Spread the Word, End the Word

It is no secret that I love my little lady to the moon and back.

 She makes the world a little brighter, a little better, a little simpler whenever she smiles.

She makes  me laugh, she makes me think, she keeps me young and she ages me prematurely.



Her clinical diagnosis includes "mental retardation" but this girl is not a "retard".  She is smart and funny and full of life and joy.

And when you use the r-word to describe anything you don't like or when you think something is stupid or ridiculous, you are making fun of my little girl. 

When you use the word(s) "retard(ed)" you are being disrespectful to her journey in life; mocking her fight to make her life a daring adventure.

My little lady works harder, loves easier, and smiles brighter than anyone else I know.  She deserves respect.

So stop using the r-word.

TODAY.

RIGHT NOW.

Take the pledge to end the use of the r-word and spread the word that using the r-word is hurtful to people with intellectual disabilities.

Forward.

Since my last post, I have been overwhelmed with all of your love and support.  I feel so blessed to associate with so many selfless, thoughtful friends and family that rally around us whenever we need it.  I am humbled and inspired by your examples of service and generosity.  From the bottom of my heart, Thank You. 

To me, the likely possibility of Miss B having leukemia, was like getting hit in the head with the Life-Is-Hard stick.  And it hurt!  Bad!

But as I've had the past week to move forward, I have come to the conclusion that Miss B either has leukemia, or she does  not.  Only God knows what is in store for her.

And while I will pray constantly that Miss B will be healthy; I am determined that the fear of future possibilities will not paralyze me in the present.  I will push forward with faith, trusting God that all will turn out for the best.

As Helen Keller said, "Life is either a daring adventure, or it is nothing." In our house, life being "nothing" is not an option.  I refuse to allow us to dwell and fixate on the storm clouds that could be brewing, instead of enjoying the sunshine of the moment.

Our lives will be a daring adventure.

Leukemia or not.

Medical Adventures with Miss Banana: Leukemia?

I have received two phone calls in my life that are so deeply impressed in my brain that I will never forget them.  The first came when we received the news that Miss B might have Down syndrome. 

The second came on Monday.

Last week, I took Miss Banana into the new Dr. Kids--a lovely, open woman who I think is a good fit for us--to do the physical exam required by Miss B's new preschool.  Because of insurance rules, Dr. Kids decided to do Miss B's 3-year CBC (complete blood count) check that day.

Other than feeling guilty about holding Miss B down while strangers came and poked her and took her blood, I didn't think much about it.

And then Dr. Kids called Monday afternoon.

Monday was a lovely day here in the Midwest...60+ degrees, sunny, light breeze...absolutely pleasant.  I needed that.

The kids and I had been playing outside, enjoying the fabulous weather; I ran in to check the time and saw that I had a message.

"Carrie--we got Miss B's CBC results back, and I showed them to the hematologist.  Will you call me when you get this?"

As a parent of a child with Down syndrome, I knew what this type of phone call could mean.  And it's not good.

I braced myself and called her back.

She chatted pleasantly for a bit (Why do doctors DO that??! We both know we wouldn't be chatting under normal circumstances;  just rip off the band-aid and get it over with!), then came the real reason for the call.

Dr. Kids: Do you know why we routinely check the CBC of kids with Down syndrome?
Me: Yes.  Leukemia.
Dr. Kids: I got Miss B's CBC back, and her lymphocyte numbers are a little wonky. (Yes, she did use the word "wonky".  That's why she gets paid the big bucks.)  I showed the results to the hematologist who said there is no reason to worry now (!!!!!), but we need to keep a closer eye on it and we will check it again in 6 months.

I then asked a few questions, she gave a few answers and ended with:  You don't need to worry; I'm not staying awake at night worrying about Miss B.  I thanked her politely, ended the conversation.
And then...

Emotional panic!!

That phone call might as well have been a python squeezing the air out of me; suffocating me with the weight of horrible possibilities.

Breathe.

Breathe.

OF COURSE I'm going to worry about this!!  How could I not?!?  I already  worried about Miss B getting the L-word; the idea kept me awake at night even when her CBCs came back fine.

And now?  I have six months to prepare myself for my baby having cancer. 

Six months of wondering if my little love's cells are killing her from the inside out.

I hope and pray that it is nothing.  Just a blip on Miss B's long list of medical adventures.

PLEASE! Let it be nothing!

Breathe.

Just breathe.

The Third Year.

Three years ago yesterday, I got a phone call that would change our lives forever.  Three years ago yesterday, we got the results back from my quad screen test that indicated our little lady had Down syndrome.  A few weeks later, amniocentesis results in hand, the quad screen test results were confirmed.

Since then, October has become a "reflection" month for me.  A time to look back and evaluate how our lives have changed since that phone call.  A time of introspection.

On the day we found out, I felt devastated...and that word doesn't even begin to describe it.

A year later, I felt like I was on the offense--I joined several different Down syndrome advocacy groups and felt the fire to rid the world of the injustice toward people with Down syndrome.  When people would make comments about Miss B or about Down syndrome, I immediately became a mother bear, protecting my little one.

By year two, I was exhausted of being in constant "Down syndrome" mode.  And so I stepped back, and simply enjoyed my daughter and the blessing that she is...We didn't do all of the therapy-homework we were supposed to do.  I didn't read every news article about Down syndrome that came out.  I didn't talk about Down syndrome constantly.  We all just went about our daily lives.

And now, at year three--I am trying to find the balance of the two--being mother bear for people with Down syndrome when necessary, but living life just like any other family would.  As I've tried to find that balance--to walk the line of "same as everybody else, just different than most"--I have struggled.  How do I make a positive change in the world for people with Down syndrome without it consuming my life? 

The push to make the world a better place for my little Miss B has driven me to start a Down syndrome group here in The Village and surrounding towns.  As the President of this new group, I feel enthusiastic and optimistic that we can make a difference.  And I'm excited that, in our little corner of the world, I am promoting inclusion and acceptance of my little lady.  However, despite my enthusiasm, I worry about my life becoming engulfed by all things Down syndrome.  While I want Miss B to have every opportunity to have the good life; I think that part of having "the good life" means that we shouldn't always live in "special needs land" and that we need to be a family first--a regular ol' family--and a "family touched by Down syndrome" second.

At the same time, I have guilt that I haven't done enough for Miss B.  Like the other day when a friend used the R-word and I just let it go without saying anything...I felt like I was letting Miss B down.  Or when I read about all of the different therapies and reading programs and equipment and toys and foods and vitamins and experiences that are recommended for people with Down syndrome--and I know that we are only doing a small fraction of what we could be doing--I lay awake at night worrying that we are failing her.

And so three years later, I have come to the conclusion that there will always be struggles in life--things that make you worry and times when you have to push forward or pull back--and that is okay.  And I've realized that I feel so blessed to have these struggles.  I feel infinitely grateful for the growth and change and learning that takes place as we find our footing on this path in life.  I feel blessed to wake up each morning to my thoughtful husband and three beautiful children.  I feel grateful for the change that Down syndrome has brought into our lives.

