Tag

patience

coping

By | Daily Life, Round 2, Uncategorized | 3 Comments

On February 1st, two days after Ashtyn was hospitalized, I received a message from Brady, whose daughter Millie was on the same floor.

“Suzanne,
I’m very sorry to hear about Ashtyn. While I’m no expert, we’ve been dealing with this now for over three years, so I can give some advice on how to deal with it as a parent.

Millie was only four when she was diagnosed, so she was much younger than your daughter, but I still believe this holds true. Our children don’t fully understand what they’re facing. They gauge how bad the situation is by how we react. If we cry all day and are depressed, they will be frightened. If we are calm, confident, and tackle this task like it’s normal, they will feel the same way.

That’s not to say that I’m never sad – Millie and I have cried together many times. However, we are happy nearly all of the time. On a particularly tough day a few weeks ago, Millie and I talked about it, and she agreed with my feelings that although cancer has been the worst thing that has ever happened to our family, it has also been the best. We’ve gone to Disney World with Make-A-Wish, met Justin Bieber, Swoop (the mascot from the U) visits her all the time, and thousands of people have sent her mail/emails. I can’t tell you how many wonderful things have been done for us by friends, family, neighbors, and total strangers.

When I told Millie about your daughter she said ‘Dad, I really wish she didn’t get cancer. Please tell her that even though it’s really bad, a lot of good things happen, so she shouldn’t be too sad.’ Be prepared to be amazed by your daughter’s strength, your own strength, and by how many people love you.”

At the time I got this message I was being bombarded with information. I was completely sensory overloaded and wasn’t able to take to heart what he wrote. Now that I look back at his message I understand with clarity how he felt. I could now write the same letter to someone else with complete honesty and say the exact same things. Children feel and react how their parent’s feel and react. I have observed this with my own children from the time they were born. It continues to be true when dealing with Ashtyn. From the beginning, in my mind, we were not going to shrink while facing cancer. We were not going to lose ourselves. We were not going to soak in sorrow or throw a pity party. No way! I knew Ashtyn was capable. I knew God was fully aware and had a plan for her. As Elder Bednar put it, “Many of the lessons we are to learn in mortality can only be received through the things we experience and sometimes suffer. And God expects and trusts us to face temporary mortal adversity with His help so we can learn what we need to learn and ultimately become what we are to become in eternity.” We were to be strong, confident, and optimistic. Faith and a positive attitude has been empowering.

Today when I read, “she agreed with my feelings that although cancer has been the worst thing that has ever happened to our family, it has also been the best,” I knew Brady was being sincere. In the short time Ashtyn has had cancer, it has been the worst thing that has ever happened to our family, however it has also brought the greatest blessings. We have experienced wonderful things done by friends, family, neighbors, and total strangers. We have experienced feelings of the Spirit, angels, and God being very near. Ashtyn has already experienced what Millie has observed in her own life. “Please tell her that even though it’s really bad, a lot of good things happen.”

It is difficult for some to understand how Ashtyn and I can find joy in this experience. Others have been shocked that we don’t feel anger. There are those that wonder why we aren’t being more “real” with feeling sorrow and doubt. The reality is, our hearts are full of peace and comfort. Our positive vision for the future fills our minds. Our knowledge of God’s presence in our lives fills our souls.

Ashtyn_CopingThe last several days have gone by pretty smoothly for Ashtyn. Her days have been spent eating, sleeping, watching TV, doing physical therapy, and talking to staff and visitors. Physically she has felt well though her body is weak and tires easily. Emotionally she is doing well though she wants to go home and is not even able to leave her room. I know each day can change in an instant. Today she woke up at 9:30 am, the earliest since being in the hospital. She was awake and alert all day feeling good. By 9 pm she started to not feel well. She was nauseated and felt bloated. She informed me, “I just don’t feel right. I am going to rest for a bit.” With that said, she put on the “LDS Hymns” station on Pandora and closed her eyes. As I watched her I sensed how crummy she felt. I was so proud of her ability to cope without complaining as she focused on the words of the music. With her eyes closed, her lips moved along to the words of the song, “Jesus Once of Humble Birth.” Her fingers played along to the piano of “Kiss the Rain” by Yiruma.

The words of Brady ring true and bring a tremendous amount of joy and gratitude. “Be prepared to be amazed by your daughter’s strength, your own strength, and by how many people love you.”

Patience will Pay Off

By | Daily Life, Prayers, Trials, Uncategorized | 10 Comments

Saturday and Sunday many people prayed and fasted for Ashtyn.  We prayed for her specific needs that her rash would go away, her throat would feel better, and her total white blood cell count (WBC) and absolute neutraphil count (ANC) would go up.

Sunday night Ashtyn wanted me to sleep in her bed with her.  “It makes me know you are by me and makes me less scared.  I’ve just had too much of this and I’m anxious to get home.”  Because our schedule is backwards right now, we finally fell asleep at 5:30 a.m.  By 8 am the hospital woke up, medical staff started coming into her room to do what they needed to do, and her IV pumps seemed to alarm regularly.  In addition, Ashtyn wanted me to rub her back and arms constantly to help with the itchy rash so she could sleep better.  By 10 am I was exhausted and frustrated.  With irritation I wondered, “after all the prayers and fasting, Ashtyn’s WBC count is still 200?  Her ANC is still zero?  She had a couple of nose bleeds and needs another platelet transfusion?  Her rash still looks awful and it’s now itchy? Her throat still hurts and ‘swallowing a pill feels like swallowing a big piece of steak without chewing it’?  Her legs are weaker when she walks?  There is still no sign of going home?”

