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

 

Transplant Day 1,214 and Tonsils

This is a bit of a catch up post and it may be long. I write today from Patrick’s bedroom. He is lying in bed watching Cars 3 running a Powerade drip into his g-tube on day 5 post tonsillectomy and adenoidectomy.

Patient Zero

How did we get here? Well let’s rewind to the day before Christmas break when I noticed that I had a fever and a horrible neck ache. It likely started with me, though it was Christmas break and I never did get diagnosed with anything more than a virus causing crazy swollen lymph nodes.

The Onset

Mid-January, Patrick got sick. We thought at first it was a cold. He had an ear ache and I took him in to urgent care to be checked with me for an ear infection where we were told it was just one of many viruses, no ear infection. But he got sicker and sicker and on the 3rd day when he refused to eat and I looked and saw the size of his tonsils all covered with white spots, I took him to the pediatrician. She ran a strep test, which came back negative. And we were told again to just go home and wait out the virus.

Sometimes I’m good with that answer. Especially with a kid who’s immune suppressed. But sometimes the mommy spidey sense goes a little crazy. (Ok, ok. It’s actually the extra guidance mothers sometimes get through the Holy Ghost when their children need help.. but we call it mother’s intuition.) Anyway, this time I didn’t feel settled with that answer. So I texted Patrick’s GI and told him what was going on and asked if he had any concerns from a transplant perspective. He called me back almost immediately and told me that he wanted to know what was making Patrick sick so we could stay ahead if it was one of the big viruses that are dangerous for transplant patients.

Diagnosis

So the next morning at 7 a.m. Patrick and I headed up to the hospital’s outpatient clinics where Patrick’s doctor met us and arranged for labwork, an exam, and a viral panel. It was a long morning with a couple of hours of tests. And then we headed home. By evening, all of the preliminary viral tests had come back negative. Despite the brutal flu season, Patrick didn’t have Influenza, RSV, or any of the other circulating respiratory viruses. The doctor said good news. I felt even more at a loss.

Meanwhile, Patrick just kept getting sicker and sicker. We camped out in the basement and I had to start using his g-tube to keep him fed and hydrated. He was miserable. I was exhausted. And I just kept checking for lab results because as the day went on, I became more and more convinced that with everything else ruled out, that Patrick must have the Epstein Barr Virus (EBV), commonly known as Mono.

Sure enough around 4 p.m. the results for that test came back positive. I texted the doctor and said “what’s next?”

Some history

I’m going to take a break in the story here to make a confession. Part of the transplant workup is a very long afternoon where you sit in the room with a transplant nurse and they explain to you in detail all of the risks associated with transplant. You’re aware of a few of them. Of course the risks of surgery. And rejection. Susceptibility to illness. But there is so, so, so much more that comes with immune suppression and transplant. Activity restrictions. Diet restrictions. And perhaps the worst is something called Post-Transplant Lymphoproliferative Disorder (PTLD).

PTLD is caused when a patient who didn’t have EBV before transplant. When they catch this virus the first time while immune suppressed, it can cause the lymphatic system to go a bit crazy. It involves into a form of cancer called lymphoma. So, yeah, transplant can lead to cancer.

And the day that sat us down and talked to us about all of these restrictions and risks, especially this one, we were so overwhelmed by the understanding that the treatment called transplant was much more of a trading in of problems than the cure all the happy ending stories on TV had showed us.. we were so overwhelmed that we couldn’t even stand to talk to anyone that day.

3 years later in another evaluation, we knew this information was coming. But it was still hard to hear and even harder to talk about. So, well, we didn’t. We just warned you that transplant wasn’t a cure.

PTLD workup

Returning to the current story.. I talked to Dr. Jackson in the early evening and he reminded to me that more than my immediate concerns about having a kid with mono, we needed to be thinking about PTLD. I thought we’d set up testing within the next couple of days. But when he called back just after we put an exhausted, sick Patrick to bed to stay he wanted us to come in to be admitted the hospital right away, we were a little caught off guard.

And so we advocated for the value of rest and protection from other illnesses and Dr. Jackson consented to try to set something up outpatient.

But at 5 a.m. he texted and said that admission was the best way to make sure Patrick got in for a CT scan right away. They needed a CT scan of his entire body to check to see if there were signs of PTLD. And he said to prepare to stay for an emergency tonsillectomy.

