August’s Fifth Birthday

August’s 5th birthday is on Saturday. Five! I can’t believe it has been 5 years since the night of his birth. It was a night that has been replayed in my mind countless times. There are pictures that come to my mind every time I think of it, and I imagine they always will. This was not a happy occasion, and August’s birthday has always been a day I would rather skip. I have done a lot of work to manage the effects the trauma has had on me, and this is the first year I haven’t felt a need to spend a lot of time preparing myself for the day that can be so triggering.  This is the first year that when I think of his birthday, I see the miracle that August is before I see the consequences of such a traumatic birth. I think that’s a pretty big deal.

This photo is precious, and it brings up a lot of emotion for me because I remember the turmoil I was feeling. I couldn’t make my mind stop replaying the birth. I blamed myself. There were so many questions, and so much uncertainty for the future.  I have felt this same turmoil off and on for the past 5 years, but it was strongest at first. I would not want to go back to this time or relive the past 5 years. 

 

I have done a lot of thinking of what could have been. How would things be different if August’s birth went as planned? It’s hard to answer that question, and it’s also interesting to realize that I wouldn’t want to change things. If I try to describe the truest, most beautiful story about parenthood, I can think of a lot of stories that seem easier. The story that I imagined for August before his birth definitely seems like a nicer and more carefree story.  I can think of stories that seem happier. But I can’t think of a story more beautiful or joyful than the one that we have lived. I think it is important that we remember that easy does not equal beautiful or joyful. 

 

This year on August’s birthday, I am excited to celebrate August. In the past, it has been easier to remember the things that went wrong at his birth. His birth did not go as planned or as anyone would have hoped for. A lot of things went wrong, but enough things went right that he is here with us today. He is truly a miracle in so many ways.

Gratitude For What Is

On July 2 as I was looking through my Facebook memories, I realized it was August’s half birthday. Half birthdays aren’t something we celebrate in our family, but I was surprised at how this realization caught me off guard. Lately, I have been typing up all of my journal entries and other writings since August’s birth, so everything is pretty fresh for me. 

As I have typed up my memories, I have relived those first months of uncertainty and grief. I have wept for that mom and all she is going through. There was so much uncertainty, so many questions, so much guilt.  I held onto hope with any tiny movement of his arm. At the same time, I didn’t dare hope. I didn’t dare dream about his future. It is a time that I would never wish to go back to.

As I was watching August play on his half birthday, I was filled with immense gratitude. August’s arm didn’t recover fully like we hoped it would. He has had to have 3 surgeries we didn’t want him to have to endure. He has been through countless therapy appointments, both for his arm and to be able to speak. But things are better than I ever dared dream. August is incredible. He can do anything he wants to do, and I have learned to never underestimate him. He is sweet and gentle, and he has a quiet strength that is powerful. He is smart and funny and silly. He is submissive and accepting, and he keeps a positive attitude through it all. We have a special bond that I am grateful for. I don’t think August would be the same if his life hadn’t started in such a traumatic way. I know I wouldn’t be the same either.

August was born 15 months before Greg’s ICU stay and the diagnosis of vEDS for half of our family. In the past, I have felt that the timing of it all wasn’t fair. August’s birth affected me so much, and I didn’t have time to deal with it before we had another huge thing to process. But lately I have started to think about it differently, and I can see that in a way the timing of it all was a blessing. August has been a light and a strength for our family during some dark times. He has given us something to cheer about and celebrate with every small milestone he has reached. The experiences I had because of his birth helped me be more prepared when my world crashed down in an even bigger way. I am able to say I’m grateful for what is. That is pretty huge.

I know there will still be some moments of grief, uncertainty, and guilt. I also know that in another 4.5 years I will be able to look at how far we have come and be in awe once more. I am so grateful for this little boy and for everything about him. I don’t think I will ever stop marveling. We have come so far. 

It’s Okay to Not Be Okay

I woke up this morning with a lump of anxiety in my chest. I got up early to get some things done, and I had planned out exactly what those things were, but the lump won. I realized I was not okay, and I wasn’t going to ignore that feeling.  Instead of doing my checklist, I let myself feel my feelings. I did some tapping, cried in my bed, and then decided to come write it out. I let myself slow down and feel some very big things I didn’t even know I needed to feel.

 

Yesterday was rough. Like really really extremely rough. The strange thing is that yesterday I didn’t know why. It seemed so strange to me that I was such a mess. I was beyond stressed, overwhelmed, and not a nice person to be around. But this morning when I woke up feeling anxious, it was clear to me that I have been numbing my big emotions by staying busy. A coping strategy I have and use often is to stay busy. I am a busy person. If you see me sitting around doing nothing, you will know I am very very sick. I am a goer and a doer. I love a good project, and I love the feeling of getting it done. But my tendency to go go go often keeps me so busy that I’m not in touch with myself and my emotions. I can’t even recognize them because I’m moving too fast. A lot of the time I stay busy so I don’t have to feel them.

