You are Special

One of my favorite books is You Are Special by Max Lucado.  This story is about a Wemmick named Punchinello, who lives in a village full of other Wemmicks who go around putting stickers of stars or dots on each other based on their looks and their talents.  They get stars if their wood is shinny or they can do special things.  Dots are given to the Wemmicks whose wood is chipped, who can’t do anything special, or end up making a fool of themselves.  Punchinello has received many dots and ends up feeling down about himself. One day he meets a Wemmick named Lucia, who doesn’t have any stars or dots.  It wasn’t like the other Wemmicks didn’t try to give her stars or dots, they just wouldn’t stick.  Punchinello asks Lucia why the stickers don’t stick when others try and give them to her.  She tells Punchinello that she goes and sees Eli, the woodcarver, every day and that he should go see Eli too. So, Punchinello decides to go and see Eli and find out for himself why the stickers don’t stick to Lucia.

I feel like in some ways we are all like Punchinello but strive to be Lucia.  We all want to do and be our best.  We want to be recognized by others for the good we’re doing, and that’s normal.  But sometimes I feel like we define ourselves based on what others think of us instead of defining ourselves based on what our Heavenly Father thinks of us.  I know that for me I tend to let other people define me or I define myself with labels that stick to me like the stickers in the story.

 What do these labels look like?  They look different for everyone based on each person’s unique journey.  For me, some of my labels include: “expensive,” “perfectionism,” “not smart enough,” “not talented enough,” “too many medical problems,” “always be happy,” “I’m a burden to others,” “I don’t deserve the same things as other people,” “I don’t deserve to be loved the way I am,” “not a great communicator,” and “not good enough overall.” 

Labeling ourselves is one of the worst things we can do, yet I feel like we all do it even when we know we shouldn’t.  I am guilty of doing this and I do it all the time.  I tend to care more about what others think of me and that causes a lot of weight on my shoulders and it affects how I think, what I say, and what I do. I don’t give myself enough credit for all the good things that I’m doing or all the things I have conquered and overcome in my life. I know the adversary likes it when we’re hard on ourselves, when we don’t think we’re good enough.  He loves to see us struggle and works so hard to get us to forget who we really are, children of God.

Towards the end of the book, You Are Special, Punchinello goes to see the woodcarver, Eli.  He gets to the workshop, gets nervous and turns to leave when he hears Eli call his name. Punchinello asks, “You know my name?” Eli responds, “Of course I do. I made you.” Eli picks Punchinello up off the floor and sets him on the bench. Eli recognizes that Punchinello has a lot of dots.  Punchinello apologizes for having all the dots and Eli says, “Oh, you don’t have to defend yourself to me, child. I don’t care what the other Wemmicks think.” “You don’t?” replies Punchinello. “No and you shouldn’t either. Who are they to give stars or dots? They’re Wemmicks just like you. What they think doesn’t matter, Punchinello. All that matters is what I think. And I think you are pretty special.” Punchinello asks Eli why he’s special since he can’t do certain things. Eli responds, “Because you’re mine. That’s why you matter to me.” Eli goes on to explain that Lucia comes to see him everyday and that the stickers don’t stick to her because she has decided that what He thinks of her is more important than what the other Wemmicks think of her.  Eli tells Punchinello to come and see him every day and then leaves him with these final words, “Remember, you are special because I made you. And I don’t make mistakes.”

I love this story because it relates so well to each and every one of us. I feel like we sometimes get lost on our journey through this mortal life. We are constantly bombarded with the noise of the world and we can get caught up in thinking that we’re not good enough. We put labels on ourselves and we start believing those labels, which in turn affects how we think and the things we do. Just like the woodcarver in the story, we have a Father in Heaven who loves us more than we can ever comprehend. He doesn’t like to see us hurting.  He doesn’t want us labeling or comparing ourselves to others because He created us to be the unique individuals we are.  He wants us to care more about what He thinks of us than what others think of us.  I know that each one of us is special to our Maker because He made us, and He doesn’t make mistakes.

Blessings All Around Us

Everyone on this earth has a unique journey they must go through.  At times the journey may be easy and other times it might be more than you think you can possibly endure.  You may cry out in anger about why you must go through a particular trial, and I think that that is perfectly natural because we cannot see what God can.  I believe that when we’re stuck in the middle of a trial, it’s harder for us to see the blessings that are all around us. But if we open our eyes long enough, we might just be able to see some of the blessings that are ours that are given to us by a loving and wise Father in Heaven who loves us more than we can comprehend.

Over the last few months I have tried to stop and take a step back to see all the blessings that are around me as I have been going through another very difficult trial.  Since being back on crutches (three months now) I have had to encounter some difficult things and make decisions I never dreamed I would have to make.  As I was experiencing these things, I didn’t take the time to see the blessings that were coming to me, instead I tended to look at the negative and wonder why these things were happening to me.  It took me a couple of months to realize the blessings that were all around me.  The blessings that I received helped me once again know for a fact that Heavenly Father is always there for me and loves me and will bless me with the things that I need to make it through the hard times.

