I am a Child of God

About a month ago the oldest daughter informed me that Shad was going to be singing a solo in their ward's primary sacrament meeting program.  As the dutifully doting grandmother that I am, I was determined that I would be there to hear him perform, and put a red star next to September 22nd in my calendar book.

Well, fast forward to today and there I was, sitting in the Hillsdale ward watching the primary children share their testimonies in word and song, but without Shad.

I offered to stay at the hospital so the oldest daughter and the son-in-law could attend church today, but they decided it would be too sad.  I wondered if I wanted to go, since I was pretty sure it would be too sad too, but my desire to go to church won out.  Since our ward's primary program was today as well, I knew if I didn't attend here I wouldn't get my yearly primary program fix, so I loaded up on the tissues and arrived early enough to find an inconspicuous spot in the back of the chapel.

Apparently last week the primary president announced to all the children that Shad wouldn't be able to sing in the program because he was going to be in the hospital.  They were all very sad.  Then the primary president announced that they would need a replacement soloist and they were no longer sad, but jumping up and down with their hands in the air shouting "Me! Me! Me!"

You've just gotta love kids!

Then the primary president had the difficult job of choosing just one of the many hopeful children to take Shad's place. A little girl, who the oldest daughter described as "very shy", was finally selected and today she performed her little heart out, possibly better than the grandson would have managed when he was actually faced with a chapel full of people, unlike the empty chapel he sang to during practices.

I guess we'll never know.

I barely shed a tear during the song, but when the bishop got up as a substitute, to recite Shad's speaking part, I will admit I cried quite a few.  This is what the bishop said (prefixed by "I am substituting for Shadrach Smith who, as many of you know, is in the hospital today having chemotherapy"),

"Just like we have a physical body that can get sick, we have a spirit that can get sick too. Jesus Christ chose to suffer in the Garden of Gethsemane and then to die on the cross so that we would be able to repent and return to Heaven."

This paragraph came from a talk that Shad gave earlier in the year in primary sharing time, one that I helped his mom write, and one that has deep significance to me. Physical disease and spiritual disease - two topics that I have given a lot of thought to over the past year. In fact, I have spent countless hours pondering them both and wondering if one is better or worse than the other. I have found that both physical death and spiritual death are horribly painful ideas to contemplate, especially where those I deeply love are concerned. Over the course of the year I have solidified many beliefs on these topics and raised even more questions in my mind and heart, but that is definitely fuel for another blog post.

Back to this post - at first I thought that it was somewhat random that the bishop was chosen to read Shad's "talk", but after thinking about it for awhile I decided that it was definitely an inspired choice.  Who better to share the message of spiritual sickness and the antidote for this disease than the Master Physician's designated representative, the bishop of the ward. One of the bishop's most important roles is to assist the spiritually sick in repenting and using the gift of the atonement to become well again.

The primary children did a great job sharing their thoughts and feelings about the topic "I am a Child of God" and I was glad that I chose to attend. It was worth any sad that I felt.

I do not know why Shad is sick.  I do not know why he had to be in the hospital today instead of in church performing with all his primary friends, where we would have all preferred him to be.  There are a lot of things I don't know and I am daily reminded of that fact, but there are a lot of things I do know and today and every day I will try to focus on what I do know.

I do know that last November we accepted the possibility that Shad would never really get to attend primary as a Sunbeam, that he would be too sick to go to church while he was 3.  However, he was blessed beyond our expectations.  He was in church more Sundays than he missed and every time he was there he walked with his class to and from sharing time and sat in a little chair (or chose not to sit in his chair and stood up or rolled on the floor) and colored pictures and listened to lessons and sang songs and gave talks and scriptures and prayers and learned about being a Child of  God.  He was a Sunbeam in every sense of the word, much more so than we could have imagined, and we have been blessed.

I do know that Shad didn't have to sing in sacrament meeting today or recite his memorized talk to be remembered by many of the members of the Hillsdale ward. His smile and his bravery and his sweet spirit have touched many lives and made a lasting impression. Perhaps his absence will have more impact in the life of some struggling soul than his presence would have had.

We may never know.

I do know that disease is devastating, both physical disease and spiritual disease. But I also know that through the atonement of Jesus Christ we have the ability to overcome both and live with Him and our Heavenly Father again. What a wonderful message that has become emblazoned on my heart during this past year.

