What They Don't Tell You About Clubfoot Braces

Eli has a love hate relationship with his braces. He loves to hate them. (See what I did there?)

When Eli first got his braces, we were told by Eli’s orthopedist (who we love) and by the people who made his braces, that he would adapt to them. We even heard stories about how some kids love their braces so much that they name them. While we’ve named the braces, usually with 4-letter names, I’m not sure Eli will ever grow to like his braces.

You want me to wear WHAT to bed?

This is one of the hardest parts of dealing with clubfoot. Because Eli hates wearing his Dobbs bar, which, by the way, is infinitely better than the Mitchell brace, everything becomes a fight. It’s a fight to put him to sleep. It’s a fight to feed him before bed. It’s a fight for him to get comfortable. It’s a fight to keep his braces on at night. And it’s a fight to simply keep him asleep once he’s asleep.

And it’s only worse when he’s sick.

Right now we are in approximately week 6 of ear infections. Which means that Eli is in such pain as he tries to sleep that he thrashes his little body trying to rip his legs out of the braces. It’s as if he can only deal with one problem at a time: his ears or his braces. Dealing with both is just overwhelming for him. It’s rough to watch as a parent. And it’s rough to enforce keeping his braces on his feet.

Usually we like to use Faith Feet & Love to encourage and show people that there are solutions, and that there is a light at the end of the tunnel. But sometimes, the truth is, it’s just miserable. And that’s important too. Understanding just how hard it can be is an important part of surviving it.

Of course we hope that your experiences with clubfoot braces is better than ours. From what we hear, Eli’s reaction is on the extreme side. This shouldn’t surprise anyone. Eli has his mother’s love of freedom, with a healthy dose of his father’s stubbornness. So you might be luckier than we are. In the meantime, we expect Eli to start naming his ear aches before he names his braces.

Finishing A Kingdom Life is Hard

In the Bible, Eli was a priest.  He was in charge of all the priests of Israel and had a special place in teaching people how to worship God.  Eli started as an amazing priest, doing amazing things.  Someone who cared greatly for the things of the Lord (such as the temple and ark.)  But over time, he lost his way.  So much in fact, that his protege’s first message from God was one of punishment.  (Samuel was told to let Eli know his time was over, and Eli’s sons would be punished).

But Samuel didn’t finish much better.  After starting out in dramatic, bold and faithful ways, his sons too betrayed God and led Israel into a monarchy (instead of being ruled directly by God.)

God then chose to allow Saul to become King.  Saul was a humble (Samuel 9:21) and brave man (Samuel 14: 46-48).  But he didn’t finish strong either.  He became jealous, petty, and bitter.

This thrust David, soon to be Israel’s greatest king into the throne.  And as you might imagine David started strong, but lost his way.  David ended up committing murder to cover an affair.  Which I’m pretty sure are bad things.

All 4 men were likely more accomplished, more spiritual, braver, stronger, better than you or I.  In every way imaginable, they were men filled with amazing potential.  Yet they couldn’t finish strong for the Kingdom.  They all allowed life to get in the way of their faith.

There are days when Heather and I look at our lives and wonder how we’re going to get through the week.  We feel overwhelmed by doctor’s visits, sleepless nights, complications from clubfoot, and all the normal problems that come from raising a kid.  It’s hard to finish feeling like that.

On a nearly daily basis we have to circle back and remind ourselves of what’s important.  Remind ourselves that we have to stay focused on the realization that that our suffering (and Eli’s) isn’t permanent.  That things will get better.  And if they don’t, then God is still with us, and he’s still working powerfully in our lives.

I’m not saying it’s an easy thing to do.  Or that we’re particularly good at it.  But it’s something that we are both beginning to see.

As I look at our own Eli, I wonder if he’ll finish strong.  Will I be able to teach him to finish strong as his Dad?  Those are questions we don’t have any answers to.  They’re also the questions that keep me up at night more than any other.

But I am hopeful.  Hopeful because God doesn’t forget us, even if it feels like it.  But also hopeful because one of the things we’ve seen from Eli’s clubfoot that is a good thing is his determination.  He never seems to have an easy path.  Even getting over a typical ear infection takes multiple trips to the doctors, multiple types of antibiotics and shots.  Crawling was no different.  But through it all, Eli keeps working hard.  Will this last when he’s 15?  45?  90?

I have no idea.

But there is hope.  God never forgot Israel, even through the mistakes of Eli, Samuel, and Saul.  And in the end David managed to pull it together.  After making terrible, terrible choices, he repented and finished strong.  There is always hope, but the hope isn’t in our own abilities, it’s in what God has to do.

Fruitless Worry

Two things I am shamefully good at. Worrying & being too prideful to admit when I need help. I am super Mom after all. I must never fail.

The truth is I fail each time I worry. I fail each time I am too proud to ask for help.  While I am spending time worrying, being burnt out and overwhelmed, my kids and husband are only getting part of me. I am not really ever fully present when I am consumed by thoughts of doubt, fear, and what if’s.