And while we don't have it all figured out yet...there is no hurry, we will get there someday.

While our life is not perfect...it is good.

Genetics Lesson.

In honor of Down Syndrome Awareness Month, I thought I'd share a little genetics lesson.

From the National Down Syndrome Society:

In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Normally, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent.

Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.  

(Nondisjunction is what happened in Miss Banana.  I'd also like to emphasize the point that Miss Banana's extra genetic material comes from either Dr. C or myself...it's not an alien chromosome that came out of nowhere.  Miss B simply got an additional copy of either Dr. C or I's genetic makeup, not a separate "Down syndrome chromosome".  It is the fact that she has that extra genetic material that causes her to have Down syndrome. 

As an example...it's like she got two doses of my stubbornness and one dose of Dr. C's stubbornness...NOT one dose of my stubbornness, one dose of Dr. C's stubbornness and one dose of Down syndrome stubbornness.  Hope that makes sense! 

P.S. We don't know if it was me or Dr. C that gave her the extra chromosome.  And it doesn't matter.)

The two other types of Down syndrome are called mosaicism and translocation. Mosaicism occurs when nondisjunction of chromosome 21 takes place in one-but not all-of the initial cell divisions after fertilization. When this occurs, there is a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47. Those cells with 47 chromosomes contain an extra chromosome 21. Mosaicism accounts for about 1% of all cases of Down syndrome. Research has indicated that individuals with mosaic Down syndrome may have fewer characteristics of Down syndrome than those with other types of Down syndrome. However, broad generalizations are not possible due to the wide range of abilities people with Down syndrome possess.

Translocation accounts for about 4% of all cases of Down syndrome. In translocation, part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an extra part of chromosome 21 causes the characteristics of Down syndrome.

And now we come to the end of our little genetics lesson. 
 
Feel free to ask questions if you have any!

Adventures in Educationland: Miss B's Evaluation and First Day of Preschool

Welcome to a new series here on Life As We Know It.  Now that Miss B is getting older, her education is moving to a more formal setting.  Because I am absolutely positive we will have Adventures in Educationland with her, this will be a continuing series involving our experiences.  And, because sometimes T-Man and Fearless have crazy education stories as well, we will not limit the stories to just Miss B.  Enjoy!

When we first told people that we were moving to The Village here in our little corner of The South, the majority of people expressed their concern over my children's educational opportunities.  And while some of those fears have been substantiated, I am always pleasantly surprised when they are not. 

Miss B's new preschool is one of those pleasant surprises. 

I had some misgivings about sending Miss B to preschool because she is not quite two and a half...but I felt that the Special Instructor (a lady that I love to pieces and would adopt into my own family) just wasn't as effective as a more structured educational program would be.  After having visited her Preschool and talking with the teachers and the director..I am confidant that I made the right decision.
Her school is located on the University campus, and is run by people with Master's or PhD's in special education or a related field.  University students studying pertinent subjects (educational psychology, special education, early childhood education, etc) spend a semester helping in the classrooms.  The class sizes are small (only 6 kids in Miss B's class), the classrooms are well supplied, and it's free.

I swear it's like someone read my preschool-wish-list, waved their magic wand, and *poof* Miss B gets everything she needs.  The founder of The Center has surely earned his spot in heaven.

Last week, Miss B went in for her first Educational Evaluation.  And it was frustrating and satisfying at the same time.  Knowing that this was the first of many pieces of paper that would be placed in her file, the pressure was on.  I was a bit panicked during the test because there were somethings that I knew she could do, that she just wasn't interested in that day. 

Come on Miss B, show them you can kick the ball! 
I know you can kick the ball. 
No, don't run down the hallway...Come out of the bathroom--let go of the toilet paper! 
The ball, remember the ball? 

Zero points for that one.

But then there were also times when she shined and let her personality show.  Like when the speech therapist placed a few toys in front of her and asked her to put the toy dog on top of the yellow paper.  Miss B was more interested in playing with the baby doll...until  the lady asked the 3rd time...and Miss B gave her a dirty look, picked up the dog, slammed it down on the yellow paper, and then went back to the baby.  There, I did it.  Will you leave me alone now?!

In the end, I shouldn't have worried at all...because my girl rocked that test.  As in: only-significantly-delayed-in-one-area.  As in: average-or-higher-than-average in all other areas.

Have I ever mentioned that my daughter is a Rockstar? 

Just sayin'.

And it was the simple fact that she has an extra chromosome in every cell of her body that got her into Preschool.  If they went just by the test results, she'd be too "high functioning" to qualify. 

Thank you, little extra chromosome!!

Her first day was yesterday, and she did fabulously.  To quote her teacher, Ms. E, "Miss Banana had a GREAT first day!!  She is going to LOVE this!!"

And now comes the moment we've all been waiting for--pictures of Miss B on her first day of school yesterday.

(Please note that when we went shopping for her 1st Day of School outfit, Miss B picked this dress out herself and wouldn't let go.  The checkout lady wasn't even allowed to put it in the bag--just scan and back in Miss B's arms.  She is totally going to be a fashionista.)

Umm, Mommy?  I'm not sure about this backpack thing.



Whoops!  Down I go!



Medical Adventures with Miss Banana: Whammo! She has Pneumonia.

Lately, we've had very few installments of "Medical Adventures with Miss Banana" so I guess I should have known that it was time.

Medical adventures with her are tricky because you just never know when something little will explode into life-threatening illness.  Last week, Miss B was a bit wheezy, but was still acting like her typical toddler self.  We even took her to the beach this past weekend and to the pool yesterday morning.

But then...WHAMMO! I laid her down for her nap after lunch and she slept until 5PM, when I got her up for dinner.  She didn't want to eat at all and her wheezing was worse and she felt warm...so I gave her some Motrin and a breathing treatment, which didn't help at all.  About 45minutes of cuddling her later, I took her temperature and it was 103.3 degrees.  (Where did THAT come from??)

I took her to the ER--and her temp had jumped to 104.5.  A couple of x-rays and a dose of Tylenol later, her temp jumped to a whopping 104.9 and she had confirmed pneumonia.

The scariest though, was the hauntingly blank, lethargic stare on her usually cheerful, bright face.

I hate when my babies are sick--especially Miss B...because with every sickness, especially the sudden onset ones like this, my mind immediately jumps to panic about the possibility of the L-word or heart failure or lungs collapsing.  I know that might sound extreme, but in "Medical Adventures with Miss Banana" land, they are frighteningly likely and real possibilities.

Thank goodness her blood count came back with good results.

After a night full of strong IV antibiotics, plus oral antibiotics, plus breathing treatments, plus continuous Tylenol and Motrin, I am happy to report my girl is doing better--she's currently sleeping, fever-free, in her hospital bed.

Here's hoping this is just a quick blip on her Medical Adventures radar.

Compartmentalized.

