The education

My first post of 2015! I had such a blissfully relaxing Christmas break & birthday but now I’m in that early January bummed out stage. No better cure than jumping in and getting back to normal.
I never take my kids to doctors appointments. Honestly, I rarely even bring Jason with me! But, I had a checkup the day after Christmas & we’d already spent so many consecutive days together, it seemed natural the whole family would stay together. So we did! It felt like we had just sat down when I overheard a conversation between mother & daughter next to me. In fairness, they were talking before I sat down & I’m speculating about the specific details but here’s what I heard. The girl, who looked to be in her late 20’s seemed to be around 20 weeks pregnant & was sitting with what I assumed was her mother. They were going over a folder of information. It appeared that the folder contained some test results & the mother was explaining what the results meant. The mother was pretty animated & speaking a bit loudly so it was hard not to hear they were talking about Down syndrome. Of all the days for David to be with me! The snippets that I was picking up included, “Down syndrome, not for sure, amnio & results.” In fairness, none of those are negative words so I shouldn’t have been immediately on guard, but of course I was, especially with my precious son 10 feet from them. Jason & I kept exchanging looks and finally I said, “I’m going to say something to them.” I walked over and said, “Hi! I just wanted to let you know, we had a prenatal diagnosis in this office of Down syndrome with my son over there and I’m happy to talk with you about it if you have any questions.” The girl was very kind and said, “Thank you, this is all very overwhelming.” Her mother, was a little less kind. She immediately started preaching to me about the current research, how only an amnio is 100% but that it causes miscarriages and how blood work isn’t accurate. I was flustered because a) I wasn’t expecting that kind of reaction b) I’m not as educated as I want to be on prenatal genetic testing beyond my own experience and c) she wasn’t kindly asking me questions and trying to get first hand information. She was aggressive and her words had a negative tone. I felt like she was trying to educate me! I explained that we had received a positive diagnosis through my 12 week blood work – big mistake!! She was quick to remind me that there are no positive or negative results for the early genetic tests that are out there. She’s right; there are higher or lower probabilities. But, because these tests are under increasing fire and there’s been some new studies completely debunking their accuracy at all, it seemed she was using those as her touchstone. She kept telling me, “They’re only 40% accurate.” (Seriously, she said it 4 times) The only thing I could respond with was, “Well, it was 100% correct for us.” Again, the pregnant woman was kind & kept telling me how cute David was while her mother asked me if I’d had an amnio and additional follow up questions. I was kicking myself because I was trying to be calm and an advocate for my son and instead I was flustered and stumbling for words. I did have the presence of mind to tell both women that my OB’s office handled our diagnosis wonderfully. The mother almost tried to argue with me about that! She insinuated that the doctors were pressuring her daughter to get the amnio or terminate. I can’t speak for their experience or for every doctor in the practice, but ours was as positive an experience as we could’ve hoped for.
I’m no stranger to the shock and grief that comes with a prenatal diagnosis. And I’m an advocate that everyone should feel and react however they need to. But this experience in the office left me uncomfortable. I felt so bad for the pregnant woman who was being, it appeared, negatively impacted by emotional information. The ironic part is my OB’s office has my business cards in their lobby since I work with clients and their reproductive mental health. My business cards were literally within grabbing distance! Why didn’t I offer to have her contact me? Why didn’t I refer her to the Rocky Mountain Down syndrome Association? Why didn’t I tell her about the Down syndrome Diagnosis Network?
I want to be the calm, bold, knowledgeable mother that makes Down syndrome seems less scary. I want to be a quiet advocate for David. I want our experience to reassure people & not be reduced to stutters if I’m confronted.
Here’s to hoping all three of us women leaned something in the office that day.
Here are great sources of information & education:
http://www.rmdsa.org
http://www.dsdiagnosisnetwork.org

Advertisements

The anniversary

One year ago today was a life changing day.  I’ve never before and fortunately, never since, experienced such fear.  I’ve never come so close to the edge and I pray I never have to be there again.

I can’t speak for all parents of special needs, but for us, on David’s journey, there have been celebrations, milestones and anniversaries along the way.  There’s of course, the day he was born.  The day we actually got to take him home.  The day his heart was “cleared” and cardio check-ups were complete.  But there are also days worth celebrating that you’d like never to remember.  Today is one of those days.  One year ago today David almost died.  I can hardly type the words, it still seems too dangerous to even write.  We were so close to losing him and even that day, my mind stopped me from going there.  What parent could?  So we prayed and cried and paced and literally clung to him and prayed some more.  And God answered our prayers.  David survived.