So that’s what we did. Headed in prepared for the worst and hoping for the best.

Patrick did amazing in CT. We thought he might need to be sedated to hold still. But then decided that he is most cooperative when he’s helped to understand what is going on an given a chance to cooperate. When he feels in control. We got lucky in that we were able to get Patrick’s favorite child life specialist there right on time to go down for the scan with us. And though he was nervous, he was very brave and still.

In the end, the CT scan came back negative for PTLD. (Though it did describe in pretty amazing detail the way that Patrick’s vascular anatomy has changed as a result of his lost central venous access.) So they treated him with an IV antibiotic for a raging ear infection they discovered when he came in. And we got to go home.

Getting better

Patrick actually did get better pretty amazingly from the EBV. His immune suppression is pretty low right now because he’s had no issues with rejection. And so the virus mostly ran its course in a couple of weeks. The blood tests went from virus counts in the tens of thousands to “unquantifable” low levels.  Patrick’s appetite and energy came back. And the doctors agreed that Patrick had had just an acute case of EBV and had fought it off.

However, his tonsils stayed big. Not just a little enlarged. So big that they were touching each other big. So large I couldn’t understand how he could swallow big.

And, well, EBV is a tricky little virus. I’ve learned a lot about it over the past month. And one of the things I’ve learned that there’s a family of viruses that stays forever in our DNA. Chicken Pox, herpes, and EBV. That’s why you only catch them once. That’s why they are sometimes reactivated when we are stressed. (Shingles, cold sores, “mono makes you tired for months!).

And because EBV lives mostly in the tonsils, their not getting smaller was a problem both clinically and because it meant a long-term greater risk of PTLD.

Meeting with ENT

So we scheduled an appointment with an Ear, Nose & Throat doctor who took one look and said there was no doubt. Patrick’s tonsils were huge and even without transplant concerns, they needed to come out.

We didn’t spend the visit discussing the need for tonsillectomy. We spent it talking about the problem of pain control when ibuprofen wasn’t allowed. Because that’s one of those lifetime commitments you make with transplant.

Tonsillectomy and adenoidectomy

So Patrick had his surgery on Thursday. We were told 30-45 minutes for the procedure. That’s what I expected, too. I’ve sat in lots of surgery waiting rooms watching ENT doctors go in and out every 30 minutes as they reported about placing ear tubes and taking out tonsils. I often wished I could be one of those parents whose concerns were as brief and uncomplicated as those parents. I felt a bit arrogant at times that I was the one who knew the waiting room attendant by name. Who came to stay there.

So it was strange to be in that “simple procedure” role. Except that, of course, we weren’t.

The doctor came out after a little more than an hour to finally tell us that the procedure was done. That the tonsils really were huge enough to need to come out and that the adenoids were even bigger. That Patrick was doing well, but there had been some “oozing” that had made the procedure a little more complicated. And that he’d be awake soon.

And then an hour later, when they still didn’t call me back to the PACU, despite our insistence that Patrick needed us there when he woke up of he’d be combative and inconsolable, the phone finally rang for us. It was an OR nurse who explained that Patrick had continued with “oozy” bleeding and they’d spent all that time trying to get it stopped.

So we waited some more and the doctor finally came back out to say that things were finally settled. And he thankfully hadn’t needed a transfusion. In all, the procedure took 2 and a half hours. We were at Patrick’s side to help wake him, and then moved to post-op.

Observation

Patrick was what they call a status A-11. Meaning he wasn’t admitted but he wasn’t discharged. He had 23 hours that he could stay for observation without having to involve the insurance companies for authorization. So we spent the night in Post-Op Recovery.

Patrick was really inconsolable as he first woke up. He just cried and whimpered and wouldn’t talk. Would barely open his eyes. Finally, I left the room to go to the bathroom and as I listened, I realized he wasn’t as much in pain as he was just angry. So I tried a crazy approach where I came in and told him to stop pouting. Then tried to distract him. I made him start taking sips of water despite protest then pointed out that it helped more than it hurt.

It amazingly worked. His anesthesia wore off. His pain meds kicked in. And he woke up sore but pretty happy. We ordered dinner and he wanted some. And soon he’d eaten 3 yogurt cups and drunk some Kids Boost. But the anesthesia made him nauseous and he couldn’t keep much down.

