Because We Have Today

May 24, 2018May 30, 2018

Being Angry With God

“Would you like to know the results of your children’s tests?” I heard the doctor say to me over the phone as I got home from a tiring day at work. I quickly got Taya’s attention and told her that our doctor had the results of our children’s tests to determine if they have the gene mutation that I have. The doctor wanted to give us the results right then, which would confirm a vEDS diagnosis a week earlier than we were expecting. Together, we braced ourselves for the news that was to follow. We knew that the likelihood for each child to receive a diagnosis was 50%. With six children, we were expecting to hear that three of our children have vEDS. One of our biggest fears was that the doctor would say that all six children tested positive.

The doctor went through the results individually for each child. After each child’s results were given, we experienced a huge mix of emotions. We were relieved to know that the probabilities held, confirming only three positive diagnoses. At the same time, we felt such immense sorrow for our three children who do have it because we knew that it would change their lives from that point on.

In the days and weeks that followed this life-altering phone conversation, I let myself feel more emotions than I had in quite some time. Taya had already been processing her emotions about the possibility of each of our children having vEDS from the moment I was in the hospital. As a mother, she was very concerned about how the diagnosis would shape the rest of their lives. Would they marry, have kids of their own, etc.? Would other kids treat them unfairly because of their diagnosis? Because I was experiencing the pains first-hand, I felt like I was barely holding things together each day. I couldn’t think about how the potential diagnoses would affect my children until I had time to process what it meant for me. After coming home from the hospital for the first time in almost two weeks, I spent months trying to make sense of everything my body was telling me while also trying to make it through each day at work.

After I had finally started to feel like I was beginning to understand how to deal with my own daily physical, mental and emotional pain, I was hit with even more devastating news. To think that I had passed this unusual, life-threatening genetic trait on to three of my children was almost more than I could bear! How could this be? It seemed like an absolute nightmare.

I had never been mad at my Heavenly Father before, but I found myself completely blaming God. I have a 30-minute commute to work. I used this entire time many days in a row to pray, but not like I had ever prayed before. I pleaded. I cried. I yelled. I even screamed at my Heavenly Father. I was mad that He would allow this horrendous situation to fall upon my family. Those in my family who have the diagnosis have to go through the physical pain first-hand, while those who don’t have it are forced to watch the effects of this syndrome play out on their loved ones. What made things worse for me is the understanding that I did not develop this genetic mutation over time. I was born with it, but only found out last year. I found out that I had vEDS after having six children brought into our family. I had no idea at the time of each of our children’s births that I was passing this on to half of my children. I do not regret having any of our children despite the situation they came into. The reason I was so mad at my Heavenly Father is that He allowed vEDS to even exist in the first place and that He allowed half of my family to have it.

I felt like my Heavenly Father had abandoned me. He was abandoning my family. I felt like everything I thought my life was to that point was all turned upside down in a huge lie. I had a hard time understanding how my Heavenly Father could love me and allow this huge devastation to happen to my family and me. I began to doubt His love. I struggled for weeks with this – but I did not entirely give up hope. I kept asking, praying for answers. I kept praying for peace and comfort that could not come from any other source. I wanted peace to come from the comforting words of others who were aware of my situation, but the peace never truly came that way. In the end, I always felt like nobody understood exactly the painful situation my family and I were in.

Then one night, while working late at the kitchen table, I was listening to uplifting music (I have found this to help strengthen my faith’s foundation). I got lost in my thoughts while going through the motions of my work and suddenly an impression hit so strongly that I began to cry. I was wondering again how my Heavenly Father could allow three of my children to have vEDS, when suddenly the thought occurred to me that they are not just my children, or Taya’s children, but they are His as well. Then I realized that all the pain and anguish that I was experiencing because of this trial that was suddenly forced upon us was not lost on Him, but that He felt it too. Right then, I felt like I was not alone, but that I was wrapped in His loving arms and that my children were and are in His watchful care as well. I understood that it pains Him to see my children experience this trial. Then I began to grasp the magnitude of my Father’s sorrow as I thought about all the people in this world who have various ailments.