When I was in college, training to be a social worker, I remember a professor telling us that you had to learn to mentally compartmentalize the emotional stress that comes with the job.  She suggested having a specific routine every night after work to help you mentally "put away" your work (that was pretty heavy emotionally) so you would be yourself for the rest of your day.

It was (and is) wise counsel from an experienced professional who has skillfully helped many people through some very very difficult situations.  It helped me--the greenie social worker--to soften some of the emotional turmoil that came with dealing with children who had gone through horrific experiences.  It was (and is) a useful skill.

Except when everything comes back out.

Let me back up a bit and explain.

Dr. C and I have had the unusual habit of getting a degree and moving across the country every time we've added a child to our family.  With T-Man, we moved from Utah to Missouri when I was 38 weeks pregnant.  With Fearless, we moved from Missouri to Nebraska when he was 3 weeks old.  With Miss B, we moved from Nebraska to The South when she was about 4 months old--3 weeks after major open heart surgery.

With each move, I compartmentalized the stress that came with place.  For example: In Utah--I was working 20 hours a week; taking 22 credits; doing an internship 20 hours a week and was pregnant.  Locked that away. In Missouri--being a first time mom, Dr. C in grad school, pregnancy...etc.  Close that one up.  The feeling were put into a little mental box and closed up until time and distance shrunk them to nothingness.  And the compartmentalizing worked out okay because now I remember that there was stress associated with those times...but all I feel when I look back is happiness and fond memories. 

But the last year in Nebraska was the most stressful time in my life ever.  So when we moved--when we left my beloved Midwest and headed to a state that I'd never even stepped foot into before--I compartmentalized the unknowns in Miss B's pregnancy, the long hours alone with two young boys and a complicated pregnancy while Dr. C finished his PhD, the stress and worry and fear that came with open heart surgery, the emotional turmoil that Miss B's diagnosis threw me into.  I guess I thought I could just lock up all those feelings, move across the country, and over time and distance they would be gone.

I was wrong.

A few days ago, for the first time since Miss B's pregnancy, I met a mom, in person, who is pregnant with her third child.  A girl.  Who will have special needs.  Previously, I had only had the privilege of talking with other moms that are expecting children with special needs through email or blogs--but this time, in person, seeing her cute baby bump...it was so much more real and personal.  And while the specifics of her pregnancy and the special needs of her child are different from mine--the unknown-ness of the situation is still the same.

And that little compartment where I had stored all those feelings--all the emotions that came with Miss B's pregnancy and heart surgery--came rushing out.  So I did what any sensible person would do in the middle of church right before you have to go sing happy songs with 30 children.

I burst into tears.

Perhaps it was a bit of PTSD? or maybe it was just pure empathy that could express itself in no other way.  I don't know.

But my compartments failed and I wished with all my heart that I could have taken the stress and worry away from that momma, added it to the suddenly-freed stress and worry that came with Miss B in Nebraska, shove it back into the compartment, slam the door, and never have to see it again--to let it shrink to nothingness without any effort on my part.

But since that meeting...there have been little pricks--a tv show depicting the passing and funeral of a sister with Down syndrome, a talk in church about overcoming trials and another one about the lessons we can learn from children--that have me in tears again when usually I would be fine.

Maybe it's time to purposefully open the compartment and empty it out permanently.

There's still a long way to go...but will we get the chance to go there?

Becca, over at The Bates Motel, posted about this article:

A New Down Syndrome Test Could Cut Healthy Baby Deaths

Just reading the headline makes me feel sick.  Where's the test that's going to cut the deaths of children with Down syndrome?  Because right now, there is AT LEAST a 93% abortion rate for babies that are prenatally diagnosed with Down syndrome.  I've even seen some articles claim that the rate is really 98%.  THAT, my friends, is a statistic that needs to be changed.

Buried in page 3 of the article, is this gem of a quote:

"We are saving babies," said Chui. "And just because we know the results doesn't mean women have to terminate. We are saving women from losing normal children just because of a procedure."

Gee thanks, Chui.  So after 2 1/2 pages of talking about how all the "normal" children will be protected...you finally mention that just because you will now know that your child has Down syndrome, you don't have to terminate.  But obviously you don't really believe that because in THE VERY NEXT SENTENCE you again mention that really, this test is just to "save" "normal" children.  The implication being that if, by chance, a procedure caused someone to lose a child that did have Down syndrome, so be it.  Ugh.

I realize that not everyone views this topic the same way that I do.  And I'm not trying to start a debate on abortion.  I'm just fed up with the way that the media, with the help of lots of people in the medical field, portray having a child with Down syndrome.  Are any of those people parents to a child with Down syndrome?  Who are they to portray abortion of a child with Down syndrome as the best option??  I can tell you now, that I have NEVER once regretted my decision to continue my pregnancy with Miss B.  Not then, not now, not ever. 

She is beautiful and perfect and radiates joy and light. 

Do we have hard days?  YES.  Having a child with special needs is not always easy--it is a different journey than the one with only typical children.  But IT IS A WONDERFUL JOURNEY.  It is a path on which I am grateful to be walking.  I NEEDED her to help me see how much I was missing out on before.  My eyes have been opened to the beauty of the world in a way that I would have never experienced without my little Miss Banana. 

Why does our society not value my daughter as much as the "typical" kids?  At times, I feel like we are making headway in our culture and that my child will be accepted and loved and valued...but then articles like this come up and I realize just how much further we have to go.

If more children with Down syndrome are prenatally diagnosed and then aborted...will society ever get the chance to see their true worth? 

If we practice this type of genetic genocide, will our society forever miss out on the rare magic that comes with an extra 21st chromosome?

Two Years of Knowing

Last year on this day, I finally wrote about getting Miss B's diagnosis. 

As I read over that post now and think about the lady that felt those emotions and the lady that wrote about the emotions a year later and about myself now--I'm just in a very different place.  The shock has turned into acceptance.  The fear has turned into faith.  The tumult has turned into peace.  The grief has turned into joy.

Two years ago, Down syndrome felt like the end of the world.  It felt as someone had ripped my "ideal life" right from my dreams and put some big dark and mysterious cloud in it's place.  I wasted a lot of time crying and worrying and feeling physically ill during those first few months of knowing. 

But now?  Down syndrome is a wonderful part of our lives.  The diagnosis that I had thought was going to forever roadblock our happiness was actually a gateway into a whole new road with some frightening downhills (like open heart surgery and all of the other medical scariness) but when we come back up, life is even more beautiful than we could see before.  The little joys that I used to take for granted, are now noteworthy events.  That extra chromosome that I thought would limit my path has actually pushed me higher than I would have ever gone without it. 

A lot of times when people find out that Miss B has Down syndrome, they say something to the effect of "that must be hard" or "that sounds really tough" or something like it.  But it's not.  Really.  Sometimes people don't believe me when I tell them that Miss B is not hard.  In fact, she could quite possibly be the world's easiest baby.

I wish I had known that two years ago.  I wish I had believed the other moms that are further down this road that also promised that Down syndrome is not bad--Really.

