Simple truths and the obituary

A good friend of Tony's shared a few thoughts with me since Tony's passing.

"Thanks to Jesus, death is a comma and not a period" (Elder Maxwell) as well as, "In order to take the mourning out of death is to take love out of life."

I thought both of these thoughts were fitting for how I have felt over the past six days. Even with all the planning that goes into a funeral, life has slowed down a bit and I've had many more quiet moments to reflect and pray.

Losing Tony temporarily in this life has been the most difficult thing I have experienced so far. And as everyone who has lost someone close due to a terminal disease has told me, even with the time you have to "prepare" and come to peace and acceptance about it, there is no way to be fully prepared for it. That is most definitely true.

I'll have time in the months to come to really dig down deep and share all the thoughts zooming through my head. But these two are some of the most important that I have continued to learn this past week:

-Because of Jesus Christ, and only because of Him, death is a comma. Without Heavenly Father's Plan of Happiness and the Atonement of Christ, we would all die and cease to exist. This life would be in vain and would have no true purpose. I know without a single doubt in my mind that Tony and I will be reunited together again as one, with our precious children and all the family we love so dearly. Even though Tony is no longer here with me physically, I will forever remain his wife and he will always be my husband, and together we will raise our children in light and truth. The gratitude I have for my Savior has increased exponentially as I recognize the hole in my heart and know that it will be pieced together again through the Atonement and the Resurrection. And how great our joy will be as Tony and I can walk hand in hand again one day and kneel at the feet of our Savior and weep with tears of gratitude. All the pain and heartache will be worth its cost, and Christ will bare more than His share for me in the many years to come. We are all so loved.

-Grief is essential to our spirits, just as much as love is. There have been moments where the grief seems unbearable, where I want to cry out in pain as I feel my chest collapsing in sorrow. That's how it feels to me, and I hate when it comes crashing in. But I am thankful for this deep emotion as it's a reminder of how deeply I love Tony, how full and enriching our marriage is, how we were really able to connect "as one" over the past decade. I would do it all over again a thousand times to be with him forever. I will welcome the grief to continue to have all this love. We will be together again, and until then, I never want to forget how Tony makes me feel as a wife, mother, and above all, a daughter of God.

Thank you to everyone who continues to reach out to my family and me. I'm overwhelmed and grateful for all the love and support, and within time, hope to respond to all the beautiful and comforting words that have been written to me. Sometimes there are no words and a hug can make all the difference. Thank you.

Here is Tony's obituary for those who are interested in information about his services this weekend:

Daryl Anthony Means, also known as Tony, age 31, of Orem, passed away on December 2, 2016 (glioblastoma brain cancer). He was born December 29, 1984, in Orem, Utah to Daryl Von Means and Sharese Thompson Means. Tony married his eternal companion, Erica Alyse Kendall Means on June 8, 2007 in the Nauvoo LDS Temple.

Tony completed his bachelor’s degree at Brigham Young University in health education and pursued a career teaching seminary for the LDS church at Orem High from 2012-2016. His passion for the gospel, his Savior and his students impacted hundreds of lives while teaching. Movies, music, camping, and anything Scottish filled his time but above all, spending his days with his family was his favorite pastime. Being a husband and father was his top priority in all he did.

Tony is survived by his wife (Erica Means) and children (Daryl Landon, Emma Alyse, Lily Kendall, Sophie Mae, Tanner Fielding, Amelia Rose, and soon to join the family, Caleb Anthony); by his father (Daryl Von Means); his sister (Lindsey Rebecca Means); his brother (Andrew Warner Means). He was proceeded in death by his mother (Sharese Thompson Means).

Funeral services will be held Saturday, December 10, 2016 at 11 a.m. in the Northridge Stake Chapel, 1660 N 200 W, Orem, Utah. A viewing for friends and family will be held Friday evening from 6 to 8 p.m. at the church as well as Saturday morning from 9-10:30 a.m. Burial will be in the Orem City Cemetery. In lieu of flowers you may donate to Huntsman Cancer Institute’s elephant and cancer research at huntsmancancer.org/donate and indicate the gift is for Dr. Schiffman’s lab in the notes section of the online donation form.

