Tag Archives: the Church of Jesus Christ of Latter Day Saints

Waiting on the Lord

I have never done this and likely won’t do it again anytime soon. But.. this past Sunday Brian and I spoke in church for Mother’s Day. And, as we’re moving soon, was our last opportunity to speak to the congregation we’ve been attending. (I’ll tell you about the move in a post I’m just about to write.)

Back to why I’m sharing a talk in my blog.. Last November or so I found myself wide awake in the middle of the night with this talk in my head.  And I had a very clear new interpretation of the parable of the ten virgins that unfolded itself in my mind. I’ve never experienced that before. I doubt I will again.

So – this being the last opportunity to speak, I took some extra time to sit down and study out the thoughts I had that night. I was kind of blown away by what unfolded. And it happened to be just perfect for Mother’s Day, too. The result is the talk that follows. I’m including lots of reference links because there was so much more I could have shared if time had allowed.


The parable

Many of your will recognize the parable of the ten virgins. (Matthew 25)

1 Then shall the kingdom of heaven be likened unto ten virgins, which took their lamps, and went forth to meet the bridegroom.

2 And five of them were wise, and five were foolish.

3 They that were foolish took their lamps, and took no oil with them:

4 But the wise took oil in their vessels with their lamps.

It is a custom among the Jews for the bridegroom to come at night to the bride’s house, where her bridesmaids attended her. When the bridegroom’s approach was announced, the maidens went out with lamps to light his way to the house. The weddings usually began in the evening, with the lamps lit at dusk.

https://www.lds.org/ensign/2009/03/the-parable-of-the-ten-virgins?lang=eng

Now, it is of note that each of the virgins came to the wedding with a lamp and with oil. These lamps typically were fueled by olive oil which was inexpensive and readily available. Each came thinking she was prepared. But this parable tells us that, on this occasion,  “The bridegroom tarried.”. Contrary to tradition, he came late. At midnight. (Matthew 25:5-6) When the call finally came, some of the bridesmaids found that because of the late hour, their oil was spent (Matthew 25:8) .
(About oil lamps and fuel: https://en.wikipedia.org/wiki/Oil_lamp )

What was the difference between the wise and foolish virgins? The foolish virgins brought only the oil in their lamps. While the wise each brought a vessel with other oil. In other words, they came prepared for a wait.

The words of Isaiah could be applied to the wise virgins. “They shall not be ashamed that wait for me.” (Isaiah 49:23).

I want to talk with you about the principle of “waiting on the Lord”.  I hope to answer a few questions: Why is waiting a part of Heavenly Father’s plan? How is “waiting on the Lord” different from just waiting? How can we prepare ourselves to wait on the Lord? And what promises are given to those who wait on Him?

Robert D. Hales taught:

The purpose of our life on earth is to grow, develop, and be strengthened through our own experiences. How do we do this? The scriptures give us an answer in one simple phrase: we “wait upon the Lord” https://www.lds.org/general-conference/2011/10/waiting-upon-the-lord-thy-will-be-done?lang=eng


When we moved into this ward, we were newlyweds. Brian had just graduated from college and started his career. And we were trying to have a baby.

Now you didn’t know that. We’d been trying for a couple of years, had started to work with doctors. It was just long enough that my feelings about it were pretty raw and I wasn’t ready to tell anyone about the struggle. But I was acutely aware of not yet having any children.

That trial was one of the hardest of my life. I became a bit obsessed with studying the relationship between faith and hope. Convinced that if I had more faith or more hope, that infertility would be easier.  I especially loved Hebrews chapter 11 which cites many examples of miracles wrought by faith. I clung to verse 11 which reads:

Through faith also Sara herself received strength to conceive seed, and was delivered of a child when she was past age, because she judged him faithful who had promised.

(I wondered at verse 39. “And these all, having obtained a good report through faith, received not the promise”)

I think the hardest part of that waiting for me was not understanding. I often wondered if the reason I still wasn’t a mother was that I was somehow lacking, unworthy, forgotten or rejected. I struggled with my first question often.

Why is waiting a part of Heavenly Father’s plan?

Waiting plays an important role in our growth in mortality. Most, if not all of us, will have reason at some time or in some way to wait on the Lord. Lehi’s family waited for the promised land. Noah waited for the rain to stop. The early pioneers waited to find Zion.

You likely find yourselves waiting, too. Maybe you’re waiting for motherhood like I was. Or for marriage. Maybe you’re waiting for a loved one to return to the gospel. Or for conflict in your marriage to resolve. Maybe you are waiting to endure a semester, or a difficult assignment, or potty training. Maybe you are waiting for healing or waiting through grief. Maybe you are waiting for direction on a difficult question. Or maybe you are just waiting, trying the best you can to endure to the end.

It is easy in periods of waiting to question why a loving Heavenly Father would seem to stay his hand, especially for those who righteously follow him.

President Dieter F Uchtdorf gave one answer:

I think God knows something we don’t—things that are beyond our capacity to comprehend! Our Father in Heaven is an eternal being whose experience, wisdom, and intelligence are infinitely greater than ours.Not only that, but He is also eternally loving, compassionate, and focused on one blessed goal: to bring to pass our immortality and eternal life.

https://www.lds.org/general-conference/2014/10/living-the-gospel-joyful?lang=eng

Keeping in mind our Heavenly Father’s great love, consider another answer from Elder Robert D. Hales:

In my life I have learned that sometimes I do not receive an answer to a prayer because the Lord knows I am not ready. When He does answer, it is often “here a little and there a little” because that is all that I can bear or all I am willing to do.

https://www.lds.org/general-conference/2011/10/waiting-upon-the-lord-thy-will-be-done?lang=eng (Please note I hesitate to include this quote as I don’t want to imply that not being ready is equivalent to not being worthy. Those are different things entirely.)

And don’t forget the answer given to Joseph Smith when his suffering and the suffering of the early Saints led him to proclaim “O God, where art thou?” To him, the Lord said:

My son, peace be unto thy soul; thine  adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high; (D&C 121:7-8)

All these things shall give thee experience, and shall be for thy good (D&C 122:7)

How is waiting on the Lord different from just waiting?

Robert D. Hales:

What does it mean to wait upon the Lord? In the scriptures, the word wait means to hope, to anticipate, and to trust.

https://www.lds.org/general-conference/2011/10/waiting-upon-the-lord-thy-will-be-done?lang=eng

It may sound contradictory to say, but unlike passive waiting, waiting on the Lord is defined by action. While the process is helped by attributes such as faith, patience, humility, meekness, and long-suffering, waiting on the Lord is a form of doing. It is trusting, seeking, obeying, praying, planting, nurturing, submitting, enduring. (see https://speeches.byu.edu/talks/henry-b-eyring_waiting-upon-lord/)

As you can tell, waiting upon the Lord is a skill to be developed. One developed through practice. To that end, the apostle Paul wrote:

But we glory in tribulations also: knowing that tribulation worketh patience;
And patience, experience; and experience, hope (Romans 5:3)

Waiting on the Lord is being ready to act the moment we are called. It is doing as directed  in D&C 33:17:

17 Wherefore, be faithful, praying always, having your lamps trimmed and burning, and oil with you, that you may be ready at the coming of the Bridegroom

How can we prepare ourselves to wait on the Lord?

It is apparent from from the parable of the ten virgins that it is possible to come prepared for waiting. We do this by metaphorically filling and carrying extra vessels of oil.