My hope is that someday, some mom that has just received a diagnosis will read my post from last year.  And then hopefully read my post from this year.  And I would bet my post next year will be even better.  And as this mom reads, she will find a glimmer of hope in that dark, mysterious cloud...and maybe, just maybe not let the cloud be as terrifying as I originally thought it to be.  Maybe she will find the joy sooner.

Because Down syndrome is not bad.

Really.

Down Syndrome Q&A

Since October is Down Syndrome Awareness Month--I'll be spending a little more time on Ds than I usually do.  (Ha!  Some of you probably think that's the ONLY thing I talk about anyway!  Be prepared for more!)

These are some questions people have actually asked me about Down syndrome--and experience tells me me that if one person actually ASKS the question, then other people are probably thinking the same thing, they just don't speak up.

A lot of these questions can be found on the National Down Syndrome Society's (NDSS) website, but I've added in some of my own thoughts as well.

What causes Down syndrome?

From NDSS:Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.

This is the type of Down syndrome that Miss B has.  Dr. Genes, our fabulous geneticist that studied the Miss B's chromosomes, referred to it as "your garden variety Trisomy 21".  Ha!

Did you do something when you were pregnant that caused Miss B to have Down syndrome?

No.  According to Dr. Genes, there is nothing that anyone can do to cause or prevent nondisjunction from occurring.  It just happens.

         From NDSS:

The cause of nondisjunction is currently unknown, but research has shown that it increases in frequency as a woman ages. There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents' activities before or during pregnancy. 

Oh, and for those of you that were taught in school that Down syndrome occurs because the mother did a lot of drugs...I (and I would guess the majority of mothers of kids with Ds that I know) am living proof that that is simply not true.  I have never done any sort of drugs in my life--I've never even had a drink of alcohol and never touched a cigarette for that matter either.  I have to be in some serious pain to even take Tylenol--which is just about the safest drug out there...so if you would please correct your teachers on that one, I would appreciate it.

But you're not old enough to have a child with Down syndrome?!  I thought you were "safe" until you were 35?

Surprise!  Due to higher birth rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

And honestly, Miss B is so fabulous that I am grateful that I was not "safe" from having a child with Down syndrome.  We feel like the lucky ones!

Miss B is ALWAYS happy!  But then all people with Down syndrome are like that I guess.

In general, Miss Banana is a pretty content little lady.  She likes to smile, she likes to laugh, and she goes with the flow.

But...you should see here when you get out her favorite food (bananas) and then pretend like you aren't going to share with her.  She can throw a tantrum--complete with yelling and crying--to rival the best of them. 

Or, try to go outside and not take her with you...and then be prepared for her to give you the cold shoulder when you come back in. 

Or watch her older brothers try to play with toys without her...and she will throw some elbows and pull some hair to fight her way in. 

Trust me, she is not ALWAYS happy.  She has a full range of emotions, just like people with 46 chromosomes do.

And compared to the boys, I can already tell she's going to be a bit more of a drama queen then they are...but I think that's due to the fact that she has two X chromosomes...not that she has an extra 21st chromosome!

I am so sorry that you will have to deal with a severely retarded child.

I know people mean well when they say things like this...especially right after we received Miss B's diagnosis...but...PLEASE don't say this to a mom with a brand new child with Down syndrome.  No one knows the full capabilities of ANY child and it kind of stings when people automatically assume that Miss B will never learn and will never be able to participate in society in a meaningful way.

From NDSS:

Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

I know the term "mental retardation" is not the favorable term right now...especially since the word r*tard is used as derogatory slang.  But what should I call Miss B's diagnosis?

While I don't prefer the term "mentally retarded"--mainly because of the negative stigma that the word r*tarded has taken on--when used in the medical sense, I don't cringe as much.  It's not my preference, but it has been used for years, so I don't get all worked up about people using it as part of her diagnosis.  If you use the r-word as slang though, you are making fun of my daughter and I become mama bear.  Just FYI.

Recently though, the federal government changed their wording to refer to people with Down syndrome as having an "intellectual disability".  Or, you could also just simply say she has a "developmental delay."  Either one is perfectly acceptable.

I have heard the term "handi-capable" and I like that one--probably not going to show up on government forms though!

Those are just some of the questions I've gotten in the past few months.  If you have any other questions, please let me know!

Here we go again

Yesterday, I posted this on facebook:

(Sorry, not sure why it's not sized right!)
After mentioning things like this, I almost always get the "what's the big deal?" question.  I had a whole answer typed out myself...and I wrote a whole novel about it on my facebook page...but then I saw this (copied below)...and who to answer this question better than an individual with Down syndrome?

My daughter's disability is not a joke.  It is not something she can change--she will always have an extra chromosome.  It is up to the rest of us--those of us on the outside of having special needs--to make a change in the world for those on the inside.  If we all rally together, if we each commit to having a society where every member is valued and encouraged; if we encircle those that are different from ourselves with love and respect, the world will change.  I know it.  Will you be part of the solution?  Will you go take the pledge right now and make a change?

From the Special Olympics Fan Community Discussion Board:

Why the word 'retard' hurts people like me


Back in September an athlete named John Franklin Stephens wrote an amazing op-ed on why the R-word hurts him. I've had a few people request a link to this speech and I myself had trouble finding it, so I'm posting it here.
So without further ado...
Using the word "retard" to describe me hurts
By John Franklin Stephens

September 1, 2008
A lot of people are talking about the movie "Tropic Thunder." One of the reasons that it is being talked about is that the characters use the term "retard" over and over. They use it the same way that kids do all the time, to jokingly insult one another.

The people who made the movie, DreamWorks and Paramount, and many of the critics who have reviewed it, say that the term is being used by characters who are dumb and shallow themselves.

You see, we are supposed to get the joke that it is only the dumb and shallow people who use a term that means dumb and shallow. My dad tells me that this is called "irony."

So, what's the big deal?

Let me try to explain.

I am a 26-year-old man with Down Syndrome. I am very lucky. Even though I was born with this intellectual disability, I do pretty well and have a good life. I live and work in the community. I count as friends the people I went to school with and the people I meet in my job.

Every day I get closer to living a life like yours.

I am a Global Messenger for Special Olympics and make speeches to people all over the country. I once spoke to over 10,000 people at the Richmond Coliseum. I realize that I am a voice for other people with intellectual disabilities who cannot easily speak for themselves. I thank God that he gave me this chance to be someone's voice.

The hardest thing about having an intellectual disability is the loneliness. We process information slower than everyone else. So even normal conversation is a constant battle for us not to lose touch with what the rest of you are saying. Most of the time the words and thoughts just go too fast for us to keep up, and when we finally say something it seems out of place.

We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, "unh huh," and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.

That is why I love being a Global Messenger. I work for days telling my dad what I want to talk about and he tries to write it down for me. Then we do it over and over until we have something that says what I mean. We wrote this letter the same way.

So, what's wrong with "retard"? I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the "in" group. We are someone that is not your kind.

I want you to know that it hurts to be left out here, alone. Nothing scares me as much as feeling all alone in a world that moves so much faster than I do.