One amazing lesson that I learned that night is that my Heavenly Father loves me so much. Despite my limited understanding of the big picture that He sees, He loves me. He loves me enough to allow me to vent my frustrations, even through a temper tantrum at Him. He waits. He lets me struggle with, wrestle with, even blame Him. Then when I am done, He comforts me. He wipes my tears. He teaches me profound lessons that I could not learn any other way.

Although I am not to the point where I can say I am grateful to have vEDS, I can say that I am grateful for my loving Heavenly Father, who loves me enough to give me amazing gems of knowledge in such unique ways that I cannot deny His presence in my life. Even when I feel abandoned, I know that He is there waiting for the perfect moment to bless me in the most perfect way possible.

Our family’s situation is extremely unique, but I know that we are not the only family to go through devastating circumstances. You may be going through a situation right now in your life that leads you to believe you are abandoned. You may feel angry and bitter toward God. That is totally your right to feel that way. It is normal to feel this way while trying to make sense of all the pain. Through this experience, I can tell you that you are not alone. When nobody you talk with can say just the right words to take the pain away, your Heavenly Father can. It is hard to find enough peace and comfort to be able to move forward, but don’t lose hope. Know that your Father is watching you and is waiting for just the right moment to bless you. He loves you. This I now know for sure.

May 18, 2018May 30, 2018

3 Top Ways to Help Your Kids

“I think your husband has Vascular Ehlers-Danlos Syndrome,” said the Doctor as we were sitting in the ER. Greg was in extreme pain, and the scan results showed that his kidney was dying due to a dissection of his renal artery, which blocked off blood flow. As rare as vEDS is, some of my previous research had led me to learn a bit about it. I knew what it was, and I knew it wasn’t good. I went into shock, and was very close to passing out. Part of what caused the shock is that I knew vEDS is genetic. I knew my kids each had a 50% chance of having vEDS as well.

This was a lot to process at the same time. I think it’s accurate to say that I still haven’t completely processed it all. It is so much to deal with. Greg was in critical condition in the ICU for 13 days, which was enough to deal with all on its own. The reality that my husband has a life threatening condition has been a lot to deal with. But that is only the beginning of the story.

Through the following months, I had a lot of anxiety about which of my children have vEDS. I analyzed every facial feature, looked at their veins, checked their joints for hypermobility. Not knowing was its own kind of torture! The questions that went through my mind were difficult. What if all of my kids have vEDS? What if I have to bury ALL of my babies? Even burying one of my babies seems unbearable. No mother should have to outlive her child. Do I get grandkids? Will my children have the opportunity to get married and have children of their own? Will this ruin their lives? Will I be raising my grandkids and burying them as well? And on and on.

Nine months after Greg’s hospitalization, we felt that it was time to have our children tested. It was time to know. We have always been fairly open with our kids about what is going on, and they all knew that they had a 50/50 chance of having vEDS. They all knew what they were being tested for. It was a stressful time for our entire family. The anticipation was difficult. We had scheduled an appointment with just Greg and me to meet with the geneticist afterwards for results, but a week before the scheduled appointment, the Doctor called. He said he had the results and wanted to know if we wanted to know them. I felt shocky again just like that day in the ER. My heart started racing. I didn’t know if I was ready to know. How could I bear this? We decided to get the results right then. He told us that 3 of our children tested positive and 3 tested negative. I have to admit that my first reaction was relief. I was so relieved that some of my children do not have vEDS. I was so afraid they all had it. Knowing that half of my kids have vEDS has been hard to deal with, but the knowledge has been easier than the anticipation and wondering was.

How has this news changed my parenting? I can honestly say it hasn’t. Of course, I am more watchful for certain things with my kids who have vEDS. They take certain precautions, and I am definitely more likely to take any injury they have seriously. Otherwise, I feel I am the same mom to them that I was before the knowledge of vEDS. I feel that I have been prepared for this through other parenting experiences that I will go into more detail on in another blog post.