 

But this morning, I was proud of myself for honoring my emotions and letting myself be with them and feel them. I validated that YES, I have good reason to be anxious and overwhelmed! August’s surgery is a week from today, and I obviously haven’t allowed myself to process that the way I need to. It’s okay if I’m still scared, and it’s okay if it is bringing up other thoughts and emotions that are uncomfortable. It’s okay that I don’t feel okay today. For me, letting myself not be okay is a big step to dealing with the hard things in my life. 

 

I am generally an optimistic person. I am good at finding gratitude and joy, even in hard times. I think that’s a good strength. But it’s also important to acknowledge the uncomfortable emotions that come up and let them happen.

Hidden Miracles

Today this memory from 2 years ago popped up on my Facebook memories:

“Today has been a busy day of therapy appointments. This morning, we said goodbye to OT, Mike, who has worked with August since almost the beginning. Then we headed to Shriners for more OT and a speech evaluation. August says no words. He understands everything, and is very expressive with gestures and grunts, but no words. The speech therapist diagnosed August with severe apraxia of speech and dysarthria. In a nutshell, that means he isn’t able to motor plan to say words or even make sounds, and his muscles are weak, which makes it even harder. The therapist feels she can help August, but it will be a lot of work, and take time. We will now be making lots more trips to Shriners. This news was expected, but it still hits hard. This boy is so strong and brave, and I know he will overcome this as he has his other trials.”

Looking at where August is now, it’s hard to believe that he was once given such big diagnoses. He now says whatever he wants without hesitation. He has a big vocabulary, and seems like a typical child. At the time, his speech therapist seemed to think there was severe enough brain damage that we would have a long road ahead of us. Less than a year later, she discharged August from therapy, saying she doesn’t know how to explain it because his problems were so severe at first. His speech was at an age appropriate level, something she didn’t expect to happen for years, if ever. August made progress faster than any other child in her entire career. The only way to describe what happened is MIRACLE. As I read my memory on Facebook today, it struck me what a big miracle this is. It is easy to dismiss it as a weird flukey thing that happened and to say that August was just a hard worker and made astounding progress. It is true that August was motivated to talk, but I don’t think he gets all the credit here. It was truly a miracle. It’s not even a miracle I knew was possible. I never asked for it. Of course we prayed for him to make progress and learn and grow. But I never asked that the problem would just go away.

I Didn’t Get the Miracles I Asked For

After August’s birth, there are many miracles I wanted and asked for, and they didn’t happen. it was hard to see the miracles through all the other things that happened. I prayed so hard for the miracle I wanted: that his arm would heal and be totally fine, and that he would not need to have any surgeries. That did not happen, and at times it has been a struggle for me to understand. I had faith that he could be healed. Why didn’t it happen? Why do other people get these big miracles that leave them with no consequences of accidents and trauma? It doesn’t always seem fair, but looking back, I can see that we got more miracles than we could have ever hoped for.

There Were Always Miracles

The first miracle in August’s life is that he is alive. He could have so easily died during or after his birth. The fact that he is living and breathing today is a miracle. Heavenly Father could have prevented August’s birth injury altogether, but He didn’t. That would have been the first miracle I would have wanted. But if we had gotten that miracle, I wouldn’t even know! If his arm was always totally fine, I wouldn’t have known that that was an alternative scenario. How many times do we get miracles that we don’t even know we got because we don’t know the alternative scenarios? Interesting question!

Another miracle is that we found Dr. Kozin; someone who has the knowledge and experience to give a paralyzed arm movement and function. If we had waited for his nerves to regenerate on their own, which was suggested by our local doctors, he would never have function of his shoulder or elbow because those nerves were completely torn. It is also a miracle that August has any use of his hand and wrist. When Dr. Kozin did the first surgery, he found that the nerves that control the hand and wrist were a huge jumble of scar tissue, and it was not repairable. He was so shocked at what he found when we had been seeing some (limited) return of movement in his hand and wrist. MIRACLE.

One of the biggest miracles is the change my experiences with August have made in me. The things I have learned through these experiences have changed me. I am a different person. I have been typing up all my journals since August’s birth (it’s surprisingly a lot!), and it has been incredible to see the changes in me. If August’s birth was uneventful, I would not have learned all the incredible things I have learned. I wouldn’t be as close to God. I wouldn’t understand forgiveness in the same way. I wouldn’t be as compassionate. Our family wouldn’t be the same. The list goes on and on. The way I have changed is a miracle I will not deny. 

