October is Spina Bifida Awareness Month.

It seems appropriate to me that October is Spina Bifida awareness month. Every year on October 25th I am catapulted back to my (former) OB's office and hearing the words "Spina Bifida" for the first time as they related to our unborn son. I can still hear the words as if it were yesterday ... “Ms. Hinson – I am so sorry, but your son has Spina Bifida and after reviewing your son’s ultrasounds we just don’t like what we see.” I listened carefully as my doctor began lots of sentences with “Henry will never, Henry may not and Henry just won't be able to ________ ”. What was I supposed to do with that? I didn't really know where to begin or what questions to ask. All I knew was that Henry was our child and we were going to fight for him, to love him and believe without any doubt that Henry’s life has purpose regardless of the "would nots".  So I walked out of his office that day with tear stained cheeks and a mission to learn everything I could about this child we had been given.

So I did what "they" tell you not to do - I googled Spina Bifida. If you have ever tried to use
Google to deliver a diagnosis well then you know I was convinced Henry was going to be born with 3 heads, 12 fingers and may or may not have looked like a velociraptor. We'll blame that all on the hormones.

We were eventually invited to a playgroup with a local Spina Bifida organization and it was really remarkable, but what was so remarkable about it is that it was unremarkable. Parents were sitting around a table lamenting about the latest annoying theme song to their child’s favorite show, a mother was talking about how she had just purchased new shoes for her son only to watch him out grow them 3 weeks later, they talked about their summer vacation plans and their daughter’s latest doctor’s appointment.

As I listened to them I watched their children laughing and playing around the perimeter of the room. These kids were doing all the things that doctor had told us just weeks before Henry would never do.

Being in that room that day with that group of parents and their children gave me the greatest gift for Henry. They gave me an attitude adjustment because it became very clear to me watching these children and listening to their parents that doctors can be wrong.  Yes, he has Spina Bifida, but Spina Bifida is never going to be the coolest thing about Henry Hinson.

Henry is almost 3 now and the learning curve has been steep for Nathan and me for sure. The day Henry was born I didn’t just gain the title of Henry’s mom, I became Henry’s nurse, his advocate, and got a crash course in medical school.

He has had a total of 13 surgeries (number 14 is scheduled for Oct. 29), 27 plus trips to the Emergency Department, 20 hospitalizations, and countless visits to see his pediatrician above and beyond what would be standard; my husband and I have a running joke with Henry’s pediatrician, that room number 3 is the Hinson timeshare. So if ever you take your kids to KCMA Breckenridge ask for room number 3 and the visit is on us!

I know this sounds like a lot, and believe me some days it is, but I don’t tell you all of this to make you feel sorry for us because most days my family is living life like just like your family. Having Henry has just meant that we adjusted to a new normal; we live our lives around cathing schedules, doctors’ appointments, and trips up and down I-71. Yes we spend a lot of time at Cincinnati Children’s Hospital, but because of that we also get to spend a lot of time at IKEA and eating Dewey’s pizza!

Please don’t miss what I said -- I said we are living our lives. We are laughing, we are finding joy in watching our boys become brothers, we watch Oliver make Henry laugh so hard we have to take Henry into the next room so he can catch his breath, and we celebrate milestones like you wouldn't believe.

Having a child who has Spina Bifida hasn't turned me into some superhero mom. Most days I am like any other mom raising two boys, my feet hurt, I have dirt in my hair, ketchup stains on my brand new white shirt and I probably ate a cold dinner. Some nights I get to my pillow and I think somewhere in the ceiling there should be confetti cannons going off and a cheering squad chanting “you did it sister, you did it! You made it through this DAY!!!”

Henry is a happy little boy who is figuring life out and adapting where he needs too. He isn’t walking quite yet, but he wheels around in his ZipZac wheelchair like he is Mario Andretti looking for a checkered flag, he goes to a normal preschool and learns like everyone else in his class, he is even learning to throw tantrums when he doesn’t get his way.