You don't mean to make me feel that way. In fact, like I say in some of my speeches, "I have always depended on the kindness of strangers," and it works out OK most of the time. Still, it hurts and scares me when I am the only person with intellectual disabilities on the bus and young people start making "retard" jokes or references.

Please put yourself on that bus and fill the bus with people who are different from you. Imagine that they start making jokes using a term that describes you. It hurts and it is scary.

Last, I get the joke — the irony — that only dumb and shallow people are using a term that means dumb and shallow. The problem is, it is only funny if you think a "retard" is someone dumb and shallow. I am not those things, but every time the term is used it tells young people that it is OK to think of me that way and to keep me on the outside.

That is why using "retard" is a big deal to people like me.


John Franklin Stephens is a Special Olympics Virginia athlete and Global Messenger who lives in Fairfax, Va.

Medical Adventures with Miss Banana: 15 Month Check-Up and a Clean Bill of Health

Miss Banana had her 15-Month check-up and I am very happy to report that it was a NON-adventure!  Hooray!  We got all of her blood work results back and everything looks fabulous.  She's growing some--she now weighs 20lbs. 11oz.  and 29 1/4 inches long.  Which puts her just below 75% for her peers with designer genes and just above the 10% mark for her typical peers.  Not too shabby!  You can tell a difference when you pick her up now--it used to be that she was this little air-baby, but now she's starting to chub up a little.  Hooray for healthy, baby-fat rolls!  This visit was also the first time EVER I have walked out of Dr. SouthernKids' office without 3+ prescriptions to fill for Miss B.  That on its own is a major milestone!

With her new found weight, we decided that it was time to move her out of her infant seat and into the convertible one.  She loves the new seat; now she sits up higher and can see out the window better, but I'm struggling with it because now she has to sit in the top of grocery carts and she can pull stuff off the shelves!  Ahh, the joys of toddlerhood.

Side note: I don't think I've ever enjoyed all those little crazy things that toddlers do as much as I do with her.  She can now get into cupboards, pick up little grodies off the floor, and she tries to climb into the dishwasher.  And while I know I should be correcting her behavior, I find myself cheering that she is stable enough to open the cupboards and pull everything out.  Or that she is using a perfect tip pincer grasp to pick up tiny things off the floor.  Or that she has the gross motor skills to climb up and pull the rack out of the dishwasher...each of those acts represents hours of occupational  and physical therapy work and are cause for celebration!

I'm crossing my fingers that maybe this is the tapering off of all the crazy medical adventures with Miss B.  (Knock on wood...I'm probably shooting myself in the foot by even saying that!)  Here's to a healthy future!

Who knows? and Who cares?

I think Miss B is getting to "that" age.  The age where she's not as much of a baby and people are starting to notice that she isn't doing the typical one year old things.  It seems like now that I say she is one, people are a little more cognizant that it isn't typical for her to still be riding around in her infant carseat. 

And after asking how old she is, the next question is ALWAYS about if she is  walking or not yet.  ALWAYS.  Really.  As soon as you say, "one year old" there is some sort of automatic conditioned response that leads people to say, "Is she walking yet?"  As if walking is the only hallmark of being one.  Forget about talking, signing, eating table foods, getting into cupboards, loving to read books, etc...no one cares about anything except that ONE gross motor skill.  But I digress...

Anyway, I have had a string of events recently that have made me wonder who knows that Miss B has Down syndrome and who doesn't.

The first event came when I was talking with some people from church.  I said something about Down syndrome, and a lady that sees Miss Bannana EVERY week--and holds her often--looked at me, bewildered, and said, "oh, do you know someone with Down syndrome?"  Um, yeah.  MY DAUGHTER.  It made me laugh because obviously she had no idea.  Who would have thought someone that has seen her consistently for months would have no clue?

The very next day, I took Miss B to a doctor's appointment and the nurse told me that she wasn't sure that Miss B had Down syndrome or not--she had to check her chart to find out.

Right after that appointment, I ran to the store, and as I was checking out, the cashier girl told me she has a sister that is 15.  And me, not connecting the dots, thought: that's-great-why-is-this-girl-talking-to-me-about-a-random-sister-I-just-want-to-pay-for-my-stuff-and-get-out-of-here! And then she was asking me all sorts of questions about Miss B, which I thought was a little odd...(And I STILL wasn't connecting the dots!)  Until she asked if we had gone to the BuddyWalk in the fall.  Then it dawned on me that this girl had instantly known that Miss B has Down syndrome because her sister has Down syndrome and that we were part of the same club.  I sure wish I had clued in earlier--I would have chatted more!

My point is--some people know right away.  Some people aren't going to know at all.  Some people will wonder (especially now that she is getting older) but won't be sure.   And each of those things is OKAY. 

Because Miss Banana has Down syndrome.  It is part of who she is.  It is part of who we are as a family. 

But just PART. 

People can get to know us because of that part (like the connection with the cashier girl).  They can get to know us without it (like the lady from church).  Or they can wonder and ask questions about it--or not.

We love our Miss Banana for who she is--ALL of who she is--and if other people know or don't know about her having Down syndrome so be it.  She's perfect either way.

Medical Adventures with Miss Banana: Panic, Blessings, and Introducing Dr. Guts

On Wednesday, I took Miss B to The BIG City to see Dr. TennHearts and the new doc in Miss B's life, Dr. Guts.

At our last appointment with Dr. TennHearts in The City at his clinic for those of us that live in The Village, he had noticed the hole in her atria that Dr. HeartSurgeon had put in (on purpose) during her heart surgery. He wanted to close the hole through a catheterization procedure because he thought too much blood was short-circuiting the heart through it. He had wanted to just go ahead and schedule the procedure instead of another check-up, but when I told him that we would be in The BIG City to see Dr. Guts, he decided to do one more check-up at his office with the BIG City equipment, which I'm pretty sure is more advanced than most medical equipment where we live.

Miss B had a fever the day before, but we have been waiting almost 4 months to see Dr. Guts and there was no way we were skipping the appointment!

The BIG City is about 3 hours away, so Miss B and left at 6:45AM to make it to Dr. TennHearts appt at 10. Poor Miss B slept the whole way and when we arrived, she obviously didn't feel good. The nurse took her temp (100.9F) and her respiration rate was super fast. But, being the heart doctors, they told me I would have to take her to the ER to get it figured out! Seriously??? We were in a room with 2 doctors and 3 nurses and NONE of them can tell me what is wrong with her? Ridiculous.

Anyway, they went ahead with the heart appointment. Dr. TennHearts walked into the room and said, "We are going to look at her heart today to see if we can fix the hole between her atria through catheterization or if we are going to have to open heart surgery again."

CUE PANIC

Wait a minute! Open heart surgery AGAIN?? WHAT?!?!?? We had talked about the catheterization before, but OPEN HEART SURGERY?!?


I don't think there are very many phrases in the English language that can strike fear in me like the phrase "open heart surgery" can.