Miracles, Big and Small

August’s life has been full of miracles, big and small. I didn’t see them all or find gratitude for them in the beginning. Life is the same way. We don’t always get the miracles we ask for, but the surprise miracles are pretty awesome. Heavenly Father’s role isn’t to keep us from hard and uncomfortable things. Those things aren’t really bad. Even in our hardest moments, if we are looking for miracles, we will find them. Sometimes the miracles won’t be noticed until later like in my case. But they are there, and God is there, even when it might feel like He has abandoned you.

Not Alone

Yesterday was 4 years since August’s first surgery. With his 3rd surgery just weeks away, the emotions of that first time came back to me in a more real way. It is traumatic to send your kid off to surgery no matter what. But when it is because of a trauma, it is even harder. When August had his first surgery, I was so resistant. I was still reliving the trauma everyday, and I blamed myself. I prayed and prayed and prayed for a miracle. I prayed that August would heal without surgery. I prayed that things could just be as I thought they were supposed to be. And it didn’t happen. August still had to have surgery. 

August’s First Surgery

That first surgery I was so nervous. I am in tears just thinking about those emotions. We hadn’t even met Dr. Kozin before. I had sent him a video and had a phone conversation with him, in which he told me August needed a nerve transfer, and that we needed to schedule the surgery. The imaging we had done had actually shown that August’s nerves were fine. But when I brought this up to Dr. Kozin, he told me MRI’s can’t show the true damage. The only way we would know is when he opened him up. So Greg and I decided to trust him. We scheduled the surgery and flew across the country. I know I was led to find Dr. Kozin, but at the time, it was so scary. I was mad at Dr. Kozin for not seeing August’s potential and the progress he had made. He had no doubt that August’s nerves wouldn’t recover on their own, and I didn’t want to believe him. It was major surgery, and August was only 4 months old. I dreaded this surgery more than I remember dreading anything. I didn’t want it to happen at all. I wished it away. I hoped Dr. Kozin would change his mind when he saw August in person.

August’s Second Surgery

The second surgery happened when August was 19 months old. It was scheduled for months before that, but Greg ended up in the ICU, and our whole world crumbled to the ground even more. This second time, I also prayed for a miracle. Had our family not been through enough? Could we just not have to deal with another surgery and trip to Philadelphia? We didn’t feel like it was a good idea for Greg to come. His health was unstable, and we couldn’t risk an emergency happening while we were so far away from home. So the decision was made for my dad to come along. It was good to have his support and to feel less alone in this scary thing. 

This Time

This time, I will take August by myself. With the coronavirus it isn’t even an option to take someone else. Only one parent is allowed in the hospital at a time. I have much more peace about this surgery. I’ve done this before. I know the drill. August has shown that he is resilient, and I know he will be fine. Dr. Kozin has earned my complete trust (something that is hard to come by for any doctor). Thinking about how emotionally unstable I was the first surgery, it is amazing that I can even consider doing this on my own. I definitely have concerns about it.

Trauma is an interesting thing, and I am still healing from the trauma of August’s birth and life events. I suspect I will always feel a need to heal more. It is the thing that has impacted my life the very most. Even more than the vEDS diagnosis for half of my family. Interesting, right? The trauma is a part of me, and it will always be a part of me. It just gets easier to know how to manage it with time. No matter how much I have worked on it, processed it, learned and grown. It can still come back in an instant. It just takes a trigger: seeing August wearing a birthday hat (unexpectedly), watching an ambulance speed down the road, passing a hospital, my mom’s dog getting sick while in my care. I can’t always predict what will take me back there.

I’m Not Going to be Alone

While August was in surgery the first time, I was amazed at the peace I felt. I had been sooo worried. I had thought of how I might feel when he was in surgery. I imagined pacing the halls, crying, going back to his birth in my mind. It wasn’t anything like the reality. The reality was I felt peace and nothing but peace. 

Taking August to a surgery directly related to the trauma by myself is scary for me. I’m sad I can’t take someone else with me for support. But I know I won’t really be alone. I never have been. The faith and prayers of those around me have lifted me up so many times in the past 4 years. I know that will happen again. I have angels with me, and also a loving Heavenly Father who truly does love and care for me. 

Faith is a Choice

Faith is something I used to see as a strength of mine, but my faith has been tested to an extreme these past 4 years, and it is something I have had to work on. When trials come, I think it’s natural to question your relationship with God. Trials can bring you closer to Him, and they can also take you away from Him. In my case, I have had both happen. My faith has been like a roller coaster. At first, I leaned on Him like never before, and I found comfort in the scriptures and in my closeness to Him. I felt inspired daily, and I knew He was by my side. My testimony was stronger than ever. As time has gone on since August’s birth and half of my family being diagnosed with vEDS, I have had some anger and doubt creep in, and I have found my relationship with God becoming weaker.

