A Strange Anniversary

A year ago today the doctor’s told us Eli had clubfoot, and then in the very next breath they told us he also had down syndrome. As you can imagine (and many of you know) Heather and I were devastated. One ultrasound started a terrible chain of events. In fact as I write this, it’s the time of day that we got our first look at Eli. Although at that point we didn’t have a name or even if he was a “he.”

Yeah, he was cute even then...

Even a year later, I can remember that day with perfect clarity. I suspect I’ll be able to do the same 50 years from now.

We’ve been through a lot. Most of which we’ve shared on either this blog or in other conversations. Clubfoot is a terrible thing to deal with, and there isn’t a day that goes by where our life isn’t impacted in some way by it.

If there’s something I’ve learned about suffering it’s that suffering refines your senses. It helps prioritize your life. And in it’s own strange way makes you appreciate the things you do have in your life. I haven’t regretted a moment of time with Eli. Not when he woke up every few hours to feed. Not when he only wanted to wear his “uniform.” And not when he threw up on me. And now that Eli has started to recognize when I come home from work, it’s even better. Because every day I’m greeted by a little boy who is so excited to see his Daddy that he can’t sit still (he starts bouncing up and down until I pick him up).

Every parent can experience that - but it’s extra sweet for me, because there was a time we didn’t know if Eli would live long enough to bounce with excitement. And suffering taught me that.

So while it’s easily been the worst year of our lives. Ironically, it’s been the best year too. Looking back we can see what God has done for us. We can see the Hope he offers. We can see the Encouragement he brings.

A strange anniversary indeed.

Eli's First Trip to King's Island

We decided to take Eli to King’s Island. We thought we were prepared. We thought we knew what we were getting into.

Yeah. We had no idea.

Not even an awesome Batman bathing suit makes him feel better!

One of the biggest challenges we’ve had with Eli is getting him out and about. We joke that he’s a “man of leisure” because he hates being uncomfortable. And while he was in casts 24/7 we found it really difficult to get him out of the house. Maybe it was Eli. Maybe it was us. Whatever the reason, being out in public has been a learning experience for us all. 

But that’s okay. We’ll be back. Eli’s going to like the water one way or another! :)

Eli's First Cold

We used to think that nothing could be worse than going through the first 24 hours after casting for clubfoot.  But now, we’re not so sure because Eli has his first cold.  Actually it’s probably the flu.  Which means he’s been feeling absolutely terrible.  So much so that over the last two days or so he’s made Linda Blair look like an amateur.

Unfortunately there just isn’t a lot you can do for a baby who is sick.  We’ve been able to rotate Tylenol and Advil every 2 hours or so (according to our doctor’s instructions), which has helped keep his fever in check.  This has helped a lot because there were a few times when Eli’s fever spiked to 102.  Eli definitely feels better when his fever is under control.

Don't Let this Leisurely Position Fool You - I'm sick!

Another trick we’ve discovered is that Eli, no matter how terrible he feels, still loves to watch cars drive by our house.   I always viewed living on a busy street as a drawback to our home.  But now, I think it’s the best feature our house has!

Of course Eli is like anyone who’s sick - he just wants him Mommy.  Unfortunately for Heather this means she has to carry him for about 8 hours while I’m at work.  And with Eli clocking in at over 21 lbs, that’s not something easily done.  (We’re tired, eating terribly unhealthy things, and haven’t been to the gym in months - but man, our biceps are ripped.)

In short, all of this has been a terrible experience.  But what makes it worse is we still have to deal with his braces.  In fact we’ve forgone the braces two nights in a row.  With his fever and inability to sleep during the day (he went over 12 hours without a nap earlier this week) we felt that the most urgent health issue is battling his cold.  We need him to get rest, and he simply doesn’t sleep well with his braces.  We did try putting his braces on last night, which worked well until about 4 hours after he fell asleep when he woke up screaming.  And then promptly threw up on me.  Eli - 1, Daddy - 0.

If there is a silver lining, it’s that Eli seemed to miss his braces when we put them on for nap yesterday.  Maybe there is some hope after all!