How have we dealt with the fact that our kids have a hard life reality? How have we helped our children during this difficult time? We have been honest with them (age appropriately). We have been there with love and support and validation. We will go into more detail on how we told our kids at a later time. I have noticed that as parents we naturally want to bail our kids out of hard things. We sometimes take it upon ourselves to make sure our kids don’t have any struggles. I know that has been my tendency in the past. When my kids had hurt feelings, I would have hurt feelings for them. I would do my best to make it better. If they forgot their lunch, I would rush it to them. The question I have learned to ask is, Why? Why do I want to jump in and save them? It is usually because their discomfort makes me feel uncomfortable. It is really kind of selfish. If they are hurt, it hurts me, so I want to make it better. Notice that most of my heart wrenching questions above were about me. We of course want our kids to have a fulfilling and joyful life. We want the best for them in every way. But I believe that usually the reason we want save our kids from heartache and trial is because it is uncomfortable for us to see them go through hard things or make mistakes.

In the past few years, I have had a new outlook on parenting. My job is to love my children, nurture them, and teach them the things they need to know to make it through the hard things in life. In the LDS church we believe that we came to this Earth to be tested and tried so we can gain experience, and if worthy, return to live with Heavenly Father again. We signed up for this. We all came to this Earth to go through hard things. Our children are included in this. It doesn’t help them when we try to take their trials away. These are the things that will help them grow and develop great qualities. These are their ‘classes’ in life. We can’t take classes for our kids and expect them to pass.

As painful as it is for me as the mom to watch my kids deal with some extremely hard things, I have learned that it doesn’t help for me to take on their pain or trial in any way. Not physically, and not emotionally. It actually makes it worse. I had a great mentor teach me through example that the best things I can do to help my kids when they are having a hard time is to:

Listen. Truly listen. Let them tell me how they feel and just listen.
Validate. It helps so much to be validated! Sometimes all I need is to have someone say, “Wow, that’s hard!”, or “I bet that really hurts”. It doesn’t help much when someone tries to tell me why I shouldn’t feel that way. This is the same for my kids, or for anyone.
Love. Love is so powerful. If instead of trying to take away my children’s pain I can just feel love for them, it changes everything. It takes away the need for me to fix things. It helps my children to know they can come to me when they are having a hard time, and they will be loved no matter what.

The kids all know whether they have vEDS or not. That has been some hard news for some of them. Very hard. We did our best to prepare them beforehand, and they continue to receive professional support as needed. But, I don’t feel like this news has changed much about our family dynamics. We are still the same people with the same strengths and weaknesses. I am grateful for the parenting lessons I have learned to this point. I feel that I have been prepared for this.

My challenge for you is to become more aware of your tendencies as parents. Do you tend to try to run in and save your children? If so, ask yourself why. Is it to relieve your own discomfort? Try to listen, validate, and love, and see how it changes your relationships. It has made parenting so much easier for me.

May 14, 2018May 30, 2018

What are you Worth?

Could you put a price on how much you are worth? What is your “replacement cost”? Of course, there is no real answer to that question. I am sure that everyone has lost a loved one at some point in their life. No amount of money could possibly bring back the ones we love once they pass on. However, one of the biggest lessons that we learned early on after my diagnosis is that it is never too early to prepare for our final days.

When our kids were really little, we were given the opportunity to get a life insurance policy outside of my employer’s plan. After talking with our salesman, we considered the cost of the plan and determined that we “couldn’t afford” the insurance at the time, but that when we had more money, we would look into it. We didn’t think it was a big deal because I had a fairly substantial policy through work on both Taya and me. We thought we were covered and that this was just a luxury that we couldn’t justify at the time.

Again, a few years ago, Taya and I were in the kitchen preparing dinner when there was a knock on the door. Annoyed, we stopped making dinner and went to the front door. To add to our annoyance, we met a door-to-door life insurance salesman. After some discussion, we again decided to decline the salesman’s offer.