When I took Eli to his 6 month appointment in May it was determined that Eli was severely developmentally delayed. I. Was. Horrified.

I cried. A lot.

I felt as though I had once again, completely failed as a mother. It wasn’t bad enough that my son had bilateral clubfoot and has kidney disease; he also has to be developmentally delayed?!

Really God?!  

Our wonderful pediatrician, Dr. Manfroy, as you may remember, ordered a MRI to see what was going on with Eli’s brain. And then he prescribed a good dose of humility and suggested that we get help from Help Me Grow.

Gulp.

Working as a Special Needs Coordinator for our local Career Tech school I knew about Help Me Grow. My prideful self also never thought we would be the type of family that would need services from Help Me Grow.  I am super Mom after all right?!

After talking it over with a few of Eli’s doctors and nurses (I can’t seem just trust one specialist… Why? Because I have officially taken up residence in Crazy Town thanks to all my worrying hahaha) Eric and I determined this would be the best thing to get Eli the help he needs and to get him on track with his peers.

Our first meeting with Help Me Grow was an eye opener. I think I had lived the last 6 months in a state of denial.  Or maybe I just didn’t realize how delayed he was until he was evaluated. That led to a whole other set of worries, which then lead to more stress at home, more tears, and a pretty crappy summer.

All for what?! Worrying wasn’t fixing my baby. It was making me CRAZY! 

This brings me to last night. Eric and I were at training at our church, Crossroads, last night. While we were there we were working through an exercise that allowed us to share a bit of our story of Eli with others at the table. As we were praying as a group, Aaron, a man from Atlanta spoke up and said that he really felt like God was telling him to pray over us. His prayer was really amazing. I felt it through my entire body.

Afterwards, the groups dismissed and the man who prayed for us said that while he was praying he felt God telling him that God entrusted us with Eli. He also said God told him that Eli is special, not to be seen as a burden, but as a gift.

God has spoken these words through other people on many other occasions. This is the first time I think it has actually resonated with me. I haven’t been able to get his words out of my head.  There’s just something about hearing those words from a stranger; someone who hasn’t been down this long road with us. A person we just met moments before.  

Maybe Eli really has been set apart.  Maybe there is something special about my baby above and beyond what we as his parents already know.

That’s the funny thing about God. He just keeps showing up until we get it. I think God sent Aaron last night to our table so I would finally “get it”.

God, thank you for the gift of Aaron’s words, sending help, and putting my heart at ease.  I finally get it! I can rest easy knowing Your plan for Eli is far better than anything I could make happen on my own. Eli is part superhero after all ;o)

 

Proud. Really. Darn. Proud!

As I type this, big 'ol happy tears well up in my eyes. Today goes up as one of my most proud, happiest parenting days, thus far with Eli! In fact, it's been so awesome I just couldn't stand to wait to share :)

As many of you know, I've never been much of a patient person... and when I am excited... Watch out! Hahaha!

What has me all excited, ready to run the streets of Norwood shouting out the crazy awesome happenings?? It's SO awesome you have to see it with your own eyes :)

 

I think it's safe to say, that I am the most proud Momma in the world tonight. I know some might find me crazy for being so excited over something so basic, but after watching Eli struggle the last ten months to meet milestones and fight through the pain of physical therapy, I can help but have my chest swell with pride over my little mans huge accomplishment! Right. On. Target!

Happy 10 month's munchkin man!  You are a true rock star and teach me everyday to never underestimate the power of prayer and just how much of a freaking fighter you really are!

Getting Back to Normal

This weekend, for the first time since Eli was born, I was able to get up in the morning and make breakfast for the family! Woohoo!! Once breakfast was on the table, I looked at Eric and said, "gosh it feels so good to be getting back to the good 'ol days!" Getting breakfast on the table was a huge sign for both of us to how far we have come.

The last 15 months have been grueling. Some days it felt as though we were merely surviving the day. Living for rest. Trying to man up through the heart ache just so we could try and get through yet another day. Praying the next day would be easier than the last.

Even poor Isabel was feeling the grind. It's been hard on everyone.

Eric, Isabel, and I were lucky enough to escape for some good 'ol family fun (minus munchkin man) thanks to my wonderful former mother in-law.  (Talk about God's sense of humor and the power of forgiveness.)

While we were walking into Kings Island, Isabel said to us, "having a little brother is hard... having a little brother with disabilities makes it much harder." I realized then just how hard the last 10 months have been on her.  Even with as much as Isabel loves her brother.
While we have been managing all of Eli's doctors appointments, trips to Children's Hospital, physical therapy appointments, Help Me Grow visits, & just trying to figure out how to be parents to a kid with a disability, Isabel has inadvertently taken the back seat for the last 10 months.

A day alone with Mom and Dad, riding roller coasters, was just what Isabel needed!



This is the look of a girl who is happy to be getting some undivided attention!





