The Day In Between

 

Christmas Day, 2012. Crying exhausted her, and I held her while she slept.

The Day In Between 

December 26—the day in between when I celebrated Christ’s birth and the day I found out my 3-year-old daughter would die…sometime in the near future. 

Abigail had fought stage-4 cancer for 2 years, and as of Dec 22, had “No Evidence of Disease.” On December 23 she started crying, and the hyper-suspicions of an oncology parent’s mind kicked in fiercely. She had her routine scans already scheduled for Dec 27, so for 5 days we held our breath and enjoyed every happy moment, punctuated by her pain, crying, and sleeping. 

At her initial diagnosis in January of 2011, it was scary because I knew too little about neuroblastoma. At her relapse diagnosis on December 27, 2012, I knew too much. I knew she had less than a 1% chance of surviving it. And beyond that, I knew in my gut it was God’s message that He was calling her home. 

During dinner time, she spiked a fever which landed us back inpatient on the oncology floor of the children’s hospital, and we were there over the New Year celebrations. Happy New Year, indeed. Spiteful, hateful words! This was the year my baby would die. 

The Years In Between 

It has now been 8 years since that day. I vividly recall that Decembers were really rough for the first several years. But I can also now boldly testify that Christ heals broken and shattered hearts, and while He doesn’t take Abigail’s place, He has soothed it and bound it and healed it until we are reunited. There is now joy where mourning once was, and the exciting part is that this is joy-while-we’re-apart….and I get to look forward to the indescribably joy that will come when we are together again. 

Healing 

This is a tender topic. Every individual is unique, and even my husband’s experiences are dissimilar to mine. But I can share the key points that enabled my healing, and hope they may be of some comfort or enlightenment to others. 

1. Faith. I had to actively pursue Christ’s injunction to “Let your heart be comforted.” He would not override my agency to replace sorrow with peace, and it was truly work on my part to choose comfort when it felt so normal and natural to feel grief. This became easier with Key 2. 

2. Time. Elder Neal A. Maxwell said essentially that time is foreign to us, because we are not mortal beings, but eternal beings. It is appropriate to grieve and take all of the ‘mortal time’ you need and no one should tell you otherwise. It is also appropriate to grow into the new person you are after trauma, and time helps distill and clarify just who that person is—how you function and what you focus on “after.” Time does not erase, but time does allow space. 

3. Forgiveness. I had to forgive one of Abigail’s oncologists that had inflicted a great deal of emotional pain on our family. This was not easy, and it was several years before I felt a completion of forgiveness in my heart. Additionally, I had to forgive myself for inflicting a great deal of physical pain on Abigail, in the name of “treatment.” Without delving into lengthy specifics, we had limited treatment options and went with an antibody treatment in NYC. It was a week of excruciating pain for her, mitigated by being dosed with an opiod drug repeatedly, almost monthly for 8 months. After her death, I felt an immense pain at putting her through this, because it hadn’t worked. 

One day several months after her death I was mourning and lamenting in prayer about this, and then spoke outloud to Abigail. I told her I didn’t know if she was listening, but that I was so very sorry for that pain. And it was one of the few times she has verbally communicated with me since her death. I heard her say, “Mom, it’s okay. It doesn’t matter anymore.” Bold typeface doesn’t justly communicate the release of pain and relief that came from the feeling attached to her words. It really DID NOT matter to her anymore. It encompassed not only her NYC treatment, but all the pain she had experienced for 3 years, which was a lot of pain. And so I could let it go, too. This was, and is, a sacred experience to me.

Back to the Day In Between

So today is an anniversary of sorts. Each December I reflect on this time of deep, immense emotional pain, and marvel at how the Lord has morphed and shaped it into something deeply and immensely beautiful in my heart. A few tears roll down my cheeks as I type and reflect on this again, but they are soft, peaceful tears, traced with longing for my child and joy of where she is and joy of Christ’s healing and future reunions. 

This day, along with thousands of others that will occur between her death and our reunion, are all days “in between.”  Because of His birth, all of the days in between that event and His return can be used to glorify Him. I know this is true, and I gently and joyfully proclaim that mourning can be turned to joy. 

Faith.

Can I Give Thanks?

We just finished the Thanksgiving season...well, a month ago that is. I have continued to study President Nelson's message entitled  "The Healing Power of Gratitude."  It is a remarkable message, and really centers my soul and settles my spirit.

Today I pondered on the phrase "We can give thanks for the gift of life" and asked myself 'What about death? Is that a gift?' And the Spirit brought to mind a couple scriptures. I've read the Book of Mormon many times, but these phrases jumped out at me after experiencing the death of a child.