Consider this counsel given by our prophet, Russell M. Nelson, in our last general conference:

To be sure, there may be times when you feel as though the heavens are closed. But I promise that as you continue to be obedient, expressing gratitude for every blessing the Lord gives you, and as you patiently honor the Lord’s timetable, you will be given the knowledge and understanding you seek. Every blessing the Lord has for you—even miracles—will follow.

https://www.lds.org/general-conference/2018/04/revelation-for-the-church-revelation-for-our-lives?lang=eng

We develop the ability to wait upon the Lord as we practice obedience, gratitude, prayer, and patience.

And then? We will eventually see that the heavens were not closed after all.

Elder Uchtdorf put it this way:

Part of our challenge is, I think, that we imagine that God has all of His blessings locked in a huge cloud up in heaven, refusing to give them to us unless we comply with some strict, paternalistic requirements he has set up. But the commandments aren’t like that at all. In reality, Heavenly Father is constantly raining blessings upon us. It is our fear, doubt, and sin that, like an umbrella, block these blessings from reaching us.

https://www.lds.org/general-conference/2014/10/living-the-gospel-joyful?lang=eng

What blessings come to those who wait on the Lord?

Consider these comforting words from a loving Father recorded in Doctrine and Covenants 98:

1 Verily I say unto you my friends, fear not, let your hearts be comforted; yea, rejoice evermore, and in everything give thanks;

2 Waiting patiently on the Lord, for your prayers have entered into the ears of the Lord of Sabaoth, and are recorded with this seal and testament—the Lord hath sworn and decreed that they shall be granted.

3 Therefore, he giveth this promise unto you, with an immutable covenant that they shall be fulfilled; and all things wherewith you have been afflicted shall work together for your good, and to my name’s glory, saith the Lord.

Blessings are waiting. Answers are waiting. It may be that you will someday understand the purpose of your waiting. And when you do, you will see that the Lord was there showering you with blessings all along.

 

After 5 years of infertility,  Brian and I received on the same day and in the same moment a clear answer that it was time for us to adopt. We immediately started the application and it was only 9 months later that we received a call telling us about Patrick.

All at once, it became clear that our prayers had, in fact, been heard. We hadn’t been forgotten.  In fact, for years we had been very carefully and lovingly prepared for the very challenging task that lay ahead of us. Patrick had been born with a serious birth defect. He was given a 1-2 year chance of survival. He would need constant medical care to survive. And eventually he would need a transplant.

Intestinal transplant was such a new procedure at that time that, had Patrick been born 5 years earlier, his chances of survival would have been very small. Timing was everything for him and for us.

Of course, we traded in one period of waiting on the Lord for another as I became very familiar with the constant waiting that exists in the medical world. From waiting rooms to the transplant waiting list, it seemed my every moment became waiting. We waited 6 years for Patrick’s transplant, struggling with sudden illness, physical limitations, and the knowledge that at any moment he might be called home..

Finally one night at about 10 p.m., as we were turning out the light, the phone rang again. We were told organs were available and we needed to get to Nebraska. Right then. So we grabbed the bags we packed literally years before, called family together for a priesthood blessing, and we went. 24 hours later Patrick was in surgery receiving a new liver, intestine and pancreas.

The few months of recovery that followed were some of the most difficult and sacred of our lives. As we waited for healing, we relied heavily on habits of prayer, fasting, scripture study, and covenant keeping. I came to appreciate the blessings of the sacrament as it was brought to me week after week in his hospital room. Patrick and I held “primary” every Sunday, singing a few songs and telling stories from the lesson manual. We found respite in service to other patients. And we relied heavily on each other and on the Lord.

I have been witness to countless miracles. I have been the recipient of countless acts of service. I have been strengthened when I thought I could not handle another hour.

There is a promise found in the Book of Isaiah:

But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. [Isaiah 40:31]

 

This Mother’s Day, to any of you who find yourselves waiting, hurting, longing, or afraid.. I bear witness from my experience that this is a promise that the Lord will fulfill for you. Now. While you are waiting. Even if other blessings may still require waiting.

(see https://speeches.byu.edu/talks/henry-b-eyring_waiting-upon-lord/)

Let me share with you one more promise given voice by President Nelson:

When you reach up for the Lord’s power in your life with the same intensity that a drowning person has when grasping and gasping for air, power from Jesus Christ will be yours. When the Savior knows you truly want to reach up to Him—when He can feel that the greatest desire of your heart is to draw His power into your life—you will be led by the Holy Ghost to know exactly what you should do.

When you spiritually stretch beyond anything you have ever done before, then His power will flow into you.

https://www.lds.org/general-conference/2017/04/drawing-the-power-of-jesus-christ-into-our-lives?lang=eng

As you wait patiently upon the Lord, may you echo the words of the hymn:

Savior, may I learn to love thee,

Walk the path that thou hast shown,

Pause to help and lift another,

Finding strength beyond my own.

Savior, may I learn to love thee–

Lord, I would follow thee.

(Hymns: Lord I Would Follow Thee)


Through His grace, this is possible, as we come with our lamps trimmed and burning.

 

Additional reading:

https://www.lds.org/general-conference/2011/10/waiting-upon-the-lord-thy-will-be-done?lang=eng

https://speeches.byu.edu/talks/erin-kramer-holmes_waiting-upon-lord-antidote-uncertainty/

https://speeches.byu.edu/talks/lynn-clark-callister_wait-upon-lord-metaphor-

https://speeches.byu.edu/talks/henry-b-eyring_waiting-upon-

https://www.lds.org/ensign/2007/06/oil-in-our-lamps?lang=

https://www.lds.org/ensign/2014/11/general-womens-session/prepared-in-a-manner-that-never-had-been-known?lang=eng

 

It’s great to be 8!

On Monday, Patrick will be celebrating his 8th birthday. 8! 8 whole years! And 2 whole years since his transplant!

I’m working hard to pulling together his birthday video. We’ve had a big and busy fall so it’s going to be a little late this year. But it’s just astounding to see how he has grown in the past year. In every way.

The year after transplant, Patrick’s body was shocked and he didn’t grow. But this year we can barely keep up with his clothes. We upgraded him from the only bed he’s ever known, one of those crib-bed combos, because he had gotten too tall for it. His clothes are a medium now and he’s in that awkward size 13 shoe that’s right between little and big kid styles. He is just inches below my shoulder now. And honestly, sometimes I turn around and am surprised to see that he is still small because he feels so big.

He’s grown a lot in spirit, too. For the time being, we have hit upon the perfect mix of medications for his ADHD that keeps him calm and focused while still letting him be his boisterous self. (His psychiatrist warns me he will outgrow these doses soon, but for now they are working.) That has given him the opportunity to grow in a lot of other ways. To sit still and listen and understand. To have his own ideas of how to do things and then to stand up for them. He is becoming more helpful, more responsible, more patient.

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He is still the amazingly compassionate child we have always known who is endlessly concerned for the happiness of others. He is the first to give a hug when someone cries. He remembers others’ needs he heard of throughout the day in his prayers. He can tell you all about each of his classmates favorites. And he sees the best in even those who sometimes seem the most different.

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With glasses helping his vision, Patrick has grown into a voracious bookworm. He reads all the time. Bedtime reading time is non-negotiable and he’s often found on his bed looking at books. His reading fluency is growing by leaps and bounds. He reads everything to me. And is pretty darn good at spelling. His handwriting is really getting better which is very impressive in light of the fact that he is right-handed and his brain injury has left his right side fairly weak and uncoordinated. He doesn’t like math. But if he forgets to protest because he doesn’t like it, he’s even getting the hang of addition.

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We bought a trampoline last spring and Patrick can often be found in the backyard jumping. He went from not jumping evenly with both feet to starting to do jumping tricks. One of our favorite summer passtimes was to go into the backyard and alternate between jumping until he was too tired and reading Dick and Jane. He’s discovering joys we didn’t think possible like bike-riding and swimming.