The night was rough. We turned on the movie channel and let it play all night and would doze off and wake again. Eventually as the anesthesia wore off his pain overwhelmed his hunger and he stopped eating. He’d fall asleep but the swelling in his airway made it so his oxygen levels would fall and the monitors would alarm and wake him again. Or he’d start coughing. And his temperature started to creep up very slowly.

But we made it through the night. Post-Op was so very quiet. Our nurse was great. And by morning, I thought we were in pretty good shape. I even though we might beat the odds and go home at 23 hours after all.

And more observation

When ENT came to check in, they decided they’d like to take a little more time to observe. So they moved us to a big comfy room in the surgical unit. And we watched. And what we saw wasn’t exactly comforting.

Not having ibuprofen was proving to be problematic. See, ibuprofen is an anti-inflammatory and inflammation is a big issue with tonsillectomy. It can cause fevers. It can cause airway narrowing. And of course, there’s the problem of finding a balance with pain control when you have to use an opiod.

It took the whole day and night to get a handle on using the g-tube to keep him hydrated and his gut moving, to figure out how to help his cough and keep his saturation up. And to make sure the fever wasn’t getting worse.

They did a chest x-ray to rule out pneumonia. But did advise us that with that long of a procedure, Patrick’s lungs would need help to refill the air sacs.

Home again

But after a second night, we finally reached a stable baseline and headed home. The first day home Patrick was just exhausted. He fell asleep anytime he held still. Wherever he was. They warned us day 3 is the most painful and, well, it was.

Yesterday, he started to perk up a little after a good night sleep. I finally was able to convince him to start sipping some water. And he even ate a little bit of macaroni and cheese. Which wore him out.

But he started to play and tease a little bit. It was good to see his smile back. And our bird, Max, followed him everywhere he went.

He fell asleep by 5 p.m. But that’s good as his cough has gotten worse again overnight. But his pain is a little less, he’s more awake. And before I finished this post, he happily though tentatively ate some KFC mac and cheese for lunch.

This recovery is a slow process. And unfortunately, Patrick’s having to do it the hard way. As caregiver, I am very tired. Sleep, food, and personal care have been hard to come by.

But we’re getting there. And it’s only supposed to last 7-10 days.

And on the other side, my son is acting completely loving and smitten with us, instead of his usual independence seeking self. I’m going to soak up every minute of a cuddly loving boy who just wants to be with me. Because soon he’s going to really be too big to hold on my lap for half an hour.

I hope to post more updates. But remember, as always with this blog. Usually the times I’m quietest are the times that are calm. If I’m not writing, it probably means that we’re busy and happy.

Transplant Day 804 and Look Ma. No lines!

**Composed yesterday in the surgery waiting room**

This is a good news post. But I’m finding myself so very out of practice at writing updates in the surgery waiting room that I am having a little bit of a hard time getting started.

At 7:30 this morning, we kissed a very drugged and giddy Patrick goodbye at the O.R. doors. He is having his port removed today. We haven’t needed it in a while. We left him with a central line because this his veins are so scarred that putting in a new line will certainly be difficult. This port has been so much healthier than any other central line he’s had before. And it saved him trauma with labwork. We didn’t feel any rush to get rid of a line

But this summer Patrick’s bloodwork started to come back so stable and consistent that his decided to switch labs to every other month, the port became more effort and risk than benefit. (They have to be flushed every 30 days regardless of if they were used.) We knew we’d need to have a talk about removing the line soon.

Last October, we took Patrick for his annual transplant checkup. When we raised asked the doctor if we should be considering taking the port out, he was surprised to find it was even still there. There was no question that it was time. Soon… But of course, we still took our time.

We allowed time for the doctors here to talk to the folks in Nebraska and know what would be involved in removing a direct superior vena cava line. We tried to wait for the end of cold an flu season.

But also at Patrick’s follow-up in October, the doctors decided to stop Patrick’s prednisolone, which was a major part of his immune suppression. Within two weeks, he started to have a severe pain in his side. After about a week, a small bump finally formed. And when we took him on a rollercoaster ride, that bump burst revealing a small abscess.