The prophet Jacob is expounding on the Atonement of Jesus Christ, and right after he discourses on death, hell, and the grave, he says, "And it shall come to pass that when all men shall have passed from this first death unto life..."

Pass from this "first death" unto life! 

He is not the only prophet to speak on the subject, as Amulek also had something to say:

Now, behold, I have spoken unto you concerning the death of the mortal body, and also concerning the resurrection of the mortal body. I say unto you that this mortal body is raised to an immortal body, that is from death, even from the first death unto life, that they can die no more; their spirits uniting with their bodies, never to be divided; Alma 11:45

I won't split hairs or get too technical with how many deaths there are....death from leaving God's presence to come to earth, death of the mortal body, death of the spirit world life and being resurrected...the point is, death leads to new parts of life.

I can give thanks for MANY things about death. I give thanks that Abigail's suffering ended. I give thanks for the lessons we learned. I give thanks for the refining process of terminal illness. I give thanks for knowledge...I give a LOT of thanks for this...knowledge of knowing death is not the end. Knowledge that I know where she is. Knowledge of what she's doing. Knowledge of eternal covenants.

In all things, Christ once again is the ultimate example. I give thanks daily for His Atonement, which includes His death. It was necessary for more to happen.

Abigail's death was also necessary for more to happen, both in her life and in mine. I give thanks for her "first death unto life." Yes, I can #givethanks in all things. The apostle Paul wasn't joking when he said “In every thing give thanks." He didn't qualify his statement. He meant it, Christ lived it, and I am trying.

Always, faith.

When "Happy New Year" Isn't Really so Happy

Five years ago the words "Happy New Year" were cruel, harsh words. My 3-year-old daughter Abigail had landed back in the hospital, on the oncology floor, because her deadly cancer had come back a few days previous. I knew she was going to die, it was only a matter of days or weeks or months. There was nothing happy about the New Year; those words were hurtful, they were bitter, and they were hypocritical. This was the year my little girl would die. "Happy New Year" was synonymous with "Which poisons would you like to choose (now that you have a choice) to put in your daughter in an attempt to keep her alive a little longer?"

Seven months later she returned Home. And then five months later, I was faced again with those same words of "Happy New Year." Really?! No, it was still not happy. At least in 2013 I could say I had still held her that year....with a new year, my words had to be phrased with "last year..." That was so hard.

This post is for those who are still feeling that raw, aching feeling and who don't love the words "Happy New Year." I understand, and my heart aches for your pain. Be gentle with yourself. Go ahead and dislike the words, or the newness of the year. There's nothing wrong with that. I have been there. And now it's been five years since then.

You can read back through this blog to find my description of how I am like a "blue sphere", but basically I'm focusing on the raw, painfully jagged hole that was scooped out of me when Abigail died. It throbbed, and my 'pain vessels' overflowed frequently. Miraculously, they rarely do anymore. I testify that Christ heals! He has truly built and created a protective barrier around my loss--He doesn't fill that hole, because that's where Abigail belongs. But He's bound up and stitched up and healed up the wound. The 'painflammation' is gone. Christ truly heals the broken hearted!!

He doesn't do it without permission. He will not override agency. So it was a process of learning to trust Him, trust His process, and "LET [my] heart be of good cheer." It takes faith. And it also takes time. Healing is definitely a lengthy process, regardless of what is broken.

Gratefully I can say "Happy New Year!" again, and mean it. He has also healed my perspective. It's not one year further away from when I held Abigail, it's one year closer to when I can hold her again. Now I choose to look at her relapse day as the day she was called on her mission, and her death day as the day she reported. What a missionary!

He is the Light and Life of my life. I am so deeply grateful that He and His Father are perfect: in their love, their purpose, and healing.

As always, faith.

Perspective from Four Years!

July 15, 2017. Today we observe that it's been four years since Abigail went Home. Happy Heavenly Birthday, Abigail! Four years. Next month will bring the day that marks that she will have been gone longer from us than she was with us! That is hard to comprehend in my mind.

I also can't believe it's been so long since I've posted here on this blog. Writing has been so therapeutic for me, and I would feel an urge to write as part of my healing. And then I guess one day I just didn't think of writing. Nor the next, nor the next. And I basically didn't think of the blog anymore for a long time!

Last night I told Aaron that, as of right then, I didn't have any feelings of sadness for today. And so far, that continues. This morning I read John chapter 11 and 12 where Jesus raises Lazarus from the dead. What an incredibly, miraculous story!! I love when Jesus tells Martha that HE is the resurrection and the life. But she didn't quite understand Him, because shortly thereafter she cautions Him that Lazarus will stink if they remove the stone from his grave.