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He earned his Tiger Cub Rank last month and most of the available beltloops. He’s excited to move on to Wolves and we hope he’ll be as happy and welcome in his new den as he was in the one we left. He had a wonderful experience at scout camp this summer. Patrick loves scouting and I love what it teaches about being a good boy and growing into a good man.  He is really trying to be trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent… and HUNGRY.

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We went to a Patrick’s annual follow-up appointment with his transplant team last week. They were so happy with what they saw in him. The first thing the surgeon said was “well he has changed since we last sawl him,” commenting on how tall and grown-up Patrick seems now. While Patrick sat on Dr. Mercer’s lap and took pictures on his cell phone, we reviewed his diet, growth and medications. With everything going so well, Dr. Mercer decided that Patrick may not still need steroids to prevent rejection. They gave us instructions on how to gradually wean him off of them and the acid controller that they have made necessary for him, too.

He gave him the all-clear for sports. (Adaptive baseball here we come, we hope?) And we decided it’s time to start planning to remove Patrick’s port. With things so stable, they think that he can soon only need labs 4 times a year. That makes the port not worth the risks. Still need to talk to the doctors here about how to go about that.

 

With so much growth, we faced a big choice for Patrick this year. In the Church of Jesus Christ of Latter-Day Saints, 8 is the age at which children are generally considered old enough (accountable) to be baptized. We believe that younger children are innocent and unable to sin and repent, therefore baptism is not required for them. Most 8 year olds are able to understand enough about the gospel, baptism, promises, and repentance (if not more) to be able to decide if they want to be baptized. Living in Utah, where the church is so prevalent, 8th birthdays are a really big rite of passage.

So we have been watching. And studying. And praying. And finally a few weeks ago we met with our Bishop to talk about baptism. By that interview, the answer was fairly simple. We decided that Patrick is still not at the same level as most 8-year-olds. Right now, he is still innocent. And so, for the time being, he will not be baptized.

For those of you wondering about the doctrinal implications of this, the Book of Mormon teaches:

Listen to the words of Christ, your Redeemer, your Lord and your God. Behold, I came into the world not to call the righteous but sinners to repentance; the whole need no physician, but they that are sick; wherefore, little children are whole, for they are not capable of committing sin; wherefore the curse of Adam is taken from them in me, that it hath no power over them;

To be clear, Patrick has a very strong love for Heavenly Father and Jesus. Just this morning he refused to get out of the car because I’d forgotten to say a morning prayer and he wanted one. He wants to be baptized. And we believe that in a few years, he’ll be ready to understand and make that choice.

For those with logistical questions: Because we believe Patrick will someday be able to be baptized, we are not doing any replacement baptism celebrations. Those things can wait a couple of years so he can appreciate them. For the first time in his life, something can wait. He has years ahead of him so this is ok.

I’m going to throw in a separate bonus post about this decision, but in light of an 8th birthday, I thought at least this much should be answered for now.

Instead of 8th birthday traditions, we are going to do something that Patrick has rarely experienced in his life. We are going to have a plain old ordinary birthday. With terminal illness, then transplant, birthdays have always been a bit unusual. This year, Patrick’s school is celebrating Halloween today and not next week so he won’t have to share except for trick-or-treating. It’s a long weekend. We’ll have cake and present with family at Sunday dinners. We’ll go to an amusement park on Saturday so he can ride rollercoasters and drive cars. We’ll send treats to school We’ll decorate with a banner and balloons. I’ll make him his choice of dinners. And we’ll have cupcakes and sing to him and open presents. Just us. Just boring. It will be wonderful.

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Because he is wonderful. And we have been blessed with a little bit of ordinary. And for Patrick, ordinary deserves to be celebrated.

8 years, buddy! I am so proud of the boy you are becoming.

March, or in other words, take that MacBeth

On the first day of March, I sat in the 3rd grade classroom where I volunteer and I listened to the teacher, Mrs. H., explain to the children that March is either lion or lamb. I had been thinking it, too. We all have heard it. “March comes in like a lion and goes out like a lamb.” We made crafts about it in school. Only Mrs. H. proposed a different idea. Whichever way comes March comes in, it goes out the opposite way. And that particular first day of March, despite a cold wind, was overall quite warm and sunny. She told the children to watch and see if March would go out like a lion.

I saw a lot of lions and lambs in the last few weeks of March this year. The spring equinox was early this year, and so also was Easter. For school schedules, that meant that spring break came earlier than usual this year, too.  In some ways, it was just on time for our family.

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March started out a little harder for Patrick. And very busy with work and other responsibilities for Brian. Our lemon of a Jeep misbehaved one too many times for our taste. Actually, its radiator literally blew up, revealing another potentially time-consuming and costly repair. And so we decided it was time to buy a new car. That’s great news. And a lot of fun.

Unless… you happen to have an uncontrollable obsession with cars. Shopping for, purchasing, and then adjusting to a new car proved exceptionally difficult for Patrick and led to him being unable to concentrate at home or even at school.

Brian’s work got especially busy right around that time, too. He crammed a business trip, some off-site planning meetings, and 3 middle of the night system upgrades into a period of about 2 weeks. All while fighting a monster of a cold.

Bike riding around Willow Pond

Bike riding around Willow Pond

And so when spring break rolled around, I think we all found ourselves more than grateful for the opportunity to escape. Brian saw the long school break on the schedule and decided to treat our family to a vacation. And, as we really only know how to really relax in one place, off to Disneyland we went.

It was a great trip, honestly. With the newfound attention-span Patrick’s medications have given him, he’s started to enjoy feature-length movies of late. And his favorite of all is Cars. He recognizes scenes in the movie from his trips to Disneyland (instead of the other way around, which is priceless.) And so was extremely excited to get to visit Radiator Springs, eat in Flo’s Diner, dance with Luigi’s cousins, and meet all of his friends in person.

We crammed as many rides into our trip as possible. We splurged on a character dining dinner the night we arrived. Patrick loved having mac & cheese pizza, mashed potatoes, corn on the cob, an a bowl of M&M’s while being visited by his favorite characters. Pluto even let him feed him. As a bonus, we then skipped meeting characters this time around, allowing time for extra rides instead. We stayed in a hotel with a pool and went swimming as a family for the first time since Patrick had his line removed. We watched firework on our walk back to the hotel every night. We didn’t sleep enough at night, but enjoyed early mornings in the park. It was a fun trip.

We came home on Saturday afternoon to give ourselves time to get ready for Easter the next morning.

Oh, what a time for the message of Easter for me. While we were in Disneyland, two babies were born in my family. I have a new niece and nephew. Born just a day apart. So before Patrick returned to school, we went and met the new babies.

He doted on them. Patrick loves babies. He kept asking me if he could bring them home. He hugged them too tight. He kissed them. And he promised them he’d be their friend forever. Oh, how he made my heart ache to let there be a baby in our house.

And, oh how he reminded me that it is anything but possible right now. In all his loving attention, he has no idea how strong he is, how fragile they are. And he just can’t understand that they can’t get up and play or eat or talk the way other people can. So thank goodness for baby cousins right now. Because we need babies in our life, even when we can’t have them in our home.

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So in the mornings, I kissed and cuddled babies. In stark contrast, in the evening, I said goodbye to a dear friend.

One of the wonderful things about my church is an organization called the Relief Society. Everwhere the church is, the women of the church are gathered together in this organization. And it doesn’t matter how different you may be in age, background, culture, or wealth.. you are sisters. The neighborhood I live in was built new just long ago that many of the people who built the homes originally are reaching the ends of their lives. And so you’d think I’d get used to having to say goodbye to these sisters from time to time.