Unanswered Questions

If God loved me, why did He let these things happen to me? Does He truly love me? Does He really care? Why didn’t He warn me about August’s birth? I did everything right. I have been faithful. Why hasn’t He protected me? Why has He given me so much to deal with? How could this possibly be what is best for my family? Can SOMETHING work out the way I want it to? Anything? So many questions that aren’t very helpful. They have only made me angry and distanced me from the Lord. I built a whole case against Him. I felt forsaken and abandoned.

I am generally an optimist, and I can be good at finding reasons to be grateful and seeing the good in situations. But with so much hardship, I felt beaten down, and I stopped trying to see the good. I was too tired. Instead I found reasons to be mad at God. And there are a lot of them because a lot of hard things have happened.

My distance from God was concerning to me, and I started to pray to better understand so I could stop being angry.

Faith is a Choice

My answer is that faith is a choice. I have had many reminders the past while that have softened my heart and helped me see that God is there for me, but I need to choose to see it. Choosing to believe that Heavenly Father is there for me and will help me is the first step to seeing that it is true. I can choose to murmur and complain about my circumstances or I can choose to have faith and find reasons to be grateful. This choice won’t change my circumstances, but it WILL change how I see them. It won’t change that I still have questions, but it will give me comfort that I am not alone in it.

Awhile ago, when my anger with God was at its highest point, my beautiful friend, Daeyna posted a testimony on Facebook. She is a great example of faith and trust in the Lord. In her testimony she wrote,”Lord trusting You has never been a bad thing so I continue to trust”. That really hit home for my logical mind. I started to think about this and decided that it has never been a bad thing for me to trust Him either. It has only been good and brought me joy and comfort. Faith is a choice. If I want God in my life, I have to choose Him. I can’t complain against Him and be mad at Him and expect to see His hand in my life. If I am focused on the negative, I won’t see the positive. He will still be in my life, but I won’t see it.

I Have Felt His Love

As I have allowed my heart to be softened, I have felt His love in a powerful way. I don’t understand all the whys of this life, but I do know that He loves me, and I do know that He will help me. If I invite Him in, my burden will be lighter and more manageable. I can accomplish a lot by myself, but I can accomplish ALL THINGS with Him. There is no comparison. There is also no comparison in how I feel when I am keeping Him distant in my life versus when I am inviting Him in.

I am choosing to keep Him by my side because I need Him. I think maybe that is part of why we are given trials that we can’t bear alone. When we have trials that are bigger than us, we have to humble ourselves and invite Him into our lives. We can’t do it all by ourselves. I can’t do it all by myself, even though sometimes I want to think I can.

An Example of Praising the Lord in Hardship

Nephi is a great example of faith and gratitude and finding the blessings in difficult situations. I look to his example to know how to handle hard things. Nephi praises God continually even in great affliction. His family wandered in the wilderness for 8 years. EIGHT years!!! Seriously, how many of us wouldn’t have joined the ranks of Laman and Lemuel and murmured and complained at least for a time?? I sometimes question if Nephi was truly human because it doesn’t seem like he ever complained or got angry with the Lord.

After the whole wilderness adventure, the family was on a ship. Laman and Lemuel tied Nephi up, and then there was a terrible storm that lasted 3 days. They finally loosed Nephi’s bands, and he said, “Nevertheless, I did look unto my God, and I did praise him all the day long; and I did not murmur against the Lord because of mine afflictions.” (1 Nephi 18:16)

What an incredible example. The story of Nephi and his brothers is a great example of how faith is a choice. Nephi and his brothers go through the same exact things, but they have totally different perspectives. Laman and Lemuel say they wish they had died in Jerusalem because then they wouldn’t have to go through so much hardship. Nephi praises God, even in all the hardship he endures. His life is much more joyful and beautiful. He chooses faith and gratitude.

Choosing Faith

I choose to be more like Nephi. I choose faith. Choosing to have gratitude and focusing on the joy of life, even in hardship is much more rewarding than being angry about the things that don’t go our way. Faith is a choice. If you are struggling with your faith and relationship with God, take that first step of making the choice. Choose to find the ways you are blessed. Choose to see His hand in your life. Because it’s there. Sometimes it just takes some faith to see it.

How vEDS Has Affected Our Relationship – Taya’s Perspective

As you can imagine, finding out Greg has a life-threatening illness and that half of my kids also have it has been a lot to deal with. One of the biggest things it has affected is the relationship between Greg and me. We haven’t been ready to be open about this until now, but since we have been able to resolve a lot of things, we have decided to open up a little. I can’t imagine that what we have gone through is completely unique to us, but I haven’t heard anyone else talk about these things before. Maybe it’s time to let others know they aren’t alone.