After finding out that my Talas had fractured in my foot, my orthopedic surgeon wanted me to start taking a medicine called Forteo.  Forteo helps your body produce more osteoblasts to grow more bone and is mainly used to treat osteoporosis in men and women who are at risk for fracture.  I’ve lost bone density so the hope was that by taking Forteo, new bone would grow in my foot and my foot would become stronger.  In theory this medicine sounded like a good option, at least that is until we started doing research on it.  Foreto has a lot of things going against it which made me think twice about taking it.  For one, it’s a daily injection that has some not so great side effects.  It can cause nerve pain, heartburn, back spasms, and bone cancer (all things I didn’t want to have to deal with).  Two, there is no way to target bone growth in a specific area.  The new bone can grow anywhere in the body, but it mainly grows in the spine.  Three, if insurance won’t cover the cost it’s about $1,500 a month and you can’t take it for more than a total of two years during your entire life.  All these things combined made me very leery of this medicine and I decided that I really didn’t want it.  As I prayed about it, I got an uneasy feeling and each time the name Forteo was brought up it just didn’t feel right.  As I think about it now, I know that Heavenly Father was guiding me on what I should do when it came to getting the bone density in my foot back.  Medicine has come a long way, but this medication was not for me and it was not the answer to getting my bone density back.

So where were the blessings? I believe one of the biggest blessings from this experience was that because there is so much medical knowledge available, I was able to be prepared to discuss my options with the Sports Medicine doctor who prescribes Forteo to those who need it.  As we talked during our consultation, I had a strong feeling that I was not supposed to take Forteo.  I had my answer that no matter what I wouldn’t take this medication, but I still agreed to go through the process to see if my insurance would even cover it.  When my insurance company came back saying they wouldn’t cover the cost because I didn’t meet the general requirements, I was so relieved and again felt another confirmation that I wasn’t supposed to take this medication.  I don’t know what would have happened in the long term if I had started taking Forteo, but I have to believe that it wouldn’t have been good.

Soon after I got engaged, I met with a high-risk OB/GYN to discuss my options about having kids.  Growing up with heart problems I was always told by my cardiologist that when I had kids, I would be considered high risk, but my problems wouldn’t stop me from having kids.  In 2011, I had to have my aortic valve replaced and my surgeon asked me if I was planning on having kids.  When I told him yes, he agreed to put in a tissue valve instead of a mechanical one so that having kids would be possible.  Fast-forward seven years and I found myself sitting in a consultation room, being told by the high-risk OB that given my complex medical history I couldn’t have kids because the danger was too high.  When I had my valve replaced back in 2011, I had yet to have a stroke, vascular problems, an undiagnosed genetic disorder, and a history of bleeding.  Because of everything that has come about in the last few years I am now at an even higher risk than if I was just dealing with my heart problems (which are complex in and of themselves). The doctor told me that if I were to get pregnant the chances of me either becoming permanently disabled or not even making it through the pregnancy were extremely high.  He also told me that if I ended up getting pregnant, I would have to abort the baby because of the danger it would bring to me.   We discussed some of the very few options I had, and he told me that he would be talking with my cardiologist, vascular surgeon, neurologist, and two other highly recognized doctors at a convention he was talking at the following week, to get their take on me having kids.   Even though I knew deep down that I needed to adopt (and have known for years) I still left that appointment discouraged and feeling like my limited options were going to make me seem like a bad person and that I was letting my fiancé, future family, and Heavenly Father down. 

The blessings from this experience took a while for me to recognize and to be honest I’m still in the process of recognizing them.  I feel like one of the biggest blessings that I have received from this experience is the support and love I have felt from my fiancé, family, and especially my Heavenly Father.  Another blessing came soon after my OB got back to me after talking with all these doctors.  He told me that they all agreed that I shouldn’t have kids because my risk was too high.  I was once again given my options and told that he would be there to help me no matter what option I chose. As I talked with my mom, she gave me some counsel that she was given when her doctors told her not to have any more kids (this was after my older brother was born).  She told me to fast and pray about it. My fiancé and I were going to be going to the temple the next day, so I decided to start fasting about the decision I had come up with and take it to the temple. As my fiancé and I drove to the temple we discussed our options and as I was in the temple, I received my answer.  A blessing I recognized quickly was that my fiancé and I could start making hard decisions together as long as we both included the Lord in our counsel.  I know that this will be a continued blessing throughout our marriage.

Knowing that I physically can’t have kids has been hard on me, but I have received countless confirmations that I am supposed to have my family through adoption. These confirmations I have received have truly been a blessing to me.  They have reaffirmed that Heavenly Father has a plan for my life, and He is unfolding it to me piece by piece.    

When we have to pass through a difficult trial it can be hard to recognize the blessings that are being poured out to us.  We may sometimes feel like Heavenly Father doesn’t care about us.  We may even feel abandoned and completely alone, but I know that we are never alone.  We have a loving Heavenly Father who is so aware of us and what we are going through.  Not only do we have a loving Heavenly Father, but we also have our Savior, Jesus Christ, who knows exactly what each one of us are going through and what we are feeling.  He has taken upon himself our pains and afflictions so that He can succor us.  If we will let Him, He will lift us up and give us the strength so that we can make it through any trial that comes our way.

There are blessings all around us and while they may be difficult to see, if we will take a step back and open our eyes, we will be able to see just how much we are loved by our Heavenly Father.