But sometimes they work their way into your hearts a little more. This friend and I loved many of the same things, despite differences in age. She was a teacher and invited me to translate in her classroom. She was a musician and loved to invite me to sing, and then push my abilities with difficult songs. She was one of Patrick’s biggest fans. And although I’ve known for a couple of months that she had been diagnosed with a terminal illness and that her death was quite merciful, still I think this is one goodbye that will stick with me for a while.

Especially because of timing. In the week after Easter, I greeted two new babies and attended a funeral. In fact, the day of the funeral, I spent the afternoon with Patrick at the 10th birthday party of a classmate. What an interesting sampling of milestones. To see the bookends of life so close together has made me think about the volumes inbetween them.

When I was in high school, we had to memorize a soliloquy from Macbeth. With his castle under attack and everything falling around him, Macbeth receives word that his wife has died. And his reply:

“She should have died hereafter;
There would have been a time for such a word.

To-morrow, and to-morrow, and to-morrow
Creeps in this petty pace from day to day,
To the last syllable of recorded time;
And all our yesterdays have lighted fools
the way to dusty death. Out, out, brief candle.”

I’m not sure exactly why this pessimistic eulogy has been in my mind. Except the knowledge that it is so wrong. Because life is brief, but so much more than “signifying nothing” as Macbeth lamented. In fact, a funeral reminds us that it is, in fact, all the little nothings, all the everyday things. all the tomorrow and yesterdays and todays full of mostly mundane things that add up to what matters.

Because death isn’t the end. It’s not a period. It’s a comma.

Easter celebrates that fact. Because Christ came. Because of his sacrifice. Because he died, and then after 3 days was resurrected, we all will live again.

There is something wonderful to hope for.

However, I feel that being a full-time caregiver is so perfectly captured, though, in the words “tomorrow, and tomorrow and tomorrow creeps forth in this petty pace from day to day.”

I’ve been struggling a bit this month. I have been feeling lost. Invisible. Mundane. I don’t have the hang of this new life. I have more time, but not complete freedom. I’m not fighting for survival every day, but there is still a lot of resistance in our lives.

Every day certain things must be done. I clean the house and do laundry and do the dishes. I sweep the crumbs of Patrick’s snacks. I put the toys back in the toybox. I shop and plan and make dinners. I prepare medications by measuring, cutting, crushing, and mixing, and then make sure they are given on schedule. I help with homework. I encourage reading. I dress and undress my son. I remind Patrick how to wash his hair. I bring in the mail. I clean off the kitchen table. Over and over again. Only to need to do it again the next day. Or the next hour.  I’ve been kept just a little too busy to dare make time for myself but had just enough free time to fret over it.

I’m struggling to get the courage to take time for myself. I’m so used to abandoning what I need to do to take care of Patrick that even though I have a little bit of time, I am timid about branching out. I don’t trust that I’ll be able to finish what I start. And that then I’ll be upset. The problem is that this is kind of a lonely way to approach life. I’m trying to reach out and reestablish relationships that got pushed aside when I didn’t have time to do anything more than survive each day. But that takes courage, too. And although I may sometimes choose to be outgoing, deep down I’m pretty shy.

But, like you, like most of us, I know the best I can do is get up and try again each morning.

We often compared the life we led with Patrick before transplant to a rollercoaster. Thrilling highs and followed by quick plummets. I’d learned to live with that kind of thrill ride. You just hang on tight.

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But in Disneyland this last trip, Patrick discovered a new favorite roller coaster: Goofy’s sky school. Instead of fast ups and downs, this ride is a much more gradual descent. Instead, of hills, it’s full of sharp turns that knock the breath out of you. The track is obscured so you don’t always see it coming. Sometimes that’s what this new version of life feels like.

It’s been a year since Patrick’s last hospital admission. That is ASTOUNDING to me! It’s been a year since we had to drop everything because he was suddenly fighting to survive.

Let me tell you a bit about what the ride is like these days. It’s gentler, for sure, but it’s no “It’s a Small World” cruise.

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Geared up for a snowshoeing field trip at school. Couldn’t ever get him to look at the camera with eyes open.


Patrick’s been struggling with behavior at home and at school. And every note home or call home has left me feeling helpless because, unlike problems with his health that had prescribed medical solutions, this isn’t straight forward. They turn to me for answers and I don’t have them.

He’s doing ok. We’ve been experimenting with changes in his medication and the changes are helping. He is doing better. But the transition has been tricky. And I don’t know if it’s been that, or illness, or hayfever, or growing, or something else but he has been tired and grumpy and not himself. Medicine is more practice than science and when it comes to brain injury, that’s especially frustrating.

We increased his dose of clonidine to see if we could help afternoons go better, and he started to need a nap every day. He hates naps. But he can’t function sometimes without one. I even had to check him out of school and bring him home to nap last week.

We’ve talked to his psychiatrist and adjusted that dosing and talked about trying some other things. It seems to be helping. But it still feels helpless.

With time to kill between doctor's appointments, Patrick and I stopped in at the museum at Fort Douglas

With time to kill between doctor’s appointments, Patrick and I stopped in at the museum at Fort Douglas

We had a good scare right before spring break. Patrick was knocked off of the playground at school and landed flat on his stomach. It left a bruise where his g-tube hit and so I had to squeeze in an emergency visit with his GI to check to make sure that his graft wasn’t at risk. That’s a possibility with any injury to his abdomen.

Perhaps the most frustrating thing is that out of the blue, his oral aversions have gotten worse. He won’t take his vitamins anymore in the morning. I crush them and mix them in yogurt so they are easier to eat. He sticks his tongue out to block them going in. Or holds them in his mouth and doesn’t swallow. It’s miserable to watch. But they aren’t optional. They’re mandatory. And so we start many days with me pleading with him to do something that he thinks is torture.

He sprained his ankle at the birthday party. He tried climbing onto a bunkbed and fell off. Patrick’s never really had this kind of injury. With his cerebral palsy, he was especially unsteady limping. He also isn’t used to regular illnesses or injuries still, so he was extremely afraid. Asking him to do what little might help.. Elevation, ice, rest. That only scared him more. He needed extra help getting around, getting dressed, bathing, etc. Thank goodness it was conference weekend so it was ok for him to stay home. He’s spent a few days inside at recess at school. But thankfully he’s healing. He’s limping, but can jump and run and stomp while limping.

Breakfast in the waiting room at the Eccles Outpatient Building

Breakfast in the waiting room at the Eccles Outpatient Building

I’m grateful to have had a couple of weeks of bookends. A couple of weeks of being shown things to make me think about what I’m putting inbetween. And a reminder that there are often many volumes in our life. We’re put away the one called “Ultra Short Bowel Syndrome” and are nearly done with another called “Transplant Recovery” but this latest volume of “First grade” has certainly had some unexpected plot twists.

I’m sometimes tempted to pen, like Shakespeare, that tomorrow and tomorrow and tomorrow just keep creeping at their petty pace. But that feeling is only a page in the story.

I heard a talk this weekend that’s helping my sentiments for tomorrow. It was shared in the semiannual general conference of the Church of Jesus Christ of Latter-Day Saints this weekend. The speaker was Elder Jeffrey R. Holland, an apostle and a gifted teacher.

Here’s a brief summary.

First, he shared this image that kind of sums up how I sometimes feel when I’m headed to bed and thinking about what I need to do the next day.

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Then, he gave this counsel about how to proceed.

“If in the days ahead you see not only limitations in those around you but also find elements in your own life that don’t yet measure up… please don’t be cast down in spirit and don’t give up….”