Peaceful sleep

My dear Tony passed away last night. It was peaceful, sweet, and quiet with no struggle or pain. I laid next to him in his bed for an hour before the funeral home came to take and protect his body for us. I will miss stroking his hair, rubbing his ears, holding his hands, and kissing his perfect lips, among so many other things that I hold so dear and sacred. We have a beautiful and enriching marriage together, and were blessed with seven wonderful and special children. They are all doing okay and we will make it through slowly, one step and tear at a time. Families really are forever and Tony will be waiting for us, helping guide us each day.

I'm in too much pain to write more and I can't see the screen. I'll post further arrangements once I have them planned. Today, give someone a compliment just as Tony does. Find someone who is downtrodden and lift them up.

I love you, Tony. Please keep my heart safe until we are together again.

The dying and the living

A few days ago, Tony placed his hand on my growing belly to feel our baby Caleb moving. His eyes lit up as he whispered to me, "I feel him! He is such a strong boy. I can't wait until he is here." Afterwards, he closed his eyes and slept for a few more hours.

The last few weeks have been a whirlwind for our family. Tony slowly began losing the ability to walk or get up without great assistance, his voice became quiet and only whispers came out of his mouth, and his consciousness was beginning to fade. A really hard decision had to be made: do we try to continue these last two treatments until his next MRI, or do we transition now to hospice? Tony was unable to help in the decision, not fully understanding his new deficits and lack of energy. By Monday (just two days ago), I knew it was time and that this would be the best support for him and our family. Talking with our doctor on the phone, he agreed and said the treatments are no longer helping and his significant decline means we are nearing the end. Tony could have anywhere from a few days to six weeks; every patient is so different making it difficult to determine an accurate time frame. My prayer for Tony right now is that he can remain without pain and that he can be at peace with our family.

Hospice arrived yesterday and set up a hospital bed and all the other support we need. Tony had declined so much in one day that he had to be carried downstairs to where we are keeping his hospital bed. He is next to a cozy gas fireplace with his Christmas gift from our kids wrapped around him. He loves his new blanket (pictured above) and enjoys listening to the kids point pictures out and talk about each memory. Tony now sleeps most of the time and is fading quickly. I am so happy that he currently is in no pain and is still aware of us being around him when he is awake. My mom is staying with us to care for the kids 24/7 so that I can sit by Tony's side as often as needed. And Tony's male members of his family have been able to help me care for Tony's physical needs since he can no longer get out of bed. Our needs are being met very well right now.

As Tony placed his hand on my stomach, I watched as he tenderly expressed his love for this baby and our children. Watching my dying husband place his hand near our living, growing baby welled up soft tears in my eyes. Something tender and sweet swelled in my heart while accompanied with grief and sadness. The grief stayed for a short while and then faded as I looked toward heaven thanking for such amazing miracles we have experienced and will continue to experience. If we just look a little further, we will always see how miraculous and wonderful our lives are and how loved we are by our Heavenly Father.

I prayed to God that if we must undergo this deep sadness and loss in order for us to become as He is, than I will do it willingly. I don't want to, it's too painful to look into the future and see an empty space at our table, and to feel half my heart dying with him. But I do trust God with that same heart, and I know that He will help me to heal and that my Savior does understand me completely. I may lose half my heart but the half that is remaining will grow stronger over time. I know we will be okay and that wherever I lack in raising our seven children, God will make up for my inadequacies and mistakes and will be there for our babies every step of the way. He loves us and will never forsake us.

Again, I want to continue to thank you for so much love and support, especially for the power of your prayers. Right now we will be spending every moment we can as a family and will focus on keeping our home as quiet and as sacred as we can in order to help our kids. With Tony's current condition, he can no longer respond to phone calls, texts, or messages but if you would like to share a word with him, please contact me and I will relay your thoughts to him as best I can. For right now, I won't be responding to messages but will do so when I get the time in a later date so please know that I am not ignoring you ;) Time is precious and each day is a gift. We love you all.