People often ask me if I had the opportunity what would I say to that doctor now? Well I think I would tell him that with new advancements in medical technology, new therapy techniques, protocols, and advances in surgical procedures there is no room for the small mindedness of delivering the diagnoses the same way it was delivered 60 years ago. These advancements are making it possible for those living with Spina Bifida to have full active lives.   They can run on a cross country teams, they can become lawyers, or a XGames celebrity because they can do big tricks in their “wheels”, they can dance, they can sing, they can become doctors, professors, mountain climbers... they can do this because they can and will go #beyondlimits.

We're walking through, people!

I posted this earlier today on facebook and wanted to also share it here and expand it a bit... 

With the sad heartbreaking news of the death of actor Robin Williams there have been lots of conversations in the last few days on our radio stations, TV stations and on social media about depression and mental illness in general. I firmly believe that as a community we need to be talking about these issues more often. I think we are not so good at helping people who face or deal with mental illness…there is often a rush to help when someone has just found out they have cancer or they have had a heart attack,  but dear me you've just been diagnosed with bipolar disorder or depression or anxiety… we can’t help you or maybe it's just that we don't know how to help you, so we aren't going to do or say anything.

There have been any number of things that have happened in the last 2 years that have caused me to struggle with anxiety. It’s been hard. I have been angry. I have been sad. I have been overwhelmed. I have been depressed. I have been anxious. So take a little walk with me for a second because #thisistheface ...

I struggled a great deal with the Lord during a particular season of my life where I couldn't make sense of the feelings I was having. I couldn't understand how as a follower of Jesus I could keep trying to choose joy, but it felt like, at times, joy wasn't choosing me. And then one afternoon I was reading through Psalms and landed on Psalms 23.

“Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” 

And then it was as if the Lord hit me upside the head with a spiritual 2x4… I was going about this all the wrong way. I was trying to choose something that wasn't even a choice at that moment. Did you catch it? I made it bold because I didn't want you to miss my 2x4! "Even though I walk through..." Absolutely brilliant!

Never once did I hear the Lord say to me “choose joy, happiness, sunshine or rainbows”... He only ever asked me to choose Him. In the valley the Lord is my choice. And then slowly He picked me up and set me on my feet and then He began asking me to do something a little harder... He asked me to WALK THROUGH. To leave the place I was. To move forward. Which is not to undermine what I was dealing with, but I couldn't pitch my tent in the valley of anxiousness. I couldn't stay there. So that’s what I did; I started walking through the valley. I don't know what your valley is and sometimes the valleys may come for a day, a month or even years. When you're in the midst of something like this you may feel like there is no choice. I felt for time I didn't have any choices in the matter this was just the way it was, but then my 2x4 and I discovered that my choice, my only choice, is to walk through. Here me when I say this... it wasn't like I read a scripture and then jumped right up and sprinted out of that valley. No friends, there were days in the darkest of this valley that I could only muster one step, one tiny step, but the Lord met me with unwavering kindness.

If I just committed to walking through the valley a little each day He eventually picked up my pace and He carried me out. I was in counseling for several months and my counselor actually started asking me “how many steps did you take today” and it became this beautiful reminder that the Lord doesn't care if I have a smile plastered to my face or tears staining my cheeks it only matters that I choose Him.

Today was anxiety free, but things could change in an instant. I have equipped myself with education and a good therapist. So now I know if things start to feel more out of control than is necessary (hey I have 2 small children and never ending laundry there are areas of life that can be a little reckless) I can ask for help. I know where to turn for help.

So I am standing with my friend, Cory Dahlkamp, in the #thisistheface campaign because I think it's important that as a community we talk about these things. We must talk about mental illness. We must be open and honest and loving. We may even have people in our lives at work, school, church or right next door that need a hand to hold while they're walking through. We need to make sure people know that it's ok. You're not alone in any of this.

It is never an easy place that God puts us in when He asks us to reveal the most vulnerable parts of us to the world, but I would encourage you to be brave and stand with me!

As many of you know I love a good song... and you also know I love the band Carrollton and they released the official lyric video of their new song Holding On To You today. Ya'll this happened today, TODAY,  as all of this stuff is bubbling up in my soul they release this video, today... care to guess what it is about? Coincidence? I think not -- God is shaking things up. 