“Please remember tomorrow, and all the days after that, that the Lord blesses those who want to improve, who accept the need for commandments and try to keep them, who cherish Christlike virtues and strive to the best of their ability to acquire them. If you stumble in that pursuit, so does everyone; the Savior is there to help you keep going. . . ”

And then, in contrast to the pessimistic message of Macbeth, Elder Holland gave this beautiful description of the potential for tomorrow.

“If we give our heart to God, if we love the Lord Jesus Christ, if we do the best we can to live the gospel, then tomorrow—and every other day—is ultimately going to be magnificent, even if we don’t always recognize it as such. Why? Because our Heavenly Father wants it to be! He wants to bless us. A rewarding, abundant, and eternal life is the very object of His merciful plan for His children!”

Did you read that? Tomorrow=magnificent. Even if we don’t always recognize it as such.

I’ve got a long way to go. I have a lot to learn about patience. And a lot to learn about humility. I’m finding those lessons are taught in the long, flat, tedious prairies. Not on the peaks.

It snowed the last two days of March. I had to scrape ice off of my car on the last day of spring break. Mrs. H was right. March came in like a lamb and went out like a lion.

It wasn’t an easy month. And April has started out with it’s own measure of sound and fury. We have more milestones: another funeral and a wedding ahead this week. And will still start each and every day with a yucky vitamin.

Snow on spring break of course means a kids meal at Arby's in your PJ's

Snow on spring break of course means a kids meal at Arby’s in your PJ’s

But I’m trying remember Elder Holland’s words:

“So keep loving. Keep trying. Keep trusting. Keep believing. Keep growing. Heaven is cheering you on today, tomorrow, and forever.”

P.S. If you haven’t read or better yet watched Elder Holland’s talk, you really should. It will make you feel happy because it is true.  Here’s a link: https://www.lds.org/general-conference/2016/04/tomorrow-the-lord-will-do-wonders-among-you?lang=eng

Whom the Lord Calls

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Valentine’s weekend represents a lot of milestones for our family. Two days ago, we celebrated the seven years since we took Patrick to the temple to be sealed to our family. Three years ago, we took Patrick to Nebraska to have him evaluated for a transplant there. It meant moving to a better program, but leaving a lot of comfort behind. A completely foreign city, a huge hospital, and no one we knew. And then one year ago, we arrived home with Patrick after he’d received his transplant, evidence of a miraculous recovery.

And then yesterday we added one more. Yesterday, Brian (also known as Howie, if you are ever confused by my mixing names in this blog post) was called to be a counselor in our bishopric.

A bit of explanation for those less familiar with the Church of Jesus Christ of Latter-Day Saints. The “Mormon” church has a lay ministry. That means that we don’t have professional clergy. At all. Some full-time. But none are formally trained. And none are paid. Instead, we are all trained as a part of “bringing up” in the church and we all take turns. Every 5 or more years, a new bishop is called. His service is voluntarily and in addition to his regular job, but no less real in its demands. He is a pastor to his congregation. Leader, comforter, judge, and friend. And he is helped in his work by two counselors. Brian was just made a counselor. (And in order to serve in that assignment he was also ordained a high priest.)

But this blog isn’t about Brian or about bishoprics. It’s about our family and our journey together. And so I’m going to share some reflections I’ve had as we prepared for this new assignment. (See, even though the news was only announced yesterday, we’ve known for a few weeks and I’ve had some time to think.)

A phrase came to my mind a few days ago. “Whom the Lord calls, He qualifies.”

And so I’ve been thinking about the calling I’ve been pursuing for the past seven and a half years. My calling as Patrick’s mother.

Seven and a half years ago,  I took that a phone call, my life changed. But I don’t think you could say that the Emily who answered that call about a boy who needed a family was qualified to be a special needs mom, a short gut mom, a TPN mom, a transplant mom, an autism and ADHD mom, a feeding therapy mom, a food allergy mom. I had tried to prepare to be a mother. I had often wondered if I hadn’t been given the chance yet because I wasn’t really prepared to even be a mother. (I wasn’t so very wise then, was I?)

Patrick on His sealing day.

Patrick on His sealing day.

Some people say that special children are only given to special parents. And I don’t think that is true. At all. I’ve watched hundreds of moms in the support group I run learn about their children’s diagnosis and realize that they don’t have even the beginning knowledge required to do what is required of them.

I certainly wasn’t equipped. I was impatient. I was just learning how to handle my anxiety. I had panic attacks when schedules changed. (Umm, drop everything and run to the ER? What?) I was absolutely phobic of doctors and hospitals and especially surgical procedures.

When I took Patrick for his transplant evaluation, I had learned a lot and was a seasoned medical mom. But I couldn’t have imagined what that experience would be like. The pain he’d be in. The effect his medications would have on his moods. The trauma we’d both have to learn to live with. And though I knew being far from home and without my husband would be hard, I couldn’t have prepared for it.

Patrick and his dad in x-ray at his transplant evaluation

Patrick and his dad in x-ray at his transplant evaluation

When we brought a “new” Patrick home, I wasn’t prepared for the growing and changing that would happen this year. The sheer weight of trying to learn a whole new way of life. A new gut in many ways opened doors to a new him and needed a new kind of mom.

I wasn’t qualified for any of these things when I started them. But I was willing. I was teachable. And I trusted that the call came from the Lord.

I have received a lot of on-the-job training. I have had solutions to problems come to my mind with such clarity and perfection that I know they can only have come from a knowing Heavenly Father through the Holy Ghost. I have shed lots of tears when I didn’t feel I was measuring up. And then I’ve gotten up and kept trying.

I have learned to rely heavily on friends and family and neighbors, on experts willing to take the time to teach me, on other parents who started out as strangers but became friends.

And I’ve learned that truly, whom the Lord calls, He qualifies.

He does it. Through His grace. If we let Him.

Special children aren’t given to special people. Ordinary people become parents to special children all the time. Ordinary people are faced with all kinds of devastating trials every day. Ordinary people step up and do impossible things every day.

There is a saying that floats around a lot. “The Lord won’t give you more than you can handle.”  That isn’t quite right. Here’s what the scriptures really say:

There has no temptation taken you but such as is common to man: but God is faithful who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it.  1 Corinthians 10: 13

In other words, “The Lord won’t give you more than you can handle without also giving you a way to handle it.” He uses trials to make us better. To make us more like him. He takes ordinary, willing people and makes them into special people. Or, in simpler words, “Whom the Lord calls, he qualifies.”

P.S. Don’t take this as bragging. I still consider myself far more ordinary than special. But I digress…

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Here we are. Another Valentine’s weekend. Another big change. I don’t know quite yet how Patrick and I are going to fare with Brian even busier. I’m sure sacrament meetings are about to be really interesting. And bedtimes.

I am sure that my humble, determined-to-serve husband is feeling a bit overwhelmed by this new calling. I’m also certain that he will do a marvelous job and that the people of our church are going to be really blessed by having him on their side.

And I’m going to do my best to keep up. That’s what I’ve been doing the whole time I’ve known him.

Brian loves to go for walks. When we were newlyweds and lived downtown, he would decide to walk to the city center. That wasn’t a short walk. And with his longer stride, I had to take an awful lot of steps to keep up with his pace. He has taught me quite literally what it means to “lengthen your stride.”

That’s what it is like having him for a best friend and husband. He’s always challenged me to quicken my step, lengthen my stride, and do a little better.

I’m ordinary. And short-legged. But I’m trying.

And whom the Lord calls….

April and some Easter reflections

Happy April! Don’t you just love April? It is teeming with new life. The trees are in blossom. The tulips opened this weekend. There are little green shoots poking up out of the soil in all of the gardens around my yard. There are birds nesting in the eaves of my house. (No, that’s not necessarily a good thing.)