For some reason, one of the dissolvable stitches in Patrick’s ostomy scar never dissolved. It just stayed there as long as his immune system was heavily suppressed. But as soon as the prednisone was gone, his body started to rebel against a foreign body. He’s had a recurring abcess for several months now. Just a little pimple that would rise and fall. But it hurt like crazy. And that’s what finally got us here.

So here we are. An hour after Patrick went back, the surgeon was back out to report that all had gone well. He’ll have a little bit of an open wound where the abscess was an a pretty sore area on his chest until the space where the port was heals.  But overall, this should be pretty easy.

We’ve taken the port for granted for the past year or so. That makes this transition a little bit simpler. But the simple realization that Patrick has IV line for the first time in his life is a little bit disorienting.. miraculous.. scary.. comforting.. umfamiliar.. splendiferous!

Now not every fever could mean sepsis. Now he’ll have to have labs drawn from the shoddy veins in his arms. Now we won’t have to wake up early once a month to apply numbing cream before the port is accessed. Now we may not have numbing cream at all. Now he won’t have to protect his chest to play. Now it matters more if he eats and drinks. Now we won’t have to worry if a clot is forming. Now he may not automatically qualify for nursing. Now there’s one less thing that makes him different from other kids.

But really, it’s about time. Because I keep forgetting that it’s time to access his port. And I keep forgetting to tell doctors he even has one. He really didn’t need it anymore.

I’ll leave you with the words of a song that Patrick is singing or making me sing at least once an hour right now.


“I feel better, so much better
Thank you doc for taking all the ouchies away.
I didn’t feel so good till you fixed me like I knew you would
And I feel better. So much better now.”

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

February means…

Hi there! I’m typing to you from a laptop that is sticky with starburst fingerprints. It’s been quite the day. We’ll call it “February isn’t over yet.”

If you deal with chronic illness, especially in a child, you know that February is something to be greatly feared. Sure, I bet when you think of cold and flu season, you probably think of, oh, say December when everyone’s sharing colds around as they visit each other for the holidays. February is much, much worse. February is respiratory illness wonderland. it’s when the hospitals fill up to overflowing and they start putting beds in the broom closets.

According to Facebook’s memories, Patrick has been sick and often hospitalized pretty much every February of his life.

I wasn’t sure how we’d managed it. The children at Patrick’s school are walking around looking like death. Everyone we know has been sick. And yet, our immunocompromised superhero has been healthy.

Well… had been healthy.

This morning, Patrick did something he’s never done before. He told me, “Mom, I think I have a cold.”

Please note, this doesn’t mean he’s never had a cold. He’s had lots of cold. Doozies of colds. He’s been admitted to the hospital over many, many colds. But because of that exact fear. Being sent to the hospital… he doesn’t admit to being sick.

I was super proud of him.

And I decided to listen to him. Patrick really isn’t very sick. If he hadn’t said anything, you might not even know for sure anything is up. He is so good at pushing forward through things. But he’s been extra sleepy. A little grumpy. Restless. And has had a bit of a cough. Today, we added on an adorable nasal-y voice.

But, really sick or not, Patrick already had a checkup scheduled at the hospital at noon. And so he was going to attend less than 2 hours of school anyway. Which means no credit for the school day at all. And so – we kept him home.

One thing that all these years of medical surprises has taught me is how to throw all my plans to the wind and dive into super parent mode. I did pretty darn awesome today, if i do say so myself.

Because he wasn’t crazy sick. And because he LOVES schoolwork more than just about anything. And because yesterday we tried resting and watching TV which only led to a very restless child… I told Patrick he could stay home but only if we did school at home.

I let him take a longer bath and while he was in the tub I e-mailed his teacher to ask for a list of spelling words. I roped off Howie’s office, since he was working from home today, which is a huge temptation for them both. And then, while he played with toys for a bit, I hopped onto Teachers Pay Teachers and downloaded some freebie homework sheets for him. Some math. Some reading. A cut and paste word family page. AWESOME stuff! It is so much easier going and getting him relevant homework when I’m not trying to pull my own curriculum out of thin air.

And then, after doing a few pages of work, I pulled out the chromebook and i logged him into the websites that he works in during computer lab at school and set him to work. We had a blissful half hour where he worked independently! Then we went to the backyard and had “recess” and talked about what to do next.

Patrick voted that he wanted to eat lunch in the hospital cafeteria. Don’t fault us for unusual comforts developed over the years.