Doubt not, but be believing

A few days ago, I came across a question that has stayed with me and has been on my mind constantly. Elder Dale G. Renlund, of the Quorum of the Twelve Apostles, asked this question on his Facebook page, “When was there a time in your life when you’ve had to doubt not, but be believing?” When I saw this question, it made me stop and really think about a time I’ve had to doubt not but be believing.  As I thought about it, I realized that at this very moment I am having to doubt not but be believing.

Back in July of 2018, I finally started walking again after months/years of not being able to.  I was excited and determined to get to the point where I was before I had my stroke and problems with my spinal cord.  I knew it would take hard work and dedication, but I knew I could get there because that was what I really wanted. If you know me, you’ll know that I’m stubborn and determined when I really want something, especially when it comes to my health. So, I started working on walking, getting stronger, and being able to be around others without feeling like I was going to fall.  It took some time, but I eventually got there.  I could finally walk without having to use a crutch to keep me balanced, and I could be in public without completely feeling like I was going to fall over.  I finally started feeling like my life was getting back on track and that I had reached the light at the end of a very long tunnel.  But then out of nowhere, that tunnel collapsed, and I could no longer see the light. 

At the end of October 2018, I went in for a CT scan on my foot and to also have a Botox injection that would hopefully help the muscles in my leg stop being so tight and pulling my foot in an outward position.  The day after my CT scan my orthopedic surgeon called (it’s never a good sign when this happens) and told me that my bones were collapsing and to limit my walking for the next few days until I could get into clinic again.  I followed up in clinic five days after he called me, the news wasn’t good.  The talas bone (one of the bones that makes up the lower part of the ankle joint) was fractured and collapsing.  The screw that was in my heel had also shifted and needed to come out before I could start walking again or it could move into my joint and cause a lot of damage.  So, I was put back on crutches for 6-7 weeks and told that I’d have another CT scan at that time to check if the fracture was healed. Then right after I had the CT scan, I would have surgery to take the screw out of my heel.

I was devastated that I had to go back on crutches, I didn’t understand why this was happening.  I had gotten engaged the day before and I tried to have faith that this fracture would be healed so I could be walking by the time I got married on March 29,2019.  I had a lot happen right after I ended up back on crutches and in the back of my head, I started to have doubts that I would be walking by the time I hoped to get married.  These doubts were constantly entering my mind until one day in December when I had an experience that made me realize that I needed to have complete faith in my Father in Heaven that everything would be okay and work out for my benefit.  So, from that day on I started to have faith that everything was going to work out and that I would get good news when I went in for the CT scan.

The day of my CT scan and surgery finally came.  I had the CT scan and I was pretty confident that everything was healed because it didn’t hurt to stand and put weight on my foot like it had 7 weeks previous.  As I was getting ready for the surgery my surgeon came in and told me that it looked like the bone was healed but he was also biased so he wanted to get the radiologists opinion.  I got excited when I heard him say it was healed and that there was a good chance that I could be up and walking by the time I hoped to get married. 

The surgery went good and not only did I get the screw taken out, but my surgeon also lengthened one of my tendons to help my foot relax and go back into a neutral position.  I woke up from surgery confident that that was the last surgery I’d have on my foot, only to have my hopes dashed again.  As my nurse was talking to my dad and I, my dad informed me that my facture wasn’t completely healed and that I still had at least one more surgery to go.  My hopes of being able to walk by the time I got married in March were shattered.  I was informed that I would be off my foot for another 4-6 weeks.  After that time, I’d have another CT scan and if the fracture was healed then I could go ahead and have the next surgery on my foot.  My foot is still somewhat deformed so I will be having a subtalar fusion which will hopefully make it so my foot is straighter. Recovering from a subtalar fusion is at least 8 weeks and then I have to slowly start introducing weight back onto my foot over a period of time before I will be able to put full weight on it.

As I started to process everything that was happening, I realized that I would not be able to get married in March, like I had planned on.  Actually, a lot of our plans have had to change as a result of my foot and it’s extremely frustrating.  I feel like I’ve gone through every stage of the grief cycle since getting the news, and coming to acceptance hasn’t been easy.  Despite not being able to get married in March, I know that my Father in Heaven is aware of me and my situation.  He knows exactly what I need and that everything is going to happen in His timetable.  While it’s frustrating not knowing exactly when things are going to get better, all I can do is have faith that it’s all going to work out for the best.  Right now, doubting is so much easier, but I know that if I put forth my faith, I’m not going to be let down and everything is going to turn out exactly as it’s supposed to. 

Has the Day of Miracles Ceased?

Over the past couple of months I have really been trying to focus on the miracles that have happened in my life, especially the miracles that have happened over the last three plus years.  As I have been  studying and pondering about miracles my whole concept of them has changed.  Like most people I always thought of a miracle as being healed without any explanation or avoiding danger because of a prompting.  While both of these things are miracles, I learned something else that constitutes a miracle.

In the October 2017 LDS General Conference, Elder Donald L. Hallstrom of the Seventy, gave a talk titled “Has the Day of Miracles Ceased?”  In his talk he said this about miracles, “defining a miracle as “a beneficial event brought about through divine power that mortals do not understand” gives an expanded perspective into matters more eternal in nature.  This definition also allows us to contemplate the vital role of faith in the receipt of a miracle.” When I heard Elder Hallstrom say this, I knew Heavenly Father was talking to me.  As I have continued to go back and study this talk I have felt an assuring witness that everything I have experienced in the last three plus years is indeed a miracle and that Heavenly Father is very aware of me and that He keeps His promises. 