The room started spinning and it was just about all I could do to keep from fainting.


I know that sounds overly dramatic, but for those of you who have had a child go through open heart surgery, I'm sure you can understand. For those of you who haven't....I hope that you never know. It's not something that I would want any child or parent to have to go through.


Miss B and I headed to the echo cardiogram room--where Miss B did a fabulous job. I think it helped that she felt like crap, because she actually fell asleep during it! Because she was so still, the tech got to spend a lot of time getting really good pictures of her heart.

The whole time I was silently praying that we wouldn't have to do open heart surgery, that the hole could be fixed with the catheter procedure.

We walked back to Dr. TennHearts' office for another wait. I paced the room--Miss B had fallen asleep again on my shoulder. 

Please don't need heart surgery again. Please. Please. Please.

Dr. TennHearts walked in and I braced myself for the worst.


"Good news. We got a really good look at her heart today. The hole is very small. And I think we should just leave it alone entirely. See you in six months."

CUE RELIEF

If I hadn't been so elated about the good news, I think I would have chewed him out for scaring the crap out of me.

I left the appointment with a still sick baby, but feeling very blessed. If she hadn't been sick and laying so still, they might not have gotten a good look at her heart. If we hadn't come all the way to The BIG City for her appointment, and just relied on the info from the equipment in The City, we would have unnecessarily messed with her heart. And possibly taken her into OPEN HEART SURGERY for NO REASON.


The idea of open heart surgery is horrible on its own...but to do open heart surgery unnecessarily?? (Shudder)...I don't even want to think about it.

In a daze, I picked up some Motrin for Miss B at the pharmacy--which helped tremendously.

After that wild ride, our appointment with Dr. Guts was rather uneventful--just a lot of questions about the ins and outs of Miss B. (haha-pun intended.) We scheduled a swallow study for her to make sure she isn't aspirating. We'll see how that goes.


The End.

(Anti-climactic, I know. But I would MUCH MUCH rather have her medical episodes be anti-climactic instead of being nail-biters.)

Stay tuned...this week Miss B heads to Dr. Ears.

P.S. Miss B (and T-Man) are still sick. We saw Dr. SouthernKids on Friday, so now they are on various meds that should make them feel good. The jury is still out on that. I think they are doing better, just not totally fabulous yet.

Miss Banana's First Birthday!

We are currently experiencing technical difficulties--so the pictures will have to wait until after I pay a computer guru oodles amounts of money to tell me why my computer keeps crashing everytime I try to get my pictures off my camera...or whenever my computer has been on for awhile...or whenever I try to open a file...UGH--technology can be SO frustrating!  (And yes, I have Symantec's security system--and according to it, I do not have virus...I've also run different checks for spyware and adware...but my computer crashes before it finishes the scans.  Nice.)

Anywho, before I grovel at the feet of the computer gurus and ask them to fix my lifeline computer, I wanted to make a post about Miss B's birthday.  I made a montage of her first year with all of her birthday pictures in it--I will post it as soon as I can.

Last week, Miss B turned one!!

I can't believe it has already been one year...I know that is cliche...but a year ago I didn't know if she would make it one day, one month, one year.  This is a major milestone!!  When I look back at the person I was before we got Miss B's diagnosis, I am ashamed about how small-minded I was.  And not that I am perfect now, but I know that she has opened my eyes to how miraculous life is and how much joy there is in everyday life.  And that all the little wonders in life should not be taken for granted. 

I didn't know how much I needed her!

Miss B brings joy with her wherever she goes--I know I've said it before, but she just radiates light--and you just can't help but feel happy around her.  There really is something magical about that extra chromosome...I don't know how to explain it.  It just is.

Oh, how I love my Miss Banana!!!

Here are some of the things Miss B is doing at one year:

• Sitting independently
• Can go from tummy to sit, and back down to tummy independently
• Gets on hands and knees and rocks back and forth (she is SO SO close to crawling!)
• Can roll, army crawl, etc to get herself to pretty much anywhere she wants to go
• Can feed herself
• Eats soft table food
• Can drink fabulously from her Honey Bear
• Uses a perfect pincer grasp--aka pick things up between her thumb and forefinger
• Says "mamama" in my direction and "dadada" in Dr. C's direction and "byebyebyebye" while waving when it's time to go
• Can sign "baby"
• Is solidly in size 6-9 month clothes (although I put a newborn t-shirt/shorts outfit on her the other day, and it fit!  Apparently we still have some growing to do!)
• Still wears size 01 shoes
• Likes to play with toys and loves books
• Loves music and will dance whenever she hears it
• Has one tooth--with 3 more trying to come in
• Has everyone wrapped around her little finger

Happy Birthday Miss B! 

Medical Adventures with Miss Banana: Pilot Episode

We are starting a new feature here on "Life As We Know It"...I know I've talked about her medical problems before, but she has had so many episodes, that I thought we would just give them their own feature so hopefully everyone can keep it straight--and for those of you that don't want to know the ins and outs of Miss B's doctor craziness, you can just skip these ones. :)

On the Pilot Episode today, I thought I would give a recap of the past months' medical circus:

It all started with the cardiologist visit at the end of January.  Dr. TennHearts said that she was having pulmonary hypertension and might have to start meds for it.  He could tell she was having a respiratory infection and wheezing, and thought that might be contributing, so tolds us to come back in a month and he would recheck her.

Next, we headed to the Dr. SouthernKids about the respiratory infection.  Cue round of antibiotics, oral steriod, and albuterol via nebulizer every four hours.

Week 2: Head back to Dr. SouthernKids after finishing oral steriod treatment and no improvements on the respiratory infection.  Cue stronger round of antibiotics, singulair, and pulmicort via nebulizer 2x/day.  Also received RSV vaccine and various other routine vaccines.

Week 3: Head back to Dr. SouthernKids after finishing next round of antibiotics with no improvement.  Cue referral to Dr. Guts to see if Miss B is aspirating (basically swallowing liquids into her lungs when she drinks) and if that is causing the wheezing.  Also, bring on 3rd antibiotic (stronger still) and instructions to keep doing all the previous routine.

Week 4, part 1: Miss B mysteriously breaks out in funky hives all over the back of her head, shoulders, some on the torso and diaper area during occupational, physical, and speech therapy appointments.  Dr. SouthernKids was booked for the day, and there was no way I was going to CluelessDr.Kids, but thankfully Miss B's service coordinator, Richard, showed up, pulled some strings, and got me into see Dr. SouthernKids that afternoon.  Turns out, Miss B is allergic to amoxicillin.  Fabulous.  She did finally get a clean bill of health on her lungs and we can stop the albuterol, (but continue everything else).

Week 4, part 2: Dr. TennHearts checks her over and says the pulmonary hypertension is only mild now (maybe it was the junk in her lungs causing the problem?) but now the small hole Dr. HeartSurgeon left in during Miss B's surgery is leaking A LOT and needs to be plugged.  He'll consult with various other dr. tennhearts and call me next week.