So we packed up early and drove off to the hospital. We started out in the outpatient building’s cafeteria but alas, they had a menu that was more fancy than comfort food… hospitals do that sometimes so the staff won’t get bored of what they eat. But thank goodness the main hospital cafeteria still peddles good old comfort food fare. We got Patrick a bowl of macaroni and cheese while I grabbed some deli-case sushi. (Again, don’t mock our comforts). Then we picked up two rice krispie treats and a carton of milk and booked it back to the outpatient building for his appointment.

We checked in, weighed in, checked vitals, and then set up lunch in the exam room. A family tradition.

The checkup went well. Our experiment in g-tube boluses of carnation instant breakfast has paid off in some weight gain. And, though they were a little disappointed to hear that his diet isn’t currently all oral, his doctor pointed out that “that’s why he still has a g-tube after all.” and the dietitian agreed that it might help train his stomach to want food at the times we’re giving him these extra feeds and that’s good. We talked about some longer term strategy.

And then Patrick talked his doctor into drawing him a picture of a monkey as a “prize.”

This appointment went remarkably quickly as far as GI visits go. We can sometimes be there hours. This time we were done by 1.

And so, not wanting to referee “don’t bug dad at work” time too much longer, I offered Patrick a field trip.

He’s been working on the astronomy-with-a-cute-name belt buckle in cub scouts, so we stopped at the planetarium to help him with that requirement. It was a madhouse. There were at least 2 school field trips there. But Patrick seemed relieved to run wild with the other children. And I still managed to point out and describe the planets to him, and telescopes, and other astronomy stuff. Then we stopped in the gift shop and let him pick out a bookmark/ruler with the planets on it. And amazingly, he was reciting some of the names back to me. He is very offended that Pluto isn’t on his bookmark, even though I tried to explain dwarf planets. Aren’t we all.

Anyway… home again and this time convinced him to take a nap.

He woke right on time for me to tuck him into my bed to watch Blues Clues while I threw together dinner and tidied up the house before our next appointment.

A nurse came this afternoon to officially admit Patrick for respite nursing through the Utah Medically Complex Children’s Waiver. This is on top of the other respite we already have and feels a bit splurgy. But it’s required for him to participate in the waiver. And it’s required that it be done by a nurse. So we are doing it.

Patrick was a total flirt with the admitting nurse and she played along beautifully. Meanwhile, I did my best to communicate a clear medical picture. You know you’re a medical parent when you know which diagnosis needs to be listed in each system. And when you provide a list of medications in writing so they don’t give a copy back to you.

Anyway… that done, I cooked dinner and Patrick played with the chromebook. Don’t tell him that we bought this thing largely for him. Because you can’t tell him it’s his. He wants it. But that means he wants there to be no rules about it. And besides, I like to blog here.

While dinner cooked I managed to convince Patrick to do one math worksheet. And then after we ate, we sat down and had him practice writing out his spelling words. I told his teacher I didn’t think he was being challenged and now he had 5 words again this week. Usually, that would be just right. Today though, he wasn’t feeling great and he wasn’t happy to do so much writing.

Bedtime finally came and he got exhausted quickly. We scrapped our Family Night plans and just worked together for a quick bedtime. Complete with antihistimines (he’s not allowed any other cold meds) and vaporub and a humidifier. He was asleep in minutes.

I don’t know what tomorrow will bring. Howie and I are for sure also coming down with something. And i’m not sure Patrick will be up for school tomorrow. But it’s labwork morning so we’ll be up bright and early regardless. Doesn’t hurt to see how being sick is affecting his body. And we’ll go from there.

If I don’t post soon, you can probably assume that Patrick slowly got better and needed lots of my attention, and then one day he was better and I looked around and realized just how much else I neglected while in super mom mode. Anyway – usually on this blog no news is good news.

Happy February.

 

p.s. If you want to know just how nasty the cold and flu season is at any moment in Utah, check out this website https://intermountainhealthcare.org/health-information/germwatch/

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….

Feeding Tube Awareness Week

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Once each February, a week is dedicated to helping raise awareness about tube feeding. I feel like the past 7 years of our lives have been a walking tube feeding awareness ad. If you haven’t picked up on the fact that you can lead a full and happy life while being tube fed, then you haven’t been paying attention. And so I try not to get too vocal during this week.