Because even in the darkest valleys we walk through the sun is gonna rise once again. 

Here we go.

So it’s been a long time since I have written a blog. A long time. I feel a little guilty about it only because writing is something I love to do, but I also love having a clean house, clean kids and a healthy marriage and a good night’s sleep so unfortunately this blog has taken a hiatus while my family has gotten busy living this life that the Lord has blessed us with.

I had really hoped when I was able to start this post that  I would be using this as a “catch up on the Hinsons post”, but there is other news to share.

As many of you know (through facebook) Henry had a shunt malfunction 2 days before Christmas and was in fact in the operating room on Christmas Eve. Henry had an MRI early that day that clearly showed his shunt was failing. The ventricles in his brain were enlarged and his syrinx, a fluid filled cavity in the spinal cord,  had nearly tripled in size.  A large syrinx is not a good thing, but more on that later. The hope was that when they replaced the shunt parts and it was working again that all of this would take care of itself.  We had a follow-up MRI on Monday and the results were mixed. His ventricles are back to baseline and look really good. His syrinx, however, is continuing to get larger and spread up the spinal cord. 

A syrinx is not a medical condition that happens on its own. It is however the result of an obstruction to the way that Henry’s Cerebrospinal fluid (CSF) flows. In Henry’s case he was born with something called a Chiari II Malformation. Which means that part of his brain grew down into the brain stem during development. We have been very blessed that Henry has not had problems with his Chiari, as it can cause breathing issues, feeding issues, hearing issues, etc., but it is causing the syrinx. So the way they will finally rid Henry of this pesky syrinx is to decompress his Chiari.

Henry has been scheduled for Chiari Decompression surgery on Friday.

This is not a simple surgery, but then again what surgery is simple? They will be operating at the base of his skull. The surgery involves removing the lamina (bone) from at least the first two vertebrae. The reason they do this to correct the syrinx is that it will create more space so the CSF has the ability to flow as it should naturally and not force itself into Henry’s spinal cord. This surgery is something we were really hoping to avoid; and his doctors have been keeping a close eye on the development of the syrinx over the course of Henry’s first year and there really isn’t another option. If left untreated we are talking about serious spinal cord damage as a result of the force of the fluid on the nerves in the spinal cord.  Henry will be in the operating room for 4 to 5 hours.  Once the surgery is complete Henry will be in the PICU for at least 24 hours, but realistically it will probably be 48 hour stay in the PICU. Henry is almost a year old now and how he understands and experiences pain is very different than when he had his closure surgery at 17 hours old or even with his shunt surgeries. He will be on a pain pump as well as some heavy duty muscle relaxers and once they see that he is doing well they will move us out of the PICU and we will spend a few more days on the neuro floor. Realistically we are looking at 5 to 7 days in the hospital.

I have committed to being honest about our family's journey with Spina Bifida and if you will allow me a moment of sincere honesty … this sucks. My heart hurts just thinking about what Henry is about to experience. I know without a doubt that we have made the right decision for Henry, but there are so many raw emotions that accompany things like this that if I allowed myself too I could fall into depression, I could fall into anger, I could fall into fear, but I am choosing every moment, with every breath, to fall into Jesus. 

I think I have talked here before just how much my soul is fed by music. When I had to relocate right before Henry was born it was my great fortune to be able to worship with dear friends at Center Point Christian Church, which is the church home of a few of the members of the Carrollton Band. I have long be a fan of their music, but on this particular night I heard a song of theirs that I hadn't heard before called Holding Me. That night it blessed me to my core and it has become one of my favorite songs. It has also become a go to song of mine in times where I need to be reminded that Henry is firmly in the hands of Jesus. 

The last few verses of the song will be my anthem over the course of the next few days. I will sing these words in the waiting room, I will sing these words at Henry's bedside, and they will be a constant reminder that the Lord, who does ALL things, is holding us firmly and tightly in His hands.

You are the one who walks on water 

You are the one that calms the seas 

You are the one that holds the Heavens 

And I believe you are holding me. 