My baby is almost getting to big to carry! When did she grow up?!



After an awesome ride on the Racer!



A little nervous waiting in line for her first ride on the Vortex :)



We managed to get a smile out of her!



Smiling through the fear :)

She made it! And LOVED it!

  

All smiles today!!


We wrapped up the day with a surprise trip to Orange Leaf (I think I am going to get fat now after finding this little piece of heaven!) Thanks to my little sisters suggestion we all left with smiles on our face :)

It feels great to finally get out and have some fun again, to not be wrapped up in all of Eli's needs for a day (he is going to be OK if we lay off for a day lol ), and just have fun! I know this is something that the Barrett's need more of in their life :)

Eli's First Day at Kinder Care

Today was Eli's first day in daycare. Eric and I were both incredibly nervous. I woke up at 1:30 this morning, unable to sleep. The anticipation and nervousness was getting me.  I don't handle change well :) The whole drive out to the daycare I was fighting back the tears. You know the ones that make it hard to breathe. I just couldn't imagine how they were going to be able to handle Eli's needs.

Eric and I talked to several facilities and finally decided on Kinder Care in Blue Ash after our visit there. They really impressed us with their willingness to accommodate Eli's physical needs. They didn't even flinch when we asked them how they would handle his medical and physical needs. The best part about was, after talking to Eli's physical therapist, we found out she sends her kids to the same facility. She is going to be able to stop in and work with Eli in the mornings after she drops her kids off!

Totally. Awesome. Gods hands are all over this baby. I'm sure of it! Things like this are no coincidence.

Even with all the wonderful things we were hearing about Kinder Care, and knowing that Eli was going to continue to get physical therapy during the day while I was at work, all the what if's started rolling through my head. What if Eli freaks out and cries all day, what if they can't get his braces on right and they damage his feet, what if they leave him sit all day and he looses all the progress he has made all summer... what if, what if... I admit, it was a little crazy :)

Just got out of the car and looking brave :)

Ready to go in and not too sure about all of this! He looked how I was feeling lol

When Eli got up to the door to his classroom we were greeted by this:

My heart swelled! Something so simple made me feel so good inside :) They thought my baby was special enough to put a welcome sign on the door :) I gave the head teacher the crash course on Eli's braces and probably told them a million times to call me if they had any problems getting the braces on (poor ladies :))!

I swore I wasn't going to be "that mom" but there I was, being the overly protective, crazy lady in the room, lol.

I kissed my baby goodbye about ten times, walked out the door, and choked back the tears until I got in the car. Thank God for waterproof makeup :)

I managed to make it through the day without calling to check on the little man but as soon as the clock hit 3:30, I was out the door! I could not wait to see Eli!

I was greeted at the door by the head of the location and she told me that Eli had a good day. She said, he cried a bit and seemed to be missing us but that was to be expected. My heart broke :(

I finally got down to the classroom and burst in the door to see my little man. I was so excited to see his face when he saw me. What did I find? Eli fast asleep, in his accommodated crib (totally awesome!), with his braces perfectly on his feet! The head teacher in the room took the time to train everyone who would come in contact with Eli on how to put his braces on! I almost broke down right there! Eli really does have teachers who care about him. And really that all a parent wants for their kids right?

Here are a few pictures from the day:

So excited to have my baby back but he was more interested in looking at me than the camera :) I guess he did miss his momma :)

I know I am adorable Mommy!

Daddy and Eli

Eli has started climbing us these days lol

Eli LOVES his big sister!

Sophie the Giraffe

As many of you know, Eli has been sick, very sick for the last two weeks. Between the ear infection, bladder infection, a few crazy viruses, and this rash, it's been quite the miserable week!

Poor little miserable man

covered head to toe :(

This week, finally, Eli started to feel better, had finished both rounds of antibiotics, and act a little bit more like himself :) I decided that would be a really good idea for Eli and I to get out of the house for a bit to do a little back to school shopping while his sister was with her Dad for the week. After all, let's be honest, shopping for a 7 year old is so much easier when they aren't with you! Ha!

Our first stop was Pottery Barn Kids. As I am looking through all their super cute Halloween items, I look down and noticed Eli had swiped a Sophie off  the strategically stroller height basket. Not only had he swiped it, he was drooling all over it!

I have heard that kids LOVE Sophie the Giraffe, but at a $23.50 price tag, she isn't really a cheap chew toy! Eli apparently was no exception!

Kids love me :)

Feeling a little sorry for my recovering baby and considering Eli had claimed Sophie as his own by spreading his drool all over it, I went ahead and bought it. Luckily, I had a PBK gift card in my wallet and only had to pay a few dollars difference and Daddy didn't have to suffer sticker shock heart failure :)

Thankfully, Eli still loves Sophie and everything else he has swiped off shelves at other stores. I guess our little man just knows what he likes!

So we want to know, have your kids ever taken things off store shelves that you were later forced to buy?