However, this week, just on time for tube feeding awareness week, Patrick has started to require supplemental feeding. And so I’m going to take a minute anyway to explain what a frustrating blessing a feeding tube can be.

Since last October, we’ve been trialing having Patrick eat 100% of his calories. And he has lost weight ever since. At first it was really rapid. That wasn’t a surprise. He wasn’t used to eating that much and we dropped a lot of calories and hydration very suddenly. We’d fattened him up and he had room to learn.

He really did a marvelous job picking it up. In a couple of weeks he figured out how to drink enough to stay hydrated. And he picked up meal and snack times pretty well. But he just kept losing. We’ve added more snacks. We’ve added more butter and fats to every meal. We started giving him milk at every meal. We added protein shakes.

But months later, he is still losing, even after “doing everything” that his dietitians could think of to recommend.

There just don’t seem to be enough hours in the day for Patrick’s belly to take in enough food. He gets full and uncomfortable and doesn’t want to push more food.

Eating is such an emotional thing. It’s social. It’s bonding. It combines smells and tastes with memories. But what if your memories of food weren’t positive? What if for years eating made you sick? Was always high stress? What if you were expected to dive in suddenly at a level of eating skill than other kids took 7 years to master? And what if the stakes were so high that everyone was watching to see if you did it? And when you felt completely stuffed, you were always being told “just one more bite”?

Patrick was losing weight. And I found that I was pushing too hard. Worrying too much about making sure Patrick got enough calories and then getting really upset when he didn’t eat what was put in front of him. And that pressure was actually causing us to lose ground. Making Patrick not like foods he’d once loved.

So we’ve turned again to the feeding tube. Just a little. A week ago Brian suggested that maybe we should start giving some carnation instant breakfast first thing in the morning when he wakes and last thing before bed. We know it helps his belly wake up. And it would give him extra calories.

The first day that we did it and he wasn’t hungry for breakfast after. I had a good cry about losing breakfast. Losing progress. Not fully achieving the miracle. But Howie convinced me to give it time. And now I see that, this way he’s getting the same morning calories. Plus he’s hungry for a snack and to eat his lunch at school.. something we’d struggled with. In other words, Patrick seems to be better off this way. And maybe I was looking the wrong way at miracles.

I’m finding myself humbled and grateful for medical technology that can help him yet again. I am remembering that just because all struggles aren’t gone, it doesn’t mean a miracle hasn’t happened. Not all healing means perfect health.

Do you know that tube feeding is so new, even in the United States, that Patrick’s GI doctor was the first to place a g-tube (stomach instead of nasal feeding tube) at his our children’s hospital? That it’s so new that there are countries where the technology is only still just being taught?

We take it for granted. This ability to feed patients who otherwise couldn’t eat enough. I’ve even heard people say it’s weird, gross, unnatural. But really, it’s amazing! Minimally invasive. In fact, I often wish every child could have a button. That I could have one myself. I know hundreds of families with feeding tubes. I can count on one hand those who weren’t immensely grateful for them. Who didn’t feel that they exponentially improved their child’s quality of life.

Hopefully, we’ll only need this little bit of help for a while longer. Just enough to take the “Please eat so you won’t die” sort of pressure off of learning to eat. Please note, “Please eat so you don’t need a feeding tube” doesn’t work. Patrick knows from experience that being fed through a tube is exceptionally convenient and comfortable. Fed is fed. And it’s so stress-free he sees no reason to avoid it. I mean, seriously, if you could just keep doing the things you love without having to stop to eat or drink, wouldn’t you choose that too sometimes?

However, we are finding it’s possible to take a bit of the hunger/starvation edge off of learning to eat this way. Just enough feeding to help his belly move. Just enough calories to help him grow but let him be hungry. And hopefully soon, Patrick’s love of food will help him overcome some of his fears. And he’ll need less and less of the help.

But in the meantime, isn’t is wonderful that we don’t have to do it without help?

Tubies of the world unite. Or some other catchy social media phrase meaning tube feeding is awesome.

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From November to February

It’s been 3 months since I last wrote. 3 months since Patrick’s one-year transplant anniversary. 3 very busy, full and blessed months. And I have kept meaning to write but it was all just going by so quickly, so busily, so trying-to-keep-us-moving-forwardly that I haven’t. Since I’m catching you up, this could be a long one.