Not quite as entertaining as Seinfeld, but just as many plot twists as CSI!

Stay tuned for more episodes...

The Exciting Conclusion to Mission: Impossible

In case you missed it, here are the highlights from last week's installment of Mission: Impossible--

• 2 sets of medical records needed to be faxed from NE to Dr. TennesseeHearts
• 10 phone calls
• One promise to send records made
• One refusal to send records made
• One voicemail saying that denied records were actually going to be sent to me

And now you're up to speed!

After all the phone calls, I remembered that Miss B's service coordinator from NE had sent us some of the hospital records, so I decided to take those with me, hoping they would be right.

Amazingly, some records from Children's Hospital that I didn't have were, in fact, delivered to my home on Monday.  Funny thing though, they also included someone else's registration for their insurance wellness program.  It kind of looks like whoever jotted down my new address on the back of these forms and just threw them all into the envelope by mistake.  Slightly ironic that I had to pull teeth to get MY OWN DAUGHTER'S records and yet I had to do nothing to get some random person's wellness information.  I'm sure the HIPAA people would love that.

I took the whole stack of records to Dr. TennHearts.  Once there, I asked to make sure that the records that Dr. Heart in NE promised to send were there.  And....a big fat NO on that one.  I'm not sure if they just never made it out of Dr. Heart's office or if they just stayed in Dr. TennHeart's home office instead of coming to The City with him...but either way, the ONE set of records that I was counting on being there, were gone.  I shouldn't have been surprised!

I finally hand the stack of records I had over to the nurse for them to make copies.  Dr. TennHearts flipped through the stack, picked out THREE PIECES OF PAPER to be copied, smiled and said, "that's all I need."

Are you kidding me?  I spent over 2-3 hours trying to track down all the papers and ensure that he had them all--and he only needed THREE papers that had been sitting on my bookshelf the whole time.  He should have at least given me a golden star for effort or something.

Three pieces of paper. 

That's it. 

Go Figure.

The numbers

Miss Banana had her evaluation with the physical therapist (Ms. Large Moves) today during her OT appointment.  Miss Banana did fabulous (except she refuses to roll during any therapy session even though she rolls constantly at home); she held her head well, good arm extensions, good stabalization, good baby sit-ups, etc.  Ms. Large Moves was all praise and just kept saying how fabulous my little lady was doing as she went through the evaluation.  Which, for me, is always nice to hear--I mean who doesn't like hearing that their kids are awesome?? 

Anyway, I was feeling pretty good about where Miss B is in her gross motor development until we got to the end and Ms. LM scored the evaluation.  The result?  5 months.  Miss Banana is at the stage a 5 month old would be.  Except, she's almost eight months old.

Sigh.

The OT and PT were praising her and saying how awesome 5 months is--which it IS, I mean, Miss B could hardly move for the first 3 months of her life without losing weight, so I know I should be ecstatic that she is as far as she is.  And usually I am--its just when I hear the darn numbers, that I feel bummed that she isn't doing more, progressing faster, you know--rockin' the socks off all the charts.

I know that the numbers don't REALLY matter. 

But KNOWing that, and being able to accept it and let go of all the numbers and age ranges for milestones are two very different things.  It's easier to let it go and not care about when she gets to certain stages when we are at home, in the day-to-day of life.  But when I lay her down next to a baby that is 3 months younger than her and they are doing the same things--or when a professional flat out tells me she is 3 months behind, I get this moment of competiveness where I feel like I have to make excuses for Miss B or that I have to start doing more and I'm disappointed that we aren't farther along.

After I get over that moment, the guilt comes that I even HAVE those thoughts because I know I just need to let Miss Banana be who she is going to be.  I have to get over the fact that there will be delays in her development and that it is okay.  And some days, I'm there.  But when I hear the exact amount her delay--when it is quantifiable--I'm still thrown.

Then I get caught in the mental guilt battle of:
Am I pushing? vs. Am I encouraging?
Am I doing enough? vs. Am I doing too much?
Am I letting Miss Banana be herself? vs. Am I projecting myself onto her?
Why do I care about the numbers?!?

Sigh.

I hate the numbers.

One Year Ago Today…Our Prenatal Down Syndrome Diagnosis

*This is the story of Miss Banana's diagnosis. I figured that after a year, it was time to write it. It is more for my benefit than anyone else's. It is very long. Some of it may not seem nice or happy--that's because at the time, it wasn't. Oh how I wish my then-self could see Miss Banana and I now! If I had known the pure joy that Miss Banana would bring into my life, perhaps this story would be different. But I didn't know and the story is what it is.

I took T-Man to preschool. Fearless and I came home; I started folding laundry while Fearless watched SuperWhy! I was about halfway through Mt. Laundry, when the phone rang. It was Joanne, the other midwife. Carol, my midwife, was out of town.

Joanne started talking. "We received the results of your quad screen. And your risk of having a child with Down syndrome is abnormally high. We would like you to come in immediately to have an ultrasound to make sure your dates are right." Or at least I think that is what she said. Things got a little fuzzy after "risk-Down syndrome-high". I sat down on the laundry, toppling a few piles. (Funny the things you remember...) I tried to grasp what she said. I was having a hard time believing that I was really having this conversation--I vaguely remember her saying something about false positives and how if my dates were off or if I was having twins the test results would be skewed. Whatever the case, she wanted me to have an ultrasound right away.

As soon as she hung up--I burst into tears. I called Dr. C, who thankfully was not in class. I was sobbing and incoherent at this point--but somehow managed to communicate that something was wrong and he needed to come home NOW.

I hung up the phone and dialed my sister--I couldn't be alone while I waited for Dr. C to get home. She could tell something was wrong before I even got past hello. I told her the news along with the twins/wrong dates scenarios. T-Man had been saying for a few weeks that I was having twins--I had laughed about it and said that I had no desire to have twins. As we were talking, my sister said, "Well, maybe twins wouldn't be so bad." I agreed.

Throughout my pregnancy, I knew something was different. Because T-Man had been talking about twins so much, I thought maybe he was right--in my earlier office visits, I had even asked Carol to check again to make sure there wasn't a second heartbeat. When she hadn't found one, I thought that maybe I was having a girl and that's why it was different. I tried to push the differentness out of my mind, but at the edge of my thoughts, there was a general unsettled feeling that I couldn't shake.

As I waited for Dr. Corn to come home, I remembered an instance that happened during my pregnancy with Fearless. I was at devotional for church. The choir was singing and there was a woman who was deaf signing the song along with the choir. As I watched her, I was struck by the beauty of her language. Unexpectedly, I had the impression that I would have a child with special needs of some sort. I brushed away the thought and when Fearless was born without any difficulties, I dismissed it completely. But now, I remembered.

Fearless had long since quit watching SuperWhy! and was trying to figure out what was wrong with his mommy. He tried to help me feel better--he brought out his favorite stuffed animal and gave it to me. When my tears still didn't stop, he brought another and another and another until he had exhausted the entire stuffed animal collection. He gave up on the stuffed animals and just sat on my lap clinging to me as I cried.