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April and spring also bring us Easter. A celebration of Christ’s victory over death. And spring surrounds us with reminders of the Lord’s power to bring forth life. To turn what appears dead and gone into glorious beauty. It as if all of nature is shouting the promise of renewed life.

April is also national Donate Life month. This year, with our family’s transplant journey fresh in my mind, I can’t help but see lessons about Easter and Christ’s atonement in it. I thought perhaps I would share some of those thoughts with you.

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Restoration

In the Book of Mormon, a prophet named Alma describes the resurrection in these terms.

The soul shall be restored to the body, and the body to the soul; yea, and every limb and joint shall be restored to its body; yea, even a hair of the head shall not be lost; but all things shall be restored to their proper and perfect frame.  – Book of Mormon, Alma 40:23

I used to say that I looked forward to the resurrection because Patrick and I were going to have a week-long feast. With a perfect body, I want him to be able to taste every wonderful thing that he has missed experiencing in this life.  I never imagined that to be even remotely possible in this life.

And yet, since transplant, Patrick is getting to do just that. He is finally able to begin to experience some of those things. It is incomplete. Allergies and diet restrictions and motor deficits from his brain injury still limit him. And we will still need to have our feast.

Transplant is not a perfect restoration. In fact, an x-ray or ultrasound of Patrick’s belly would reveal an anatomy that looks more like a jury-rigged mess. But it is the closest approximation that I know of in this life.  Transplant takes what is broken or missing and puts things back to their “proper” frame.

And seeing what a transformation this human attempt at restoration can bring, I look forward with joyful anticipation to a day when not even a hair is missing, let alone major organs. When everything is made right. When little eyes can focus to read without effort. When words don’t get stuck in formation. When little legs can run without weakness. When everything is made whole and perfect again.

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Resurrection

There is one part of transplant that I have a hard time understanding. When Patrick was 9 months old, his heart stopped. In essence, he died in my arms. For 2 weeks afterwards, we came back to our house every night not knowing if he would survive. I was destroyed. I had not understood until that time the literal physical ache of grief that accompanies the loss of a child.

Yet somehow, in the midst of that grief, another family found in the midst of that grief the compassion to give the gift of life to mine. Before transplant, Patrick was terminal. We didn’t talk about how very real that possibility was because we didn’t want it to get in the way of his living the life he had. But we knew. We had made plans and were preparing to one day have to let him go.

With transplant came something different. A hope of a full and long life. A gift that rose out of the grief of loss and death. And, in a very real way, Patrick’s donor also lives on in him.

Again, from the prophet Alma:

And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities. – Book of Mormon, Alma 7:12

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Our Savior voluntarily laid down his life. He suffered pain and sorrow so great he bled from every pore. He hung and he suffered and he died. For us. His mother and his friends wept as they watched him die. They laid him in a tomb and they went home mourning. They wondered how and if they would be able to go on. And all of it. For us.

And on the third day, the returned to find the tomb empty. Because Jesus had risen. For us. He overcame death. And because he rose, we will rise. And death is not forever. Loss and sorrow and separation need not last forever. Because of Him.

I see in transplant a whisper of this promise. It is possible to conquer death. And I know that Christ has conquered death and that my son, if he dies, will live again. And so will his donor.

O death, where is thy sting? O grave, where is thy victory? – 1 Corinthians 15:55

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Weakness

If you are a medical nerd like me with an interest in transplant, I highly recommend that you sometime read the autobiography of Thomas Starzl, the inventor of transplant. It is called The Puzzle People and it is fascinating to read the journey, the determination, the trial and constant failure that led to this amazing medical breakthrough. It was an amazing confirmation to me that God inspires science and discovery and he leads human beings to be able to master the eternal laws that govern the world we live in.

I’ve learned that in science there are also important eternal lessons. And in transplant, there is an important lesson taught about weakness.

You see, in his early experiments, Dr. Starzl found that he had mastered the surgical technique of transplantation. And yet he struggled as recipients rejected the life-saving organs because they were foreign and seen by the immune system as a threat.

Transplantation did not move from the realm of science fiction into medical science until Dr. Starzl discovered how to use immunosuppression to weaken the body’s defenses enough to accept the transplanted organ. Transplant of larger, more complex organs wasn’t possible until the discovery of a drug called FK506, better known as Prograf, that could weaken the body’s natural immune response enough to protect the transplanted graft. The reason that intestinal transplant is so new and so rare is that the intestine is so large and so intertwined with the body’s immune system that it took such a high degree of immunosuppressive therapy.

In layman’s terms, in order for the body to accept a change as large as transplant, it first had to be made weak. Weak enough to be susceptible to infection and illness.

For the week following transplant, Patrick stayed in the ICU so that he could be given a drug that completely wiped out his immune system. It removed it so completely that they then prescribed him a year of antibiotics, antivirals, and isolation in order to try to protect him. All of his defenses were removed. Because that is the only way to prevent his body from immediately rejecting the gift he had been given.

The apostle Paul wrote about an unnamed affliction that plagued him for years. He frequently prayed and asked for this “thorn in his side” to be removed. And yet, it never was. After much time and certainly much struggle, he recorded the Lord’s response to his pleas.

And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.

Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong. – 2 Corinthians 12:9-10

Sometimes, the Lord gives us strength through weakness. Sometimes he leaves us with a thorn in our side, with prayers that seem unanswered, with trials that seem neverending. He does it because sometimes the only way for us to be prepared to receive His gifts.

But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.

All we like sheep have gone astray; we have turned every one to his own way; and the Lord hath laid on him the iniquity of us all. – Isaiah 53:5-6

Christ atoned for the sins of the world, taking upon him every sin and sorrow and transgression. But what good is that gift if we, thinking our own defenses are strong enough, reject His grace. Sometimes, it takes weakness first for God to work the change in us that will make us strong. Not all healing is painless.

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I am so grateful for Jesus Christ. For His resurrection. For His atonement. For His grace and for His love. I know He lives.

I see reminders of His gifts and His promise of life all around me. In the tulips and the tree blossoms. In tender shoots in garden beds. In the sparrows. And especially in my son.

We are doing well. Patrick’s responded well to the antibiotics he was started on last week. His liver numbers are normal again. We are still giving IV antibiotics. Therefore we are sleepy. But we are happy. And we are healthy. We had a great Easter full of bunnies and feasting and magnificent sermons. This life is not always easy, but it is good. We are blessed.

Transplant Day 149 and how liver enzymes meant a weekend in the hospital

Hello from “The Hotel on the Hill.” If you are new to our blog, this is the nickname for Primary Children’s Hospital which is situated in the foothills of the Wasatch mountains on the edge of the Salt Lake Valley.

We have been here since yesterday afternoon. Here’s why.

A few weeks ago, Patrick’s nurse checked his temperature when he came to draw his morning labwork and it was a little high. Later that day, his labwork showed elevated liver enzymes and a slightly higher white count. These two signs together usually mean an illness and we thought that maybe Patrick had a bit of a stomach bug. The numbers stayed high for a couple of days, then went back down. We called Nebraska Medicine and they said they would check some viral studies to see if something was brewing. No one seemed too concerned.

For the past several weeks, this pattern has repeated itself. Once or twice a week, Patrick’s temperature has gone up. His liver enzymes go up. Sometimes his white count goes up. Sometimes it doesn’t. And Patrick never got sick. And no one ever seemed really worried.

Well, this Tuesday, when they checked Patrick’s labs, his liver enzymes were up by almost 100 points. His white count was normal this time. His temperature was 99.7. He was acting fine. But they also finally got around to those viral studies which showed no concern for the viruses they suspected might be to blame. Also, Patrick’s prograf level was a touch high and the transplant team decided to drop his dose by half.