So today is our anniversary and that calls for celebration.  I celebrate that David is with us and cheer for the moments we’ve had over the past 365 days.  In the same breathe, I mourn the people we were before that horrible day.  We are forever changed.  In some ways for the better and in some ways . . . well, I guess we’ll see as time goes on.

David is a survivor and today, as difficult as it is to look back, it makes looking forward that much sweeter.  I’ve seen the dark side of “what could have been” and I much prefer where we are now.  Thank you for all who prayed for our sweet boy and continue to pray for him.  God willing, there are many milestones and happy anniversaries to come.

D

 

The fail

Last week David failed his sixth swallow study. I think six times can be classified as a pattern. Five previous fails almost certainly guaranteed another fail. But still, I cried. And on a week when I had just thought to myself, “Wow, I haven’t cried about David’s condition in months.” But I cried that day. So of course I started to analyze myself & try and figure out why I was crying. I didn’t have high hopes that his feeding tube would be removed, but I did have my fingers crossed that they might let us start some purée. Typical babies start “food” at 5-6 months. David 1st birthday is in less than two weeks & he hasn’t even had a bottle orally in over four months. And that’s when I realized, I was hoping for one ‘typical’ milestone. Yes, it might have been almost 6 months late, but I was hoping for the go ahead to start giving him some food. So what is it about ‘typical’? From the day we got our prenatal diagnosis & all the steps in between then & now, I knew that our lives wouldn’t be typical. I consistently say I’ve made my peace with “different” and yet I have a break down when it’s confirmed that he’s on his own path & not following a predetermined set of rules. It’s not fair of me to applaud & celebrate Down syndrome in one breath and then cry & mourn it in the next. Or is it? Is this part of the journey? Will my acceptance come in waves & stages? Probably. And that’s ok.
Right now David is sitting on my lap “talking” away. And today that’s all the typical I need.

The confession

Forgive me, blog readers, for I have strayed. It has been 37 days since my last submission.
Apparently, blogging is much easier when your life is in upheaval. Sick babies, an active toddler, trying to build a business, inclement weather & keeping my family in clean clothes is exactly the kind of drama my writing thrives on. June was calm. June was uneventful. There were more pool dates & girls nights than doctors visits & ER trips. There were way more giggles than tears & many more snuggles than needle pricks. Life is beginning to balance out. Thank you Lord!
We are fast approaching big D’s 1st birthday! But before we tackle that milestone, please accept these ridiculously adorable photos as my penance & my promise to blog and blog and blog like I’ve never blogged before.

20140707-172205-62525476.jpg

20140707-174759-64079835.jpg

 

 

The leap

Thank you, thank you Mark Batterson for this inspiring picture!

Quit living as if the purpose of life is to arrive safely at death.
Set God-sized goals.  Pursue God-ordained passions.
Go after a dream that is destined to fail without divine intervention.
Keep asking questions. Keep making mistakes.
Keep seeking God.
Stop pointing out problems and become part of the solution.
Stop repeating the past and start creating the future.
Stop playing it safe and start taking risks.
Expand your horizons.  Accumulate experiences.
Enjoy the journey.
Find every excuse you can to celebrate everything you can.  
Live like today is the first day and the last day of your life.
Don’t let what’s wrong with you keep you from worshipping what’s right with God.
Burn sinful bridges.  Blaze new trails.
Don’t let fear dictate your decisions.
Take a flying leap of faith.
Quit holding out.  Quit holding back.
Push all of your chips to the middle of the table.
It’s time to ante up all of your faith.
It’s time to go all in.
It’s time to go all out.

The charge

Am I the worst blogger ever?  Or maybe just the best mama ever?  Really, neither of those are true, but my sweet boy has been home for 5 days and has spent many minutes and hours of those 5 days in my arms, so my blog and writing inevitably took a backseat.  I have lot of stories and words in my head, but they all seem to disappear with just one smile from this one:

Image

Or when this happens: (they really are hugging – promise)

Image

Or when Ella wants to hang out with me:

ImageSee why it’s hard to focusing on blogging?  Life happens.

So, today I’m purposeful, focused and hopefully back on track.  I’m taking a page from Shauna Niequist again (either imitation is the sincerest form of flattery or I’ll be issued a restraining order soon).  But seriously, this woman is good, really good.  Who can read her words and not be inspired?!  And it helps that being purposeful and charging forward falls right in line with All In,  the book by Mark Batterson our small group has been studying this year.  I love this book because Mark speaks to who both Jason and I are at our core.  I am a dreamer and impulsive and will charge headfirst into almost anything; reacting first, thinking later.  Thank the Lord for giving me level headed Jason.  He thinks first, is purposeful, and logical.  He makes me calmer and wiser and I like to think I shake him up just enough.  He didn’t plan to marry a tall, blonde (ish), lover of over-celebrating everything, and although he rolls his eyes, I know he’s secretly happy to be along for the ride.

