Seeing is Believing?

We went back to the eye doctor yesterday. Heather and I were optimistic. Eli had been responding really well to the patches. He’d even been tolerating his eyedrops. (In the sense that he’d cry, squirm, and scream, “No daddy! No!”) So we were hopeful.

Sadly, we were also delusional.

While we really believed Eli’s eye was getting better, it turns out that it was absolutely no different than it was 5 weeks ago when we first saw the ophthalmologist.  

That means Eli will need surgery. This will be his 5th surgery in 21 months. While we’ve been through this before it doesn’t feel better. Or easier. Or less scary. 

Eli has learned to be terrified of doctor's visits...

In fact this surgery caught us off guard. We really believed Eli would be in that 80% group that doesn’t require surgery. We should have known better. It’s hard not to sound pessimistic, but Eli always seems to find a way to be difficult when it comes to his medical conditions. (Although he’s a complete champ when it comes to recovering!) 

Each day I try to read my Bible. Yesterday was no different. And as coincidence would have it, I was starting the Book of Job. (Job is a story about someone who loses everything, and learns through suffering that God is still trustworthy.) As I read the first chapter, I saw something I had never noticed before. After Job loses all he owns, all his wealth, and all of his children, Job’s first act is one of grief (he tears his clothes). OK, I get that. You lose everything and you mourn. But what’s unexpected is what he does next. He worships God. 

That’s right. Worship. 

I read that line and thought, “Could I worship God immediately after hearing devastating news? Is my trust in God, that strong?” 

I guess now we have a chance to find out.

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.

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 :)

Worn

Things have been really quiet around the blog.

Truth is, we haven't had much energy to write lately. Not because of lack of things to write about but, because life has just worn us down. Eli has been incredibly sick for months now. We have seen our pediatrician more times since the start of the year than many people see their doctors in years.

Eli's fevers have been as high as 107.6. We have been to the hospital, seen specialists, had countless tests done, and are still left guessing what is wrong with him. After meeting with Eli's doctor again today, they have recommended for Eli to have his tonsils removed.

We can't get into the ENT until Saturday and are wondering how we are going to continue caring for Eli while still going to work. When Eli is this sick, it also makes it difficult to get him to wear his braces. We worry so much that these illnesses are going to cause his bilateral clubfeet to need surgery again. It feels like we are always walking a double edged sword.

I think we have been taking his temperature too often ;o)

 

 

Mom I really hate the ER :(

We are completely emotionally, mentally, and physically exhausted. It is times like this that I am reminded what an amazing man I am married to, and have been blown away from the support we have from our friends. We are so thankful for each of you who have prayed on our behalf, sent texts checking on Eli, brought food, or who are crazy enough to answer the phone when I call or text in tears :) You guys are amazing.

So, for all you prayin' people :), we are asking for prayers for strength, sleep for us and more importantly, Eli, and for wisdom for our doctors. There is nothing we want more than for Eli to be restored to health. Our hearts break as we watch our baby suffer so much.

Thank you all for your prayers. We believe God hears them, and the end of Eli's suffering is near :)

A Story of Redemption

Watching this video about a pastor who became addicted to painkillers, I'm struck by two things:

1. How fast we are to judge others
2. How easy it is to fall to temptation

But more than that, I realize that no matter how far we fall, God is always there to pick us up.  If you've ever struggled with anything (and who hasn't?) this video is worth watching.

 

Trusting God Admist Heartbreak

 
Miscarriage. Something I never thought Eric & I would be faced with.

When Eric and I found out we were expecting #3, I think we were both a little nervous. We wanted nothing more than a healthy baby. Who could really blame us after everything we had gone through with Eli?  

I have prided myself on the ability to get pregnant easily and deliver my babies just as easily. A few pushes and sometimes a literal laugh and I would be happily holding my new bundle of joy.

Afterall, I have always felt, I was born to be a mother. Born to make babies. Something that has always felt second nature to me. I had always assumed, once I got pregnant, I would stay pregnant. I haven't ever miscarried a baby. My body loves making babies and I love being pregnant. 

