Thursday, January 30, 2014

A Guest Post: Surviving Plagiocephaly and Brachycephaly

A few months ago, I was contacted by the team who works for Sarah over at the Baby Flat Head Syndrome website... they had run across Hunter's journey with his DocBand and asked me to write a guest post in order to help them raise awareness for Plagiocephaly, Brachycephaly, and other forms of 'flat head syndrome' in infants.

Sarah is doing an amazing job at raising awareness for what she calls 'baby flat head syndrome'... and if you know us at all, you'll remember our own 'baby flat head'...

Remember him??

I barely do!

Sarah's biggest goal is to decrease the number of infants who have to be treated with bands by providing new parents with all of the information they need about the importance of tummy time, new pillows that help decrease the chances of 'flat heads', and by describing in amazing detail exactly how bone structures change when a baby's head starts to flatten... like our sweet boy's did; 

I was so honored that she asked me to help her with such an important cause and with something that is so close to my own heart!

Head over to Sarah's blog to read Hunter's story and be sure to leave her some love, too... and if you know anyone who is expecting a baby or who has an infant, please click 'share' and help Sarah raise awareness!

Sarah~ Thank you so much for all you're doing for this generation of precious babies... and thank you for the opportunity to share our own story that is so close to my heart!

Tuesday, January 28, 2014

Parenting, Justified.

Today was a rough day.

Like, super rough.

We started our morning on the wrong foot...

In short... lots of 'no's', lots of yelling, lots of 'growling', some throwing, some spitting, some crying, and a couple prized possessions found a new place on top of the fridge for a couple days.

(I'll leave it up to you to decide who did what...)

Our car-ride to school was quieter than usual, though I did try some small-talk...

Me: Did you know that it's supposed to snow today?

Me: It would be a good afternoon for some hot cocoa! How does that sound?

And so on.

I love year 5.

Thankfully, I hear those conversations get better when they're in high school....

right? :-/

I kissed her and told her I love her before she got out of the car but how do you have a good day when THAT'S how it started?!

These days make me sad... for both of us.

I was determined... our afternoon was going to be so much better!

Cue; yelling, screaming, spitting, snot, sweat, bloody nose (result of floor-throwing fit)...

(I'll leave it up to you to decide who did what...)

(And don't think for a second that our preemie of a boy wasn't part of it all, too... monkey-see, monkey-do!)

Nap/ rest-time came early today.

I love year 5.

Our evening was better... snow-playing, cereal-eating, movie-watching, cocoa-drinking, pretend-playing.

Love those moments... cherish them.


I'll let you figure out how that went...


I love year 5.

Have you had days like this?

Are you a parent?

Then yes... yes you have.

I sat outside her room after I kissed her 'good-night' and listened to her sob...

My head knew that in reality, the part of her that missed her beloved 'heart pup' was real... but the part of her that was sleepy and defiant and 5 was fake.

Still... those sobs... my heart. 


So I stood outside her door... 

 I prayed that Jesus would give me patience tomorrow... asked Him to forgive me for losing it today.

I prayed that Jesus would teach me discipline tomorrow.. asked him to forgive me for my defiance today.

I started thinking about how often we complain about 'ages'... the terrible 2's, 5 years old, pre-teen, teen...

We vent about their impatience and defiance and tantrums and disobedience often.

I started thinking about all of the different things that play into those ages and stages...

and I realized that each and every age and stage has two things in common...




Them, as in the 2 or 5 or 15 or 21 year olds.... and Us, as in, the 25 or 35 or 45 year olds.

And as I stood outside her room,I fell into a mental, momentary panic as I thought about our day, one more time...

the yelling, the impatience, the disobedience, the defiance, the stubbornness...




Oh, no.

Year 30.

With Hannah's sobbing still audible in the monitor, I came downstairs and opened my Bible... I needed some guidance... some perspective about this whole parenting gig...

because today, I failed.

It didn't take long for my big Jesus to speak to my aching heart...

Ephesians 6:1... Children, obey your parents in the Lord, for this is right. Honor your father and mother that it may go well with you and you may live long in the land.

That's about it for kids... obey and honor your parents. Simple.


Proverbs 22:6... Parents, train up a child in the way he should go, for even when he is old he will not depart from it.


Ephesians 6:4... Fathers, do not provoke your children to anger, but bring them up in the discipline and instruction of the Lord.


Colossians 3:21... Fathers, do not provoke your children, lest they become discouraged.


James 1:19... Know this, my beloved brothers: let every person be quick to hear, slow to speak, slow to anger;


This parenting thing is hard, huh?