Grateful

It's moments like this above when one word pops into my head: grateful.

Each of our kiddies gets a turn to sleep between us in our bed each week. I'm so glad I had a quick moment when I woke up after Lily's sleepover in our room to take this picture. It's really priceless to me. They both were really asleep! (Although the flash may have woke Lily up!)

Being November, this is an appropriate post. It wasn't the upcoming Thanksgiving holiday that prompted me to write but instead the incredible outpouring from all of you. After our short clip about the Halloween haunted house fundraiser on the news we have been incredibly blessed by generous donations to our family. With this money, we spent a small portion on some special Christmas gifts for our children and have placed the rest in savings with the intent to use it for continuing medical bills or whatever may seem fit in the future to help our family. This money is very special to our family and we are trying to use it wisely because of the many sacrifices given by others. Tony and I were very touched by the simple coins donated from some families because they had nothing else to give; we were moved to tears from such great love.

There have been several other fundraisers (such as the Fun Run and online accounts) in the past that we just want to say a big heartfelt thank you to each individual who helped in every way. We have had meals brought in, many babysitting hours given, and have been given special opportunities that we may never have received without you thinking of our family. It means so much to us and has made a fun and relaxed atmosphere for our kids-- and that is something so important in our lives right now. Thank you.

*Update on Tony: He is doing well and continues his treatments each week/sometimes every other week. Many have noticed his decreased energy levels recently, which is expected with this disease, but he remains in good spirits as always! Tony is very excited for the upcoming holidays and I have planned a few fun family Christmas activities for him and the kids. His next appointment to check the stability of his tumor is on December 15th; I plan on posting that evening with the results. We are continuing to pray for Tony to get better, and our kids are the biggest advocates. Thank you again for the continued prayers in his behalf. Faith can move mountains if God is willing!*

Talking with a good friend the other day, I was trying to put into words my feelings of deep gratitude for all the help we have received and how I feel undeserving of it all. I feel that my "thank yous" fall short of how I really feel and that I cannot express truly how Tony and I feel toward you all. As I reflect on my imperfect heart, my mind quickly drifts to my Savior. All my life, I have always felt undeserving of His love and His atonement for me. Why did He do this for me? I am nothing special, I have no particular great talents to offer, I am just me, nothing of importance. I am "confused at the grace that so fully He offers me." And then again, why me?

Don't we all feel this way in our lives at some point? We have been blessed with so much yet our contributions are hardly any match to what we have been given. Through this past year, I have often paused to ponder the many blessings our Father has showered upon our little family. Interwoven with all the heartache, tears, questions, and worries are the wonderful things we never knew we could experience. My eyes have been opened to the wonders of heaven that are here on Earth and deep appreciation has grown in my heart, causing it to swell at times.

That burning feeling must be the beginnings to answer my question. Why me? Why are we so blessed? It's because of love. Our Heavenly Father and our Savior love us. Period. It's simple! We don't have to do anything or be anyone special because in their eyes, we already are. So that is what you all must be feeling about our family; you love us just because, even if we have done nothing of importance. You give and love so willingly because you are becoming as we are asked to become. Thank you for teaching me and helping me to better understand such compassionate love. In turn, I am trying to love as my Savior loves, to pray with more intent and think on others and less on my own life, to reach out more. My heart has felt more compassion towards others' situations, and I am finding that I want to be better and that I now know how I can do that. Your service to our family has not only helped us in our time of need but will continue to help us throughout our lives as we in turn "pay it forward" and try to become as our Savior. This is the most incredible gift you have given us. Thank you for buoying us up in all these ways.

And if you have days when you feel like me, undeserving of so much love, remember how God loves you and nothing will ever change that. He will bless you as you need and always beyond your comprehension! I promise that He does and that it will all be worth it, that you are always worth His love and the love anyone gives you.

My heart broke

This past weekend was an emotional roller coaster for our family. On Sunday our seven year old daughter, Emma, randomly looked at me across the kitchen table and shyly asked, "Is Daddy dying?" Tears clung in her eyes and her little hands were shaking as she took another bite of her yogurt. All the other kids glanced up at her and then at me for my response. 