Downstairs bathroom design

Downstairs bathroom design by mrs-heatherbarrett on polyvore.com

In the midst of all the chaos, we've still found a bit of time to start thinking about our next round of house projects.  This time we're starting with some minor decor changes in the downstairs bathroom.  That is, if Eli ever decides to take a nap...

A Cry of Terror

There are few things more terrifying than to be woken up to the sounds of your child screaming.  That’s where Heather and I found ourselves two different times in the last week.  After an already difficult week, we were both exhausted and drifting off into sleep.  We were excited because Eli was asleep.  And we are always excited when Eli is asleep at night!  

But the night was to have other plans.  Just as we drifted off into sleep, Eli woke up screaming as loudly and panickedly as we have ever heard him.  He was so loud, that at first we thought maybe it was coming from someone outside.  (But no, Eli just has a set of lungs when he needs something.)

Heather and I rushed into Eli’s bedroom to find him sobbing uncontrollably.  Now this is unusual for Eli.  He’s a very even tempered kid who only cries when we don’t feed him fast enough (according to his own judgment of course!)  To find him crying was unusual.  To find him crying in terror was panic-inducing.  Both of us felt a sense of dread.  Something I hope we never feel again.

The problem with clubfoot is that when your child is acting “funny” (in this case screaming) you’re never really sure why.  Usually the problem isn’t with his braces.  Usually it’s because they want food, changed, or simply miss you.  But your mind always races to the braces first.  You’re always afraid that there is something terribly wrong with them and that we’re actually causing him pain.

As the minutes passed Eli simply wouldn’t calm down.

After a few more minutes we took off the braces.

Fortunately that did the trick.  Eli settled back into sleep.

I’m not sure I can explain how chilling that is to a parent.  You know that the best thing for him is to wear his braces.  But in the back of your mind you wonder if you’re actually hurting him.  Everything in your body tells you that you need to protect your kid from pain.  As a parent you’re torn from following the medical treatment (I still remember the doctor’s dire warnings of what can happen if you don’t follow the 12-hour rule) and making sure your kid isn’t suffering.  I’m not sure this will ever get easier.

That’s why brace non-compliance is so easy to fall into.  Something that Victoria graciously shared with us in a past guest post.  The grueling nature of dealing with clubfoot wears you down.  It’s a literal 24/7 battle.  For me this has been the hardest part of dealing with clubfoot.

In the end we didn’t put the braces on and Eli had a great night’s sleep after that.  But we never found out what made him scream with such terror or force*.  Hopefully we’ll never find out. 


*our best guess is that he slept with his legs straight up in the air, and they fell asleep, which is what made him scream. 

Finding Light in the Darkness

It's be almost a year exactly since our 20 week ultra sound that showed the challenges our family would face upon Eli's arrival. To say this year has been challenging would be an understatement.

The first of thousands of pictures of Isabel with her little brother :)

There have been times where we have thought there just isn't much more we can take. That we just weren't going to make it. That the heartache just wouldn't go away.

But those are all the little lies that Satan whispers in our ears. Our deepest fears and insecurities are what Satan loves to thrive on the most.

The truth is, Eric and I did not do any of this alone. When all of this started, my brilliant husband had an idea, a very brilliant idea. He sent out an email to some of our most trusted God loving friends AKA our Prayer Warriors, asking for help. Big prayers. Healing for our baby. Eric and I were in such a state of shock that we knew we could not carry the burden of this on our own. We needed community to carry us though.

Before we knew it, there were people and churches around the world praying for out little man. The outpouring of love, food, prayers, and support were completely overwhelming. And the results of all those prayers miraculous.

Our baby alive and well!  Crooked feet and all :)

As we mentioned in a post last week, the last few weeks have been rough. Eli had his 6 month appointment with the pediatrician. We were told he was developmentally delayed. We had our first appointment with Help Me Grown where they also confirmed that Eli was developmentally delayed and qualified for some additional services (more on that in a later post). All of which resulted in Eli having a MRI done on his brain.

So incredibly stressful as you can imagine! And once again my hubby sent out an email asking for prayers.

Batman waiting for his MRI

In recovery sleeping like a angel :)

At 7 months, Eli was still unable to sit up, push up, roll front to back, was having a difficult time rolling back to front, and wouldn't even put his feet down to attempt to stand. The day after the MRI, wouldn't you know, Eli didn't start to do just one of those things, he did ALL of those things!