The standard is set high.

So many equations are running through my head...

In order to TEACH obedience, we have to FIRST obey.

In order to TEACH patience, we must FIRST practice patience.

In order to INSTILL wisdom, we must FIRST seek wisdom.

In order to TEACH honor, we must FIRST learn how to honor.

How many of those am I really good at?! How many have I mastered?!

How many do i work on every. single. day. ?!

Rough days will happen... and unfortunately, we are wired to remember the bad one's and not to savor each moment of the good one's.

Today was a rough day... not because my daughter is 5... and not because I'm 30...

because age doesn't matter.

Today was rough because we're both still learning... how to be patient and listen and obey and be disciplined and how to honor one another.

But at the end of the day, in this thing called 'parenting'...

age really does matter.

I am 30... and she is 5.

I will never, ever, in all my years of parenting be able to justify parenting out of anger or impatience or defiance... 

even though my human nature will want to...

and no matter how old she is.

And I will never, ever, in all my years of parenting... be able to do it 'right' every. single. day...

no matter how old I am.

Today? I did it wrong.

But you see, what God NEVER said was that parenting is easy...

Genesis 1:31... God saw all that he had made, and it was very good. And there was evening, and there was morning--the sixth day.

A built-in do-over.

He knew... He knows. 


Do-over day.

Lamentations 3:22-23... 
His mercies never fail, 
They are new every morning.
Great is your faithfulness!

Thursday, January 23, 2014

Being jealous of my husband... Confessions of a stay-at-home mom

Can I just be real for a minute?

I've learned something in the past couple of weeks that I am so afraid to admit that the thought of typing my next sentence makes me sweat...

(cue sweating... ugh! I HATE to sweat!!)

I am jealous of my husband.

(Deep breath...)

I am jealous of my husband.

My name is Lindsay... and I am jealous of my husband.

Joey got a raise last week. Like... a big one. I am SO proud of him! He deserves every word of encouragement from his boss and every penny he works so hard to earn.

I was super excited for him ... for about 5 minutes.

And then I got jealous... of my husband.

I found myself wondering where MY boss was... the one who could encourage ME and give ME a list of things I do well and things I could work on in my every day role. I wondered when MY company handed out bonuses... first quarter or last? When can I expect a raise? Where would I get a promotion? How could I work MY way up in the company? When is it ok to brag about the amazing things I'VE accomplished in my job? 

It hit me hard... I am jealous of my husband.

This realization paralyzed me in the kitchen one night... I couldn't move.

How can I be satisfied in the place God has put me if there's even a hint of jealousy in my heart?

I wasn't.

And how can I fully commit myself to my work... to my kids and my family... if I can't find that satisfaction?

I wasn't.

It's not a good place to be...

but it hit me with such an impact that I couldn't just move on... I couldn't just sweep it under the rug and forget it...

so I did what I do...

I closed myself off.

Life is easier that way, after all...

for a while.

And then it creeps in... It wasn't possible for me to speak kindness into my husband's life... I didn't know the words anymore. I couldn't be proud of him or celebrate with him... the ability to share in his success was gone. I didn't want to know about his day and I didn't care about what was going on in his heart.

This worked for me for a couple of days until I realized something else that stopped me in my tracks...

The only common denominator in my choice to take part in the joys of life that my husband wants so badly to share with me or to separate myself from joy entirely...

was me.

I was the problem...

not his success or his job or his raise or his happiness...

it was all me.

All I ever wanted to be growing up was a mommy... it was an 'aspiration' that Joey just didn't understand when we were dating. 

aspiration; the strong desire to achieve something, such as success.

How is staying at home every day, playing with kids an 'aspiration'?

I wanted to be the main influence in our kids' lives like my mom was for us... I wanted to be present in the ups and downs of growing up... I wanted to teach them and be their confidante, their security for as long as they would let me... and selfishly, I wanted to be the one responsible for what they learned and how they use it...

I still want that.... every single day. And I know how incredibly blessed I am that I get to do exactly what I 'aspired' to do my whole life. 


Sometimes changing diapers, cleaning up puke, knowing the bowel movement schedule of every member of my family, being the bad guy, disciplining the same behavior over and over and over and over and over and over and over again gets mundane... it gets boring and dirty and exhausting. And the progress is slow in this job of mine... sometimes it's YEARS before you see the end result of the hard work you've done.