I texted Patrick’s local doctor, Dr. Jackson, to let him know about the change and that night he called me.  He suggested that the one other thing we hadn’t checked for was infection in Patrick’s central line.. maybe some small amount of bacteria seeded there. So the next morning Patrick’s home nurse came by and drew cultures and repeated liver enzymes and prograf levels. The liver tests came back pretty early. The enzymes that had been high were the same, but another marker was now up, too.  And Saturday morning, as we were getting ready for the day, we got a call from the GI fellow on call who said that Patrick had tested positive for a line infection.

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Well, Patrick was still feeling fine. So we asked if we could still take him to the Make-a-Wish easter egg hunt we had gotten him up early for. Then I called Dr. Jackson to figure out how exactly to proceed. We talked about starting treatment at home, but Patrick needed some vancomycin.. a drug we have a love/hate relationship with because it clears infections, but Patrick’s pretty allergic to. It gives him a rash, so he has to have benadryl. It also makes his belly quite sick and we didn’t know how a new gut would take it.

So, we made a plan to bring Patrick inpatient for the weekend while we start antibiotics and figure out what comes next.

Because he is still so soon after transplant, we are making our first stay in the cancer/transplant unit, or immune compromised unit. (ICS). At first, I was worried they might kick us out after we went through all the work to make an infection-risk-minimal admission. They don’t accept transplant patients after the initial immune suppression and they didn’t know us and thought maybe someone was sneaking us in. But once they heard “5 months since transplant” it was ok.

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They are experts with central lines here, which is nice. They don’t do g-tubes or ethanol locks often, though. Apparently only short gut and related GI diagnoses get the full gammut like we do. So there’s still some teaching to do.

The nice thing is that they keep the rooms super duper clean and, really, the nursing staff here is in general a little more experienced.  The techs are really on the ball making sure things are cleaned up, diapers charted, extra food collected, teeth brushes, baths given, etc. There are things in this unit that I would have killed for in Nebraska. Like washing machines down the hall. (Last night Patrick had a diaper leak and they just showed me to the washing machines so I could clean it up.) And bathtubs. Patrick was very excited to take a bath here this morning. And needleless hubs with scrub caps and a policy of scrubbing the hub for a full 15 seconds and then letting it dry.

The room is smaller, but these rooms feel like home. And the parent bed is comfy. And the view is spectacular. And the cafeteria is just downstairs and still serves most of our comfort foods, even though they’ve just remodeled.

So it’s different, but it’s home.

This has been a very long week. We are all very tired. Monday night, my cell phone rebooted and wouldn’t load its operating system afterwards. Brian plugged away at it every chance he got, but there was no fixing the problem. So I had a few panicked days where I could see abnormal labs but couldn’t text as I normally do to communicate with Patrick’s medical team. Thankfully, Google has amazing customer service and pulled off a warranty exchange before Friday.

Tuesday night, I started to get an ache at the back of my throat. I hoped it was allergies, but was pretty sure it was a cold. I woke up sure I was sick. So I masked and gloved up, stripped and washed all my bedding, did as much laundry as possible, clorox wiped everything in sight and just tried to muddle through with as little exposure to Patrick as possible. It took round the clock mask-wearing, lots of handwashing, lots of running outside or to another room to sneeze or cough of blow my nose, and lots of picnic lunches (so I could eat without breathing near him) to get through the week. Thank goodness family was in town visiting. Two nights in a row, Brian took Patrick to dinner with his family, leaving me home to rest, clean, eat, and breathe mask-free.

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I was still sick and masked yesterday when we came up here. I was almost afraid they wouldnt’ let us into this unit with me sick… but I’m following the same precautions the rest of the staff here does so it turns out it was ok.

Thank goodness I am better today, though. My ears are so tender from wearing a mask all day and night that I can barely stand to wear my glasses and putting a mask on this morning to walk Patrick to the playroom almost made me cry.

It hasn’t been a better week for Brian, either. Coming home from work and taking Patrick away immediately is not easy for him. And he has some some busy weeks, preparing for some organizational changes heading his way.

So we were beyond grateful yesterday morning when Patrick’s doctor asked if we’d like to wait and come into the hospital at 1:00. We had promised and easter egg hunt and we had a great time. Make a Wish throws a great party and no one looks twice at you wearing masks and gloves and not eating any candy. Patrick was so very excited to meet the Easter Bunny. We got his face painted. We had a great time in line with the clown making balloon animals. (Have I mentioned Patrick loves clowns?)  The egg hunt was only mildly interesting to him. He gets tired walking still and so running around hunting eggs wasn’t the most exciting idea.

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The eggs were filled with candy and Patrick was a bit disappointed. But we knew we were headed to the hospital and were feeling generous and Brian had a coupon. So, we offered to let Patrick trade his candy for a prize and we headed to the Disney store.

We talked briefly about heading home and doing our chores but opted for some family fun time instead. We started at the Disney store where Patrick picked out a Mickey Mouse train set. Then we went to a built-to-order pizza restaurant and let Patrick design a cheeseless pizza. He loved it and scarfed it down and packed up his leftovers to go.

We left the mall and went for a walk around Temple Square. If you’ve never seen the gardens at Temple Square around the time of LDS conference you should, Especially in spring. They are amazing! Tulips and fountains and pansies and flowering trees raining white petals everywhere.
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Patrick did what all little boys do… walked the borders of every fountain and ran away and climbed up into the bronze statues.

And then, it was time to come up to the hospital.

And it was strange being admitted to a new place that is different but familiar. We had an ok night. Patrick didn’t nap on schedule. Not a surprise. But after they gave him benadryl at 5, his eyelids got droopy.

I turned on a broadcast of the LDS Women’s Conference right after Brian left to go get things cleaned up and packed up at home. They started off with a video presentation of a song that Patrick knows from church, The Family is of God. View the video here. Knowing he loves these things, I pulled him up on my lap to watch. He snuggled right down and his eyelids started to droop. The song ended and I told him to stay cuddled and I’d get him a show on his tablet. Well, his tablet was slow and before I had a show loaded, he was asleep. He slept on my lap for 2 hours. I got to bask in a quiet evening of gospel and sisterhood and uplifting messages about the importance of motherhood and womanhood and family. The entire conference is available to watch, read, or listen to here. Largest women’s conference in the world. Totally worthwhile and inspiring if you have time.

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And then, he woke up was very mellow the rest of the evening. We watched movies, played with syringes, cuddled on the bed. At 11, he seemed tired enough finally to sleep so I turned out the lights and he was out in 5 minutes. He slept all night except for diaper changes and woke up with the sun. (Much to my chagrin).

Rounds came early this morning. They said that he had immediately responded to antibiotics and his liver numbers were already trending down. No cultures have grown out, though, from the labs drawn right before antibiotics were started and we can’t quite explain it. The doctor suggested that another option for the off liver numbers being bacteria from Patrick’s gut gettiing into his liver through the gastric bypass created at transplant. I guess we’ll explore that more.

But the long story short is that Patrick seems to be responding well to treatment and shouldn’t be hospitalized long. And we’ll have more conversations about the cause of the problem and the fate of his line in the future.

It’s been a quiet Sunday. Patrick is so much calmer in the hospital now. I don’t know if that’s from practice being in the hospital and entertaining himself alone or because his sensory processing disorder is less of a problem since transplant or because his nurse last night started giving him all the used syringes and passed along in report to continue doing so and he has like 30 of them now, plus extensions to connect them to and that always keeps him happy. But he’s quiet and once we’d all had a nap we were all happier.

That was a lot of story to tell. I really should blog more often so you don’t have as much back story to read through. Oh well.