I do know that each one of us is a beloved Child of God. He loves his children - those who are physically sick and those who are spiritually sick and those who are trying to be like Him.  He loves each one of us, with a never-ending love that we cannot even begin to imagine. He wants us to come back to Him.

And I do know that if Shad had sung his song in sacrament meeting I would have loved every minute of it, but I wouldn't have recorded it and been able to enjoy it again and again.  I hope you enjoy it too.

Today I am thankful for

a primary teacher and a presidency member who made the trip to the hospital to bring Shad a card from his primary friends and an "I am a Child of God button" for him to proudly wear.

primary music.  I love the spirit it brings.

children.

crockpots, so dinner could cook right in the hospital room.  We really should do that more often.

Patience

Today I found myself back sitting in a hospital room waiting with Shad to start his 3rd round of chemo.

He and his parents arrived at the hospital this morning around 9:45, about the same time the youngest daughter and I drove out of the driveway to head to California.  They were pretty sure that they would actually get to stay this time, after being sent home on Monday and Wednesday because his counts were too low to start the Chemotherapy.

Shad was given the thumbs up and they were taken to a room around lunch time, right around when the youngest daughter and I were waiting in the longest, slowest line at the Wendy's in Yuma to purchase our value items from the value menu.

When the youngest daughter and I arrived at the hospital around 5:30, after a stop at the oldest daughter's house to unload and unpack for a little while, Shad was still receiving his pre-chemo hydration and was scheduled to start chemo around 7:00.

Shad was put into one of the smaller rooms in the ward today, because all the other rooms were full.

This  room has two doors.  The first enters into a small room with a sink, trash, supplies ... and then the second door opens into his actual room.

Every time the nurse would come into the outer area Shad would look up and excitedly exclaim, "Chemo time!"  Then the nurse would come in and he would questioningly ask, "Chemo time?"  and the nurse would say, "Not yet. This is just to get you ready for chemo or I just need to check your pee pee or I need to see why your machine is beeping..." and he would say, "Oh, OK."  (This happened EVERY time someone came into the room.  I lost count around 15.)

During one of these visits the nurse reported that there was a little blood showing up in Shad's urine and they were going to send a sample to the lab.  This is pretty normal since he has the catheter tube, but protocol says it needs to be checked out and run past the oncologist before the chemo can start since one of the medications can cause bleeding.  She let us know this might slow down the start of chemo.

Shad's dinner arrived and we spent some time getting him to eat and some more time listening to him explain all the reasons why he shouldn't eat any more and a little time all sampling the food he chose not to eat.

Then we spent some time discussing what WE should eat.  The son-in-law's vote is always for Mexican food, but the oldest daughter was not in the Mexican mood.  We aren't the best decision makers and so we finally decided to try to come up with a genre (the school teacher's word) of food that sounded like what we wanted. Immediately the son-in-law chose Spanish.  Shad, who had been entertaining himself with his i-pad and seemed to be ignoring our discussion until then, piped up "That's Mexican food" and the girls in the room all laughed and thanked him for watching out for us so his dad didn't trick us.

We finally decided on pizza and wings and eventually agreed on where to get it from, what kind we wanted, how to order it, who was going to go get it, and which car was going to be driven.  The two daughter's left to get the pizza,  the son-in-law returned his attention to the football game and I enjoyed having Shad show me all the new things that have been added to his i-pad since my last visit.

His mom found a Disneyland app that takes you on a little tour of all the attractions.

You can click on the various places and play a short game or experience part of the ride...

Wow! Woody is really moving on Big Thunder Mountain Railroad.

 It is fun, but made Shad wonder when he was going to Disneyland again.  He was content with the answer, "When you aren't sick anymore."

Shad has lots of movies on his i-pad.  He likes to watch them, applying the skip button liberally, and it seems that at the moment his favorite part of any movie is the closing credits.  He can watch those over and over again and either hums the musical score or sings along if there are words.  Wall-E is his current favorite.  "We're Going Down...".

Shad also has some doctor/hospital related videos that he enjoyed sharing with me tonight.  One of them, a music video, shows a little girl who is sick hanging out in her room while her friends are playing outside her window.  I don't know what the song is called, but the refrain that plays numerous times, accompanied by a catchy little tune, says "You've got to be patient to be a patient."