There are days when I long for adult conversation ...or a few hours alone in my car... or a fancy dinner out with colleagues... or to close my office door ... or a hotel bed all to myself... 

or to have my kids run into my arms every night because they missed me all day. I want them to miss me!

 Joey allowed me to close myself off for a couple days ... he knows me and knew I needed some time to process whatever it was that had changed me so quickly.

He cornered me in the kitchen this weekend ...

He's pretty big...

I couldn't get away...

So I confessed...

Without eye contact...

take that you big man!

(but I was super embarrassed and scared to death...)

"I'm jealous of you! I'm so proud of you and am thankful every day for how hard you work so our family can be comfortable and so I can live my dream, but lately I've been jealous of you. I don't have a boss who encourages me and shows me how to improve or tells me what's next in my career if I keep working hard. I don't get raises... ok yes, I get hugs and kisses from the kids and they run to me when they're scared or hurt... but sometimes, most times... that's not enough! I'd love to look forward to every Thursday because that's when I get paid. I need you to encourage me more... and maybe I need to learn how to ask for it.  I'll work on that. Don't get me wrong... YOU are not my boss! You're just the only one who's opinion matters to me when it comes to the job I do and how well I do it... And you do a wonderful job at telling me what a good mom and wife I am... You DO! But... I need to hear from you more. Please."

And then I looked at him... I braced myself for a lecture on how selfish I am and how I need to eat my words and take my own advice and find a job if I'm so unhappy...

 Because my rant deserved all of the above.

But after my rant, when I finally looked at him, his eyes loved me and he simply said...


(And then we made out because, well... That 'ok' was pretty damn sexy!)


And it was done.

My jealousy wasn't about his amazing success or raise...

All of my resentment and jealousy and anger toward him was completely misguided... and could have been completely avoided...

If I had simply asked for more.

I have no problem asking for seconds of cake or wine or frozen yogurt or shoes or pedicures...

So why can't I ask for more encouragement, too?

Now ladies... don't give me some lecture on how God is enough and if I would just focus on Him more I would find all of the fulfillment I need.

That's bullshit.


And you know it.

My attitude is a direct reflection of my relationship with the Lord... that's true.

But He put us HERE... on Earth... where our lives are molded around some dirty stuff; laundry, puke, mean people, deals gone bad, mortgages, and bowel movement schedules.

That's the truth.

And sometimes ... most times... my relationship with Him is a direct reflection of the mess I've created in my daily life.


My goal this year is to learn how to ask for more...

more encouragement, more 'me' time, more PDA, more help, more date nights, more girls' nights, more play dates, more conversation, more sex, more romance, more honesty, more family nights, more nights away, more surprises, more listening, more wine...

more love.

Just more.

Because all of those things are the good things we have this side of perfection.

And in this dirty life, getting more always means wanting more... but life is so dirty that more of the good things isn't a bad thing, right?!

Asking for it is the hard part.

And I'll do my best to return the favor...

because even though life's not fair and it can get pretty dirty, the very best part is knowing that you've done a little more for someone else, too.

Try both; Ask for more... And then give more. 


It works.

Monday, January 20, 2014

A phone call… “He’s tiny, just 2 pounds…” What exists in my memory now is fragmented; Heart… kidneys… liver… brain… lungs… short life… needs a family… tomorrow. So we went… nothing to guide us but blind faith. Some people would call that stupidity. We just felt called.

In my arms, the baby boy we had met only a few weeks earlier; born too soon, stronger than I could ever hope to be, and the one who had turned our world upside down in that short phone call.  Brown hair, wise eyes, easily held in one of my hands. His name always uttered in the same sentences as ‘miracle’ or ‘fighter’. And he was. He was fragile and sick, helpless and damaged to the rest of the world. To us, he was solid and strong, whole, with a life that was full of purpose… no matter how long that life would be.

His footsteps echoed down the hall. A doctor’s shoes sound different than anyone else’s shoes… and they bring with them the power to make or break you. Their faces, too; the stone-cold ability to make anything look and sound okay. But it’s not always going to be okay.

This time, nothing was okay.

Blood work, tests, ultra-sounds and MRI’s… all leading to one short sentence that carried with it his future… and our hearts.

“Your son will die soon. I don’t know how much longer he has or if he will ever make it home but I want you to know now so you can make plans. There’s nothing else that we can do.”

In the haze of heartbreak, questions I couldn’t voice, and with the almost weightless, but living body of my son lying in my arms, one word echoed in my mind… it’s sound was deafening.