Sometimes we don't get it. I pondered this morning that there are many events in life that we don't understand until enough time has expired where it gives us a broader perspective on the event's purpose. And even then, we likely don't understand it fully. My mind recalled Abigail as a baby, and the fact that she was so clingy to me. She was so very, very attached to me, from birth on. As a four-DAY old, she refused to let Aaron comfort her, and that pattern continued. I was the only one, for many, many months, who could calm her. That was tiring and frustrating at the time! I was exhausted.

June 27, 2009 -  15 days old

 But I look back now and marvel. I truly believe that her spirit knew she wouldn't be here in mortality long. I don't know the doctrine of how much we know of our own individual mortal experiences prior to our mortal birth, but I truly believe Abigail knew something of her short stay and possibly of her disease, and she expressed that by demanding that I spend a lot of time with her. From her first week of life onward! I rocked her to sleep for every nap she took, and as a 6-month old, I questioned to myself if it was time to teach her to nap on her own. The answer was no. That repeated several months later. Rocking a toddler to bed for each nap is a major commitment, and I did NOT do that with my other children. But I felt prompted to do so with Abigail. And how grateful I am now, knowing I held her and loved on her without knowing what it would mean to my heart later.

Knowing that our perspective is finitely limited, but trusting in God that He will guide us through paths we couldn't imagine and will ultimately be blessings to our lives, brings an incredible sense of peace during our sufferings and sorrows and afterwards as well.

Today I am at peace. Today I am full of internal joy and contentment. I know that Abigail is exactly where she's supposed to be. I know that Father is using her talents and capabilities there as much as He would have here. I have been specifically blessed to know of one missionary experience she's had, and it thrills me. Yes, I miss her. And if I try to type more than that, I cry. But crying is fine, too. :)

I testify that Christ binds up broken hearts. He IS the Resurrection and the Life. "His way is the path that leads to happiness in this life and eternal life in the world to come."(1) He tells us that we must exercise faith and action---"LET your hearts be comforted."(2) "COME unto me, all ye that are heavy laden, and I will give you rest."(3) I testify that through revelation to our day, we know more about this life and life hereafter. I know Abigail is doing the Lord's will, as Jesus said in what we call The Lord's Prayer: "Thy will be done in earth, as it is in heaven."(4) God has a Plan, (5..great talk) and Abigail is helping further His kingdom there.

I find comfort and happiness in these words of Elder Neal A. Maxwell:

"On the other side of the veil, there are perhaps seventy billion people. They need the same gospel, and releases occur here to aid the Lord's work there. Each release of a righteous individual from this life is also a call to new labors. Those who have true hope understand this.

Therefore, though we miss the departed righteous so much here, hundreds may feel their touch there. One day, those hundreds will thank the bereaved for gracefully forgoing the extended association with choice individuals here, in order that they could help hundreds there. In God's ecology, talent and love are never wasted. The hopeful understand this, too" (Notwithstanding My Weakness, p.55).

So Happy Heavenly Birthday/Mission Call Abigail! We love you forever, and are so grateful you will keep us forever!

FAITH.

Trust

On Saturday my family did a deep clean of our sunroom, and my daughter brought something in to me asking if we should keep it or toss it. I'm keeping it.

It is a handmade stack of quotes, laminated and tied together. Wow, what memories it brought up. It's from when I was struggling to find peace, to feel God, to make decisions I didn't know a thing about with Abigail's life. I had a handful of quotes that brought me comfort, and I asked a friend to compile them into a flashcard-style stack so I could carry them with me. She did a lovely job, and I was grateful then and am still grateful.

As I read through them again tonight, it hit me how almost-desperate sounding they are. They aren't desperate, but they sure are focused in theme: be grateful, trust God, look to God, this is what to do to be grateful, trust God, He's there, be grateful. As I read through them again tonight, it reminded me of the 'Annabeth I was' during that time. The side of me that was constantly searching for peace amidst the storm-tossed chaos of pediatric cancer. Never have I struggled so hard as I did then. I didn't struggle to find my testimony, or to find my faith; they were there. It was simply a struggle to live that life. It was a very hard life.

