Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Monday, March 25, 2013

Yay! Or Yeah! (either way!!)

Today is a good day and I have so much to be thankful for in my truly blessed life.

With Owen, I am grateful that he CAN hear! He had the repeat ABR test this afternoon to check his hearing again. The last time it was determined he had mild to moderate loss in both ears. Today things looked better, especially in his right ear. The audiologist said that he is just outside the normal range and closer than he was the last time. She explained that his hearing sounds probably like he is under water; muffled and not very clear. She will be discussing O's results with the ENT doc and getting back to us tomorrow with a plan. Her opinion: it is likely due to fluid in his ears and possibly due to the small ear canals and structures (more common on kids with DS). She thinks it will get better as he gets older and the fluid drains. Her recommendation was that we do temporary hearing aids on, at least, the left side to reduce the effects not hearing may have on his speech development. It is great to have the beginnings of a plan of action and that we are able to help him with what he needs! Stay tuned for super cute pics of our little guy rocking some hearing aids sooner than later!

With the older kids...we cannot wait for spring! Spring break last week was a bust. It snowed and was cold and/or windy nearly everyday. What a bummer! Thankful that things are looking up weather wise and that we can get to the parks and out for walks soon (without being bundled to high heaven!). I am so glad that they had great attitudes for a majority of the week and were content with our stay-cation!

I am incredible lucky to also have a hubby who keeps me grounded and sane. We have done a lot of working on house plans this weekend and are pleased with what we've got. I am so glad that he has a construction-minded brain; it will really help the process along and ensure we end up with the amazing home we would like. Hoping to have a general timeframe by the end of the month--can't wait

Wednesday, March 20, 2013

Peace, Hope, Love 3/21

This is something I posted on my Facebook page today...I am overwhelmed by the number of people who have already done it or shared the photos. It is heartwarming to know how many people in my life are so accepting of these differences. Although, it shouldn't be such a surprise as I have really made a conscious effort to surround our family with love and peace (as much as humanly possible, of course!).

I know this will be the first of many years celebrating this day. I am so lucky to have found a new family in those who also love someone with designer genes!

Family and friends ~ My challenge for you is to change your adorable profile pics for a day to honor our journey with Owen for 3/21, is World Down Syndrome Day. I have included a few ideas in case you would like to borrow one :)

In getting to know over a hundred families who are now learning about Down syndrome first hand, it is so clear to me that it doesn't take anyone "special" to raise a child with DS. It just takes a loving family that is committed to raising children.

My hope is that by touching the lives of those around us, one day I can offer support to a family struggling with this diagnosis and help them understand one big idea-- babies with Down syndrome are just that--BABIES.

Love to you all!

Tuesday, March 19, 2013


A verse from Owen's baptism this weekend....

Owen meaning "well-born"

For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
(Psalm 139:13-14 ESV)


Sunday, March 17, 2013

Who I Am

A note from Owen...
I am squishy.

I am strong.

I am cuddly.

I am ME!

A note from mom...
The thing I wish everyone would understand about people with DS is that that they are PEOPLE!  Each of my four children has had issues that have come up. 
My oldest was born 8 weeks early and spent 30 days in the NICU.  She has 46 chromosomes. 
My second child was diagnosed with failure to thrive just after his first birthday because of eosinophilic esophagitis due to food allergies. We spent 4 years working with specialists across the country and undergoing many endoscopies to get him well.  He has 46 chromosomes.
Our third child has milk, egg and peanut allergies and requires an EPI pen and special diet. He also happened to break his leg at 17 months and required a cast.  He has 46 chromosomes.
Then there is Owen.  He was induced due to pericardial effusion. Upon arrival, he was cleared of heart issues but did develop pulmonary hypertension.  He spent only 6 days in the NICU and came home on oxygen (which he was on for 2 weeks). At 2 1/2 months, he sleeps, poops and eats. He is a baby taking in the world around him.  He has 47 chromosomes.
All children come with challenges and I am sure we will have more to come with each of our kids.  Our plan:  keep our eyes towards the future and grow kids who will be successful, happy adults. In the meantime, we will take each moment as they come and enjoy our family.

