We are back!!

After a really long break from the blog, we have decided to revive it! And with some pretty good reason :) Many of our readers have reached out, for advice, support, and to connect. I've felt a tug at my heart for several months now to get this blog going again, so here we go...

The last week has been one of wonderful highs and the lowest of lows. In November, we were surprised and excited to find out there would be another baby Barrett joining the family :)!  After 3 heartbreaking miscarriages, we were over the moon to make it through the first trimester without a hitch so we announced the pregnancy on our Facebook page the best way we knew how: Super Hero style!

The one lingering fear remaining was the 20 week ultrasound. After such a tough and heartbreaking journey with Eli, we were hoping and praying we would dodge another child with clubfoot. As the date approached I could feel the anxiety and excitement welling up in my chest causing me to break down in tears randomly throughout the day. In my defense, pregnancy hormones were doing me no favors! HA!

Going into our ultrasound last Monday I probably cried no less than 6 times before our 10 am appointment. I played the scene over and over in my mind: The ultrasound tech would put the camera on my belly and the first thing we would see would be perfectly straight feet and capture the perfect shot that I could post all over social media praising God's faithfulness to us. A well deserved gift after 3 years and 5 months of trips to Children's hospital right?! It's always good to tell God what you deserve for your suffering right ;)?!  

Unfortunately that just wasn't the case. The ultrasound tech put the camera on my belly and the first thing we saw (immediately!) was that we were going to have another SON & best buddy for Eli!!!  

It didn't take us long to also realize that we would also be having another son with clubfoot :( The tech would neither confirm or deny what both Eric and I clearly saw on the screen.

At the end of our appointment, the ultrasound tech said those dreaded words, "A doctor will be calling you in a day or two to go over the results." Two days later, we got the call confirming our fear: a left clubfoot and uncertainty  of the right foot being clubbed as it wasn't visable in the ultrasound.

This week has been a heartbreaking and gut wrenching roller-coaster ride . We are teetering on the verge of joy and sadness at any given moment. Neither Eric and I would change a thing about our journey with Eli. Our parenting is better, our marriage is better than either of us ever could have imagined it being, and we have been able to appreciate each milestone Eli has been able to accomplish on a much deeper level. We just wanted to be able to enjoy a typically developing baby's too :)

So, many have asked, how can you help?

1. Celebrate with us. Mourn with us. We are thrilled to have a son and children are such a gift (I'd have 10 if i could :)) but we are also deeply saddened that we will be watching another one of our children suffer through casting, bracing, & therapy. It's ok to just say, "I'm sorry. That's really horrible." Because it is. For us, clubfoot isn't always just clubfoot. For Eli, it was an indicator of a much bigger problem that has resulted in 6 surgeries and 7 specialists that we see on a regular basis. So, even though "we know what we are doing and are experts" we are concerned about what further testing  in a few weeks might reveal.  

2. Pray that our son is healed. Baby Barrett is currently breach and he had himself crammed into a corner of my uterus. Our doctor really wants this guy head down to give those legs a chance to stretch out :)

3. Pray that God sustains us. We are weary.  We are tired of specials visits, surgeries, and trips to Children's. We are emotionally spent. It's hard to imagine starting this all over again and going strong for another 4 years.

Thanks friends for your love and prayers. They mean the world to us <3

Jeremiah 29:11-13

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Disability is Not the End of Life

I found this video painful to watch at times, but I am moved by someone who despite suffering totally loves God. This is a true inspiration.
"The hardest thing is loneliness. I am my own greatest enemy when I am left to my loneliness."

This is a story of how Roger finds hope in the midst of living with cerebral palsy.

Shiver Me Timbers

We have an update on Eli, but first we wanted to say that God is awesome.  Leading up to Eli's doctor appointment we were worried about his fever.  So worried, we took him to his pediatrician who said that if Eli was still running a fever, he wouldn't be able to go to the ophthalmologist.

That was devastating news.  We were facing another medical crisis complicated by Eli's strange fevers.

So we did what we always do - reach out to a few people we know are willing to go to battle for Eli through prayer.  I'm thrilled to announce that Eli woke up fever free.  There's no other way to describe that than a miracle.  In all of the fevers Eli has had, this was the shortest one yet, and it broke in time for him to go visit the doctor.

Eli walking into the doctor's - a miracle by itself!

Consistently rated a top Doc.  Something we'd agree with!

The second part of our good news is that Eli got the best possible diagnosis he could have.  (Short of having nothing wrong!)  Like all things Eli, we won't know the full extent of Eli's eye problems for awhile. 