When I started having problems back in May 2015, I was given a priesthood blessing by my dad and brother.  My family had also held a special fast in my behalf that I would be healed.  I felt like my faith was so strong and I knew that Heavenly Father would heal me and that I would be back to normal.  While things did improve to an extent after our family fast and the priesthood blessing I received, I wasn’t fully healed.  As time went on and I continued to struggle with really bad leg pain and eventually severe back pain I began to wonder why I hadn’t been healed back in May.  I began to wonder why I hadn’t received the “miracle” I thought I deserved and expected.  The day before I went in for surgery on my spinal cord, my dad and brother gave me a blessing.  In this blessing parts of the blessing I had received back in May were referenced.  After receiving this blessing I knew that after this back surgery I would finally be healed from everything and that I would be like I was before.  The full healing I had expected didn’t happen.  My severe back and leg pain did go away, but I was left with more complications I had to work through.  Losing the ability to walk, stand, and balance was not what I considered a miracle.  Everything else that has happened to me since then was not what I considered a miracle.  While I was able to see many miracles throughout this long journey I would not say that everything I’ve been through was a miracle.  At least I didn’t until I heard Elder Hallstrom define a miracle as “a beneficial event brought about through divine power that mortals do not understand.” 

After hearing this explanation of a miracle I knew that everything I had been through and everything I would continue to go through was indeed a miracle.  I know without a doubt that everything I have experienced in the last three plus years was “a beneficial event brought about through divine power.”  I never understood why I had to experience the things I did but I know that Heavenly Father knew I needed these experiences to help me grow and get to the place where I am today.  I am truly grateful for this miracle and for everything that I have experienced and learned along the way.  I now have a better understanding as to why I needed to experience the things I did.  Had I not experienced them I don’t know if my faith would be as strong as it is today, I wouldn’t have completely understood the healing that comes from the Atonement of Jesus Christ, and I wouldn’t have met the people I needed to meet along the way. 

In the last two months since I have really started walking again I have seen the healing I was promised in a priesthood blessing three years ago finally happen.  Walking is not easy for me and probably never will be.  After my last foot surgery back in May, I wasn’t sure what to expect.  I had a lot of fears about what could happen to my foot again, from blisters/sores that would put me back on crutches, to looking really awkward when I walk.  I never fully expected to see the progress I have made and I know my progress is because of a loving Heavenly Father who keeps His promises.

Walking can be painful and I tend to limp and am not graceful because of the position my foot is in and because I can’t feel anything it makes it even more awkward.  I first started walking again with a crutch.  After a couple of weeks I was finally able to get rid of it when I walked around my house but would still have to use it when I was out in public, mainly to help with balance.  My family went on a vacation to Yellowstone back in August and during that trip my dad put me through some intense therapy, which I hated.  I used my knee scooter to get around to most places in the park because I can’t walk long distances but if any place had stairs my dad made me climb them.  This was something I dreaded because I hated stairs and I didn’t feel ready for them.  The first couple of places that had stairs I would hold on to the rail with one hand and then my brother’s arm with the other hand.  After getting used to the stairs I was able to climb them without having to rely on my brother to help me.  I hated that my dad made me do stairs and I complained the entire time.  But I soon realized that I was getting stronger and that I could do stairs.  By my dad putting me through this “therapy” I got stronger and started to believe in myself and what I was capable of with my Heavenly Father’s help.  A week or two after our vacation I was able to finally get rid of my crutch altogether.  This was a huge miracle to me.  I had already come to accept that I would need that crutch every time I went out in public to help me balance.  Not having to rely on the crutch has been a huge blessing.  Another huge miracle I have seen in the last month is that I can walk (even though I look awkward) and be in a crowd and for the most part keep my balance.  When my doctor gave me the go ahead to start walking again he wanted me to do physical therapy to help with my balance and coordination.  I’m stubborn and didn’t want to do physical therapy so I pushed myself and prayed that I could make improvements on my own without having to go to therapy.  Heavenly Father blessed me with these things and I know that it is because of Him that I have made the progress I have. 

I know without a doubt that the day of miracles has not ceased.  There are miracles all around us, we just have to open our eyes to see them.  The trials we go through are miracles even if we don’t look at them that way.  I am grateful for the miracles I have seen and been blessed with in my life.  My journey with everything I have experienced the last few years may not be completely over but I know that with the help of my Heavenly Father I can get through anything and will continue to see miracles along the way.

Drawing Upon the Power of the Atonement of Jesus Christ

For the last few months I have really been focusing on the Atonement of Jesus Christ and how it has blessed my life.  I was taught about the Atonement of Jesus Christ from an early age, but to be honest I never fully knew how to access the power of the Atonement of Jesus Christ and use it in my life.  I didn’t understand just how powerful it is and how it could change and bless my life until about a year ago when I hit rock bottom and felt all hope was lost.