I took a deep breath, praying for guidance to answer this question in a way that would be most comforting and also honest to our children. You see, after our "not so good news" less than two months ago, Tony and I discussed what, how and when we should talk to the kids about his health. Losing his mother himself at the age of nine, Tony knew that it needed to be a very prayerfully guided journey to discuss this with them, not just a one-time punch in the stomach. We've decided (with some excellent advice from his grandmother) to let the kids lead the way in discovering these things by welcoming and encouraging their questions and then answering them appropriately.

This particular breakfast (as are most) was all on me. Tony was still resting in our bed, fast asleep. I wished I could have jumped on him and asked him to take the lead but I knew I needed to be a big girl and face this right now. How do you talk to your sweet little children about the reality of their dying father? We continue to be hopeful and pray for a stabilization of his condition, or better yet, a true miracle of God. Our kids are full of hope and their faith is much stronger than ours. If Tony is allowed to stay with us and continue to live, it will be because of their faith and prayers. They are the innocent and true loving and selfless whose faith can move mountains if God wants it. I truly believe this can happen. But we haven't been told what our Heavenly Father wants; He is gently leading us along day by day, trying to teach us so many things if I will but be still and learn.

Emma's question must have been prompted by the noticeable decline Tony has had. It's been eight months since his last surgery and official diagnosis of glioblastoma, a brain tumor with no cure. But it has also been almost eight years since his original discovery of his brain tumor. Our kids have only always known that "Daddy has an owie in his head" and that this past year since October 2015 it is getting bigger and making him more sick. Our children can see his decline, how Tony needs more help to walk anywhere and to sit out of bed, etc. They understand that we hope his medicine he receives will help him not get worse, and that the medicine may stop working.

I walked over to Emma and said, "If the medicine doesn't keep helping Daddy and his tumor starts to grow more, Heavenly Father may decide to take Daddy to heaven. Only He knows what the perfect plan for our family is, and no matter what happens, we have to trust Him. Heavenly Father can decide to heal Daddy if that is the best thing for us but He may also need us to learn different lessons."

Fighting back the tears, she nodded at me and looked down. You see, Emma is not shy of asking hard questions (she is sooo much like her father) and I could tell she wanted to know more. Once I invited her to ask more, she jumped up and blurted out, "But what happens when a person dies!? I know their spirit goes to heaven but where do they die and how does their body get buried?!" All the kids look at me while I am stunned that she even had thought of these questions but also grateful that she knew she could ask. We had a few minutes discussion about the whole matter, mainly with our three oldest keenly interested. The discussion ended with love and continued hope for our family, and Tony was able to follow up later that evening.

My heart broke that morning. There's not much more to say than that. I love my babies so much and seeing them worried just plain hurts. But that broken heart was pulled together a bit as I really could see the Atonement and the Plan of Happiness working in their lives. Jesus Christ can even help my little ones in ways that I can't. Having so much understanding from the Gospel is amazing; and our conversation only ended with peace because of what Christ made possible for us. I'm so grateful that God loves us so much that He will do what is right and perfect for each of us. He knows what our little babies need much more than I know, and He will make everything right, even if we feel our hearts are breaking. "Trust in the Lord with all thine heart and lean not unto thine own understanding." That is the true miracle of all, that we can learn and find Christ, and through Him become perfected to live with God again. It will all be worth it.

On an excited note, if our Utah friends want a fun family activity this weekend (with free admission) and hopefully a chance to see Tony dressed up as who-knows-what, come to this fantastic haunted house in our neighborhood! Our dear friend, Randall Jones, is turning it into a (first-time for this event) fundraiser for our family and the Utah Food bank. We go every year and this year we hope to promote this tradition to help future families in need! A HUGE thank you to him and all the many, many volunteers who have put in loads of time to put this together and for thinking of our family. Check out this video to learn more or go to tonymeans.org.