We do know a couple of things:

1. His issues do not appear to be structural, which means it's most likely an issue with muscle tone and neurological development (in this case, this is good news.)
2. It does, however mean that he will need to wear an eye patch for a few hours a day.  Sadly he's not allowed to wear a pirate eye patch.  So much for teaching him to talk like a pirate before kindergarten.  Instead he wears what is basically a band aid over his eye.  We also need to give him eye drops each morning to "strengthen" the eye muscles.  The doctor has warned us Eli will hate both of these things.  Which of course, makes us excited.

And hate them he does...

So what does this mean going forward:

1. Pray for the eye drops to work.  There's a chance that eye drops will be enough to solve Eli's problems.  If not, we're looking at long-term use of glasses and likely surgery.  That's not a route we'd like to go down.  We really believe God can perform a miracle on this.
2. Pray for our endurance.  This is a 6 year process.  On top of another 3 years of braces, we're not looking forward to this.  It's a lot to subject Eli too, and it's a lot to have to endure as parents. 
3. Pray for Eli's health.  Eli's had it rough in his 18 months.  Now he's got to be poked and prodded on both his head and his feet.  Please pray for continued health for him (and us!).  The next thing to go (location wise) would be his middle, and NO ONE wants to be on the business end of Eli's butt. 

Superman has a fortress of solitude - Eli has a "cave of TV's"

Overall this visit went about as well as we could have expected.  Which is frankly unusual for us.  But we're tired of all of this, as is Eli.  Yet when I look back on the last 2 years, I'm struck by the perspective all of this has given us.  It makes Heather and I appreciate one another, our family, and our friends more.  It also lets us see the world very differently when we get to see - no depend upon - God's grace on a daily basis.  

I'm reminded of what Paul said in the midst of being in prison and beaten: "We rejoice in our sufferings because we know that suffering brings perseverance; perseverance character and character hope."

Heather and I understand this more than we'd like.  But it also let's us see God's mercy and love in a very personal way.  It's that closeness that truly changes us.

And that's a good thing.

Prayer Request

I have gone back and forth about posting on the blog about Eli's latest issue mostly because I tend to take comfort in denial. But today, as I am overcome with anxiety, I feel strongly that I need to post a specific prayer request for Eli. Time and time again, God has showed up in miraculous ways as a direct result of specific prayers for Eli's healing.

As I have spent time recalling all the miracles we have witnessed, I am praying for God to show up big time.

Again.

Today, we are asking for some big prayers.

We knew when we were pregnant with Eli, that there were some underlying neurological issues the doctor was unable to pinpoint. Never in our wildest dreams, did we ever imagine the path we would be asked to walk.

About a month ago, we had an appointment at Children's Hospital for Eli's annual piggy check with the Dr. Mehlman. As Eli was showing off his awesome walking skills, the Orthopedist pointed out a issue with Eli's eyes. After taking Eli to the doctor the next day for an eye check, we were given a referral to a pediatric ophthalmologist. The doctors are concerned that Eli is losing vision and that his brain is rejecting his eye.

Our early intervention team has been an amazing support & resource. Our services facilitator contacted Cincinnati Association for the Blind who, despite not having a specific diagnosis, graciously offered to go to our appointment with us and explain the doctors findings. Eli's physical therapist has come out to see Eli and evaluate him, despite him being discharged from PT, and other members of the team spent several hours going over Eli's specific skill sets so we would have a very clear idea of a definite baseline as we move forward.

The happiest kid EVER

After waiting nearly a month, we finally, today, have our appointment with the Ophthalmologist. In true Eli style, he is making things complicated. He has been running one of his infamous fevers since Friday. The eye doctor will not see him today if he is running a fever. Eli woke up this morning fever free however, we are asking for prayers that he remains that way through our 1.5 hour appointment that begins at 12:15.

If you are the praying type, we are asking for specific prayers for Eli & us today :)

• For Eli, that he will sail through this evaluation easily (which is scheduled during nap time) , and without any undo stress.
• That Eli's vision and eye health be restored.
• That Dr. Burke will be able to come up with a conclusive and appropriate plan of action to correct issues with Eli's eyes.
• For Eric and I to have a calm heart and clear head that we are able to understand and hear everything the doctors are telling us.

I think Eli could rock some pink glasses? Real men wear pink right ;)?

Both Eric and I know God is with us, but as parents, we are worried at what this looks like for Eli's future. We are praying for another miracle and know that God will show up, even if it isn't how we expect.

Thank you everyone for your love and prayers. Our hearts break for our son as he experiences another challenge. We have taken comfort the texts and emails that have been filtering in throughout the evening and this morning, so thank you. We will keep you all posted after our appointment :)

This is what Eli has to say about fear :)

More Miracles :)

Earlier this month, Eli had an appointment with his Urologist. Our pediatrician had some concerns from our last check up that, worst case scenario, would involve a pretty terrible surgery, and lots of long term care. We were a nervous wreck. So, once again, we found ourselves gearing up for a full day at Children's hospital for a day of testing and praying for yet another miracle!

