The Lesson: Options

October and November have merged leading to a singular, yet powerful lesson. Andi Durkin, mother raising a toddler with Down syndrome was not comfortable with a dominant perspective on how to raise her son.

She opened herself up to different suggestions and approaches and is sharing what is working for her son on her blog: Down Syndrome: A day to day guide.

During the interview Andi stressed the importance of getting your doctors opinion, however, she also reminded us…

“Explore all your options.”

It is a powerful lesson that often get’s overlooked. There is NOTHING WRONG with seeking additional opinions. One man or one woman, regardless of certification, does not have all of the answers.

EXPLORE
QUESTION
EVALUATE
APPLY

Much love,
Marissa

Podcast 12-12-12 With Project Member Andi Durkin-Down syndrome

Play

Andi speaks openly about her journey mothering a toddler with Down syndrome. INTERESTING information for older mother’s interested in getting pregnant. We talk diet, nutrition, biomedicals, and more!

Audio clip: Adobe Flash Player (version 9 or above) is required to play this audio clip. Download the latest version here. You also need to have JavaScript enabled in your browser.

Download the audio

References Mentioned:

Down syndrome: A day to day guide

DownSyndromeOptions.org 

You: Having A Baby 

Older mom’s interested in getting pregnant 

Biomedical Basics

Much love,
Marissa

PS: Transcript coming soon!

PSS: See disclaimer

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

 

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

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!