Tuesday, March 12, 2013

Out of the darkness

Another day of some snow here. And wind.  Again.

It was pretty, though, and didn't require shoveling or traveling out in it, so not too bad, I suppose.  Plus, the high for Friday is near 60.  We'll have a glorious, muddy mess, but at least we can hopefully go for a walk or something outside.

Overall things are going well here. Kids are happy and healthy. Conferences were awesome for the older ones.  We meet with the builder this week, so the ball will be rolling on that soon, too!  I cannot wait.  Each day, it seems our house gets a bit smaller.  It will be nice to have more space inside and out.

Several people have asked how far we are moving.  It is only about 20 minutes away and the kids will not be switching schools, so they are thrilled about that.  We will be near a big park with fishing and boating and trails and such, so that will be awesome for the kids.  Where our lots are is an established subdivision with a handful of lots left, so that will be nice, too. I really can hardly wait!

I am emerging from my funk, too.  The return to crazy chaos has helped a bit. As well as the counsel of other DS moms.  Several of us that have kids around the same age have had various run-ins lately and it really is starting to drag us down a bit.  It is comforting (and a bit creepy) how similar our paths in this journey have become.  In a way, I feel like it is us against the world to advocate for our kids. But, a little at a time, we will make a difference and chip away at all the stigma and conceptions around Down syndrome.

This weekend we will be having Owen baptized.  I am so excited for that day, although I am a touch nervous that I will be breaking down during the service.  It is such an important day, and it seems to have taken on a much deeper meaning for me with Owen, and I know the emotions will be running high.  Our pastor typically shares a verse for the child.  Colton's still stays with me as it was from Isaiah and spoke about out of the darkness came a great light.  Pastor Mike had no idea (or maybe he did...) how close to home that hit.  It was a huge decision to quit my job and stay home and I knew it was the right one immediately.  I truly felt I had the light shown on me for my life's true purpose.  Then he read that verse for my son. 


Well, I think 50% of my kids are sleeping (25% on me!) so I am going to go check on them.  Hug your kids and loved ones extra tight tonight. I feel like bad things remind me to do that, but I need to remember that being grateful and happy should remind me to do it too.  Because, hopefully, those are the days that prevail.

The people that walked in darkness have seen a great light: they that dwell in the land of the shadow of death, upon them hath the light shined.
Isaiah 9:2

Sunday, March 10, 2013

Fragile...Handle with care

I knew life was a roller coaster.  It has been a wild ride, especially since having children.  But the past few months have also had their share of high highs and low lows. 

This weekend was one of "those" times. I was really a hot mess. Really.

My amazing in-laws took the three older monkeys on vacation to their house.  So we had a long weekend to ourselves.  I had a few things planned, but not much because I really just wanted to relax (if that is possible with a baby in the house!).  Shortly after the kids left, I knew it was going to be an interesting weekend.  

I feel awful that my poor husband had to be around me for our "relaxing" weekend.  I was so grateful my BFF changed lunch plans to a pedicure because I could not stand the thought of eating.  And, if anyone saw me out and about, please accept my apologies for being a crab. 

The kids were not out of the house for very long before I found myself cradling Owen after a bottle and sobbing.

Whoa. Silence really can be deafening.

It became clear to me that although I am functioning at a pretty decent level, everything that has transpired in the past months really is still quite raw.  My emotions are much closer to the surface than I anticipated and this weekend was my turn to tend to my heart.

I wasn't quite sure at first what my tears were for.  After some reflecting, though, I believe it really is about the uncertainty of what is to come.  There are so many unkowns of what lay ahead.  So many decisions that will need to be made and things to be tended to.

I do NOT want to screw this up. 

Parenting feels like a bit of a science experiment on a regular day, so this journey feels like we are at the next level and I do NOT want to screw this up.

I am struggling with the fact that so many people we have talked with (medically speaking) just expect some of the doom and gloom all the time. "Our" kids, it seems, are often over diagnosed or under diagnosed.  The stories I am hearing from moms dealing with medical concerns and their little ones lately are awful.


Some doctors chalk everything up to that pesky extra 21st chromosome and refuse to take moms seriously. 