I love Crayons!

Such a big boy sitting in the chair!

I really hate this room Daddy!

Can't thye leave my kidneys alone already?!

My handsome men :)

Future Picasso?

After waiting (for what seemed like forever) for the ultrasound tech to get back from talking to the doctor, we were dismissed :)

Fortunately, the scheduling department was able to get us in for an appointment later that same day to go over the results of the testing.

Waiting on the Urologist with our matching spikes in our hair :)

We greeted by the Urologist with a smile (which is ALWAYS a good sign!). He was happy to report that the condition of Eli's kidney's are not getting any worse, and that there was no additional swelling!! Woohoo! Eli has developed a cyst on one of his kidneys however, the doctor doesn't see any need to treat it at this point.

Please continue to pray for his kidney's, that they continue to improve, and we can be discharged from the Urologists care :) We would love to knock one more specialist off our ever growing list :)

Quality Time: Eli Style

Eli has a bit of a cold.  Which means lots of coughing, drooling, and crankiness.  It's nothing compared to what it was like from August to November.  Those months are going going to live in infamy in our family.  Just like the day the Steelers lost to the Cowboys in the Superbowl.  Or possibly the day Twinkies stopped being made. 

But this time Eli just has a typical baby cold. 

I look miserable, but this is a piece of cake.

Who knew that your kid could be sick, and it didn't have to be catastrophic with multiple trips to the doctor per week?! 

At any rate, I thought I'd teach Eli how to make himself feel better.  It's something I have done since I was a kid: I fire up some video games.  Nothing works better than taking your mind off being sick!

Eli was excited, of course.  He's a big fan of Xbox controllers, TV Remotes, phones, and anything else you want to hold while he's around.  

So as I  turned on the Xbox and handed Eli a controller he laughed with anticipation.  There's no question in my mind that he's a big fan of video games.

Eli, you have to share with Daddy!

Apparently too big of a fan.

God’s Not Done With You Yet

Dealing with a kid with a disability is a grueling, non-stop job. And while there are many things far, far worse than club foot, it’s not exactly a walk in the park (no pun intended). Every day, Heather and I feel the burden of Eli’s club foot diagnosis. And while I’d like to say we fly through it without issues, I’d be lying. It puts a strain on our marriage, wakes us up in the middle of the night, and prevents us from doing “normal” things.

And while we’re thrilled with where Eli has journeyed, we’re feeling the burden.

Whenever I feel this way, I always look to the Bible to see how, as a Dad and a husband, I should be acting. (I know, that almost sounds old fashioned! But it’s the only way I know of to keep myself grounded.)

Often I find myself turning to the story of Elijah. Elijah is one of my favorite people from the Bible. In many ways he was an action hero. Not only did he spend his days confronting evil - when virtually everyone else in Israel wasn’t interested in taking a stand - he also out ran a chariot on a race back to the nearest city. But perhaps most dramatically was the time he called fire down from the sky:

Then Elijah said to all the people, “Come here to me.” They came to him, and he repaired the altar of the Lord, which had been torn down. Elijah took twelve stones, one for each of the tribes descended from Jacob, to whom the word of the Lord had come, saying, “Your name shall be Israel.” With the stones he built an altar in the name of the Lord, and he dug a trench around it large enough to hold two seahs of seed. He arranged the wood, cut the bull into pieces and laid it on the wood. Then he said to them, “Fill four large jars with water and pour it on the offering and on the wood.”

“Do it again,” he said, and they did it again.

“Do it a third time,” he ordered, and they did it the third time. The water ran down around the altar and even filled the trench.

At the time of sacrifice, the prophet Elijah stepped forward and prayed: “Lord, the God of Abraham, Isaac and Israel, let it be known today that you are God in Israel and that I am your servant and have done all these things at your command. Answer me, Lord, answer me, so these people will know that you, Lord, are God, and that you are turning their hearts back again.”

Then the fire of the Lord fell and burned up the sacrifice, the wood, the stones and the soil, and also licked up the water in the trench.

When all the people saw this, they fell prostrate and cried, “The Lord—he is God! The Lord—he is God!” (1 Kings 18: 30-29)

That’s pretty impressive. I don’t know about you, but I haven’t called fire down from the sky recently. So after this amazing miracle, what does Elijah do next? A few short verses later we read, “Elijah was afraid and ran for his life.” (1 Kings 19: 3)

Interesting. It’s not the message we get from Hollywood. We’re told that after you do something amazing you crack a joke. Maybe you smoke a cigarette. Heroes in our culture tell us that part of being a hero is the acceptance that doing something amazing is kind of boring. And certainly not life changing.

