Article: Of years of love, and a long goodbye

There is perhaps nothing more brutal, difficult and draining than taking care of someone who can't take care of themself.  But at the same time, there is perhaps nothing more rewarding.

Missie's cognitive decline was gradual and began a dozen years ago, Cousy said. She would ask him the same question, over and over. She hallucinated, grew disoriented and struggled with balance. But she always knew her husband, and she bristled at any suggestion that she suffered from dementia.

So Cousy worked hard to create the perception that his once-independent wife was vital and healthy. Because she believed she could still drive, he shipped her station wagon to their place in Florida each winter so she could see it in the driveway. Artificial red flowers were planted in her garden. He did all the household chores and let her think she performed them herself.

"My dad provided an environment that allowed her, in her mind, to be a fully functioning adult," said daughter Marie. "It was amazing to watch."

A Documentary About Clubfoot: The Footnote Film Project

One of the cool things about running a blog is all of the interesting people you get to meet.  We hear a lot from parents who are going through a similar journey, and experiencing the frustration, fears, and hope that come with a child with clubfoot.

While those conversations are always our favorite, sometimes other cool things happen.  Such as being contacted by The Footnote Film Project - a group of people who are making a documentary about the world wide treatment of clubfoot.

The treatment of clubfoot has come along way in even just the last 20 years.  But much of what is considered "normal" treatment of clubfoot in the United States isn't known / practiced around the world.  (And in some places it's not even treated that way in the United States.)  The Footnote Film Project hopes to help raise the awareness of how the type of treatment impacts the life of someone with clubfoot.

If you're interested in supporting The Footnote Film Project, you can visit their Fundly page for more information. Or watch the trailer below...

From Pirate to Playskool

For the last six weeks, Heather and I have been living in Denial.  (It's a nice little place, lots of neighbors.)  Why were we in Denial?  Because neither of us wanted to believe that Eli would face yet another surgery.  Yet there we were.  Once again sitting at Children's Hospital. 

While at our last Orthopedics visit, the doctor made a comment about Eli's eyes.  We knew we had to face reality, and that meant seeing another specialist. So over the last four months we've been dealing with eye issues.  All of that "ended" on last Friday when Eli had surgery. 

The good news is Eli has been doing very well since.  This was Eli's fifth surgery in 21 months, and by far the easiest he's faced from a recovery point.   He was able to sleep almost continuously from the time the anesthesia knocked him out to 5:00, when we finally got him out of bed.  The only times he woke up were when I had to carry him to someplace new (like his stroller, car seat, and bed.)

Things with his health are always difficult.  It's hard as a parent to see your kid sick.  But Eli also seems to have the super-human ability to always be on the extreme end of illness.  So in the back of our minds, we're always worried about the other shoe dropping. 


That's why seeing Eli up right after sleeping through much of the day will live in my memory as one of the greatest memories of my lfie.  And even better, I was able to get it on camera...

The first time he's every "played" with his toys - 15 minutes after waking up

While this may seem like any kid playing on the floor this is the first time Eli has done two things:

1) lay on the floor on his stomach.
2) play with his Batman Little People.

We always assumed Eli was delayed in some of his play.  Or that he just didn't have interest in non-physical activity (he spent the first 6 months of his life on his back, so I can understand.) We simply had no way of knowing that so much of his play was being limited by his ability to see.  As a parent it's heartbreaking to know that your kid struggled in silence because you didn't know there was a problem.  But the good news is, we were able to get it fixed.  And for that, we are eternally thankful. 

Choosing a Orthopedist

You've just been given the heart breaking news that your baby is going to be born with club foot. Now what?

After being unable to see Eli's feet in several ultra sounds, we were finally able to see Eli's crooked little foot. We were so relieved that he actually had feet we didn't mind them being a little crooked :)

Eric and I are both planners so, once our shock and feelings of complete devastation started to subside, I went into Super-Mom mode.

The first thing I did was turn to my friends. I started asking around on Facebook and in my community of friends for names of the best Orthopedic surgeons in the city or surrounding states. It didn't matter to me where they were, all I cared about was if they were they best at giving my child a chance at a normal life. Fortunately, the best of the best, a doctor trained my Dr. Ponseti himself, works at our local Children's hospital. On top of that we live less than 10 miles from Children's.

