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.

What it Means to Be a Dad

I spend a lot of time thinking about what it means to be a Dad. What kind of legacy am I creating for my kids? How do I want to build into them? How am I harming them through my own weaknesses?

These are thoughts that come rushing into my mind more frequently when Eli has another medical problem.

Stress doesn’t really make for good choices!

As I I think the question I always ask myself “what would I do?” Would I have the courage to push forward? Do I have the strength to keep fighting for my family? I think the surprising answer has been “yes.” It’s not easy. It’s not fun. I don’t feel strong. I don’t feel courageous.

But I keep two thoughts in mind.

1) If not me, who?
2) Jesus went through far worse, and He keeps fighting for me.

I learned long ago that faith in God doesn’t protect you from suffering. What it does is allow you to survive suffering. It changes the meaning of suffering. And that’s what it’s done for our family. Life has been hard, unbearably at times. But slowly over the last two years, we’ve changed. We’ve been forced to find new rhythms to grow us together. We’ve been forced to prioritize what matters to us as a family. We’ve been forced to appreciate the good things in life, and celebrate the miracles we receive. That’s why these are some of my favorite pictures:

That's the face she has for Dad

Mom gets a bit more introspective

These were taken minutes after we learned that would need surgery (his fifth in 21 months), and as devastated and exhausted as Heather and I were, we could still laugh.

At the end of the last post I mentioned that Job’s reaction to suffering was grief AND worship. Then I wondered if I would do the same thing? I think the answer is yes. Not only that, but I think our ability to laugh and worship God is a miracle on it's own.  One that might sound crazy to some.  And it would have sounded crazy to me even two years ago.  But here we are.  God has grown our family. He's changed the meaning of suffering for us.

God is good. Even when we can’t feel it in the moment.  Looking back, nothing is more obvious.  In fact, this is one of the lessons I want to leave my children.  I want them to understand that suffering doesn't mean you've been abandoned.  That suffering doesn't change your value.  Or God's character.  It's not an easy lesson to learn, and it's not an easy lesson to teach.  But it's an important lesson.

Although maybe next time we can learn a lesson while sitting on a beach drinking Margaritas.

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 :)

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 :)

Guest Post: Hudson

Ever since I can remember, I have longed to be a mother. It started as a young girl, playing with dolls and practicing my “mommy” skills, and grew into babysitting for any and all families with children that I possibly could. So on that brisk Sunday afternoon when I took that pregnancy test because I “just didn’t feel quite right,” and it revealed a shockingly positive result, I felt overjoyed, shocked, and blessed. We had only begun trying just a few weeks before and it happened so quickly. Wow. Ryne and I were about to be parents! I loved this child so much already.

Well for several weeks we endured the very exciting firsts of being pregnant and fantasized about what our lives were about to be like as new parents. When we reached 20 weeks of pregnancy, we went in for our traditional “20 week sonogram.” I was anxious, and excited. I had dreamt about what it would be like to see our little peanut (that’s what we called him before we knew it was a “him”). At the same time, I had my reservations about what this experience would be like. My family has a strong history of skeletal deformation of their hands, and I worried about our child also having this deformation and what it might mean for their little life. Much to my relief and surprise, we discovered that our little BOY had all of his fingers and toes, and that was great! However, I noticed that when the sonogram technician zoomed in on his feet, she had very little to say and asked for clarification about the condition that runs in my family. I brushed it off, and didn’t think much of it. When our sonogram was over, they transferred us to a room and said that our doctor would be in shortly to discuss the sonogram with us. Okay, I thought, normal protocol. We are in the clear. Fingers and toes are in check. Good to go. When our doctor entered a few moments later, all I really remember are the words, possibility, and clubfeet. This was when the whirlwind that is now our lives began. My thoughts immediately went to the worst possible picture of Chinese bound feet that you could imagine and I fought back tears sitting on the table in that room in the doctors office.  We were referred to a perinatal specialist and sent on our way. I walked out of that office like a disoriented victim of a disaster.

In the days to come, I would spend many moments breaking down in tears, sobbing. Letting go of that “picture perfect” child that I had imagined in my dreams. How selfishly I did so. I asked God “why” so very many times. I had been through so much already in my life and couldn’t fathom why He had planned this for me on top of everything else. It’s hard, even now, to describe the immense pain I felt. I just couldn’t imagine how I was going to handle all of this. In the mean time, Ryne was so incredibly supportive and strong. I tell you what, this man is my rock. I am sure he went through some of his own emotions and process to handle this, but he did so much more gracefully than I did.  So with the encouragement of my husband and family, I pulled myself out of the hole I had been allowing myself to hide in and decided that I was going to deal with what I had been dealt. Hadn’t that always been what I had done? I was reminded, as I listed to KLOVE one morning on my way to work, that Jesus Christ hadn’t left me for a single moment in all of this. He reminded me that in all things, there is a purpose. Okay, I could do this, I told myself. The moment it all clicked and set a fire within was when my mother-in-law and I were talking and she said something that made me think of our impending challenge in a way I never had before. She said that she just felt as if God had GIVEN us our little man because He knew that he would be so incredibly loved and cared for in our family. We could give him everything he would need with his feet. Wow. I had never thought about it that way. It changed my ENTIRE outlook on life. I was CHOSEN to be Hudson’s mama, because God knew I could love him enough, care for him enough, and be STRONG enough to do so. Yes, I CAN do this, I told myself. My baby needed me, so I pulled it together.   

