Uncomfortable Questions Surface

12-12-12 project member Andi started me on…

Assignment #3:

Read through email excerpts of a woman that was recently given the news her baby will be born with Down syndrome.

My baby girl was given the T21 diagnosis in utero one week ago.

I have read through these email excerpts several times. I even printed out the email to allow myself a chance to digest the content away from the computer.

I circled 50+ negative words used by this expectant mother in reference to her pregnancy.

The expectant mother is committed to moving forward with the pregnancy, but everyone in her support circle is unsupportive.

There is distance between her and her husband. Her husband seems to be shutting down at the thought of having a child with Down syndrome. She is starting to notice the resentment building up.

The geneticist has suggested terminating the baby for the sake of the other children in the family.

The geneticist went as far as to question this expectant mothers intelligence for wanting to see the pregnancy through.

This woman’s blood pressure is up, glucose is out of control, and she is currently in the hospital trying to get everything stabilized. She is at 28 weeks and has already had to see a pediatric cardiologist because they saw two holes in the baby’s heart.

Imagine being in the hospital at 28 weeks pregnant hearing terrible news about your unborn child and no one is there to comfort you!

Questions:

1.) How can we expect that this woman’s daughter will be welcomed into an environment that is loving and appreciative if EVERYONE in her circle is resentful. (including the docs!)

2.) Why do some physicians and specialist believe a baby with Down syndrome is so detrimental to a family?

3.) If having the child is dangerous on the mother physically and emotionally is termination the best solution?

If I am uncomfortable entertaining these questions, I can only imagine the depth of emotion a woman facing these uncomfortable questions goes through.

Much love,
Marissa

 

Livin’ On The Edge And Trying Not To Fall Off!

Imagine being trapped inside your house for two solid days!

Majority of your day is spent chillin in your bed because every move you make induces nausea, heavy head, disorientation, and down right overall sickness.

For the last two days, this has been my script playing out. This Thursday was vestibular rehabilitation therapy. During VRT, I did well and showed small signs of improvement! Whoop. However, the stimulus and physical activity left me feeling like a wet noodle.

I fell asleep last night at 9:00pm (those that know me know this is a miracle!) and didn’t wake up today until close to noon! YES, you read that right. I woke up once in the middle of the night to pee, and woke up every hour starting at 6am. I felt too exhausted to get out of bed. Fatigue is SO brutal. I assume it’s my body’s way to protect itself.

I should confess that yesterday I drank a 16oz Monster Energy Drink (shhh, don’t tell babe. He thinks that stuff is horrible for me!) hoping to feel some sort of energy. It didn’t even touch me.

I woke up today to find a note left for me from my future-in-laws! They had left to run a few errands.

Hand written note to me from in-laws

I knew that Babe was with his buddies watching football.

Good for them! It makes me happy that those I love are living their lives and enjoying what’s good and fun in the world.

I actually felt OK after waking up this afternoon. “Feeling OK” is what allows me to go for walks and venture to places like the grocery, shopping, etc.

I started pacing the house and began feeling stir crazy! I hopped into the shower hoping to distract myself, but that didn’t help. Put on my clothes, makeup, and grubbed on some cereal.

Have you ever felt yourself screaming on the inside? This trapped feeling started to overcome me. I just couldn’t take it anymore. Screw it! I was going to walk to Starbucks.

When a thought becomes fixated in my mind, you can trust that it’s going to happen.

I got bold and sent a text message to babe saying I was going to head to Starbucks. Whoop!

Text message to babe

I grabbed my pepper spray, phone, walking stick, and headed out the door. I noticed I was a bit more wobbly than usual on my walk, but I ignored it! Screw that. I was going to complete my mission.

As I was walking I felt that internal screaming dying down. I actually felt happy to be outside. Beyonce’s “Diva” was playing on loop in my head (Sorry Blake! I know you hate that song, but it’s my jam!)

I arrived at Starbucks and confidently ordered a skinny latte with a splash of sugar-free hazelnut!

I made it back home, sat at the dinning room table, and started sipping my luscious $3.55 drink! OUCH! I felt a pain toward the back of my foot. What the heck. I looked down at my cute shoe, removed it, and caught a glimpse at what was causing the pain.