Once we got a few names, we did a massive amount of research on each doctor.  This helped us decide on who would potentially treat our son. Some people don't do any research, and some do more than we did.  But as I said, we're both planners so this helped us reduce our stress and know what questions we should be asking. 

The next thing I did was call the doctors and asked to set up a consultation.  Don't wait to start calling doctors!  We found out that the best Orthopedists are on wait lists. In fact, we had to let them know almost immediately after our consultation if we would be reserving a spot for Eli's treatment. (And yes, this is stressful!)  Our doctor at the time, for example, was only accepting 6 new patients.

One of the most difficult things (out of hundreds) for me to handle during the consultation was being faced with the reality, that, well, this is real. My son will be born with club foot. There's part of you that denies this emotionally while you wrestle with it intellectually.  However, once you walk into a Ortho Clinic there is no denying the reality of what's about to happen. It is heartbreaking to see all the little kids in casts, wheel chairs, and braces knowing in just a few short months, that will be your kid.  :(   I'm not sure anything could have prepared me for that kind of heartbreak!

Eric and I went into the consultation with a list of questions but hardly needed to ask any of them because, the nurse we met with was amazing, and covered everything and more. The most important thing she told us, was to call the Orthopedist as soon as Eli was born so they could get him an appointment to be casted.

So when Eli arrived, and the news made it to our friends and family, we called Children's.

I will never forget that call.

Marsha, the head nurse for our Orthopedist, answered the phone. She was SO excited Eli had arrived that she shouted to the department while we were on the phone, "One of our babies has been born!  Eli is here!" She was just so elated, and clearly loves her job. That single phone call set the tone for the rest of our experience. It put my heart at ease. I knew Eli would be well cared for and loved like he was their own son.

Looking back Eric and I both believe it is more important than we realized to chose the doctors group you feel most comfortable with. A doctor with great bedside manner, a great group of nurses, and a staff with a compassionate heart. While Eli was in the intensive part of his treatment, we saw these people & spoke with them more often than our family or friends. They have become our biggest advocates and best shoulder to cry on.  They've fought battles with the brace shop we could have never won on our own, helped with the endless insurance claims, and have become like family. Plus, when you are going to be spending the next 18 years in their office, you might as well choose someone you like & get along with right?!

In the end I'm not sure there is one "correct" way to go about this.  But if we could boil everything we've learned into one list, it would look like this:

1. Don't panic.
2. Do your homework by talking to friends, family members, and doctors.
3. Go for consultations, and meet people in person (if possible). 
4. Don't be afraid to ask questions. 
5. Pick a doctor who's highly recommended AND you like.  You need to have a good relationship with the Doctor and his / her staff, because you will have questions and you need to trust their answers.
6. Follow-through on your treatment for your child.  

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.

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.

We had to leave him behind

Each night we have to spend about three hours distracting Eli from his eye patch.  Most of the time he wears it like a champ.  But we have to do something "fun" as soon as it goes over his eye.  Sometimes it's swimming in the inflatable pool with his big sister.  Sometimes it's eating dinner.  (Yes, Eli thinks eating is pretty much the best thing ever.)  Last night it was a trip to Home Depot.

As we were finally leaving Home Depot, Eli started yelling, "Momo!  Momo!"  Which translated means: "Elmo."

Sometimes he says this for no reason.  He's bonded so strongly to the character that he only wants to watch "Momo" while eating his breakfast.  Heaven forbid we should forget to turn on Momo in the morning!  So when he started yelling "Momo" I didn't really think anything of it.  That is until he started trying to jump out of my arms.

"Momo!" the cries went.

Still clueless I tried to put him in his carseat.

"Momo!  Momo!  MOMO!"

By this time Eli was using his freakish strength to prevent me from buckling his car seat.  That's when Heather pointed out that there was an Elmo doll in the backseat of the car next to us.  And I had foolishly walked past it.  Worse, Eli thought it was his Momo!  And because Eli runs on a strict "no toy left behind" policy, he wasn't going to leave Momo stranded in someone else's locked car.

So it was up to Dad to buckle him in and try and explain property rights as they've existed since Thomas Hobbes helped to articulate that vision in the 17th century.

But Eli wasn't interested.

In fact, I'm pretty sure this is a faithful recreation of that conversation:




Eli may have forgiven me, but he hasn't forgotten, as no one is allowed to touch Momo this morning.

Momo with a place of honor for breakfast

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.