How easy it was to have negativity seep in.  After 32 days I was ready for Ashtyn to feel better.  She had been faithful and deserved to go home.  With how tired I was and the situation that was before me, I could see how easy it could be to become bitter at God and lose faith.  Then a scripture came to my mind.

3 Nephi 14:9-11  “What man is there of you, who, if his son ask bread, will give him a stone? or if he ask a fish, will he give him a serpent? If ye then, being evil, know how to give good gifts unto your children, how much more shall your Father who is in heaven give good things to them that ask him?”

I love Ashtyn but God loves her more.  I want Ashtyn happy, but God’s desire for her to be happy is more.  I knew I was exhausted so with that thought I went back to sleep and slept off and on until 3 pm.

When I woke up Monday afternoon I felt much better.  All negative or bitter feelings were gone.  The word that came to my mind was “patience.”  I’ve never realized how much patience is connected to faith.  Be patient.  I can do that.  However Ashtyn was still struggling.  She was more tearful throughout the day than she ever has been.  Tearful for fear of the hospital.  Tearful because of her frustration with her body.  Tearful feeling that it wasn’t fair.  She was so sick of being in the hospital.

Again Monday night we didn’t fall asleep until around 3 am.  Our sleep is never solid but today I woke up for good at 2 pm.  Ashtyn woke up at 4 pm.  I know!!!  Our schedule is so messed up!  But we had a great positive day.  Nothing has changed.  Her WBC’s are still low.  Her ANC is still zero.  Her rash still doesn’t look good.   Her throat and mouth still hurt.  However we feel good.  She told me she is feeling more patient today.  I am not kidding!  Isn’t that amazing?  Yesterday we were both tempted to get angry that our prayers and fasting weren’t answered immediately.  We both were tempted to get bitter at God wondering why He would want her to suffer another day.  We both could have lost faith and given up.  But we didn’t.  Instead we allowed ourselves to be a bit disappointed yesterday but with faith knew God would answer everyone’s fasting and prayers and provide miracles when the time is right.

“Patience is tied very closely to faith in our Heavenly Father.  Actually, when we are unduly impatient, we are suggesting that we know what is best—better than does God. Or, at least, we are asserting that our timetable is better than His.  We can grow in faith only if we are willing to wait patiently for God’s purposes and patterns to unfold in our lives, on His timetable.” Neal A. Maxwell

“Patience is not indifference. Actually, it means caring very much but being willing, nevertheless, to submit to the Lord and to what the scriptures call the “process of time.” Neal A. Maxwell

A few weeks ago Ashtyn’s health was declining and she was almost admitted to the PICU a second time.  We asked for everyone to pray and fast that her health would improve.  After the prayers and fasting, I saw an immediate improvement.  Within a day she went from not talking to talking.  Not opening her eyes to opening her eyes, as I explained in the post, “This Kind Can Come Forth by Nothing, But by Prayer and Fasting.”  This past Sunday, after fasting and prayers, and even with your continual prayers thereafter, Ashtyn has not noticeably improved.  At first frustration was felt.  However, now I am so grateful for the lesson that Ashtyn and I are learning about patience.  I know she will need to use the skill of patience during this entire cancer process.  The first petition for fasting and prayers a few weeks ago brought an immediate miracle.  This second petition I have no doubt will bring another miracle in the timing that is right for Ashtyn.  I am excited that we get to watch as God’s plan unfolds and recognize with awe how merciful He really is in blessing us in His timing, not ours.

“Patience is a willingness, in a sense, to watch the unfolding purposes of God with a sense of wonder and awe, rather than pacing up and down within the cell of our circumstance. Put another way, too much anxious opening of the oven door and the cake falls instead of rising.” Neal A. Maxwell

Ashtyn’s Army, during this cancer battle I know your prayers are heard and will always be answered.  Sometimes the answer will be “yes.”  Sometimes the answer will be “no.”  Other times the answer will be “yes, but not right now.”  Whether the prayers are answered quickly or slowly, it matters not to me.  I know prayers will be answered according to what is best for Ashtyn.

Ashtyn and I are excited for her white blood cells to go up.  We are anxious to get home.  We will continue on with patience, being grateful for the blessings we do have.  I am grateful to be able to spend time with Ashtyn.  I am grateful I get to hold her in my arms.  I am grateful for her returned hugs.  I am grateful to be able to feel the Spirit in her room daily.  She is truly a delight to be with.

Ashtyn:  “I’m grateful that I am a little bit more sleepy and might be able to sleep better tonight.  I am grateful that you don’t have to work and can be here with me.  I am grateful for hats.  I am grateful that Chandler is my bone marrow transplant donor.  I am grateful for my siblings, dad, and extended family.  I am grateful for the time I get to be home.  I am grateful for everyone that is supporting me.  I am grateful for God because he can help me be more positive.”

Patience makes faith stronger.  We now have a new word to add to the way we are going to face this cancer trial.  We will face it with faith, trust, hope, optimism, and now patience.