For some reason I seemed to really struggle accepting everything that had happened to me the last couple of years (if you don’t know what I’ve been going through, I explain everything in previous posts starting July 2016).  Every night as I tried to fall asleep the events of the past couple of years would play over and over in my head with the same question at the end, “Why did all this happen?”  Honestly I had no peace.  I was frustrated and felt like I wasn’t supposed to get better, and there was a time months earlier when my family and I didn’t know if I was really supposed to make it through everything or if it was my time to go.  I’d be lying if I said I wasn’t stressed. 

With so much going on I felt like I was drowning emotionally, mentally, and spiritually.  I was a mess!  In May 2017, my stress levels hit a very dangerous level.  With everything that had been going on in my life, I started to feel like I was a burden to my family and that was the last thing I wanted.  To be honest it’s one of my biggest fears.  Being so stressed, scared, and starting to feel like a burden, the adversary jumped on board knowing he could influence me because I was at my weakest point.  He whispered to me the solution to my problems, “end your life.”  I was scared and knew it was the wrong thing to do but in my mind I couldn’t be a burden to my family, I just couldn’t.  I listened to the adversary and decided to end my life, believing it was the best thing I could do.  Ending my life would mean that I would finally be free from all the pain (physical, mental, emotional, spiritual) that I had been experiencing and I believed that my family would be better off without me because they wouldn’t have to deal with everything that I had been going through and what I will continue to go through.  After deciding when and how I was going to end my life I got down on my knees and told Heavenly Father my plans.  I told him I knew it was wrong but I didn’t know any other way out and I wouldn’t be a burden to my family.  I experienced a very dark feeling.  I’m sure the adversary was thrilled knowing he was close to destroying another child of God.  I didn’t let on about my plans to take my life and I definitely did not talk to anyone about the things I was feeling and planning.  I didn’t want anyone to stop me.  I was convinced taking my life was the best solution.  A few days after making my decision my stress levels continued to rise and I had the overwhelming urge to just get it over with and take my life.  I even went in to the bathroom to get the pain pills I had planned to overdose with.  As I stood in the bathroom I couldn’t bring myself to grab the pills.  I went back to my room and sat down on the bed.  As I was sitting there this thought came into my mind and heart, “if you take your life you’re not enduring to the end.”  This statement pierced my heart so much and I knew it was from my Heavenly Father. He knew I wouldn’t listen to anyone else but knew I would listen to Him.   I knew that by taking my life I was not enduring to the end and I wanted to show my Heavenly Father that I could endure to the end despite everything I had and would go through.  I no longer felt the need to end my life.

I decided not to tell my family about coming close to taking my life.  I knew how they would react and I just didn’t want them to know.  It actually took several months before I got up the courage to tell them.  They reacted how I expected them to but they also showed a lot of love and concern for me.  My dad and I came up with a plan on what I would do if these feelings came back.  I was grateful to know my family was there to listen and that I could turn to them without feeling scared about how they would react in the future.

After this experience my life didn’t change, I still felt like I was drowning emotionally, mentally, and spiritually.  I still felt like a complete mess and was an emotional wreck at times!  I finally got to the point where I had had enough!  I wanted to feel peace in my life.  I wanted to accept everything that had happened to me.  I didn’t want to be burdened with the question of “why” hanging over my head.  So I finally turned to the Lord and starting relying on the Atonement of Jesus Christ to take away my pain.  I wasn’t quite sure how to access the power of the Atonement of Jesus Christ but I knew I had to figure it out.  I started praying and told Heavenly Father I was done feeling like I was drowning and that I needed help, the help that only the Atonement of Jesus Christ could provide.  I knew I would be helped but I also knew that my pain wouldn’t disappear overnight. 

It took months for the Atonement of Jesus Christ to work in my life.  Slowly my heart was changed.  I no longer had the events of the last couple of years playing over and over in my mind every night.  I finally came to accept everything that had happened to me.  I no longer felt like I was drowning emotionally, mentally, and spiritually.  I started to feel alive and grateful.  I started to understand why things happened the way they did, and I can honestly say that I’m grateful for the way things happened.  Sure I still have some unanswered questions but it doesn’t matter.  I have learned so much from my experiences and if I had to experience them all over again, I’d do it in a heartbeat because of the experiences I’ve had and the things I’ve learned.  Trials are meant to refine us and I feel like I have been refined.  I came to understand Heavenly Father’s plan for me and His role in my life.

My testimony of the power of the Atonement of Jesus Christ has grown so much within the last five to six months.  I know that the Atonement of Jesus Christ is real and very powerful.  I know that if we turn to our Savior, He will help and heal us.  He provided each of us the gift of the Atonement by suffering in Gethsemane, dying on the cross, and rising again the third day.  Because of the Atonement of Jesus Christ we have access to the Holy Ghost, who helps us to change.  I am grateful for the peace that I have felt and the change of heart that I have experienced.  I know that if we turn to our Heavenly Father and our Savior, Jesus Christ, they will help us through every trial and challenge we face in this life.

Living with a CHD

Since February is heart awareness month and February 7^th-14^th is specifically congenital heart disease (CHD) awareness week I thought I would write a post on what it’s like living with congenital heart disease.  If you go back in my blog and read some of the first blog posts, it will go into a little more detail about my congenital heart defect(s). In short, I was born with multiple heart defects, from patent ductus arteriosus (PDA), a small ventricular septal defect (VSD), atrioventricular canal (AV canal- I just had a common atrium instead of having both a right and left atrium), all of the valves in my heart were leaky, and other abnormalities with my heart caused by heterotaxy polysplenia syndrome (a rare birth defect that involves the heart and the other organs in the body.  I have multiple spleens and the other organs in my body don’t sit in their normal anatomical position).

