn. Or told us she had a shortened life expectancy.
We will gladly take ignorance over that.

And we are still unsure of a 4th baby Bryl. While pregnant with Bridgie I was certain she would be our last.

Now, nothing is certain!



Link to Bridgie's smilebox

http://smilebox.com/playEmail/4d5451354d444d314e7a64384d7a4d774e7a59774e6a4d3d0d0a&sb=1

Amazing

I just fell in love with this clip.  It is so cute.

Take a minute it will make your heart smile.

http://www.youtube.com/watch?v=-cA3t1HW1Ow&feature=related

Capture Life

Our wonderful friend Megan* came over yesterday to take pictures of Bridgie. 

She just wanted to.

Turned into a great conversation about Down Syndrome.

What it means for Bridgie and what it means for our family.

Was a great photo session and friend session for me.

I am so thankful for Megan and all the other friends who love our girl.

It gives me hope.

Hope for Bridgie's future.

Hope for a world of acceptance.

Our family will have tough times and rocky patches.

It is the Megan's in our life that will make them go smoother.

Thank you Megan, can't wait to see the pictures.

Capture Life.

(Megan wears a cool necklace with this saying and an old tyme camera charm.  Perfect.  That's what she does.)

* Any of the awesome pictures you have seen in our house have been taken by Megan.

Down with the Syndrome. Are you?

What do you know about Down Syndrome?

Down syndrome is a genetic condition that causes delays in physical and intellectual development. It occurs in one in every 691 live births. Individuals with Down syndrome have 47 chromosomes instead of the usual 46. It is the most frequently occurring chromosomal disorder. Down syndrome is not related to race, nationality, religion or socioeconomic status. The most important fact to know about individuals with Down syndrome is that they are more like others than they are different.

Taken from the National Association for Down Syndrome

http://www.nads.org/pages_new/facts.html

More alike than they are different.

Do Better

Go confidently in the direction of your dreams!

Live the life you've imagined.

Henry David Thoreau

I have a new sticky note on my bathroom mirror. 

It simply says Do Better.



I vow to do better everyday.  Starting with your pig tails, Bridgie!

I will work on accepting all people as they are.  I will strive to embrace all God's children as gifts.

“Accept the children the way we accept trees—with gratitude, because they are a blessing—but do not have expectations or desires. You don’t expect trees to change, you love them as they are."

Isabel Allende

 

October

October is Down Syndrome Awareness Month.

I vow to post something about Down Syndrome each day with the culmination being the reveal of Bridgies' Brigade

Hi! 

I am Bridgie Kelly Bryl.

Toddler. 

 I am one of God's children just like you. 

Human. 

I am not Downsy.

I am not retarded.

I am Bridgie.