One of the cards has the lyrics on it from a song, "He Is." I haven't heard the song or read the lyrics for years....since Abigail was still fighting cancer. But when I read them again tonight, the tune came back easily, along with the remembrance of how often I repeated it. "He is, He was, He always will be; He lives, He Loves, He's always near me. Even when it feels like there is no one holding me, be still, my soul; He is." My favorite part of that chorus was the 'holding me' part. Sometimes in our struggles we feel so alone...so isolated. But deep in my heart I knew then, and sang it fervently, that even when it felt like there was no one holding me, He was.

I just needed to type out these feelings tonight. Heavenly Father, my loving, ever-mindful, perfect Father, pulled us through that dark time. And it turned out just the way it should. Yep. A separated daughter and mother. Not what the world would say is the right way, but I know it is. I know it is, because I trust God. With life, with death, and with everything in between.

That makes everything a whole lot clearer. Trust brings peace, because I don't have to know the details. The whys or hows. I am flooded with gratitude as I look at these cards and realize--now that I'm in a different dimension in life--how trusting Him then, kept me alive. I cannot see the end or the beginning; He can. Why wouldn't I trust that?! I just am so grateful, so deeply grateful, to Him.

Faith. Always, always, always, Faith.

"I will not fail thee, nor forsake thee"...not 2 years later, nor ever.

I have been at conflict with myself on whether or not to post. I don't feel like I have anything to say. I don't have the energy to try to describe emotions of happiness or sadness or what we've learned and are still learning.

Two years. My little missionary who was called to serve at such a young age....still serving at 24 months. But of course time is of this world, not of hers.

One of the reasons I'm hesitant to post about today is because of how agonizing and anguishing today, and the days leading up to it, was. How much INSANE amounts of morphine she was going through to try to keep her pain under control, and still she would cry out if I moved my legs or body under her. "The messicine isn't working, mommy." One of the few coherent sentences I could understand. So we moved to dilaudid. Within 24 hours she had had over 300 mg. For those who've used that drug, you know that's a lot. An hourly dose of 10 mg with 5 mg boluses allowed every 10 minutes on her Patient Controlled Pump. And she used them.

And then the nurse telling you that with that much drug in her system, it was going to start causing muscle spasms and contractions. There were many, many, many difficult things we watched Abigail go through in her life, but this ranked high up there. To hold her as her neck muscles would strain and tighten and because she had not eaten much for almost 3 weeks and didn't have any fat stores, you could see her bones and tendons as her muscles would stretch and spasm and jerk. Her whole body did this. It was absolutely horrid. The nurse on duty in our home was in the process of requesting another drug; meanwhile they put on another patch to try to help relax her uncontrollable muscles. It didn't help much. And a new drug didn't matter; I think it arrived an hour before or after her death. Maybe it never arrived; I can't remember.

One of the last physical things I did for her while she was alive, no, I guess technically she was dead, was to have to reach up and close her eyes for her. These are only a couple of multiple things we experienced on this day 2 years ago. I can't write them all. Her death was not peaceful. The Spirit was in our home, and with us in full force, but her death wasn't pretty.

I learned on a deeper level than I already knew that Christ's Atonement goes beyond any pain we will ever experience. Even when it gets harder, and harder, and harder still. Even when you don't understand why someone so innocent had to suffer so much. His ways are not our ways, and His ways are certainly higher than our ways.

Three months later we had the blessing of attending General Conference, a biannual conference in which the Prophet for our day and age speaks, along with the Quorum of the Twelve Apostles and other church leaders. I sat and listened to President Monson as he told us that his wife had died 5 months earlier and how much pain that caused. If the prophet of God, who certainly has a clear understanding of God's purpose and plan for life and eternity, felt pain and publicly acknowledged it, then of course it was right and proper for me to feel pain. I didn't need permission to mourn, but it was a validation that I was "doing it right." His talk will always remain one of the "classics" that I refer to repeatedly.

Our Heavenly Father, who gives us so much to delight in, also knows that we learn and grow and become stronger as we face and survive the trials through which we must pass. We know that there are times when we will experience heartbreaking sorrow, when we will grieve, and when we may be tested to our limits. However, such difficulties allow us to change for the better, to rebuild our lives in the way our Heavenly Father teaches us, and to become something different from what we were—better than we were, more understanding than we were, more empathetic than we were, with stronger testimonies than we had before.

This should be our purpose—to persevere and endure, yes, but also to become more spiritually refined as we make our way through sunshine and sorrow. Were it not for challenges to overcome and problems to solve, we would remain much as we are, with little or no progress toward our goal of eternal life. The poet expressed much the same thought in these words:

Good timber does not grow with ease,

The stronger wind, the stronger trees.

The further sky, the greater length.

The more the storm, the more the strength.