My childhood was not normal, at least not in the sense like it was for other healthy kids my age.  I don’t remember a lot about my childhood but I do remember having to take medicine for heart failure twice a day, not being able to run around with the other kids because I would get so tired (my normal oxygen sats without exertion were between 83-85), and going to lots of cardiology appointments.  I loved my cardiologist and loved going to Primary Children’s Hospital so I didn’t mind all the appointments.  At my appointments I would normally get my favorite nurse who always did my EKG which made it nice.  There were times when I hated going to my appointments because my cardiologist would make me do stress tests. Running on the treadmill was SO tiring! I normally didn’t make it very long because I just couldn’t handle it.  After one particular stress test when I was seven, my cardiologist decided it was time for me to have a heart cath to determine if it was time to repair my AV canal. 

I had my heart cath sometime in the Fall of 1997.  This heart cath turned out to be a traumatic experience for me.  I was awake when the nurses put my IVs in, which was not a fun experience in and of itself and then I woke up during the procedure.  I can remember opening my eyes and seeing the doctor who was preforming the heart cath.  He noticed that I was awake and so he told me that he was almost done, and that he had tried going through my right femoral artery but discovered that the path to my heart on the right side was blocked so he had to change and go in through my left side.  I was terrified that I had woken up during the procedure so I closed my eyes and don’t remember waking back up until I was in recovery.  I can remember that while I was in recovery, my cardiologist came in to get my parents so they could see the images of the test and hear the results.  The results showed that it was time for me to have my AV canal fixed. 

I had my first open heart surgery on January 27, 1998.  During the surgery my AV canal was fixed and I now have two atriums instead of just a common one.  My mitral valve was also repaired during the surgery.  My surgeon left my aortic valve alone hoping that it would last until I reached adulthood.  I remember waking up in the ICU with a tube down my throat and my hands tied to my side so I didn’t pull anything out.  My parents were there when I woke up and communicating with them was very difficult since I was intubated.  Back then they didn’t take the tube out of your throat as quickly as they do now.  I just remember being miserable with the tube in and was SO happy when they finally took it out!  I don’t remember much about my ICU stay, which is probably a good thing.  I know I was in pain because having your chest cracked open and then put back together is no picnic.   My brother and sister came to see me the day after my surgery.  It was hard having them come in to see me because they were crying and I knew it was hard on them.  I knew they didn’t want to see me this way and I had to reassure them I was fine. 

I had the surgery on a Tuesday and the hope was that I could go home that following Sunday, but that didn’t happen.  The electrical system in my heart was interrupted during surgery so I had to keep the pacer wires that had been placed after surgery in a lot longer than planned in order to help my heart beat.  So my stay in the ICU was longer than everyone had anticipated.  I was in the ICU for 4-5 days before I was moved to a regular room (still with the pacer wires in place) and then I had to stay there for another 5-6 days while my heart was monitored and the decision to place a permanent pacemaker was made.  I had my pacemaker placed nine days after my open heart surgery.  Normally a pacemaker is placed on the left side of your heart but because of the anatomy of my heart mine was placed on the right side.  I was able to be released from the hospital the day after my pacemaker was put in.  After ten days in the hospital I was so excited to go home. 

Since that surgery twenty years ago, my heart has been doing really good.  My oxygen sats are now in the high 90’s and I haven’t had too many complications.  I was blessed to have my aortic valve last until I was 20 years old before it needed to be replaced (that is a whole other story that I will write about later).  I have had my aortic valve replaced twice now, with the last time being a year ago this month.  So far my mitral valve has held up and I am hoping that it will continue to hold, but if not then I will have it replaced as well.  I haven’t had to take any special medicine for my heart in years which is a blessing.  The only thing I take is a full strength aspirin to help keep my blood thin since I am not allowed to take any other kind of blood thinner because of my history with bleeding.  I am on my third pacemaker with the hopes that it will last another 2-3 years before it needs to be replaced again.  I see my cardiologist twice a year where I have a pacer check, EKG, and a complete echocardiogram.  Problems with my heart can happen quickly so I never know how my clinic visits are going to go. 

For me, living with a CHD isn’t a big deal.  To be honest it’s made me who I am today.  It instilled in me my passion for medicine and a thirst to learn as much as I can.  Most days I completely forget that I have heart problems.  I have learned to live with the occasional chest pain, getting tired easily, not being able to exercise as much or as hard as others can, feeling my heart stop for a second before my pacemaker kicks in and it starts beating again, and dealing with the symptoms of severe aortic stenosis or regurgitation when they come.  I’ve had to make sacrifices and adjustments to my life because of my heart and other health problems but it’s not a big deal.  I know that I will have to have more heart procedures done and I know that I have at least one, possibly more open heart surgeries down the road.  It’s something that I have accepted, and while I’m not looking forward to them I know that I can handle it.  I was given this life for a reason and I am grateful for it.  I know with all my heart that I won’t have these problems forever.  I know that one day I will be resurrected and that my body will be made whole.  I look forward to that day, although I will miss my scars and the sound of my heart (seriously it sounds AWESOME)!