Those two incidents break my heart now when I think of what I could have gotten for my family. During those two moments, I didn’t understand the value of a life insurance policy outside my employer’s plan. I thought I had done all I needed to do to provide for my family. Now I know that I was wrong. I understand now that my insurance policy at work is temporary. If something was to happen to me that prevented me from continuing my employment, that insurance policy would be gone. If I ever wanted to take another job that would further my career, I could keep my policy, but only if my new employer had a plan with the same insurance company. If not, I would either have to lose the insurance or turn down an employment offer. Having an outside plan removes barriers for opportunity at the same time as providing financial security for your loved ones.

Once Taya and I realized the value of an outside plan, we quickly got to work on figuring out how much insurance we wanted to purchase on each of us as well as each of our children. For Taya, the approval process was fairly straightforward since she has relatively good health. However, for me, we were sad to learn that the coverage I was seeking was just not available to me because of my pre-existing condition. I was able to get a small plan, but the cost was so much higher than it would have been for triple the coverage if I had taken the opportunity years earlier.

Although you can’t really tell what your replacement cost is, you can tell what your family will need if something were to happen to you. I encourage everyone to carefully consider what your family will need when you are gone. This will help you determine how much life insurance to get. If you still have questions, talk with a financial planner. Yes, it may cost money, but it will be money well spent. If you are healthy, you may think, like me, that you don’t need life insurance – that it is a luxury you can’t afford right now. I encourage you to shake off this thought and seek out a private life insurance policy. You may think you have time. We thought the same thing until about a year ago. By then it was too late.

May 7, 2018May 30, 2018

The Power of Gratitude

I won’t lie and tell you this past year has been wonderful. It has been the hardest year of my entire life. It has been filled with deep emotion and grief. But, I will say that it has also been one of the most educational years of my life. I have learned so much about life, living, and love. It’s interesting how some of your darkest times are also some of the brightest. It is amazing, and such a tender mercy. The power of Gratitude is probably one of the biggest I have learned this year.

The Greek philosopher Epictetus said, “He is a wise man who does not grieve for the things which he has not, but rejoices for those which he has.” There are so many benefits to practicing daily gratitude. Our brains are wired to notice and focus on the negative, so when we practice gratitude, we are rewiring our brains to notice more of the positive.

Simply writing in a gratitude journal for 5 minutes per day has proven to help with sleep, anxiety, health, and a variety of other issues. As you practice expressing gratitude, you will train your brain to see the good things happening in your life. Gratitude is more than just an emotion. It is a tool, and I have used it a lot in the past year. Even with my world feeling like it is crumbling apart, I can look around and see what I have. I have so much to be grateful for. I have my husband and children. I have them today and for eternity, even though we will most likely be separated on this Earth. I have wonderful, supportive family and friends. We have a beautiful home and neighborhood. I have the gospel of Jesus Christ and the peace and joy that it gives. This life is hard, but the good outweighs the hard. It truly does if you can learn to look for it.

To take gratitude to another level, I have even practiced being grateful for the things that are hard in my life. Being able to say you are grateful for the hard things is pretty powerful. It sounds crazy, right? How can I be grateful for the hard things that are happening in my life? Well, to be honest, I can’t always. But, I know that because of the hard things that are happening, I am being shaped and changed in a way that can’t happen any other way. I know that opportunities will open up and have opened up. My life has a new path that I didn’t expect a year ago, and someday, I may be able to say that I’m grateful for this path. I’m grateful that I have and will be able to have true empathy for others in hard situations. I also believe that everything happens for a reason. This is the path of my life, and I have to find a way to be ok with it. As I have practiced this new level of gratitude, it has been amazing to see that it is easier every time to truly FEEL the gratitude and not just say I’m grateful.

During a very difficult time in my life, I read this story. I have never forgotten it, and I have shared it multiple times. It is all about being thankful for the hard things in your life. I highly highly recommend taking the time to read it!