You're the one who bring the morning

Fills the sky with Majesty

Lord you're the one who holds the heavens

And I believe you're holding me

Lord I believe you are holding me. 

*Shameless plug you can pre-order the bands Breath In Deep EP on their website. I promise it will bless your socks off!   

How to pray...

No doubt I believe that the scriptures are true when 1 John 5 tells us "And this is the confidence that we have toward him, that if we ask anything according to his will he hears us. And if we know that he hears us in whatever we ask, we know that we have the requests that we have asked of him." 

• Pray for Henry. Pray that he is not fearful. That his pain would be manageable and that through all of this he will still be able to smile that big smile that melts the hearts of many. 
• Pray for Henry's team. From his Neurosurgery team down to the food service employees. These people do unbelievable things with technique and technology every day. I am grateful for these people. 
• Pray for results. Pray that this surgery will do what it needs to do in removing the fluid from his spinal cord and that we will see remarkable results and no further surgical intervention. 
• Pray for Oliver. Once again we are shuffling up his normal routine and that takes a toll on his little heart. We have tried to explain all of this to him in a way that he can understand, but these are big concepts for a 3-year-old and all he knows is that his mom and little brother are going to be gone for what seems like a really long time. 
• Pray for Nathan. He will be able to be up in Cincinnati just through Sunday and then he will come back home to resume a "normal" schedule with Oliver. I can't imagine the worry that comes from having his family in two places for longer than a day in his role as protector and provider. 
• Pray for me. Living in a hospital is hard, pray that the Lord will bring me encouragement when I need it. Pray that as a family we would be usable by God should He see a need to use us to bless or encourage someone else while we are staying at CCHMC 
• Pray for provision. I used my last vacation day to take Henry to his MRI appointment. So while we know that God will provide for our every need there is some financial stress that comes along with me taking unpaid leave. 
• Pray for our parents. They will be filling in the gap while we are gone. My parents and Nathan's parents go through a whole different roller coaster as they watch their children go through heartache and watch their grandchild go through something this big.  
• Pray that there are no significant weather events. I mean mother nature is crazy these days.  

We love you all so very much and we are grateful for each and every one of you that take time out of your busy lives to pray for us, encourage us, to love us and to walk with us. 

^"You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the LORD will give you, Judah and Jerusalem. Do not be afraid; do not be discouraged. Go out to face them tomorrow, and the LORD will be with you.’” 2 Chronicles 20:17

- Erin 

Out in Public.

So this past Thursday I got brave. Real brave -- and decided to take Oliver and Henry out by myself for the first time. We went to a place in Louisville that Oliver loves called All About Kids I figured it would be the easiest place to take them by myself since I could wear Henry and then Oliver would be well entertained by the bouncy houses and the open gym.

Everything went pretty well, with the exception of a few questions about "the thing on Henry's head" -- but more on that in a minute, until it was almost time to go. I love my boys but this tag team business started way earlier than I had anticipated. Henry decided in grand fashion to have the nastiest diaper explosion of his life at the very same time Oliver decided to have a melt down of epic proportions because it was time to leave. Once I got Henry cleaned up and Oliver happy with some juice I started looking for my keys. I tore through the diaper bag and those blasted keys were no where to be found. I hate that feeling. Sheer panic started to set in. What in the world was I going to do? How were we going to get home? My Kroger plus card had enough points for 30 cents off the gallon -- and now it's with my keys in the land of lost!

So I put everything back in the diaper bag and we found our way to the front desk. At this point I had myself so worried that we were going to be stranded that the woman behind the counter looked at me with such pity. I am pretty sure&nbsp my eyes were welling up with tears, alas, no one had turned in any keys. Please keep in mind I had taken Henry out of our ergo baby carrier so I had it, our diaper bag which is a back pack, Henry and Oliver  somehow with just my two hands. I am sure it was a sight.  We headed to the car praying that my keys were locked inside of it and to my surprise they were not locked in the car because the car wasn't locked. My keys were still in the ignition. Oh. My. Word. I had left my keys in the ignition for a little over 2 hours. Here I was thinking I had this whole mom of 2 children thing down pretty well. Humble pie much? Thankfully we were in a safe part of town where no one was interested in stealing my cheerio and gold fish laced sedan.