Before Our World Turned Upside Down

Greg and me April 19, 2017. This was just a couple days before things changed.

Right before we discovered Greg had severe health challenges, our relationship was better than it had ever been. We were planning to start a new business, Greg was excited about his future in his career, our family was doing well, we were working on improving our mindsets, and our relationship was good. We had never been in a better place before that.

Our family was on a business trip in St. George, and I distinctly remember how great we felt in the photo to the right. We were hiding in the hallway of our hotel room late at night so we could have some ‘alone’ time without waking up the kids.

Different Perspectives

After Greg’s hospitalization, he was very unstable. He had new dissections and other events often, and it seemed like he didn’t have very long to live at all. It was very difficult to process. Our lives had been completely turned upside down, and we were both struggling. Our own perspectives were so different, and that made dealing with everything even more difficult.

In Greg’s perspective, he didn’t have anything to live for anymore. He was going to die, and he didn’t see why his life was worth anything. He wanted to die and get it over with. Greg didn’t feel like he had control of anything in his life, and he felt helpless. He spiraled into a deep depression that was all-consuming. I will leave it at that because I’m sure he will have more to say about his perspective in a future post.

In my perspective, I was going to be left alone to deal with it all by myself. I would be left alone with 6 young kids to raise. Not only that, but Greg was also leaving me with the reality that some of my kids also have vEDS. This was all incredibly sad to think about, and there was a lot of sadness. So much sadness. But another big emotion that I have had toward Greg is anger. Before I go into more detail, I will say that I always knew that these feelings weren’t rational, but that does not make them any less real.

Anger

I was so very angry with Greg for doing this to me and to my family. I was mad that he wanted to die, that he wanted to leave me in such a difficult situation. It felt like he WANTED to leave me. His feelings about wanting to die had nothing to do with me, but it still felt like he was abandoning me.

I was angry with him that he passed this terrible thing onto my kids. I was mad that he didn’t care that he gave it to the kids. Of course he cared, but he was much slower at processing this than I was, and dealt with his emotions about the kids later than I did.

I was mad that he got the ‘easy’ part of dying, and that I would be left to pick up the pieces and have much heartache and sadness in the future. He was in such a dark place, and I found myself managing so many things myself. I couldn’t fall apart because I had to be the ‘strong’ one. If I fell apart, what would happen to everyone? I was angry that I had to be strong.

We Were Trying to Protect Ourselves

Our brain’s main purpose is to keep us safe, and subconsciously, being angry with Greg was safer than dealing with the real emotions about the reality that we would eventually be separated. It was safer to keep my distance from him and to see him as the enemy. Because that would mean it would hurt less when he dies. Right??? Anger was protecting me from the real scary emotions.

The truth is that anger wouldn’t change how much it hurt. I would only have regrets that I didn’t cherish my time with Greg. I would deal with guilt for being angry with him for leaving me. I didn’t want to be mad at him. But it took a long time to get past this all-consuming anger and let myself deal with my reality and feel the emotions that come with it.

Greg also dealt with things by separating from me emotionally. For a couple years, we simply lived with each other. Greg was lost in his darkness, and I was lost in mine. Letting ourselves get too close to each other felt unsafe. Greg and I have both had to do our own work to be in a better place in our relationship.

It’s OK To Be Angry

I think that when we are going through something hard, it is important to remember that having negative emotions is OK and even good. Anger is an emotion that is easy to feel shame for. I know I have felt shame for being angry with Greg. But in the end, it was important for me to deal with my anger and see its purpose so I could get to the real emotions. Anger is a secondary emotion, which means there are bigger emotions behind it. It is important to acknowledge it so you can get to the other emotions.

It was important for me to be open with Greg about how I was feeling, and for him to be open with me about how he was feeling. And it was important for us to try to put ourselves in each other’s shoes and see things from a different perspective.

I’m grateful we have had the time to get to this point. The thought of Greg passing away still feels very sad to me, and I know I can’t begin to deal with it before it happens. After almost 3 years, the fact that our lives can be different any day is just a part of our everyday life. The fact that I could be widowed any day is just part of life. I am not angry with Greg anymore, and I’m so grateful that we have been able to get to the point in our relationship where we can focus on our relationship and not let our brains and emotions get in the way.

Parent Care Package Fundraiser

We have been given some very difficult trials and challenges. Through those challenges, we have been able to witness love and service in a way few get to experience. We have been the recipients of more acts of love and kindness than we could ever count. We have been so very blessed, and we have a desire to pay it forward as much as possible.