In the ICU after my first open heart surgery.  The box down by my leg was the pacemaker that I had to carry around until I had my permanent one put in.

These are the first two pacemakers that I had. The one on the left was put in February 1998, and the one on the right was put in July 2006.  The pacemaker I have now was placed December 2011.  I use my pacemaker about 32% of the time with it mainly being at night.

My Experience with an External Fixator

The process to start correcting my left foot so that I could walk again started on September 8, 2017.  I had two amazing orthopedic surgeons performing my surgery.  They went in and lengthened the tendon to the muscle that was overpowering the others and causing my foot to turn in.  The tendon was lengthened in hopes that the muscle wouldn’t be as powerful anymore.  I also had my really high arch cut.  Those two things alone relaxed my foot and it straightened out.  My foot was then put into an external fixator that would move my foot to the correct position in a matter of weeks to months depending on how well my foot responded.  Initially my surgeons told my parents that I would probably only have to be in the external fixator for 7-8 weeks. 

Adjusting to having this HUGE frame on my foot was pretty hard.  The things I was able to do before now seemed to be impossible.  It took me a couple of weeks to figure out how to do things again.  I finally got up the courage after a few weeks to try using my crutches a little more.  It was an adjustment because my frame was so heavy and really weighed me down.  It was hard figuring out how to balance with this added weight, especially when my balance was already off.  But I managed to figure it out and started using my crutches a little more around the house.

Attached to the external fixator were six struts with numbers on them.  Each day these six struts had to be moved to the number indicated on the program that was given to me.  My initial plan was for 34 days. The first ten days of this plan consisted of moving the struts so that my ankle joint would become distracted (pulled apart).  This phase was painful but thankfully pain medicine helped ease it.  I saw my orthopedic surgeon every week where x-rays were taken and the frame was evaluated. Some of my visits consisted of strut change outs, which is where the old strut was replaced with a longer or shorter one depending on what the program indicated. 

After having the external fixator on for a month it was decided that one of the wires in my heel had plowed through my bone and needed to be removed.  I wasn’t thrilled about this news but I was expecting it because I was told at the beginning that my bones were really soft and the wires couldn’t get a good hold on the bones.  I went in for surgery a couple of days after I was told that the wire needed to be removed.  I had the surgery done at the Orthopedic Center down at the University of Utah and all I can say is that I love that place.  The staff are amazing and I had the best anesthesiologist!  He used to be the head of the cardiothoracic anesthesiology so he knew some different tricks to get my IV in since I have really hard veins.  For this surgery I did not have to be put all the way under which was awesome.  I was given a nerve block and then just sedated.  I didn’t feel anything and it pretty much felt like I was out the entire time but waking up in recovery was so much quicker.  I ended up having the one wire taken out of my heel but then I had three more wires put in, two in my heel and one more up in the forefront of my foot.  So instead of having a total of four wires in my foot I now had six, three in my heel and three in the forefront of my foot.  The hope was that these additional wires would help support the other wires and hold onto my bone so that everything would actually move where it needed to be instead of just plowing through.  I was given my second correction plan which was for about 14 days with the first six distracting my ankle joint again because it didn’t stay distracted (pulled apart) the first time. 

I was really hoping that after the second correction phase I would be able to get the frame off, at least that’s what I kept telling myself.  It had been 8 weeks and my foot should have been corrected by then so when I was told it needed to go about another 10 degrees I wasn’t happy.  My third correction phase lasted two weeks and I was convinced that I was going to be able to get the frame off by Thanksgiving.  Unfortunately that dream was crushed at one of my appointments.  I was told that my ankle joint had finally stayed distracted (which is a good thing), but after my case was discussed with different doctors around the country, everyone felt it would be best for my foot to stay in the final position for at least four weeks.  Not the news I wanted to hear!  I left that appointment with my final correction phase that would last a week and then my foot would stay in that position for four more weeks.  I did at least leave that appointment with a surgery date.  My doctor apologized that it was taking longer than what he initially thought but my foot fought the correction which caused setbacks.

 

Waiting for the day for my frame to come off felt like an eternity.  I never thought it was going to get here but it finally did.  I went in to have it removed on December 19, 2017, after having it on for 3 ½ months.  The frame removal was at the Orthopedic Center again so I requested the same anesthesiologist I had in October.  Unfortunately he was working with the residents that day and could not be my anesthesiologist, but they did get him to come and start my IV.  The anesthesiologist I ended up with was just as good and I really liked her.  Just like in October, I had a nerve block and was just going to be sedated.  My orthopedic surgeon was already back in the O.R. when I got there and he was quite talkative to me, which kind of surprised me.  He told me that once I was in my cast I could start being weight bearing and start walking a little bit.  I flat out told him that wasn’t going to happen because I was still terrified that I was going to end up with another sore on the bottom of my foot so I wasn’t going to take any chances.  

The frame removal surgery went great.  My foot stayed in its position after the frame was taken off which made my surgeon very happy because he didn’t know what my foot was going to do.  My foot also had good range of motion which was a positive thing.  While in the operating room my foot was molded so a custom brace could be made to help me when I walk.  It’s supposed to help distribute the weight evenly on my foot and give me arch support.  After the surgery I was put into a cast and sent to recovery.  My surgeon again tried to convince me that I needed to put weight on my foot and that he made sure that there was enough room in the cast that it wouldn’t cause any kind of pressure, but I was stubborn and told him no. So he went to my dad and told him to convince me to put weight on it.