So the biggest take away of the day is to always-- ALWAYS-- put the keys in the diaper bag before I get anyone out of the car no matter the whining, the rush or the smell. But the other thing that I took away from our outing is that being Henry's mom also requires me to be an educator. It is something that I have been praying about since Henry's birth and had been anticipating/dreading the day that it would happen. Henry's shunt and the tubing that accompanies it is very noticeable right now because Henry has no hair and, while he is a chubster, his head has little fat to disguise or hide the valves. I want to handle the questions that people have about Henry with as much grace as possible. Most of the mothers we encountered while at All About Kids  didn't ask anything; they just stared at him and at me which I almost think is worse. I assure you it is extremely difficult to remain graceful when another mother looks at you and then points to your child and says "what's that on his head?" Trying not to give it too much thought I dove right in to why Henry has a shunt and what Spina Bifida is. I would give them a few sentences and then if they had more questions I went where they wanted to take the conversation.

Once people know what the shunt it all about they either become more curious about Spina Bifida than I would have thought or they talk about their second cousin on their mother's side that dealt with Spina Bifida 25 years ago. But I feel like all anyone really wants to know about Henry is "well can he walk?" Let me just throw this out there ... I have never met a 2-month-old that can walk. :) I know people will have questions and I know that they won't always know how best to ask them so it is my hope and prayer that as our family becomes ambassadors for Spina Bifida that we do it well. I found this verse a few weeks ago and after our little outing it's a scripture that I believe needs to go in the "stack to be memorized". It's a good reminder that whatever our speech it must be with grace.

^"Let your speech always be with grace, as though seasoned with salt, so that you will know how you should respond to each person" Colossians 4:6 

I mean aside from our little diaper explosion, melt down and lost keys extravaganza it was a pretty good trip and it severed well as a way to completely exhaust both my children. Oliver from bouncing all over the place and Henry from being on stimulation overload with all the lights and sounds of toddlers running around. Oh what an adventure it is going to be to be the mother of these two boys.

On the way home I captured this great video of Oliver trying desperately to stay awake and eat his snack, but in the end sleep won out and it was hilarious.

-Erin-

The Circus Train

When we moved into our home I wasn't sure how I would like having a double train track just behind the privacy fence. For the most part you get so used to the trains that sometimes you don't even realize they are there and I haven't had a train wake me up in the night for a good 6 months. But this week having train tracks in our backyard became cool for all of about 15 minutes as Oliver and I stood outside and literally watched the circus come to town.

I feel like seeing the Ringling Brothers and Barnum & Bailey Circus Train in your backyard is a once in a lifetime thing so I did what any mother would do -- I woke Oliver up from his nap (I paid for it later) but we watched, and waved and we talked about Elephants and the "animal train" for the rest of the day.

 

-Erin-

North I-71...again.

Bringing Henry home was amazing; it was nothing like I could have imagined. I also couldn't imagine that just 4 days after returning home to my family Nathan and I would be headed back to Cincinnati.

To say I was frustrated about driving back up to Cincinnati is an understatement. 4 days we got to spend as a semi-normal family, just 4 days and it was heartbreaking to leave --again. For reasons unknown Henry's incision opened nearly 3 weeks post op. I have a pretty strong stomach when it comes to things that are considered gross but this was like nothing I had ever seen in my life and nothing a mother should ever see in her child. Thanks to modern technology I was able to send pictures to Henry's neurosurgeon and got a call within about 15 minutes of emailing the pictures and when I answered the phone he said "get in the car, now". 

So Henry's neurosurgeon and a plastic surgeon took him back into the OR for a third time to revise his incision and we stayed inpatient for another 8 days. This hospital stay was VERY different. We didn't get to go back to the NICU we went to the neurosurgery floor which meant I didn't leave Henry alone -- ever.  I slept, ate, showered, lived in his hospital room this time. I still think I am trying to catch up on the sleep I missed. Any one who has spent a night in a hospital will tell you that sleep is a sweet commodity; nurses coming in at all hours, waking up to feed and cath, taking showers at 2 am because you don't want doctors doing rounds at 6am to see you in your pajamas looking like a crazy woman become totally normal. Unlike the anticipation of bringing Henry the home the first time this time around I just felt so discouraged. 