Yet, last Friday morning, I found myself in the OB office getting an ultra sound confirming my worst fear. We lost the baby.

Once I left the doctors office, it wasn't until around 2:00 that I was aware of the Sandy Hook tragedy. My mind was spinning. How do parents find hope when they are faced with losing a child?

God. And the hope that God brings.

Eric and I have experienced God's redemptive qualities time and time again through our experience with Eli. Our marriage is better for what we have gone through with Eli. We have had a front row seat to some amazing miracles!  We never have to doubt God's presence in our life and whether God is really real.

He has made His presence known.

Through this miscarriage, I have been now been given the gift of being able to relate to the 1 out of about every 3 pregnant women who miscarry.
 
Even though my faith in being able to carry any more children has been shaken, I know with God anything is possible.

Even though my heart feels like it is broken into a million tiny pieces, I know God's heart is breaking too.

I have faith that God is going to redeem this experience and turn it into something amazing.

It's our job, to keep our faith and hope in Him.

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

Eli is ONE!

I am filled with emotion.

Today our sweet Eli turns one.

What's this you say? It's my birthday??

Oh my gosh!  You're right!

Heck yeah!  Let's celebrate!

It’s hard to believe how far we have come in this last year and how far Eli has come in the last year. Some days it feels like it has flown by. Other days it feels like this has been the longest year of our life.


In the last year, Eli has withstood countless trips to the hospital, dozens of tests, and suffered more than most of us will in a lifetime. Through all of this, he has done it with a smile. Eli is without a doubt, the happiest kid I have ever met.

Sitting in the delivery room last year, I had no idea how our life would change. All I knew was that I was scared (who am I kidding, I was terrified!). We had no idea what Eli’s feet would look like, no idea if he would be able to pee, and no idea what life was going to be like raising a kid with a disability.

After 10 long hours of labor and nearly losing our sweet boy, at 7:52pm Eli finally made his appearance and all the fear/worry/anxiety melted away. He was perfect and I loved him just the way he was :)

Although this year has been heartbreaking at times I wouldn’t change a second of it.

Eli has changed us; changed our community; changed how I see the world. And changed how I view God.

These are things you can’t put a value on and could never accomplish without suffering.

Dear Eli,

The moment you were born, I knew I was forever changed. I think my heart grew two sizes. I couldn't believe you were mine! When I looked at you, I couldn’t see a single thing wrong with you. Your feet were the most adorable perfect feet I had ever seen.

Daddy and I were baffled by all the doctors and people who were coming in to look at your feet. (Doctors were even bringing in their students to learn from you.)

We knew you were special.

Everyone told us how cute you were. But we already knew that. Barrett’s are completely adorable after all, so that was a given ;o)!

You and your sister are my greatest accomplishments.

You, Eli, have taught me to suffer with grace. Through your suffering you have brought people to their knees, helped them reconnect with God after they had lost a connection years before, through the unceasing prayers for your healing. Through your suffering, faith has been restored in modern day miracles.

You have taught those around you what sheer determination will get you. You have shown people what hard work will do. You don’t know what it means to give up. Each day you keep pushing on, working harder than the day before to meet that next milestone.

You have taught me to love more unconditionally and more deeply than I ever thought possible. Your sister loves you SO much. I think you have also taught her to love without reservation. Isabel is so protective of you and loves taking care of you! I pray as you two grow up together that never changes.

Through your suffering, you have taught Daddy and I to hold on tighter to our marriage (and each other) and not give up when things get hard, to accept help from our friends, to be humble, and above all trust God more.

Every milestone you reach is cause for celebration. Through you, we have learned to step back and appreciate the little things and not take those moments for granted.

Daddy and I know God has big plans for you little man. We know this year is just the tip of the iceberg.

We are both honored to call you our son. We are SO proud of you and love you more than we could ever thought possible.

Happy First Birthday Eli! You make our hearts swell with pride for all you have accomplished in just one short year!

Love,

Mommy

I love this kid so much sometimes I think my heart might explode!