Over the next eight months of my pregnancy, the Lord reminded me how incredibly blessed I was to have the child I was about to give birth to. God worked through so many people to give us comfort and support. So many of our friends and family prayed every day for our sweet little man. Two very moving events happened when I was still pregnant that will forever remain pivotal points in our journey. A long time family friend and pastor of my husband’s family also had a baby born with clubfeet (it’s really more common than one might think.) They reached out to us and took us to coffee, shared their story, pictures, and prayed with us as well. How incredible it was to know we had people so close that had gone through everything we were about to experience as parents of a clubfoot baby. The other was one evening at a meeting for our children’s ministry. We were really struggling with a lot of different things in our lives at that time, and as we always did we closed our meeting in prayer. Our pastor and friends gathered around us, and prayed for us. They laid hands on us, and our feet and prayed for our son. It was an incredible moment.

Hudson Douglas Huff blessed our lives with his presence September 19, 2012 at 10:14 p.m. 

After ten long hours of labor, and 15 short minutes of pushing…he was finally here! It’s hard to explain the feeling you get when you look into your child’s eyes for the very first time. I had waited

my entire life for this moment. To be honest, those first two days in the hospital I actually kind of forgot that he had clubfeet. So many other more important things to focus on!

Per our orthopedic doctors orders, we took Hudson in for his very first casting the same day we brought him home from the hospital. What an emotional day that was. He didn’t even cry when they put his casts on, but I was a mess. 

As we took our sweet little boy out to the car and headed home, I had the same overwhelming heavy feeling that I did the day we found out Hudson had clubfeet. I bawled. I had to. I needed to get it all out. This wouldn’t be the last time either. We had quite the journey ahead.  For the next several weeks we struggled to get into our new normal with our little man. Like every mother, I worried about my new baby but I had other worries as well. We checked his toes like we were supposed to, and tried to make him as comfortable as possible. All I can remember is thinking that we just had to make it to the next casting. Just like at Hudson’s first casting, I was incredibly nervous at his cast removal and second casting. When the casts came off, his poor baby feet were so wrinkled, bruised, and worst of all he had a few pressure sores on his feet. 

Oh, there I was again. Bawling. This was so hard. I remember just praying. It was all I could do, just pray. So I did. One day, when my cousin was visiting us, she told me about a bible verse that really helped her after having her second son, Joshua 1:9 says, Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go. And I just prayed that verse over and over. We ended up writing it on the bottom of Hudson’s first set of casts. 

I wanted to claim it as Hudson’s verse. Then, I stumbled upon this next verse the after having Hudson’s first casts removed. I remember being alone with Hudson for the first time when Ryne had to go out for an errand and I just sobbed.  I couldn’t imagine ever getting past that moment. But this verse just jumped out at me and I knew it was God giving me hope.  Psalm 25:15 says, For my eyes are ever on the Lord, for only He will release my feet from the snare.  Boom, in my face, as bold as it could ever be.  It is my desire that this verse will give someone else out there hope as well. I claimed those two verses for Hudson and prayed and continue to pray them for him.

We experienced many trying times in those first few months with Hudson’s treatment. After getting his tenotomy procedure done on a Friday afternoon our doctor sent us home. That night his casts bled through (as expected) but much more than we had anticipated. There I was again, worried sick. But, we made it through that too. His tenotomy actually went very well & he recovered wonderfully.

Hudson has his casts removed and received his first brace 4 months ago. He is now 6 months old. Time flies. I want so badly to capture each moment and hold them tight. It’s funny now to think that I was least worried about the transition from the casts to the boots and bar as this was the most difficult transition for Hudson. He had lived his little life in casts up to that point, and I think he found some security in them. So not having them was scary, I’m sure he felt weird and vulnerable. The first few nights we were up a few times trying to make sure he was comfortable and adjusted but it was no time before he was fully adjusted and learning to love his brace. 

 

So that’s where we are now. Watching Hudson grow, and learn. He does everything a typically developing baby should do. He cries, laughs, eats, poops, rolls over, and grabs for anything he can get his little hands on!

I’m sure there will be moments that we will have to deal with the ups and downs of Hudson’s club feet, but the most important thing I will remember is that his feet are so very special. Just like he is. And while those feet make him special to us, they do not and will not define him. I cannot wait to watch my son grow into an incredible man of God who will go be the hands and feet of Christ.