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...
Wednesday, August 21, 2013
Monday, August 19, 2013
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...
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.
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.
Wednesday, July 24, 2013
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?
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:
 |
| 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:
- Don't panic.
- Do your homework by talking to friends, family members, and doctors.
- Go for consultations, and meet people in person (if possible).
- Don't be afraid to ask questions.
- 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.
- Follow-through on your treatment for your child.
Monday, July 22, 2013
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:
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.
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.
Friday, July 12, 2013
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.
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.
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.
 |
| Eli has learned to be terrified of doctor's visits... |
Friday, June 14, 2013
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 |
Monday, June 10, 2013
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.
"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.
Subscribe to:
Posts (Atom)