Panic set in. It was one of those moments when the walls close in, your line of vision narrows, and all you can hear is the screaming in your heart and mind. Plans?! How in the world do you 'plan' for your child to die?! How can I possibly make plans without my baby?!

And in the midst of my panic, the word echoed again. This time, its sound was almost as silent as my son’s body was almost weightless. This time, the word came from somewhere else… from a place so deep inside of me that when it speaks, I know to be still and listen to its wisdom.


“For I know the plans I have for you, says the Lord. Plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11)

And in the impossible quiet in the far corner of the NICU, my head cleared, my mind hushed, and my heart listened. Our futures, our stories, have already been written... and they weren’t written by a NICU doctor, or the executives at work, or the pastors at church. Our stories were written by the Great Physician, the CEO of our existence, the greatest story-teller and prophet that ever lived. Damage simply cannot be done to God’s plan.

The word swirled around in the narrow haze of darkness until it settled snuggly in a part of my heart that has been forever changed.


Rooted in my heart is the knowledge that God’s plan is perfect even amidst our imperfections, amidst the damage that has been done to us… from birth, through tragedy, or by the choices of someone else. In a fleeting moment in time, circumstances and opinions often cloud what our hearts know to be true…

We can always find hope in Him… even in the most hopeless moments of darkness. He won’t harm us... Even when it hurts. We do have a future… and even if it’s physicality is short, it’s eternity is forever.

It’s never safe to assume that God’s gentle and encouraging whispers will always cover the inevitable panic and chaos that is this life. They creep in and try their hardest to persuade you to yield to the noise and fear. Being still… listening… quieting the turmoil that surrounds you, that tries to convince you that the damage is done… things I’ve had to learn over and over again since the day I sat in the corner of the NICU, crying out to God, holding a life that he created perfectly in my arms.

But that day? The day that started the end of his life? That day was almost 2 years ago. Today, our son, our fighter…. He’s strong and determined and healthy. He’s our walking miracle. The damage that was done to his body is still there but what came next, what’s still coming, is more powerful than any damage that could ever be explained by any doctor…


There are days when the damage is done- When life simply can’t hand you anything more because you’re already so broken. Our hope lies in knowing that physical damage is never permanent; totaled cars are recycled for parts, broken bodies are put back together, lies told are always uncovered, shattered souls find hope, lives lost find eternity with Him.

That day … the damage didn’t come in the form of sickness or death and the real damage wasn’t done to our son. The damage was done to our hearts and to our faith and to our purpose, and it was done in the most beautiful and miraculous of ways.  We are forever changed; forever trusting in His plan that is perfection … regardless of whose shoes are walking down the hall, whose face turns the corner, and what tragedy lies ahead. We can try and fail, believe and be disappointed, or dream only to wake up… these things, in this life, in His plan, will be okay. Healing can be found and damage simply can’t be done to God’s plan.

Thursday, January 16, 2014

When routine doesn't feel so routine...

Hunter is scheduled to have his 3rd sedated hearing test tomorrow morning.
It's just a routine test.. but they never feel 'routine' to the Mama.

Hunter's has had his hearing aids since May (if you haven't seen his video... WATCH IT!)  and tomorrow will be his first ABR since then.

An ABR (Auditory Brainstem Response) can be done in an Audiologists office... for the 'normal, quiet child who will sit still for 2 hours while electrodes and plugs are placed in and behind their ears'.

Have you ever had one of those?!

If so, I don't wanna hear about it.

Hunter is NOT that child.... thankfully!!

He's a wrestler... he's a yeller... he's easily distracted... he's BUSY! He does NOT sit still... or take a nap in my arms for 2 hours... or tolerate anything but his hearing aids being stuffed in his ears.

When this ABR was first mentioned it didn't take long for me to refuse the in-office ABR... I'd rather not put Hunter, the doctor, and myself through that inevitable h**l.

So... here we are. I hate the thought of sedating my baby... again. I know it's 'routine'... I know it's absolutely necessary... and I still hate it.

Forget not eating for 12 hours before ... forget how early I have to wake him up...  forget watching a nurse walk away with part of your life...

it's signing the papers, acknowledging the risk of death, and releasing anyone of responsibility... it's the hardest part.

'Routine' just doesn't feel so 'routine' when your pen hits that paper.

Hunter will be fine. I know this. How?

 He's a wrestler. He's a yeller. He's easily distracted.

He's here.

But Mama? The verses will rotate in my head and what I know will fight to stay at the forefront of my mind... but part of my heart will be missing for 2 hours until my baby is back in my arms.

It's not about me... please don't get me wrong.