By sun and cold, by rain and snow,

In trees and men good timbers grow.⁸

Only the Master knows the depths of our trials, our pain, and our suffering. He alone offers us eternal peace in times of adversity. He alone touches our tortured souls with His comforting words:

 “Come unto me, all ye that labour and are heavy laden, and I will give you rest.

“Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.

“For my yoke is easy, and my burden is light.”⁹

Whether it is the best of times or the worst of times, He is with us. He has promised that this will never change.

How I love our prophet! If you feel so inclined to do or say something for me today, what I would choose and ask of you is to read his talk {here}. No matter your age, religion, or choices in life, I believe you will be inspired by it.

My children have memorized the above poem. What a powerful reminder that adversity, if you choose, can strengthen you. It can also break you. Difficult experiences can be either faith-building
or faith-breaking. How deeply our Father in Heaven wants us to turn to him at all times, and especially hard times.

Two years. How incredibly we miss her. How we long to hear her voice, or dream of her. But these aren't in our control. Heavenly Father is in control. If He wanted her Home, then we want her Home. It is surely a purifying process to live without her.

And although it was one of the worst days of my mortality, I know it was a beautiful day for her. Her Heavenly Birthday. That brings peace. As I think about it, it was probably one of the more glorious days of her eternity. Mortal birth and being sealed to our family through covenants would be another. She kept her second estate 1 and someday will receive thrones, principalities, kingdoms, and more. 2

Happy Heavenly Birthday, Abigail. We love you and are so glad you will keep us forever.

As always,

FAITH.

June 24th

I didn't try to remember this day. It just popped in my head last night as I prayed. Some memories are just burned so deeply that they appear without any effort.

June 24th, two years ago, was the day I stopped trying to keep my little girl alive. It was the day she had an emergency scan done to see what was happening inside. She was scheduled for an MRI, but her vital stats kept crashing so the anesthesiologist and radiologist called the oncologist and got permission to do a CT scan instead. A 15 minute scan instead of 60.

It was the day we officially started hospice, although it had been discussed before and the process had slowly begun. Twenty-two incredibly-lengthy days of watching her die, after her six months of prolonged deterioration after her two year battle.

June 24th was the day my already shattered heart clung tightly to the Lord's promise that He would bind up the broken-hearted.

There is an acronym I came across frequently in the cancer world: NEGU. Never, ever give up. I never really liked that statement. Not saying it's wrong, it just wasn't for me or us. We never gave up on Abigail, because we never gave up on the Heavenly Father. But there came a time, June 24th to be exact, where we had to choose to stop doing something and instead start doing something else. That is not giving up.

On June 24th, I stopped looking at the 2 page chart that listed the 40-50 supplements, pills, and drops that I gave Abigail daily. Her regimen simplified really, really fast. Pain medication and stool softener. Setting her chart aside and abruptly realizing "I'm not trying to keep her alive anymore" would have killed me if not for the support, peace, and strength God himself was providing us.

 Instead, on June 24th, we started the last part of her mortal journey with acceptance. I have pictures during those 22 forever days, and I'm smiling in them. When I first looked at them, a couple weeks after her death, I was appalled that I was smiling. It hurt so badly that I was smiling. I didn't understand. And then He gave me understanding. I was smiling because I was at peace and because Abigail needed me to smile. I would do anything for her, and that was the last thing she needed from me. Ironic that it's probably the same thing she still wants from me. And here I sit crying while I remember June 24th.

June 24

June 25

 

June 28

There are many absolutely agonizing decisions to be made when you fight for your child's life. The decision to let them die ranks up there in pain. Actually, the decision to let her die was easy---her body desperately needed to die. But the physical separation we knew would happen…that was the killer. Is it really time to start saying goodbye? Aiyaiyai. And it couldn't happen that she was spared more pain once that decision was made. I don't know in detail what cancer molecullarly does inside the body, but whatever it does, it is painful. I was hurt time and time again each time Abigail's strong--very strong--pain medication wasn't covering her pain. Every day was a day my faith in God was tested and purified. What an unwelcome finale to an unwanted journey.

June 30th; To help prepare the children, Aaron took them to see the casket Grandpa had made for Abigail.

I remember writing in Abigail's Carepage many comments such as "Thank you all so much for your prayers; they are sustaining us." Combined faith truly does bless lives. To this day I still cannot express my gratitude with adequate words for the love, prayers, fasting, and faith that was given on our behalf. I remember Elder Bednar's comment "Do you have the faith to not be healed?" Yes, faith. No wonder that it is one of the first principles of the gospel. 

Faith, for whatever comes.

Faith.