Sitting like a champ!

That's some awesome neck strength :o)

Yesterday, Eli had his 7 month appointment with the Orthopedist. Considering all the issues we have had recently with his braces, keeping them on, getting a good fit, and his general dislike for wearing them at bedtime, Eric and I were really nervous about the upcoming appointment.

After almost a hour and a half wait to see the doctor, we were taken back in to see the doctor and told the news I had longed to hear!  Eli's feet looked wonderful!  They said his heel cord looked great and it didn't look like he was going to need surgery again!  And no more appointments for the next 5 months! Praise God! And thank you to our Prayer Warriors for making this moment happen!!

I hardly knew how to react. I almost cried out of habit. This time I fought back the happy tears, picked up a bucket of chicken from KFC, and we celebrated a simply wonderful week!

Yep, it was awesome :)

It's Been 4 Years...

Today marks the four year anniversary of one of the best days of me & my daughters lives. The day my daughter & I were dressed as princesses, doing laundry in the basement of our apartment complex, when we would run into the handsome man from the parking lot.

Anyone who knows Isabel, knows she doesn't know a stranger and is anything but shy. This day was no exception. And I was SO embarrassed dressed like a princess and all! Isabel walked up to Eric and said, "Hi I'm Isabel, this is Mommy. What's your name?" The conversation continued through a full cycle of laundry. And so the story begins...

My daughter opened the door to some of the best 4 years of our life. 3 days later we went on our first date in Newport, KY.

This was no ordinary first date... The conversation on this first date went much deeper than the usual  first date conversation. We talked about our faith, God, and hopes for the future of our families. God's finger prints were all over this date. I had never ever talked to anyone about my faith or God. Much less to a guy, on a first date, that I was hoping to be in a relationship with. But the words just popped out of my mouth easier than any other words I had ever spoken. The conversation was unlike any I had ever had. And I knew, I was in love.

Two years later to the date Eric and I closed on our first home. A few weeks later, we were married.

I believe, even in the first moments of our meeting, God had his hands all over our relationship. He had a perfect plan for us. God gave me the perfect mate to face the challenges that would come our way with Eli.

I could not imagine getting through clubfoot with anyone else! God truly does have the perfect plan for our family and when things get difficult, as they often do going through treatment for clubfoot, I have to remember all God has given us, all we have been through, and that God has always pulled us through the seemingly impossible.

God gave me an amazing, strong, man of God to walk by my side and hold me up.  I am forever grateful for that day in the laundry room when our lives changed forever.

I love you babe. Thank you for doing your laundry on a random Wednesday, in the middle of the afternoon ;o) Four years later, and I am almost over the embarrassment. HA!

My one year house-iversary gift :)

It's Been a Rough Week

We try to keep things pretty upbeat around here.  Faith, Feet, and Love is really a blog about hope and about persistence.  It’s about not giving up or giving in.  But that doesn’t mean we don’t feel the grind.   Eli has had a rough time, and so have Heather and I.

We have overcome a lot with him, not just his feet.  We’ve had to wrestle with a diagnosis of Down Syndrome. We’ve been told he may have a fatal kidney issue.  We panicked as Eli tried to choke himself during delivery.  We’ve had a constant struggle with getting the right shoes / braces for Eli’s feet.  And now we’re scheduling an MRI to figure out why Eli is growing so fast.

Babies are supposed to grow about .5 inches / month.

Eli has grown 4.5 inches in 2 months.   On top of this, he seems to be having some issues that may or may not be related to Chiari.  (update: they are not!)

What made us start noticing these additional problems was the way Eli’s behavior changes at night.  He doesn’t seem to mind going to sleep or wearing his braces during nap time.  But when it comes to bed time he throws a fit.

 It’s hard enough to deal with all the sleep issues caused by braces, not to mention the developmental delays that Eli is facing because of his massive size and braces.

There are days when, as parents, we just want things to be “normal.”

Of course, the “benefit” of all of these medical issues we’ve had with Eli is that we have a very good idea of just how bad (and how quickly) things could be worse.  And for that, we’ll always be grateful for a merciful God.