This post would be a complete lie if I didn't acknowledge that there were several moments of this stay that I tried throwing myself a pity party. It wasn't fair. There was one night while Henry and I were there -- it was a Monday-- this particular night I was working on all the arrangements for said pity party and I remember just crying. Nathan had left the day before and I just felt helpless, alone and exhausted.  I began asking, out loud, for the Lord to send me a sign that I wasn't alone in all of this.  I needed to know that God had been hearing my prayers and that my son was going to be ok, that we were eventually going to get to go home and that some how He had not forgotten me-- that this was some how part of His plan. 

I felt led to play some music while Henry was eating at some point late that night or early the next morning so I just hit "shuffle" on my phone and what happened next was nothing short of God showing up. I had heard the song "Sing Along" by Christy Nockels a hundred times before but never before had I HEARD it like I heard it that night. 

I felt like a captive in that hospital room, I felt alone, it seemed dark but hearing this song on that night God gave me all that I needed. "From the farthest corners of the earth/ still His mercy reaches", I needed the Lord to sing to me that night, I needed to hear His heart, I needed a God sized hug, I needed to know that He had heard my cries and that He would give me the strength to keep singing and to sing along to His song. 5 minutes and 44 seconds was all I needed to be refreshed, refilled and the knowledge that indeed God hadn't forgotten us but that He was singing over us the entire time.

"The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.” Zephaniah 3:17

 

-Erin-

 

 

 

Home.

On March 14, 2013 we received Henry's discharge papers. We knew the day before that the following morning in rounds they would give us the all clear but we didn't tell anyone but a few family members because if I learned anything in the NICU it's that you take it a day at a time and I didn't want to tell the world we were coming home until Henry was buckled into his car seat. 

Rounds always started around 7:30 in the NICU and I wanted to be there for Henry's last rounds and I am so glad I was. If you have never experienced rounds before -- it's something. There can be up to 12 doctors and therapist that come around with their computers on stands and review each baby. Though out our stay in the NICU we called them the "MD Calvary" because that's exactly what it looked like. The resident "presents" Henry to the attending doctors and they talk over every single aspect of his case, his condition, his recovery right down to his big brother's name. Thinking about Henry's last rounds still brings tears to my eyes. Hearing "If there are no other questions then Henry Hinson is cleared for discharge and is to be released this morning to his mom and dad... ladies and gentleman of the G-pod, Henry Hinson is going home!" Then anyone that was within ear shot clapped and I of course cried.

Henry had never been off the monitors, had never been more then a few feet from a trained nurse or doctor, God love him the boy had never even worn pants before and now, just like that, we were taking him home. It seemed so surreal to watch the elevators doors close and realize that Henry was with me in the elevator wire free and buckled in a car seat. The first major chapter of Henry's story was ending and it was a wee bit terrifying to think I had never spent a full 24 hours with this little guy and we were about to dive head first into a life of 2 am feedings, endless diaper changes, life with two kids, and he would be free of monitors, nurses, doctors.

We were headed south on I-71 roughly 80 miles to the land of a new normal.

After an hour and a half in the car we pulled into our drive way the sun seeemed to be shinning so brightly that day. Oliver had been napping so when we got home I was able to go into his room and wake him up. His little first was full of excitement and a little confusion because I had been gone for 5 weeks, so who knows what he was actually thinking when he saw me.  Oliver wasn't able to see anything more than pictures of Henry so we had no idea how he would react. I don't even have the words to describe their first meeting -- just joy. Watching Oliver meet Henry for the first time is a moment that I will spend an eternity praising the Lord for.

I am so thankful that my mother-in-law and that my very talented friend Whitney of Whitney Knutson Photography were there to capture the moment on video and amazing pictures so that the boys will have that moment forever.

Welcome home, Henry.  (YouTube Video)

 

 

-Erin-