Having the frame removed felt great.  The pain I had been feeling because of the wires and pins in my toes was finally gone.  It was a lot easier to do things and the best part was that I could finally sleep on my side, something I was really looking forward to.  Another positive thing was that I made it 3 ½ months without any kind of infection!  After I had the frame put on back in September I was sent home with antibiotics to start taking when an infection occurred in one of the pin sites.  I was told there was a 100% guarantee that I would get an infection.  Thankfully my dad and I found the trick to being infection free, and that was to just clean the sites once a week.  I would put my foot in the bathtub and we would use my shower head to clean it.  It was something I hated because it was kind of painful but it worked.

During the two weeks that I had the cast on, my dad tried to convince me to start putting weight on my foot and told me that everything would be fine because my foot was now in a straight position and I have almost 100% blood flow in that foot.  After a week or more of being in the cast I finally took a leap of faith and started putting pressure on my foot.  I prayed constantly that I wouldn’t end up getting a sore on the bottom of my foot.  I worked on my balance with my dad and it was really hard.  After not being able to put any weight on my foot for 19 months and then just standing up on it was really hard.  My balance was really bad but as I worked on it each day I started to make a little progress. 

I had my cast removed the beginning of January and I did not have any kind of bruising or sore forming on the bottom of my foot, which I was really happy about.  I was so scared that I’d have another sore which would cause another setback, but Heavenly Father answered my prayers.   Unfortunately the cast did rub against my heel and caused a little sore.  I wasn’t happy about that but it is healing so that's good, it's just slow.  My foot still has a tendency to pull inward but since I have the strength to pull it back into a straight position I may not need to have any tendons transferred, but only time will tell.  After the cast was removed I had a removable splint made that I had to wear while I waited for my brace to be made.  This splint was meant to keep my foot in a straight position but since it was removable I could take it off and work on my balance and start walking a little bit with a walker.  I’ve been working on my balance almost every day and walking a little bit every day as well.  My balance is getting better but I still have a very long way to go!  Hopefully one day I will be able to get to where I want to be with my balance and walking.

Having an external fixator on my foot for 3 ½ months was not easy.  During one of my many appointments one of my surgeons asked me how I was doing psychologically with it.  I told him I was handling it.  It wasn’t easy having it on.  It made things very difficult and having everybody stare at me when I was out in public wasn’t very fun and it definitely made me feel even more self-conscious.  Not only did I have to deal with the psychological aspects of a frame but it felt like everything else in my life that could go wrong started to go wrong.  Toward the end of October I found out that my left external iliac artery was severely narrowed to the point that it could become occluded (become blocked), which would not be a good thing. The thought was that when I had my aortic valve replaced back in February 2017 with the TAVR procedure it affected this artery and scar tissue started to grow and caused it to narrow. My vascular surgeon went in and did an angioplasty (a procedure to restore blood flow to an artery) on my external iliac artery.  Because of the type of balloon that was used to stretch the artery out, I had to be on a blood thinner for ten days.  This was very scary for me and my parents because I have a history of bleeding and we believe that blood thinners are what caused my subarachnoid hemorrhage back in 2016.  It was a very long ten days but thankfully I did not have any bleeding happen, although the headaches I dealt with each day were not fun.  Now I just have to be evaluated every couple of months to make sure that this artery doesn’t start to narrow again.  If it does I will have to have a stent put in to keep it open.

Despite the pain, stress, and at times depression I am grateful for my experience with an external fixator.  I hope to never have it again but it did teach me a lot.  It provided opportunities and blessings that I wouldn’t have received without it.  During the 3 ½ months that I had it on I was able to go to the temple a few times.  A couple of times while I was there I was asked by different sisters what happened and if I could do it all over again would I?  The answer to that question is YES!  I would go through everything all over again because I’ve been so blessed.  I wouldn’t trade the experiences I’ve had for anything!  I know without a doubt that Heavenly Father has been guiding me every step of the way.  I can see His hand in everything and it amazes me how everything has just come together.  Sure, it’s been hard and at times more than I feel like I can handle, but life is hard.  It’s not meant to be easy.  If life was easy we wouldn’t learn and grow.  I’m so grateful for Heavenly Father’s perfect plan and the knowledge that I have that I’m not alone in what I go through.  I have a Savior who has felt everything that I have felt.  He knows not only the physical pain I go through but also the mental, emotional, and spiritual pain as well and He is there to help me.  The Atonement of Jesus Christ is real and very powerful.  If we apply it into our lives we can get through anything!

This is what the plan for my third correction phase looked like. Each strut had a different number that it needed to be set to each day. All four correction plans looked like this.  There was an app I had to go into everyday and mark off that I had moved each strut. The app allowed my doctor to go in and track my progress and make sure I moved each strut.  

These are what each strut looked like. There were six of them that went all the way around the frame.

What my foot looked like before the external fixator. My stroke caused my foot to turn this way.

After my external fixator was taken off and my cast removed.  It's not perfect but it's better than it was.