Some doctors assume all of "these" kids have reflux.  Or hearing loss.  Or vision problems.  Or sleep apnea.  Or heart issues. Or....I'm sure you see my point.

This frustrates the heck out me.  My kid is my kid.  He has Down syndrome, but that it just one piece of the puzzle.  I am so grateful to have a pediatrician that has, so far, been great.  She listens, she looks at the big picture, she asks good questions. I appreciate that more than she knows.

I also feel like there is a fine line in life between proactive and reactive and I am struggling with this, too. 

I am quite surprised at the number of therapies and such that people start at incredibly young ages.  It is overwhelming for me to think about.  And lots of what I have read of families with older kids freaks me out.  The scheduling alone is enough to send me into a tailspin.   

A woman I met the other day talked about starting therapies at 2 weeks.  First I was thinking was "What the hell can you be doing with a 2 week old?" Then my thoughts turned to, "Crap.  He may already be weeks behind." 

It all just doesn't feel right for us.

Then I think back to the conversation B and I had about all this.  We decided we would just take things as they come and support O with what he needs to be successful  Meet the guy where he is and work to grow him as far as possible. And, although I think being proactive is a great strategy, I also think about kids.  O is not any different in fact that he *could* have potential for several roadblocks in the coming years. BUT, it will really all depend on his needs and abilities. We will get him every resource under the sun to help him out, exactly what we would do for any of our other children.
My gut is just speaking to me differently, sometimes, and I am not sure if it is just a 4th child thing or a denial thing or what exactly. And I hoping to navigate the proactive/reactive path very thoughtfully.

What does this rambling boil down to??

I do not want to screw this up. 

Nothing would break my heart more to find out in a few years time that if I had done X, kid Y would have had a better shot in life.  Not just for Owen, that goes for any of my kids. But with Owen I feel like there will be many more factors to consider.  The variables greater.

Or he could be just like any other kid.  And that is my greatest hope.

I know many of mom DS mom friends may read this and I never want to judge another family, especially considering what all face in life.  So please, do not read that I am judging your choices at all!  We are all walking this crazy path and I like to hear how we are all doing it.

Tuesday, March 5, 2013

3/21 is World Down Syndrome Day - huh?!?!

Like most of those reading this, I never knew this existed before our diagnosis with Owen.

But it makes perfect sense.  For every imaginable thing in this world there is a day (google it; it's fascinating-ish).  Did you know there is an international bacon day?!?  But although I love bacon, I do not care about its day.

I do care about World Down Syndrome Day now and my hope is that, through Owen and our family, you will too.

If you have a moment, take some time to visit the National Down Syndrome Society page to read all about what the day means and peruse the resources. I love how they chose March 21st or 3/21 to represent the 3 copies of the 21st chromosome (Trisomy 21 or Down syndrome). 

One thing I have come to learn over the past weeks is that a diagnosis of DS (or anything for that matter) can come with lots of assumptions.  It also comes with LOTS of misconception and misinformation.

As someone who might care about our family (if you put up with reading this blog you must like us a bit, at least!) I would love for you to better understand what we are up against with his diagnosis and, most importantly, that we really do not know what Owen's future holds (oh wait- that is just like the rest of us!).  We do not know, for certain, what tomorrow will look like.  Our kids are our life and we will continue to support and advocate them in any way possible.  It would mean a lot if you would take a moment and visit the page, too, and join us on this journey.

Kate and I are having a girl's night out to commemorate this first World Down Syndrome Day. Consider joining us on Thursday, March 21 (World Down Syndrome Day) from 6:00-9:00pm at The Social Canvas in Waukee, IA. $10 from each painter's fee ($35) will benefit our local GiGi's Playhouse in Des Moines. Let's make this "Paint for a Purpose" night an honor for Owen's first World Down Syndrome Day!

Here is the piece we will be creating:

Hoping some of you might join our family in learning more about Down syndrome and/or joining Kate and I on March 21st!

Monday, March 4, 2013

Time traveling

If I could go back a few months in time here would be the main thing I would tell myself:

I think after our diagnosis, I became obsessed with it.  I had such a thirst to know everything I could possibly know about it.  I needed to know everything.