Every year since August’s birth, I have done a service project of some kind for his birthday. It has been therapeutic for me to look outside of myself and the difficult day his birthday can be. I have never included others in my projects, but this year we have decided to. We are so excited to be putting together care packages for parents of kids in the hospital.

We are looking for donations of money and also items. Items can be dropped off at our house (contact me for address if you need it). You can donate through our fundraiser on Facebook: https://www.facebook.com/donate/489713131896386/10159025558976729/  You can also donate through Paypal or Venmo. Contact me for info.

All funds collected will go toward purchasing items for the kits. The kits will be donated to Shriners Hospital in Salt Lake first, followed by Davis Hospital, and then Primary Childrens depending on how much we are able to raise.

Items we are collecting are:

– Toothbrushes
– Toothpaste
– Combs
– Hair Brushes
– Pens
– Paper Pads
– Non-perishable snack items such as granola bars, nuts, dried fruit, etc.
– Gum
– Hard candies and mints
– Individually wrapped chocolate
– Water bottles
– Socks

The Miracle – Learning to Let Go of Control

I am always amazed at the timing of lessons that I learn through the Spirit. Sometimes it seems like the heavens are sealed. At those times, it seems that there is no hope of possibly receiving revelation. Just when I feel like I have all but been forgotten, my Heavenly Father reaches me in a way that is completely unmistakable. I had one of those moments a couple weeks ago while helping the Primary children prepare for their annual program.

I was put in the Primary as a teacher during the summer this year. Each week leading up to the program, we would sing “Miracle”. Every time I sang that song, I started to cry. I couldn’t make it through the song without choking up at least once. Here are the words to the song:

Jesus walked upon the water.
He stilled the storm and calmed the angry sea.
With His hands He healed the leper.
He made the lame to walk, the blind to see.
He fed a thousand people with a loaf or two of bread.
And when the ruler’s daughter died,
He raised her from the dead.

Jesus is a God of miracles;
Nothing is at all impossible to Him.
But I know this:
Of all His miracles, the most incredible must be
The miracle that rescues me!

Jesus bled and died to save me
A price that I could never pay alone.
When He rose again, He gave me
The greatest gift the world has ever known!
Yes, I can be forgiven every time that I repent,
And someday He will lift me up to live with Him again.

Jesus is a God of miracles;
Nothing is at all impossible to Him.
But I know this:
Of all His miracles the most incredible must be
The miracle that rescues me,

The miracle that rescues you and me!

My Heavenly Father knows me so well that He knows I listen to the words of songs. Often, when I feel the Spirit speaking to me the most, it is done through music. This time was no different. During the second time through the chorus, I stopped to think about the line that says nothing is impossible to Him. How could that be when I am reminded daily of the fact that I have a life-threatening condition! If nothing is impossible to Him, why do I still have this condition? Why couldn’t He take it away from me?

Then the lesson came in an unmistakable, yet gentle and beautiful way. I thought about one of my favorite scriptures that says that Christ will take upon Himself our infirmities that He may know how to succor, or comfort, us (Alma 7:11-12). I cling to this scripture at times because it is one that has provided me peace and comfort in any trial that I am facing. It is comforting to me to know that, when nobody else could possibly understand exactly what I am going through, there is One who does. He knows exactly what I’m dealing with because He has experienced it firsthand. However, this was not the lesson I learned that Saturday morning. The lesson I learned came when I remembered that my Savior actually experienced my pain, and because of that pain, He knows me personally. The Spirit gently taught me that my Savior would not take the pain away because it is necessary to experience pain in this life. We cannot possibly expect to have a life free of any pain or conflict. Everyone has pains and struggles in this life and He knows each one of us and all of our trials, infirmities, disappointments, failures, etc. The key is that He is okay with it.

My Savior is okay with experiencing my daily pains. And, even though He is a God and has the capability to take this upon Himself and I am just a mortal being, struggling through each day, I can find comfort through Him as I learn to let Him take this from me. As I begin to truly trust Him and put my life in His hands no matter what I am going through at any moment, I can learn to be okay with anything that comes my way, knowing that He will not leave me comfortless. At times this is easier said than done. I also know that it is quite a process to truly put all of my trust in Him, but I know this: of all His miracles, the most incredible must be the miracle that rescues me; rescues me from so many pitfalls, heartaches, and pains. I believe that the miracle can happen daily as I use the gift of the Atonement, but also as a culmination of my life and that it is the same for each one of us. Our Savior is okay with experiencing all the hard things that we go through, no matter who we are. Because of this, we can each know that everything will work out. It may not be right away. It may not be exactly the way we want or expect. It may not work out until all is said and done and we have experienced what may seem like more than we can handle, but it will work out and we will be blessed perfectly because He knows exactly what we have gone through and knows how we felt because of each thing in our life. Because He knows us so well, He knows how to bless us in ways that not only compensate for the trials, but that bless us perfectly, with exactly what we need when the time is right. I believe this is the miracle that rescues you and me!