Starbucks- Venturing out to grab a Skinny Latte

Since you know I am all about the life lesson’s let me share a few….

1.) Start embracing “feeling ok”! I am going to start appreciating “feeling ok,” because I am now VERY aware of how limited my world becomes when I feel terrible!

2.) When going for a lengthy walk choose common sense vs. cute! It’s ok to rock a cute outfit from the ankles up. Comfortable shoes are your friend!

Much love,
Marissa

I Was Prepared To Love My Baby If He/She Was “perfect”! WHAT?

This month’s 12-12-12 project is focused on Down Syndrome awareness. Project member Andi Durkin is the first project member to ask me to complete assignments.

Normally I jump into research mode, and start uncovering as much information trying to understand the medical condition.

Andi has asked me NOT to read her blog or research information, rather work through various assignments.

I think she is trying to get me to understand the emotional side of being a mother to a child with Down syndrome.

Having me get into the mindset of a woman that is planning for a “perfect” birth, and is greeted with a baby that has the “imperfection” of a genetic condition.

It’s worth it to check out assignment #1 ,

Onto Assignment #2…

Read and sit each day with three birth stories

“What the heck is a birth story?” Excuse my ignorance, but I didn’t realize that a birth story has a literal meaning. A birth story is recalling the birth of a baby.

I was given two stories 5 days ago, and I am STILL rattled.

Reading stories of women pouring their hearts out and being vulnerable has been uncomfortable. For MONTHS, they planned and prepared for what they envisioned would be the “perfect” child.

I always associated birth with physical pain and joy. Baby showers, family and friends, eagerly gathered and awaiting the birth, hopes and dreams of bonding with your baby.

I NEVER associated the word “birth” with depression, agony, hurt, shock, resentment, grief and EVEN mental breakdown!

I was SO rattled by the initial birth story that I shot Andi an email…

WOW! WOW! I am finding it difficult to move past this first birth story. I feel guilty for judging “insert mother’s name”.

One mother talked about how difficult it has been to cope having a baby with Down syndrome. If she had followed through with genetic testing and found out her child had Down syndrome she would have terminated the pregnancy.

The mother DIDN’T get the testing, because, in her case, there was a 1 in 250/300 % chance her child could have Down syndrome and those were the same percentages of risk of a miscarriage from having the genetic testing.

I IMMEDIATELY began to judge her. What’s WRONG WITH ME?

Is it because I now view the world through disabled eyes? I would not want those in my circle to give up on me for my newfound inabilities. How could you give-up on a baby with inabilities?

Maybe I don’t get it because I am not a mother and I can’t understand motherhood?

Maybe it’s because she used the words “perfect body” and acknowledged that her child was not “perfect!”

Look at me! I can’t even type the word “perfect” without putting it in quotes. Does perfection even exists in relation to human beings!

Maybe genetic testing SHOULD NOT be allowed?

Maybe we SHOULD continue with genetic testing and allow termination when genetic abnormalities are acknowledged?

Is testing and termination the answer vs. a mother not bonding or wanting her child based on a genetic abnormality she could have known about through testing?

I am all jacked up!

Morality and ethics could lead me down the road to anger and judgement. I don’t want to judge another woman for wanting what she envisions as the “perfect” child. BUT, why did I so quickly pull out my judgement card? Grief.

Much love,
Marissa

Officially a Legit Walker?

Hat, cotton shirt, pants, walking shoes, trekking poles, pepper spray, phone, and I head out the door to walk as many times a week as my health permits.

Increasing my walking distance and stamina post-vestibular disorder has been a LONG JOURNEY!

Here is a photo of my early vestibular(balance) days, when walking around the block felt IMPOSSIBLE….

Early vestibular days of me laying on couch next to my dog wearing sea-bands

I was in a funk and depression FOR YEARS after my vestibular dysfunction appeared. One day someone mentioned to me..

Marissa, you are going to be “dizzy” regardless if your inside your home or outside your home.

WHAT? Well heck! She was right. I initially dismissed her statement. Deep down I didn’t want to believe life beyond my four walls was forever changed.

She was right AND being logical! I was “dizzy” outside my home as well as inside.  There was no escape. SO, I have been pushing ever since to venture out more. Since this vestibular condition NEVER leaves me, it’s going to have to join me while I push
beyond the limits of what it permits.