Then I suddenly wanted to know nothing more.  I just wanted my baby here to hold and snuggle and love on.

Now that he is here and we have settled into life and it is just that...


My blog about life with Down syndrome has simply become a blog about life. 

How boring.

It really occurred to me yesterday when I realized it had been a bit since I had posted.  No wonder -  especially if you read the lasts posts.  Nothing extraordinary. Just life.

What a wonderful thing!

I wish I could tell myself that you will not be thinking about Down syndrome every moment of every day.  You will be soo busy living life, you will barely have time to think about, silly girl!  

I think anything that is unknown is scary.  I was SO worried that so much would/could be wrong with Owen.  I let that worry steal some of the joy from my pregnancy.  I regret that.  This was probably the last time I will have the privilege to bring another life into this world (yes, probably, grandmas!) and I missed part of it worrying.  Shame on me.

This is one of my hopes: not worry away the lives of my kids. There will ALWAYS be things to worry about with them. In fact, I am sure the degree of worry will rise in direct correlation to their ages.  But life will go on regardless.  I will live in the moment with my kids, or at least try really hard to.

I would also tell myself not to give a poop about what others think/feel about all this.  I have found myself getting worked up about responses from internet people.  Random internet people that post stupid, inaccurate, outdated information. What a waste of my life's minutes.  I surely should have told myself to remember that not everyone will be as informed as me.  I must grant them grace rather than working myself into a tither about it.  More wasted life minutes.

The final thing I am perseverating currently on is what I should say to myself about talking to the people in my life about all this.  Overwhelmingly, the people in my life have been AMAZING through the past months (diagnosis to birth to life now). 

I have rarely had an "I'm sorry."
I have had no one suggest that Owen weren't the perfect little being he is. 
I have had NO ONE suggest, allude to or question why we continued our pregnancy.

This all speaks VOLUMES to me about the people in my life and those we chose to talk to about all of this.  I am so grateful for the support system we have.  Blessings beyond the ordinary for sure!

A final note...
I do apologize if I run into you somewhere with or without O and spew information about his diagnosis.  I also apologize if I say nothing about it. 

During encounters I struggle with:
  • Do I say something or not? 
  • Have they heard about it through the grapevine?
  • Have they read this blog?
  • Can they tell *something* is unique about O?
  • Did I brush my hair?  (really, this is a problem lately.  I really need to take few moments to check a mirror before I leave the house!)
So please forgive me if I go extreme one way or another.  I do not want everything to focus around DS, because it really is not a large part of our lives (right now, at least).  I also do not want to "hide" or minimize it because it is a part of our life now.

Weird, huh?

I am sure this will all sort itself out in time, but in case you see me before then, sorry!      


2 months!

Time flies when you are having fun. Or sleep deprived, apparently!

It feels nearly impossible that Owen has been here for 2 months already. Yet it also seems like he has been with us forever.

He is growing like crazy! We go for his official check up this week (boo shots). But at his appointment last week he weighed 12 and 1/2 pounds! And if you have seen him lately, you might suggest half that weight is in his kissy cheeks! He is a healthy little one, that is for sure, just like his siblings.  His petechiae has cleared up completely!  Thank goodness.

We had a good weekend and the weather was much nicer. On Friday it snowed all day, coming down in big beautiful flakes. It looked like we lived in a snow globe. Beautiful!

This weekend we are going to check out our local Gigi's Playhouse, so I am excited about that and making more local connections. 

Friday, March 1, 2013

One of those days...

This has nothing to do with DS. 

This has to do with being a mom. Period. 

A tired mom.

A tired mom with an infant.

A tired mom with an infant and toddler who doesn't feel great.

A tired mom with an infant and toddler who doesn't feel great and two other lovely children who are bored with winter.

You get the point.

Praying for patience today with myself and the kiddos. 
Praying for antibiotics if I take C to the doc (Pretty sure it is an ear infection)
Praying for nice weather this weekend so we can get outside.
Praying for my in-laws who are taking the older kiddos for vacation at their house next week.  (My angels in disguise!!)
Praying for everyone around me. (I am not usually this big of a crab)