I enjoyed my i-pad/grandson entertainment and then I enjoyed my pizza.  The nurse came in and said she had talked to the oncologist and he wasn't worried about the urine culture and that she could go ahead with chemo, so she started the pre-chemo meds and told us the night nurse would be in in a while to begin the chemo.

We were left to our own devices for some time, our electronic devices that is.

Shad on his i-pad, the girls playing Skip-bo together on their phones, the son-in-law watching the TV and me with my camera.  Then the night nurse arrived with the message that she just had to double check the chemo bags and she would be in to start.  "Yeah! Chemo!".  The first round of chemo in the 5 day series lasts for about 4 hours so we were happy that it would be starting soon, around 8:00, so it could be finished at a somewhat reasonable hour.

About 15 minutes later the nurse returned, a little flustered, with the unfortunate news that one of the chemo bags had leaked all over inside its Ziploc and that it would need to be replaced with a new bag.  However, the pharmacy was closed for the night so they were going to have to call a pharmacist to come back to the hospital to make it.  She wasn't sure how long this was going to take, but she needed to stop the pre-meds and put Shad back on fluids again.

I felt bad for the nurse, who obviously was upset at the delay. As she worked on changing out all the bags, I had to smile as Shad's i-pad provided the background music, "You've got to be patient to be a patient", over and over again.  Apparently you also have to have patience to be a nurse, or a parent or a grandma too.  I think we are all going to learn to be a little more patient in 2013, whether we want to be or not.

Patience is a good trait to have though, so this is probably a positive thing.

Chemo finally started about 11:30 and ended in the wee hours of the morning.  It was a long night for Shad and the oldest daughter.

The rest of us were lucky enough to be home patiently sleeping.

I think the son-in-law was probably grateful for the small room, with only enough space for one pull out chair bed, tonight.

Today I am thankful for

one on one time with the youngest daughter while we drove to California.

a husband that stays home, works, and takes care of things while I go play with the grandson.

Shad's positive attitude about the hospital and chemo and everything that goes along with it. He is truly amazing.

The Long Way to Where We Want to Be

Yesterday the oldest daughter, the youngest son and I took an outing to IKEA where I needed to look for some picture frames for a church project.   Despite the rush hour congestion and about 10 necessary apologies of "Sorry, I'm from out of town" as I cut across 3 lanes of traffic numerous times, we arrived at the store safely.

When we returned to the car for the journey back to the hospital it was beginning to get dark and the traffic was still heavy.  The oldest daughter was pretty sure she knew how to get us back and so we started on our way.

We were following the road signs that directed us to get in a certain lane for the road we wanted, but when we actually got to where we met up with that road, we were not where we needed to be and we ended up going north instead of south.

Despite the son's insistence that we were lost, we weren't too worried.  We knew where we wanted to go and knew how to get there.  We would just travel north, take the next exit, turn back around and head south.

The next exit was quite a ways down the road.  Just as we started to exit we realized that we could only travel east on the road from this ramp.  To go west we should have stayed on the freeway a few more yards.

That was OK.  We would just turn around when we got a chance, head west and get back on the freeway headed south.  We could do this, it would add a couple of minutes to our trip, but we were still fine.

We found a place to turn around and were once again going the right way.  I moved into the left lane to get back on the freeway, feeling pretty good about how things were going, and sailed past the freeway entrance that someone decided should be on the right instead of the left.

Not a big deal.  We could just turn left, take the surface streets back to the "G-named street" and get on the freeway there and that's just what we did.

Once again we were headed in the right direction.  The son put on some calming music (it took a few tries, but we finally agreed on what was calming), the daughter passed me a Lindt chocolate,  I took a deep breath and down the road we went.

Now it was really dark and the traffic was still heavy.  I was a little nervous driving the unfamiliar road but the daughter knew where we were going and we were confident that we would get there,  a little later than expected, but most likely in one piece in spite of the youngest son's views on my driving skills.

A handful and a half of wrong turns, missed exits, one way streets, differing ideas and mis-interpreted road signs later we finally reached our destination.  Our pizza for dinner was cold, our nerves were a little frazzled, but we were where we wanted to be.

This long-winded story perfectly describes my thoughts and feelings about this cancer journey we are on at the moment.

There is a plan.

There is a time table.

We all know where we want to end up and have a pretty good idea how to get there.

However,  sometimes the road is dark, and unfamiliar and even a little scary.