Dr. C came home. He hugged me and then I headed out the door. As I was driving, a Primary song I had learned as a child started running through my mind. I don't think I had sung it since I was maybe 10, but somehow, I remembered the words:
My life is a gift
My life has a plan
My life has a purpose
In Heaven it began
My choice was to come to this lovely home on earth
And seek for God's light to direct me from birth

I will follow God's plan for me
Holding fast to His word and His love
I will work and I will pray
I will always walk in His way
And I will be happy on earth
And in my home above

I thought about the words--did I really believe them? Was having a child with special needs really God's plan for me? How can I handle that?? Can I really be happy with a child with Down syndrome?

At the doctor's office, the ultrasound tech was fabulous. She could tell I was in shock and panicked. She talked gently, she moved slowly--I felt a little like a scared cat expertly being coaxed down from a tree. She asked me if I wanted to know my baby's gender--which I did. A girl. After two boys, I was having a girl. The news was welcome, but unimportant. She continued the ultrasound--no hard markers for Down syndrome, but some soft markers--shorter femur, shorter nasal bone, that made it impossible to rule it out. She listed my options: 1.) Do nothing--wait for the baby to be born to find out more; 2.) Have the amnio done to know and be able to prepare emotionally/mentally; 3.) Have the amnio done to know and terminate the pregnancy.

I immediately ruled out Option #3. If God's plan for us was to have a child with special needs, Dr. C and I would figure it out. I told the tech I had no desire to terminate, no matter what the results were. Thankfully, that was the only time I was ever asked if I wanted to abort my baby. I asked what my odds of having a child with Down syndrome were--1:180. It doesn't sound like much, but compared to the 1:960 odds I had before the quad screen, 1:180 seemed incredibly high. I asked about amnios--my tech said in her 17 years of being a tech, she had never had someone miscarry with her during an amnio, but, in general the chance of miscarrying during an amnio is 1:200. I weighed the odds...and decided to have the amnio done. I HAD to know. I couldn't spend the rest of my pregnancy wondering--I needed to know one way or the other. We scheduled the amnio for one week later. I was terrified. I left the office, clinging to the few ultrasound pictures she had sent me home with. Another pregnant lady in the elevator saw the pictures and asked if I had found out my baby's gender. I told her a girl. And then I started crying again.

I went home. I told Dr. C it was a girl. I cried more. We all went to pick T-Man from preschool. Dr. C went in; I couldn't be around anyone or say anything without bursting into tears.

A week went by. I remember taking the boys to Boo at the Zoo, I remember taking them trick-or-treating, I remember raking the endless leaves in our big backyard. I cried constantly. The questions circled in my mind, like music stuck on continuous play. Was my impression during my pregnancy with Fearless correct? Did or didn't she have Down syndrome? Would she always live with us? How would T-Man and Fearless handle having a sister with special needs? Would she suffer? Would we become "that" family--you know, the one with the r*tarded kid? Would she know us? Would she love us? Would I love her?

The day of the amnio arrived. In the morning, Dr. Corn had his oral comprehensive examinations for his doctorate. In the afternoon, we went to the doctor for the amnio. I was terrified. The doctor and his student came in. The tech from the week before once again, expertly calmed me down. The doctor did the test. I couldn't watch. The tech did another ultrasound, thankfully, the amnio had gone perfectly and we didn't miscarry.

The waiting began again--the results could take up to two weeks to come back. More leaf raking. More crying. More questions. Lots of Oreos. Lots of eating out. No answers. One night Dr. C and I were talking about it. We came to the conclusion that she either had Down syndrome or she didn't and there was nothing left to do but wait.

Thirteen long days later, the phone rang again. I felt like I was in a movie--you know, the wide camera angle in the sky, the phone rings, and the camera zooms into the house super fast. I knew it was THE call. I was cleaning out the coat closet. It was one of many projects I had created for myself to take my mind off the waiting. I had just finished pinning all the matching gloves together and I was about to rearrange the snow boots. On the phone this time was Carol.

She was too chatty. She asked what I was doing; when I told her I was arranging boots, her polite courtesy laugh was too forced. I knew the results before she said the words. "We have the results of your amnio back. Your baby tested positive for Down syndrome." I thanked her for telling me and tried to get off the phone. She stopped me. Something about going to a geneticist to learn more. She wanted to go with Dr. C and I to the appointment so we would all know what was going on. I was grateful to her for that. I finally got off the phone and started crying again.

I called Dr. C. Positive. Come home, NOW.

I called my sister. Positive. Just talk to me until Dr. C gets home.

Fearless got out all the stuffed animals again.

For the next few weeks, I cried constantly. My heart ached for the baby I thought I was going to have. Dr. C and I would put the boys to bed and then he would hold me while I sobbed. I love that man.

One of my friends, who didn't even know about our testing, even had a dream about me crying a lot. I guess I was sending out pretty strong signal. Another friend told me about some online message boards for parents of kids with Down syndrome. I tried to look at them, but I could only read a few posts before I would break down. I didn't want to need to be part of those groups. Another friend asked me if I was angry with God. Her question struck me--was I angry with Him? No. More confused, lost, spinning, drowning in my new paradigm.

At the beginning of January, we went to the cardiologist. I had begun to pull myself together--only crying 2-3 times a week instead of 2-3 times a day. I was hopeful going into the visit--about 50% of kids with Down syndrome also have heart defects--maybe we would be on the "no heart defect" side. No luck. Our baby had complete A/V septal defect--essentially two holes in her heart that would require open heart surgery within the first few months of her life. It was another blow. I held myself together until we got back in the van. Then I cried again.

Only this time, I didn't care about the Down syndrome, I just wanted my daughter to live. She could live with Down syndrome, but not without a heart. As odd as it sounds, the news of her heart defect was actually good for me. It snapped me out of pity-party land and made me remember what really matters. My daughter's life is important, her IQ is not.

I began to reach out. I joined those message boards that I had avoided before. I read books about Down syndrome. I researched hearts and heart surgery. Dr. C and I even went to a New Parent meeting held by our local Down syndrome family support group. It helped. I began to see how people and families touched by Down syndrome were more alike than different. I began to trust God that everything would work out as it should.

By the end of my pregnancy, I was done grieving for a child that didn't even exist. I had gotten used to the idea that although Miss Banana's diagnosis was not in our plans, she IS the daughter we are supposed to have.

When Miss Banana was born, I wanted to see her right away. She was having trouble breathing, so they put an oxygen mask over her as they placed her in my arms. I examined my baby. She was beautiful! Long hair, cute chubby cheeks, little tiny nose, ten fingers, ten toes. What had a I been so afraid of? There was nothing scary about my new little baby. She needed me just like all babies need their mommas. As I cradled her precious new body in my arms, despite her medical difficulties, I felt at peace with her extra chromosome. I knew that I just needed to let go and have faith and that God would take care of us. We could handle all of the things our journey together would bring. We would be okay. We would have joy.

And it all began one year ago today.