So, what’s next?  It’s a little late in the year for resolutions.  And besides, this year I focused on my un-resolutions.  But, a quarter of the year is over and that’s as good a time as any to reevaluate where I’ve been and where I’m going.  So, thanks to Shauna, I’ll spend the next few months of 2014 focused on:

How can I use what God’s given me to make the world better, brighter, more beautiful in this season?

And thank you Mark Batterson for adding just enough of a challenge and an edge to make me leap forward:

We can all be tempted to give up on something we know God wants us to pursue.  His will can be hard, and we can simply wear down and throw in the towel.  Check mark ONE area of your life in which you believe God wants you to CHARGE forward and then write ONE practical step you can take to move ahead.
– Your marriage
– Your finances
– Your health- An addiction you deal with
– How you relate to one of your children
– A goal you need to set
– A kingdom cause you need to enter into
– Another area ____________________

We heard tonight that the toughest step is the first step, go charge it!

The weather is spring like, my children are both under one roof and school is over for Jason next month.  That seems like as good a reason as any to charge, dive, jump and skip onto the next adventure.  Stay tuned!

The boulder

Thank you to my mother for this reminder:

One day God delivered a huge boulder to a certain man’s front yard. God said,

“Every day go out and push on the boulder.”

So every day the man did just that. One day when the man arrived at the huge rock, there stood the Devil.

“Why do you keep pushing on the rock day after day? You’re not making a lick of progress. The boulder hasn’t moved one inch!” the Devil chided. The man agreed.
The next day the man went to the rock but decided against going through the effort. A few days later when the man returned to the rock, there stood God.

“Why have you stopped pushing on the rock?” God asked the man?

“It wasn’t doing any good. I haven’t moved that rock even an inch.”

“I didn’t ask you to move the rock. I only asked you to push on it. You don’t see any difference in the rock, but do you see any difference in YOU?” Surprised, the man looked down at his new bulging biceps,

“Well now that you mention it, I guess I do!”

Check out my muscles! 😉

The ER

Name: Ella
Age: 3.5
Emergency room visits: 0

Name: David
Age: 8 months
Emergency room visits: 6

I wonder when this season of our life will be over? I wonder when we won’t have to be afraid for every cold & flu season? I wonder when Children’s Hospital and the amazing staff there won’t be a regular fixture in our lives.

I’m about to write something that might not make me very popular. I’m about to write the “thing that must not be mentioned”. Yesterday was World Down syndrome Day. My Facebook newsfeed was flooded with parents talking about how amazing their children are and how normal their lives are. I joined in! David is amazing and we truly feel blessed that he is in our lives. But, it’s not “normal”. Taking your eight-month old to the ER for the sixth time is not “normal”. I can’t wait for normal, I long for normal. I can’t wait to read back on earlier posts and remember what a difficult season this was. I can’t wait to be in the midst of friends and birthday parties at school and have this all be a distant memory. But so far, it’s not. So far, the hospital is our “normal”.

A Down syndrome diagnosis doesn’t guarantee hospital visits. There are many, many children out there who live perfectly typical even boring lives. Someday, we may be that family. But today, we’re taking our sweet boy to the ER again.

A Day in the Life

I knew it would happen.  That day when I realized, “This isn’t bad”, “I can’t believe I was afraid of this” and “Oh my gosh, I’m so happy David has Down syndrome.”  That’s right, I’m happy about his diagnosis.  He truly is the sweetest, happiest baby I’ve ever been around and he brings us so much joy.  His smile lights up the room and my heart melts when he giggles.  He couldn’t be any better and I wouldn’t ask for him to be any different.  He is cuddly and precious and having Down syndrome just makes him that much more awesome.  To any parent who has received a prenatal diagnosis or a surprise birth diagnosis, it will come.  The joy, the happiness, the overwhelming gratefulness that this little person is about to change your life.  We feel blessed to be ingrained in this little boy’s life.

Image

The 3 of us

While David is in the expert hands of the PICU staff recovering from pneumonia, RSV, corona virus & rhino virus (phew!), Jason & I took advantage of a snowy Friday night in with our first born. Ella requested pizza & Tangled and we took a page from “make the smallest things magical:101” and had a family picnic in our homemade fort.

20140307-194130.jpg

20140307-194146.jpg

20140307-194214.jpg

20140307-194230.jpg