Here are 3 ways I challenge you to practice gratitude. Try it for 30 days. It will change your life!

Write in a gratitude journal. It only takes 5 minutes. Write all the things you are grateful for today. Try not to repeat yourself. You can try to express gratitude for hard things here too.
Express gratitude to at least one person every day. This can be in person, by text, in writing, any way. It is powerful for your relationships when you express gratitude to others. I have seen new relationships form in my life through gratitude. I have also seen relationships heal. It is amazing the impact gratitude has on relationships.
Express gratitude to God every day. This is important, and if you are religious and have a habit of praying, you probably already do this. If you don’t, try it. I like to use my gratitude journal to do this as well because God is the source of all of the wonderful things in my life. Writing and prayer can go together in a very powerful way.

Try one or try all three. Try it for 30 days. I promise that if you do, you will find yourself, your relationships, your emotions, and your life changing for the better.

May 3, 2018May 30, 2018

What is Faith?

I used to think that I knew what faith in Christ was. I used to think that if you had enough faith in Christ and His redemptive, healing, and sanctifying powers, all your problems would eventually go away after you had learned what God wanted you to learn. I used to think that faith in Christ equaled trusting Him enough for Him to take away all the pain. Faith meant that if I was patient enough through afflictions and trials, I would eventually be able to look back on the trials with a greater appreciation for Him and what He has helped me to learn, but only after the trials had ended. I used to think that I only had to have faith long enough to get me through a short period of time.

I now know that I am only beginning to understand what true faith in Christ means. Amid all the confusion and uncertainty that my condition gives, I know that there is a plan for me. I do not know what that plan is. I cannot see all the good that God has in store for me. I cannot see all the blessings yet to come for myself and others because of my life-threatening condition. At times it is hard to believe that much good will come from this. I know that my end of this trial will be the result of death, which just exacerbates the trial for my family. Living with these thoughts can be devastating and crippling at times. However, there is One who heals. He knows my pain and what I face on a daily basis. He knows that I think about my condition more than a hundred times a day. He knows it is hard. I know that He knows this. At times I wish He could take it all away. I have learned so many things already, so why can’t He take this away?

My condition is a genetic disorder and will be with me my whole life. I was born with this condition and I will die with it. So where does faith fit in with all of this? Faith helps me to live with it. Faith helps me to live. Faith helps me make it through each day even though I know that the trial will never end in this life. Looking at the future without faith or with weakened faith is daunting. It is discouraging and downright miserable. It is only when I look to my Savior in faith for strength to endure that I am able to withstand the physical, mental, and emotional pain.

I used to think that all trials end at some point. I began to believe that this trial would never end. And, although it will be one that I cannot escape in this life, I know that, through Christ, my trial will eventually end and I will be able to look back in the eternities and see so many blessings, so many gems of knowledge and growth that are specifically tailored to me by my Heavenly Father. I have faith in the eternal life that is promised to those who are faithful. This faith is what supports me, strengthens me, and comforts me in my moments of despair.

When facing trials, faith either means nothing or everything. I have often thought about what my life would be like without the Gospel. If I left the Church because times got too tough, I think times would get even harder. It is important to strengthen our faith when things seem to be running smoothly because we will need to draw upon that strength when times get tough. It is not a matter of if, but when. When times get tough, when it seems like everything is going wrong or life is too hard and no human word can bring enough peace and comfort, I try to lean on my Savior even more. Sometimes, even while leaning on the Lord, my trial seems too much for me, but I am reminded that it is not too much for us together because of Him. At those moments, I feel the comfort that comes and know that eventually I will be okay, but until then it is enough for me to be in His care.