Homeowner goes all out for Halloween to help family in need

To love, to hold.... and to share

At the CEC in Florida, courtesy Erica Richardson Photography 

We had yet another big day at the Huntsman Cancer Institute. After five weeks of continued treatment with two newly added chemotherapy treatments, we were more than ready to hear how the inside of Tony's brain was behaving...

.... And I am happy to report that it is behaving rather well! There had been significant tumor growth the last time we had a status update; today was much better with the image showing only small amounts of tumor growth, small enough that we feel the new treatments are working in halting the tumor from spreading quickly. So the plan is to continue Tony's new treatments (sometimes every week, sometimes every other) and we will have another assessment December 15th. Mark your calendars, y'all ;)

Tony and I want to thank everyone who continues to love and support our family in many different ways. We truly feel your love and prayers buoying us up and helping us to see the good in every day. 

Today's news was a miracle to me. When we talked with Tony's neuro-oncologist team five weeks ago, the prognosis we received was very grim. If the tumor growth continued as aggressively as before, they only expected Tony to live 6-12 weeks (which would put him at the beginning of December with the best scenario). I know...... it was a bit shocking. But here we are, five weeks later and Tony is holding strong in such a beautiful way, with few new symptoms. We now have an unclear (and still holding on to a hopeful) prognosis but are gleefully confident that we will get to enjoy Christmas together, which before seemed impossible according to the medical world. What a blessing! Thank you again for all your thoughts and prayers for Tony, as we feel this is because of the strength of faith we all have collectively; faith literally is a power and this type of faith does provide miracles.

I'd like to share one last thought before I sign off for the next few weeks. One of my favorite conversations to have with others is about the difficulties they have experienced in life, and then to see how they have overcome and grown stronger through their storms. It is such a blessing that we can share with one another our life experiences (as appropriate) so that we may vicariously learn and grow from their stories. I have been strengthened by several people from different situations, some whom I've never even met, because they have opened up and shared hard things. 

Living with someone you love so much who has a terminal illness can be very difficult. There is so much unknown in the future, so many questions, so much heartache and longing for the past. But I promise that even with the emotional and sometimes physical discomforts that are associated with our present lives, peace can be found. The unknown future is replaced with increased faith and trust in God that He will always do what's best for His children, and that He will never leave our side. Questions are replaced with answers of His eternal plan of happiness; God will never forsake us and will bless us beyond our mortal comprehension; many blessings come in disguise that we do not recognize until much later in life. The gift of eternal life with Heavenly Father and our Savior and those we love is possible and attainable if we allow ourselves to follow Him. And the longing for the past, before the difficult time began, is replaced with an assurance that we can or will one day look at our current situation and find deep beauty and appreciation in the heartache. Our hearts will only grow stronger and more tender. Slowly, if we allow it, we become better.

And isn't it great that we can learn these things to a certain degree without undergoing them ourselves? This is why Tony and I share our story. Our hope is that we can increase your desire to turn to the Savior and our Father, to learn that you are worth everything to them. We hope that you can hold your loved ones longer, pray with more sincerity, and turn your lives more toward heaven, leaving behind all the things that do not matter. 

And it will all be worth it.

Dream trip

So this post is going to be a lot of pictures and not very many words!  We had a great time on our trip made possible by the Dream Foundation to Orlando last week where we were able to visit the Center for Elephant Conservation and spend a day at Universal Studios and a day at Disney's Magic Kingdom. Tony's family was able to meet up with us for this trip and experience a great time as well. A group of 17 (with more kids than adults) is not for the faint of heart; we sure had to rest up once we were all home!

Tony did wonderfully well on the trip and enjoyed watching the kids have a blast. He especially loved meeting an elephant, Mysor, who is 70 years old, and getting to pet her trunk and feed her bread straight into her mouth. It was incredible!

Hope you enjoy my amateur pictures taken on my phone!

The pilot invited the kids to fly the plane ;)

 Universal Studios: spent most our time at Harry Potter world enjoying lots of butter beer!

At the CEC--- enjoying Mysor and seeing all the elephants (more than 35!).

Disney World (Magic Kingdom)-- Jennifer (my birthday twin from high school), as well as lots of pictures of the kids with princesses and enjoying the parade.