Seeing Blessings In Great Trial

Sonnie has our next guest blog post. Her story is incredible and well worth taking the time to read. You can find her blog at http://sonniehoots.blogspot.com/

Hello World…

Me before my incident

My name is Sonnie, and I look in the mirror every day and consider myself blessed to be alive. By all accounts, I should be dead, and I was… let me explain…

October 25, 2013 was a Friday, and I spent the day at work like every other weekday. It was roughly 4:45 pm, and I was getting ready to leave work and go to the store to get some snacks for movie night with my Bunco friends. Suddenly my stomach started hurting. Not the kind of hurt where you go “um…ouch”, but the kind of hurt that makes you queasy and want to vomit. My first thought was, “I am never going to make it to the restroom in time,”
and in that thought the pain left my stomach and traveled up to my chest. My body went rigid and started to violently shake, and I absolutely could not move a muscle.

Something Was Very Wrong

I weakly called out to my co-worker, who was standing behind me at our front desk, for help. When he finally heard me, he came running over and asked what was wrong. I told him to call an ambulance. As he rushed off to call 9-1-1 our student worker came over and started rapid firing questions at me. As a med student, that was what he was studying for after all. Soon he went to get some other students to help him to put me on the floor. That was my
request for him and his fellow students… put me on the floor before I could break my neck by hitting my head too hard on the back of my chair.

By the time the ambulance arrived there was quite a crowd, and one of sweet ladies from the department next door volunteered to go to the hospital with me. The EMTs loaded me into the ambulance, and off we went to St. Paul Hospital, which was a block from my work. I happened to work for the medical university that ran the hospital. I tell you… I could have walked there faster than the ambulance did when all was said and done, well, except for the fact that I couldn’t move.

At the Hospital

At the hospital the doctor and nurses quickly tried to assess what had happened to me. EKG… nope, no heart attack. Chest X-Ray… nothing there. CT scan with dye contrast… well… that is when they sent a cardio thoracic surgeon to speak with me. Apparently I had dissected my aorta the entire length of my body, even into my legs. The inner layer of three had effectively ripped itself in half.

But they decided to put me in the CVICU (Cardio Vascular Intensive Care Unit) for observation. After all… aortic dissection is not necessarily fatal. My father and grandfather both died of aortic rupture, but that didn’t matter much, I guess. They were going to wait until morning to decide if they could manage me with medications or if they would do surgery.

My Death

My body had other ideas. I was in considerable pain, and in an effort to help manage that pain the doctor asked me what level I though my pain was. It’s at 9… No, it’s at 10… No, I can’t stand the pain any longer. Then I screamed at the man. It was such a blood curdling scream that the nurse said the entire ER stood still, and I fell back on the exam bed dead. That was the moment my aorta ruptured.

The doctor called Code Blue and started to try to rescue me. The doctor said the first thought that ran through his head was, “I’m not letting you go!” The nurse said hers was, “We are never getting this one back!” She later told me I was so blue that she didn’t think there was any way I could come back from that.

Miracles

They worked on me for 10 minutes, and pumped so much blood into me that they were finally able to bring me back from death. They had to use the AED 3 times to get my heart working. I had bled out 80%. After they were able to resuscitate me I was rushed off to surgery to place stents in my thoracic aorta. Once that surgery was completed, nearly my entire thoracic aorta was covered with 2 full stents. The artery to my left arm had been covered with part of one of those stents, effectively blocking blood flow to my left arm. Fortunately for me our bodies are so well designed that other blood vessels actually have grown larger over time helping my left arm to get nearly adequate blood flow.

Breathe a sigh of relief… that ordeal was over, but what was to come would prove to be just as hard. Over the next week there were several days that my life was hanging in the balance. My left lung collapsed and the blood that was in my chest cavity had to be drained. All 3 liters of it!! I cannot remember the week that followed my death but my family suffered much pain and trauma because of my aortic rupture.

Life-Altering Complications

One thing that soon became evident to the doctors was that I could no longer move the lower half of my body. I had
been paralyzed from the waist down because of the 10-minute lack of blood and oxygen to my spinal cord. They did a spinal tap in the hopes of getting the blood to flow back to the dead areas and reviving them, but it did not work. I was going to be unable to walk for the rest of my life. I suffered spinal cord ischemia or a spinal cord stroke, in other words.

The injury was later determined to be T-9 Asia A Complete, meaning that I was paralyzed from T-9 in my spine (this is a rough estimate since my spinal cord was not severed and I feel below T-9 in the front and cannot feel above T-9 in some places on my back). They initially were unable to do an MRI to discover the extent of the damage because I had become violent and would not be still for the test to be run. I had to be tethered to the bed because I tried to beat up the MRI technician.