The path is filled with contradictory voices, lots of back seat drivers, detours, one way streets, hard to remember street names and surprising turns.

Sometimes we feel like we are headed in the wrong direction and we probably are.

Some may even insist that all is lost,
but I have faith that eventually we will reach our destination safe and sound.

It just may take a little longer than we would like and I think I'm going to need a whole lot of chocolate.

Today I am thankful that

Shad was able to move from the PICU to the regular pediatric ward. This is a positive sign and a step toward going home, plus his room is a lot bigger and at least one parent gets an actual bed to sleep in.

a by-the-book doctor let her heart be soften by a cute smile and brought Shad a whole take out container full of pickles from the galley for his hospital hamburger.  Whoever thought serving zucchini that resembled pickles and a pickle-less hamburger for lunch today is not a nice person.

At first glance these may look like pickles, but they are NOT pickles!

You'll be happy to know that he ate a few bites of hamburger with all those pickles.  

today's ultra sound technician seemed to know what he was doing and managed to do his job with as little trauma as possible to the grandson.

the youngest son bought pizza for dinner.

Same Old, Same Old

Today while Shad's mom and dad were gone to church one of his doctors came to visit.

She talked (while Shad turned his back and totally ignored her), 

poked and prodded, 

and then told Shad, "tell your mom and dad 'same old, same old'  when they come back."  

Same old, same old is usually considered a little boring and undesirable, but I was happy with our same old, same old day.

No new challenges.

No new complications.

No new diagnoses.

No new traumas.

A lot of juice and milk drinking.

A lot of ipad movies and games.

A lot of temperature taking, arm hugging and pee pee emptying.

A lot of people in a small room trying not to drive each other crazy.

Familiar nurses.

Familiar surroundings.

Familiar crying each time an IV bag is switched out.

Familiar path to and from the hospital.

Same old, same old.  

I'll take it!

Today I am thankful for

the son-in-law.  I don't know very many guys that get excited about hanging out with the in-laws all day every day, but the son-in-law is very patient with our quirky family and puts up with a lot.  Yesterday he announced, "I think we could live on a space ship."  While rather random, I was happy to know that he felt he could live in a confined space with us and survive.  He is a great dad, a wonderful husband, a worthy priesthood holder and I appreciate all he does for my daughter and grandson.  He is amazing.

Shad's sweet little voice singing while we read "Pete the Cat - I Love My White Shoes".  Remember it's ALL GOOD!

E-mails, blog comments, texts, phone calls and prayers from friends and family.  They brighten my day so much.

A Singing Get Well Card

Today Shad got a get well card from my sister.  This sister is really good at sending awesome cards and  her birthday card for Shad's 2nd birthday was a hit as you can see in this photo.

The card sang the Woody song - "You've got a friend in me" and it sang it's heart out until it died. Since his first singing card made such an obvious impression, he has received a few more cards that sing.

Shad opened the get well card today and let his uncle read part of it to him, but then he needed to hold it in his hand and refused to let anyone else hold it, look at it, or finish reading it.  As he examined it for a while, all of the sudden he announced, "Hey, it doesn't sing!"  He opened it and closed it and opened it and closed it and then looked at me with disappointment.

Well what Grandma can let her sick grandson be disappointed?  As he slowly opened it one more time I sang a truly inspiring, rousing and creative "Get well, little buddy, get well."

He closed it and opened it again, "Get well, little buddy, get well.  Get well, little buddy, get well. Get well." and closed it.

This continued for a while with a variety of renditions of the same words.  Our favorite being the staccato, one syllable at a time, version as he quickly opened and closed the card repeatedly.

Some of my family members may think I have been held hostage in a hospital room for too long and lost what good sense I still had, but I say if I can get a belly laugh and spontaneous giggles, I'll gladly embarrass myself again and again.

That get well card worked wonders and I definitely felt better.

Today I am thankful

that Shad was the only patient in the PICU.  Not only does he get lots of personal attention from the nurses, but that means that there isn't another mother or grandmother sitting next door with her heart in her throat worrying what the day will bring.

for all the people in our lives who think of ways to brighten our days.

that the son-in-law and oldest daughter were able to get out and go shopping for a little while today and that they let the youngest son tag along.  We had a quiet, peaceful afternoon in our cozy little room and I think they enjoyed the outing.