And finally a super sweet card from Isabel to her baby brother:

For those of you reading at home a translation :): Happy Birthday Buddy Bear

Dear Buddy Bear, I love you so much and I think you are sweet. I love to play with you and it's very fun! I also like to read to you.

And snuggle with you. Sincerely, Isabella PS. Happy Birthday!

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 :)

Random Acts of Kindness: Ambushed with Love

I have been trying to write this post for days now but for one of the very first time in my life, I was nearly speechless.

The last two months have been hard for our family. Really hard. Eli has been fighting the same ear infection since August. We have been at the pediatricians office so many times it's almost comical. With each antibiotic prescribed, Eli wasn't getting better. Even the series of shots that works on 99% of kids didn't work for our Eli.

Even though we left Eli's pediatricians office with a referral to an ENT I became (as usual) a worried, hot mess. How could my baby be so resistant to antibiotics? Especially since Eli had never had an antibiotic prior to August.

It seemed like everything had suddenly become so hard again. Eli's sleepless nights were wearing on us, the 2,3, & sometimes 4 doctors appointments a week were wearing me out, on top of both Eric and Isabel getting sick during the same time period, was enough to send me over the edge.

Even Puppy doesn't make me happy...

I remember when I could breathe...

Eric and I have been talking a lot recently about how we have been feeling really called as a family to live our life more openly. To live with transparency. To share our struggles with our friends. Not in a whiny, feel sorry for us kind of way, but as a way to go deeper with our friends. Get beyond the surface and really dig in deep with our community. So, the next day I sent out an email to my girls smallgroup asking for prayer.

Almost immediately my girls stepped up. My inbox filled with such amazing words of encouragement. The load was noticibly lighter. My friends were carrying part of our burden.

For instance, when I called to schedule Eli's appointment for the ENT the following day, we were "randomly" assigned to one of the best ENT's in the entire country, Dr. Myer III. He is actually the president of the American Society of Pediatric Otolaryngology. Can you believe our luck?!

Actually, there was no luck about it. I have no doubt getting an appointment with Dr. Myer was a direct result of the prayers we received. One day, I am going to learn to trust that God has Eli under control :).

For a few days things looked like they were getting back to normal.  Eli had healed from his ear infection when we saw Dr. Myer.  And we were able to schedule surgery for tubes.

Unfortunately it wasn't to last.

Fast forward to Sunday. Eli had been sick all weekend. Throwing up more than Eric and I had ever seen. So sick that we canceled most of our plans for the weekend.  But since we already had a babysitter lined up (who also works at Children's Hospital so she isn't afraid of germs) we decided to head to our couples small group. 

To be honest, I think we were both feeling relieved to get out of the house for a little bit.

By the end of the night my phone was filling with text messages from my girls, asking how I was holding up, seeing what I was up to, etc. I even mentioned to Eric how weird I thought it was that they were all texting me within minutes of each other... They must really think I am really about to go over the edge! HA!

Little did I know, we were about to ambushed with the most awesome, over the top, act of love, that anyone has ever done for our family.

When Eric and I got home and walked into the house we were greeted by a kitchen full of my very closest friends. (I can't believe I didn't take a picture of all of them standing there! I blame being completely overwhelmed and a little confused.)

My girls had gotten together to cook and prepare meals & wine :) for our family for  the next ten days! Look at all this food!

They even made some of the food Eli might be able to eat lactose/dairy free so little man wouldn't get sick :) That's love :)

Eric and I are still blown away by what these girls did for us. Words will never be able to adequately describe the depth of our appreciation. 

But this is what it looks like to be part of God's Kingdom, and part of a community who loves you.  And it's why we try to lead our lives as openly as possible, and to invite other people into our story.  How can you not experience something like this and not be changed?

You can't.  And that's what God has been up to this whole time.

Ami, Andrea, Angel, Gina, & Jes, our lives are better for having you in it. You girls are truly a gift from God and I am so proud to be doing life with you guys! You guys are the living definition of what it means to be the hands of feet of God. Thank you for helping to carry our family and for loving us so much. XOXO

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 :)