I was also not responsive and would not cooperate when asked to do things or answer questions. It was at this point in the week that the doctors thought I may have had a stroke. Luckily my sister/best friend knew I had issues
with medications and begged the doctors to take me off the meds to see if it would help.

My Reaction to My New Life

Yes!! Success! As the meds wore off I slowly came back from the abyss and started acting like myself again. This is also the point in my ordeal where I started to grasp the situation and can recall what was happening. The doctors were amazed by my recovery, but then had the daunting task of telling me that I had been paralyzed because of my death.

By the grace of God I was not upset by that information. I was alive and knew that I shouldn’t be. Being paralyzed was not going to define me. I was going to live the life that God had so graciously given back to me.

Rehab

Fast forward to rehab… I had to learn to be me as a paraplegic. What a daunting task, and I am not going to say it was easy because it was far from easy. I had many ups and downs in rehab, suffered many setbacks and rejoiced in many triumphs that all lead to me eventually coming home.

Before I left rehab I had some odd swelling issues that the doctors could not figure out. It turned out to be Heterotopic Ossification (the abnormal or atypical growth of bone outside of the skeleton), which is a common issue for spinal cord injury patients, brain injury patients and burn victims.

During the period of time that the doctor spent trying to figure out what was going on, I met with a rheumatologist who told me he thought that based on my story I may have a rare genetic disorder that he knew of. A consult with a
geneticist was made and she proceeded to do blood work to see if they could determine what I had. Since my father and grandfather both died from aortic rupture, the doctors decided that a full genetic panel was in order. The blood was drawn in December before I left the hospital, and the results were back mid April of 2014.

The Diagnosis

My geneticist told me she was surprised by the results. I didn’t have hardly any of the characteristics that they look for with this particular disorder. I bruise easily and have thin lips, but wasn’t born with a club foot, don’t have such thin skin that you can see the blood vessels clearly on my chest, my hands don’t look like the hands of someone much older than me, my nose is not particularly thin nor do I have a small chin or protruding eyes.

My cousins and one of my brothers (there are 3 vEDS folks and 1 suspected in this picture) and I.

But the diagnosis was clear and the tests showed that I have vascular Ehlers-Danlos Syndrome, a rare and deadly genetic disorder. Upon discovering that it is considered an autosomal dominant disorder (meaning that there is a 50% chance of passing this to each child born of someone who has it), I decided my whole family related to my grandfather would need to be tested. My grandfather was a spontaneous mutation and the lab said that they had never seen our mutation before. At that time there were roughly 40 known mutations and ours had never been recorded before, so we were a whole new mutation.

Since that time most of my family has been tested, and a very high number of us have it. Of the 16 of us directly related to and including my grandfather, there are 9 confirmed cases, Four confirmed to not have it, and 3 who have not been tested (but I have a very strong suspicion that one of these does in fact have the disorder).

Things Have Been Difficult

My son and I and another UT Southwestern employee at the American Heart Association Heart Walk.

Since my death my life has been very difficult, but there is much rejoicing and love in my life. I am so completely blessed to just simply be alive that that is what I try to focus on as much as possible. Is being paralyzed after being able bodied for 44 years of your life difficult and trying? Indeed it is, but I would much rather have my legs taken than to have my mind taken or even my very life taken.

I have been blessed to have so many wonderful people in my life to help me through this unexpected journey that I cannot even begin to tell you all the blessings I have encountered. I like to tell people that if I told you all the
horrible things that have happened to me since my death (like being bitten by a brown recluse spider on my leg shortly after coming home from rehab) you wouldn’t believe me. Surely not that many bad things can happen to a person, just not possible.

 

 

Incredible Blessings Despite the Difficulty

But on the other hand, if I told you all the blessings you would think me equally a liar because no one can
encounter that many blessings and amazing people in one lifetime!! God had blessed me richly with friends who lift me up when I am down, cry with me, laugh with me and rejoice with me when I triumph.

My son and I and another UT Southwestern employee at the American Heart Association Heart Walk

Over the course of the last 6 years I have been jobless most of the time. We have never gone without food, shelter, transportation, heat or air conditioner (in Texas, that is a huge deal all in itself). I have never gotten too far behind on bills, yes they mount up and it is hard to not have debt in this kind of situation, but I am not being evicted
or starving.

This journey will continue to be difficult, that is just the nature of my life now. Every day may not be a good one, but there IS good in every day.

Thank you for reading my story and please never forget to tell the ones you love how you feel. You may never get another chance, like I did. May God bless you richly with love, laughter and joy!