But the Bible paints a different picture. It shows us that in the moments following our greatest spiritual victories, we’re most likely to suffer despair. Elijah performed a miracle and stood up to an evil king. Instead of walking to the nearest bar and ordering a martini, shaken not stirred, he ran away and hid.

Heather and I feel this with Eli. It wasn’t until after Eli made it through his illnesses that we felt the toll it took. We’ve seen miracle after miracle with Eli. But the minute we got a true victory over his suffering, depression and exhaustion set in. There were no clever one-liners. No apathy. Just exhaustion.

Of course God is cool with this. He didn’t yell at Elijah. And he’s not going to yell at you. Instead, he gave Elijah rest. But in the midst of that, he reminded Elijah that his work was not done. That he couldn’t give up.

And we can’t either. God has more work in store for our family.

And he’s got more work for your family.

photo credit: jurveston

The Year of Thanksgiving

Looking back, 2012 has been a year of hell.  Without a doubt, 2012 has been brutal.  There never been a harder year that I've lived through.  And the same goes for Heather.

But when I look back, I don't just see the misery - I see what could have been.  And how close to true disaster we were.

In the last year we've struggled with....

• Fear that his kidney's wouldn't work
• Clubfoot
• 3-months of ear infections
• bladder infections
• Chronic illness
• Being told that Eli might have Lukemia
• Blood infections
• Delays in gross and fine motor development
• And the general problems that come with dealing with a kid who has clubfoot.  (such as not sleeping through the night, pulling his braces off, and being unsure what "the problem was" when Eli was acting strangely.)

I may look innocent, but I'm just waiting until your least expect it...

Many of these we've shared here on Faith Feet & Love.

But as I said, looking back, I don't really see those problems.  That's not to say that I don't remember them.  Trust me, when your kid projectile vomits on you 3 times in one week, you don't forget!  Instead, I find myself grateful that even though we've flirted with disaster far too many times, it has given me a deeper appreciation for the wonderful things we have experienced.




For me six things stand out when I think of 2012:

The moment when Eli smiled at me for the first time.  It was at about 3:00 in the morning, and he needed to be changed.  As I laid him on the changing table, I remember him distinctly looking at me, smiling ever so slightly (one of his first smiles by the way) and sticking his tongue out at me.  (Which was a game we used to play until he was about 3 months old.)

Playing "catch" for the first time.  Okay, so he didn't really catch.  But he knew enough to throw a toy back and forth to me.

Eli's love of games.  I've never seen a kid who loves to play as many games or who loves his toys more than Eli.  No matter how miserable he's feeling, he's always up for some kind of playing.  (Even if Daddy has to carry him while he plays.)

Why limit yourself to what you can carry, when you have a mouth.

His love of cars.  I don't know where he gets it, certainly not from me.  But this kid loves to watch cars.  The bigger and louder, the better.  And if it has a lot of lights, that's just extra winning.  We thought buying a house on a busy road would be a drawback, but it's saved us through the last few months of constant illness.  No matter how sick Eli is, he always makes time to watch cars.  Even at 4 AM.

Eli's work ethic.  No one works harder than this kid.  No one.  He doesn't know what it means to give up, whether that's learning to crawl, or learning to live with casts on his legs. 

Isabel showing off the one-shoulder backpack look of "older kids"

Of course it's not just Eli we're thankful for.  Our daughter has had an up and down year as well.  At times she's struggled with school.  But other times she's been a leader to her friends.  And while she had her own rough start to 2012, she's really become an amazing kid.  With a hilarious sense of humor, and a new-found love of all things Harry Potter, she's slowly growing up.

Okay, she's actually growing up entirely too fast!  But that is a post for another day...

Ear Tubes!

Well it finally happened. After watching Eli suffer since the beginning of August with the same ear infection, he was finally eligible to get tubes last Monday!

I would like to say that getting the tubes was the easiest thing we have ever done. After all, everyone told us it would be :). But, like all things Eli, it was a rough few days. He had a lot of bleeding post surgery due to the infection and several days where he seemed to be in pain but, was sleeping through the night almost every night!

This weekend, just as we thought things were starting to get better, Eli started crying and pulling at his ears again. I could have died. Neither Eric or I were ready for another round of ear infections. We thought surgery fixed all that! Of course Eli is a complicated kid and things never seem to come easy for him :(

Thankfully we still had some of the drops left that we were given after surgery so we started those back up again and he seems to be feeling better for the time being.

Here are a few pictures from the day:

Everyone is looking exhausted :)

Trying to calm the hungry Eli down with the cool bubble wall.

yeah Mommy, I know I am cute! But why am I in this white gown?!

Right on schedule!

Heading into surgery

In recovery and for the first time, didn't want anything to do with Mommy!

Still looking sweet as ever :)

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.

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 :)