I mentioned to my fiancé that I wanted to try walking sticks, and he purchased me a pair of trekking poles (THANKS BABE)…

Marissa's trekking poles

I snapped a photo of me on my first walk ALONE post-vestibular issues!…

First time walking alone post-vestibular using my walking sticks

I painted my walking poles purple for lupus awareness month….

Poles spray painted purple for lupus awareness month and POP Day

It started initially with walking down the block and eventually I reached 2.1 miles…

2.147 miles says my pedometer

All I want for Christmas is to walk AND complete a 5k walk for arthritis!

jingle-bell-runwalk-arthritis- 2012

 

I FINALLY hit 2.7 miles! (Please pray I get here again. I have yet to hit this milestone again!)…

2.75 miles says my pedometer

I was able to walk far enough (BY MYSELF) to purchase my own meals from el pollo loco AND subway…

El pollo loco receipt and Subway bag

And now I want to give a shout out to my cousin who sent me 3 AWESOME walking shirts (she is a racing, triathlon, diva!)…

Racing shirt my cousin sent me

Thanks girl! You are helping me look the part of a legit walker. :)

Much love,
Marissa

P.S   It’s ok if we fail or have setbacks let’s just promise each other to  keep continuing the take incremental steps in a forward direction! WE GOT THIS

Envisioning The Perfect Child, I Will Likely Not Conceive

This month’s 12-12-12 project member Andi Durkin, mother of a toddler living with Down Syndrome, has given me an assignment.

Assignment #1….

Write about your future children. Write down exactly what you want for your child. What they will be like.

* I have turned off the idea of ever having children. Living with this crazy vestibular disorder I am afraid I won’t be able to handle the daily physical rigors of motherhood. Being asked to entertain the idea of motherhood has my emotions all over the place.

HERE WE GO….

I have so many wants for you, it hurts. I hope that my selfish desires won’t interfere with your personal desires. Don’t allow my personal fears to stunt your growth.

With that said….

You are perfectly healthy.

You are elegant and graceful.

You have the heart of your great grandmother.

You are self aware and not self serving.

You think of others and see the finest in people.

You are respectful of yourself and others.

You have great sensibility.

You are beautiful on the inside and out. You have your father’s beautiful eyes.

You play the violin as graceful as Hilary Hahn.

You have mastered 3 languages.

You not only excel in sports but are a rhode scholar.

You are a world traveler.

You have strong business acumen which will create financial stability for you.

I want you to find happiness on the deepest level.

May you find a man that respects you and loves you more than he loves himself.

May you experience more joy than pain.

May you not be afraid of life, but learn to embrace it.

May you leave a legacy that will make future generations proud.

Much love,
Marissa

P.S. Mija, if you stumble upon this blog post, know that I love you NO MATER WHAT! I have rattled off a list of everything I secretly desired in my own life or believed would constitute the perfect life. Regardless of your personal achievements or possessions, my ultimate desire for you is to be the best version of yourself. I will love and support you and will ALWAYS have your back.

P.S.S. Emotionally spent!

The Lesson: Understanding

September 12-12-12 project forced me to re-examine my assumptions. I ASSUMED allergies were not as valid of a health concern as say MS or vestibular disorders.

ASSUMPTIONS CANNOT EXIST when they are overwhelmed by facts. So let’s break any assumptions we may have about the severity of allergies.

According to the Asthma and Allergy Foundation of America, here are a few facts.

  1.  Food allergies account for 30,000 visits to the emergency room each year.
  2.  Exposure to latex allergen alone is responsible for over 200 cases of anaphylaxis (severe allergic reactions) each year.
  3. Nearly 400 Americans die each year due to drug allergies from penicillin.
  4. More than 200 deaths occur each year due to food allergies.
  5. The annual cost of allergies is estimated to be nearly $14.5 billion.



Now that we have dispelled the myth that allergies are not a serious health concern let’s move onto the next step, understanding.

How many of you will openly admit you dismiss the sign hanging in your doctor’s office that reads…

“Be courteous of other patients and don’t use scented lotions or perfumes.”