“Do you know deep in your heart that your Heavenly Father loves you and desires you and those you love to be with Him? Just as Heavenly Father and His Son, Jesus Christ are perfect, their hopes for us are perfect. Their plan for us is perfect, and Their promises are sure.” – Carole M Stephens, Relief Society General Presidency, LDS General Women’s Conference, October 2015

 

Transplant Day 46 and Physical Therapy

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Today was a busy day. I knew we’d need to be up early to start out with labs, but last night was another night where Patrick didn’t make it to sleep till midnight. So when he snuggled up next to me and fell back asleep this morning, I didn’t really have the heart to wake him.

At 8, as my alarm was going off after the 3rd snooze, I decided we were going to have to bite the bullet and get up. I could tell that sometime during the night Patrick’s ostomy bag had come loose. Thank goodness I’ve got a good drain system set up so it didn’t make a mess that woke us earlier. But it did mean that we had to start off with a bag change right away.

Patrick wasn’t so sure of me when I put him in the tub without waterproofing his bag.. But it actually worked very well to make it come off quite easily and changing the bag went very smoothly. But we were really pressed for time so when the phone rang to tell me they were showing his nurse up, he was still quite naked and wrapped in bath towels.

We hurried to get a diaper on and wrapped him up in a blanket and the nurse was able to draw his labs. Meanwhile, my phone rang and it was the pharmacy. It’s been one week since discharge. Time for a new shipment of supplies.

When we got through all of that, it was already 9 a.m. I begged Patrick to stay on the bed and watch Blues Clues and let me run downstairs for his medicines alone so it could be faster. He agreed and we were able to get all of his medicines given on time. But in the meantime, he was a lot happier in the room watching TV than he usually is trying to entertain himself while I do up meds in the morning. In fact, he happily stayed and played and watched TV for another hour and a half.

That gave me time to clean up the room a bit and to set up the printer that my mom and dad bought me for my birthday. (I knew I’d want to do Mommy School here so that was one of my first wishes.)

Finally, I was hungry and he needed formula made so it would have time to chill before starting the new batch running and we had to give in and leave the room. Besides, Patrick needed me to buy him new socks. So we went downstairs and got ready and went to Target.

Let me tell you about why Patrick needed new socks as it brings you to the next part of our day. If you are new to our story, you may not know that Patrick has an anoxic brain injury and cerebral palsy. When he was 8 months old, his heart stopped because of an infection and some medication they were using to treat it. It took over 15 minutes of CPR to revive him. The result is that the ends of all of the blood vessels in his brain were deprived of some oxygen. That accounts for a lot of his behaviors and most of his developmental delays and learning disabilities.

When you hear the phrase “cerebral palsy” you probably imagine someone with a very severe case whose body is contorted with muscle spasms: someone who can’t eat, can’t talk, can’t walk, etc. That is what you imagine because that is the presentation that you can’t ignore so you ask about it. But what cerebral palsy really means is that at birth or shortly thereafter, the brain was starved for oxygen, leaving the patient with a “palsy” or lack of control of the muscles of the arms or legs or more. The signal from the brain to these limbs gets confused or altered somewhere along the way causing unexpected movements, often causing the muscles to spasm.

Well, over the past week, I have seen Patrick’s hip and foot of his right foot turning inward. He is becoming more clumsy and having  a harder time controlling those muscles. I started making him wear his walking brace for half to all of the day. (Enter the need for new, longer socks that would prevent rubbing from the brace against his leg.) We’ve been doing stretching, too, and those muscles are much tighter than they have been in years.

Today after shopping and a short nap, I took Patrick for a physical therapy evaluation in the hospital’s outpatient clinic. I wanted to evaluate his recovery and I was especially worried about this problem with his gait.

The news was good. First of all, Patrick is a “rockstar” from the physical therapy standpoint. His incision is better healed, his movement is better, his pain level is less, and his energy is more than most patients at this point. He is really doing remarkably well.

The therapist said that she thinks that the spasticity in his leg is likely a combination of problems: the trauma of transplant, the effect of new medications, the exhaustion of recovery. In other words, she said that it’s probably something that he’s feeling all over, we just are seeing it more in his leg because that is where he is weakest. She said that for every 1 day in the hospital, we should expect 2 days for his body to recover. Considering that he spent 39 days in the hospital, it will be a few months before he is back to full strength.

The prescription is simple. Keep doing all of the exercises we were working on at home for leg strengthening like climbing stairs, squatting and tiptoes, bike riding, jumping. But, for the next little while, have him wear his brace so that while his nerves and muscles are relearning and recovering, we are training his body to move the right way. Patrick is not amused by this prescription. He keeps asking me to let him take his boot off because he feels like it’s in his way.

The therapist said that she is seeing such progress in the area of gross motor skills that, given our insurance policy’s very limited therapy visits, that she feels like physical therapy would not be her focus right now. She recommended instead that we take advantage of the opportunity to work with an occupational therapist who specializes in feeding in kids post-transplant while we are here.

She also said to allow him lots of rest. And I think that I realized today that doing so may require a little more keeping him in our room. When we hit our room, all of the sensory overload caused by the rest of the house melts away. He is happy watching TV and doing crafts. Tonight it finally clicked for him that the tote in the corner is a toybox and that he is allowed to go get those toys out and play with them.

I don’t know for sure. We’ll need to find a balance so he gets social time, too. We both need it. But we both were much happier with some quiet, one-on-one free play time in the room.

We had another special treat tonight. One of the men from our church who helps bring the sacrament has talked for a while about inviting us over for dinner. Well, tonight, we got the chance. That was really such a treat! Patrick had a great time playing with their two little ones (ages 3 and almost 5). I spend some time with some other adults about my age whom I have a lot in common with. And just take a break from all of this medical stuff for a while. But also, without a ton of explanation. He has been visiting for a while now. He was also the anesthesiologist on Patrick’s case the night of transplant. So they know the story and some of the things they should expect. It was good to just be normal for a little while.

We were both sad to see the evening come to a close. But it was bedtime and we needed to unwind to go to sleep here, too. Setting up my printer meant I also set up a place my laptop can sit next to the TV, so we were able to turn on one of the new DVD’s that Brian’s parents sent him. We watched Curious George’s Christmas while I cleaned up the room, prepared feeds, drew up medications, and got Patrick into his pajamas.

He made it to sleep by 10:30 tonight which isn’t the greatest, but is better than midnight. He also is starting to prefer to go to sleep in his bed on his own. He won’t admit that. He would love for me to lay with him. But he has started to do his usual putting himself to sleep routine if I’ll just lay with him for a bit, then tell him it’s time for met o kiss him goodnight. I kiss him and go lay in my bed until he falls asleep. Then I get up and try to get done whatever was waiting for him to rest.

Tonight while I waited, I decided to poke around Pinterest for kindergarten homeschooling ideas as Patrick’s teacher was still sick today and an hour a week of school is certainly not getting him the education he needs or that his little mind is craving. I am thrilled to say that I stumbled across a curriculum that looks like it will pick up exactly where he left off at school and that really fits his learning style. It even has little printable readers. (I’m trying to decide if I print them or see if it’s possible to throw them into an e-reader format to save on printing). I’m excited to grab a little bit of playroom time tomorrow morning so I can get it downloaded and start working on it.

One last bit of news, then I have to post this and get to bed. My eyes are drooping. Patrick’s transplant coordinator called this afternoon. The great news is that his prograf level is finally in range. Just barely, but it’s there. That’s the first time in a week. That means no medication adjustment. It also means that we get to switch to twice weekly labs. And THAT means that we can sleep in in the morning if we’re tired. At least till meds are due at 9.

However.. you probably wont’ get to read this until then because I am just plain too sleepy to go hunt down an internet connection until morning.