For the first 36 years of my life, I had no idea that I have this genetic disorder which subjects my arteries and organs to life-threatening, spontaneous ruptures. Over the last year, I have asked why I am just now going through the pain. I have to admit that I have despairingly submitted to the natural tendency to question why. Why me? Why now? I have a wife and six children. Would life have been different if I knew about my condition early on? I am sure it would have. I love my life. I love the family that I have raised. I love my wife with all my heart. I couldn’t imagine never having them in my life. Through faith, I am learning to not ask why now, but rather to have gratitude that I was spared the pain earlier in life. The pain and anguish that I have experienced over the last year have, at times, been on the verge of unbearable. I am grateful that I have been allowed by my loving Father and Savior to live without the knowledge for so long. Sometimes I wish I could be back in the days when I didn’t know. I know that is not possible. They say that ignorance is bliss. I have faith that, through my Savior, someday my knowledge will be bliss. I get glimpses of that bliss from time to time. I can’t wait to hold onto that bliss for eternity.

I have learned that to have faith in Christ is to have faith in His atoning sacrifice. Part of that sacrifice makes it not only possible, but certain that I will someday have a resurrected body. I have always heard this and have imagined how glorious it will be to have a perfect body, but I have recently gained a greater appreciation for this splendid gift that He will one day give me. I grew up without the knowledge that I have a life-threatening condition that can strike at any moment. I thought my body was just about as perfect as it could be and didn’t have many complaints about it. Now that I know I have had this condition my whole life, it makes me wonder what it would be like to have a normal, let alone a perfect body. I can hardly imagine! I admit that I have taken the resurrection for granted for too long, but now I can’t wait for that day when my spirit and body will be reunited in perfection. Pain will no longer exist. I will no longer have to worry that my body is likely to fall apart at any moment. What freedom my Savior is giving me!

May 1, 2018May 30, 2018

What If Today Is Our Last Together?

This is a question we have asked ourselves every day for the past year. The reality of our mortality has been forefront on our minds. The truth is that we all have limited days on the Earth. We are all dying in a sense.

Every day we have woken up with the reality that it could be our last together on this Earth. It has taken us the entire year to get past some of the fear from this question. It is a powerful question, but when it is a real possibility, it can be very scary. The what-ifs can be paralyzing. It has been a process to learn to live with such an uncertain future. At first, we didn’t dare plan a week ahead. Now, we are making plans months in advance, which feels really nice. We know that it’s possible that these plans will change, but we have to continue living. It is a hard way to live, but it can also be a beautiful way to live.

What would you do differently if you knew it could be your last day on the Earth, or your last day with a loved one? This question has made us re-evaluate a lot of things. We are quicker to remember what is most important. For us, that is relationships with family, friends, and God. We spend more time making memories. We cherish moments and think to take pictures more often. We seize opportunities when they arise, when, in the past, we may have let them slip by. Greg has recorded his life story. We make God a bigger part of our daily lives and our family life. We are more careful with our time and how we spend it. Each day means something. They are not all good days. There are days we are grateful weren’t our last together, but we have made some positive changes.

Howard W. Hunter gave us all some great food for thought when he said: “Mend a quarrel. Seek out a forgotten friend. Dismiss suspicion and replace it with trust. … Give a soft answer. Encourage youth. Manifest your loyalty in word and deed. Keep a promise. Forgo a grudge. Forgive an enemy. Apologize. Try to understand. Examine your demands on others. Think first of someone else. Be kind. Be gentle. Laugh a little more. Express your gratitude. Welcome a stranger. Gladden the heart of a child. …Speak your love and then speak it again” (Godoy, Taylor G., April 2018 General Conference), (Teachings of Presidents of the Church: Howard W. Hunter [2015], 32; adapted from “what We think Christmas Is,” McCall’s, Dec. 1959, 82-82).

Something we have realized is that Today is truly a gift. It is the only moment in time we have complete control of. We can think about the past all we want. We can worry about the future. Neither does any good. Today is what we have. It is the most important moment in time.

What are you doing with your day? Who do you love, and do they know it? What is one thing you can do today to strengthen a relationship with someone you love? What is one thing you can do today to get closer to your goals? Post in the comments below.

April 29, 2018

Posts