12-12-12 project member Sarah Mills shares with us the important lesson on understanding…

Severe allergies are not as understood as much as they should be, partly because you just don’t hear about it. A lot of patients are tucked away, hidden away in a little bubble, basically because they have to be.

If someone says to you, “Can you alter your ways because it affects me?” do it. It makes such a difference.

Much love,
Marissa

p.s. Thank you Sarah for being open enough to help dispel incorrect assumptions myself or others that have come across this blog have held!

Podcast September 12-12-12 With Project Member Sarah Mills- Severe Alleriges

Play

The month of September was a journey toward understanding severe allergies.

Working alongside 12-12-12 project Sarah Mills, I realize we have been given an awesome gift.

Sarah is open and honest about the adjustments she is making in order to survive the restricting and volatile world of severe allergies.

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Download the audio

See the transcript

How You Can Help Sarah:

Standing order mandate
Donate via Paypal
Easyfundraising.org.uk

Much Love,
Marissa

Accessibility Friendly Website And Hero Of The Week!

I stumbled upon an accessibility hero this week, and his name is Eddie Yu.

Allow me to set the scene…

It’s midnight, and I couldn’t sleep. I began filtering through saved bookmarks trolling websites looking for career direction.

One of the bookmarks led me to Eddie’s website.

Before we get ANY DEEPER into the story, it makes sense to provide you with context.

For those that don’t know I suffer from a vestibular (balance) dysfunction which has left me with 24 hour disequilibrium and moments of vertigo.

These symptoms are NOT FRIENDLY for working in a standard 8-5 office environment. I realize I am going to have to find an EXTREMELY FLEXIBLE CAREER working from home, hence the reason for trolling work-from -home websites and blogs.

With those small details out of the way, let’s press on.

Landing on Eddie’s website IMMEDIATELY reminded me of my limitations.

I couldn’t  absorb ANY of the content! WHY? The background was moving. Remember that vestibular dysfunction I talked about earlier? The site was so visually oriented that it was provoking symptoms such as nausea, disorientation and mental confusion.

Eddie’s site before the adjustment (Motion Alert: heads up vestibular folks!)

NORMALLY when I’m greeted with heavy visual movement on websites I move on. Maybe because it was approaching 1:00am and I was tired and annoyed by the movement that I took direct action.

I jumped on twitter and began typing away…

Twitter messages to Eddie altering his that his content was not accessible to me because of my vestibular  disability

 

After I realized what I set into motion I became nervous. I started thinking…

“Who am I to ask someone to change their website?”

“Majority of people can view his site with no problem, Marissa, let it be!”

I even vented my frustrations to my vestibular support group and via direct message to a true accessibility expert.

But as fate would have it Eddie was prompt and kind in his response.

Eddie's twitter response to looking into the issue.

Eddie’s positive response made me feel guilty. INTERESTING, because if he dismissed or ignored me, I would have chalked it up as him being a jerk and moved on.

I was sound asleep when Eddie sent the following tweet…

Eddie's twiiter response stating the problem was addressed with a pause/play button

Rough night sleeping, woke up late, feeling yucky, BUT ALL THAT CHANGED when I saw the tweet that Eddie and his team had come up with a solution!

I didn’t even check out the solution! I yelled out to Babe telling him how great I thought Eddie was!

“BABE… he didn’t even have to respond!”

I EAGERLY headed to the site and the solution didn’t work.

“Babe… should I just drop it? It’s enough that he even responded.”

Babe encouraged me to respond.

I created a quick video for Eddie and team to show that I was not seeing the fix.

Eddie’s twitter response….

Eddie's twitter response alerting me of  his user-friendly changes.

If you NOW check out Eddie’s site you will see that he was ELIMINATED THE MOVEMENT  A-N-D created different background patterns for the user to choose from.

WHOOP! Victory. I can now choose the pattern that is the least visually bothersome to me, and NOW I can read the content.

SO… if you are interested in learning form a man with strong business and entrepreneurial acumen with a  great heart, please check out Eddie Yu’s website.

Connect with Eddie via Twitter. Don’t hesitate to shoot him a tweet and tell him how AWESOME he is! :)

Much love,
Marissa

P.S. Please note I am not an accessibility expert.  I am just a gal with a disability trying to make sure the web is accessible to those with vestibular disorders!