But these things just don't get any easier... for any of us. And tomorrow, I'll be doing it alone... 'routine' doesn't accommodate work schedules as often as 'routine' happens around here... and big sister gets some one-on-one Daddy time tomorrow morning before school :-)

Once again, I'm going to ask you to pray for Hunter's test tomorrow... for his breathing to remain stable and his airways open (my biggest fear)... for him to go to sleep and wake up easily... for the nurse who will walk away from me with him... and for the technicians who will be in the room with him. Pray for his Daddy who will be fighting this distraction while he's in meetings all morning. Pray for his big sister... she's pretty clueless but she deserves a good day, too ;-) Pray that Hunter won't sense my anxiety but that his morning will be as calm and as 'routine' as possible.

At the end of the day, we'll know how well Hunter's hearing aids are helping him, if they're set at the right thresh-holds, and how we can proceed from here in helping him fill in the missing pieces of his hearing loss...

It'll be a good day... just a long one ;-)

I haven't posted an update for you lately on Hunter's progress and I think the video I captured today during speech therapy sums it up pretty well...

And everyone needs a little bit of Hunter's laughter in their lives ;-)

As Hunter gets used to new sounds and continues learning how to understand the new words he's hearing... as we work with his AMAZING therapist to teach him how to follow directions and put words with objects... once in a while, a word or phrase will tickle his ears... and the sound that comes from him is contagious... the best sound in the world!

Listening to this boy... who never should have lived, none-the-less crawled or walked or talked... listening to him understand words and find them funny... it's music to my ears.

A miracle every single time.

Did your day just get a little better?

He does that to people :-)

I'll post an update tomorrow... and probably a picture or two of our sleepy boy!


Intimacy in the cemetery...

They pulled in quietly and started down the winding path through families and memories... Generations of stories and undoubtably over millions of tears dried into the harsh, dried ground.

He parked his blue truck in the middle of the cemetery. 

He didn't have to... The road would wind through the stones ... but he stopped.

He got out of his truck, walked around the truck and opened her door for her. He held out his hand and helped her down... he kissed her cheek.

Her husband.

He got back in the truck and watched her... 

She had trouble walking ... age wasn't her friend, but she managed... Alone. She walked far ... always remaining in his sight.

His eyes never left her.

I wondered how far she would walk... Why he didn't just drive her all the way... Why she was walking alone.
I was struck by his strength... watching her walk away toward something he obviously wasn't a part of... respecting her in the deepest, most profound way I have ever seen.
I felt the most unexplainable mixture of emotions as I watched, waiting to see the ending of this already-beautiful scene unfolding in front of me... I was an intruder, watching from afar, but completely paralyzed... I couldn't look away.

She finally stopped... She was tired. Breathing hard.  

She bent over and touched a flower that graced the stone that sat deep in the earth... Covering a life that is so obviously deeply missed.

She knelt down to her knees... quite a challenge but important to her. She folded her hands, and placed them in her lap. She touched the earth... Looked at the sky... Bent her head...

I glance back at him... Still in his truck...

His head was bent, too.

She stood up and started her long walk back ...

I don't know who she left behind. Her mom? Dad? Was it a child she lost? A husband from before? If so, before what? 

He let her walk the path back alone but met her a few feet from the truck and wrapped his arms around her. They stood in that place for what seemed like an eternity... And then he helped her back into the car. He backed up slowly and they were gone.

But I was still there... somehow changed.

I have never witnessed such intimacy as I did today while waiting to pick up my sweet girl from school. 

His gentle kiss on her cheek. The way he watched her walk away... protecting her and wanting to respect her need to go alone, but torn as he watched his love walk away... toward something he wasn't a part of. He prayed when she did. The patience he fought as she walked back toward him, wanting to let her finish what she started... but wanting her back with him as quickly as possible. The relief even I felt when she was back in his arms. His gentle guidance as he made sure she was safely in her seat... back in his care... where she belonged.
Intimacy. Defined.
The scene has played over and over in my mind all afternoon... their story is remarkable. 
I don't know it.... but I know it's remarkable.
I don't know who she left behind in that cemetery... how often she visits... how many times she's had to walk away...
Their love was so genuine. His respect for her, for the parts of her story that he doesn't quite fit in to... so pure. The secrets they shared were haunting... the intimacy between them ran deep.
Sometimes God uses the strangest places, in the weirdest circumstances, with the most random people to speak to me.... today he used a cemetery, the only 15 free minutes I had, and a couple I now strive to model in my own relationships.

Remarkable, in deed.