This time last year, Patrick was finally showing improvements after a very terrifying battle with “the stomach flu,” also known as norovirus.. something I will never take for granted again. And I wasn’t telling any of you, but the doctors in their morning rounds were talking about how, if Patrick was able to start to tolerate feeds again, they didn’t have any transplant-related reasons for keeping him in Nebraska. We didn’t believe them. We didn’t even dare hope it. And yet, two weeks later on Valentine’s weekend, they sent us home.

In the three and a half months between Halloween and Valentine’s Day, Patrick made such amazing strides. He proved to us that miracles do happen.

And this year, he has done it again. He has come SO far in the past 3 and a half months.

November was challenging. We had a wonderful birthday trip to Disneyland that I have great intentions of sharing with you later. We started out sentimental about transplant. But honestly, after about half a day of the celebration we were ready to start celebrating not where we’d been but where we were going. And so, celebrating his birthday was extra sweet and the beginning of some amazing new things.

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One of Patrick’s favorite activities.. tracing letters. Best done hanging off of something.

When we left on the trip, Patrick was struggling with the transition to school and with potty training especially. I was spending my afternoons at the school trying to find a way to help him through his anxiety. That was a theme of November. Visiting the school and trying to help him to not be afraid and to mediate a peace between him and his aide as they were locked in a battle of wills over the issue.

And then, like that, he succeeded. And we threw a bit of a party for him. We literally danced right then and there. And then another day I was late and when I got there, he didn’t need me after all and I snuck away without him knowing I’d come. And slowly I was able to slip away.

However, with that battle of wills over, Patrick shifted his battle to be more directed at his aide. We started to have big behavioral problems with him at school. One morning, Patrick was avoiding getting ready for school and then he broke down and he cried. He crawled up in my lap and he told me how discourage he was there. And I didn’t know how to help him and I cried, too.

And after two miserable weeks, Patrick’s monthly bloodwork revealed that his Prograf levels were sky high. No wonder he wasn’t happy! He was always grumpy and angry and uncooperative when his levels were so high. So we adjusted the dose and the next day he was back to himself again.

And I did some research and some talking to doctors and some praying and realized that when we’d discontinued Patrick’s tube feeds at the beginning of November, he’d started to take his evening meds on an empty stomach.

It was a big ah-hah! So at an appointment with his GI, where we already were talking about how to push more calories because he was starting to lose weight, we decided to give Patrick a glass of Carnation Instant Breakfast, a.k.a. “chocolate milk” at bedtime. And his levels came back down and you could tell he was feeling better.

The idea at first was to give protein shakes by g-tube. Problems is, Patrick thinks it's super fun to drink from a syringe. So most "boluses" end up given like this.
The idea at first was to give protein shakes by g-tube. Problems is, Patrick thinks it’s super fun to drink from a syringe. So most “boluses” end up given like this.

Well, except that he had gotten into a habit of butting heads with his aide. I started having the teacher send home reports of Patrick’s behavior each day. With meds right, most days were better. But we still had some iffy days. And I started bribing Patrick with vanilla tootsie rolls to stay out of trouble at school.

I don’t know if that was why. She doesn’t say it was. But at Christmas break, Patrick’s aide quit and a new aide was hired. The new girl working with Patrick is young, but has a gentler touch and they seem to be getting along. Patrick has gotten a tootsie roll every day since she started. And since they have no potty training history, that problem is a distant memory.

In fact, we’ve shifted from regular accidents to waiting to let Patrick go to the bathroom. We were terrified that dairy was going to be bad for Patrick’s gut. It can be for other intestinal transplant patients. We were really told he’d never be allowed milk. But instead, since adding cheese (Patrick’s absolute favorite food to the exclusion of all other foods), Patrick’s gut has adapted better than we ever imagined.

It’s been a little bit of a difficult transition for Patrick. To go from chronic diarrhea to not. To have his belly feel full in the mornings. He wasn’t much of a breakfast eater before. But now some days it takes a lot of coaxing and imagination and bribery to get him to eat and allow his belly to wake up in the morning. He still does not love going to the potty. And we are often late in the morning as a result.

The biggest problem with this new problem is that it isn’t good for Patrick to refuse to eat. He has lost weight constantly since tube feeds were stopped. At first, it was a lot. He lost very quickly. We’ve been adding calories everywhere we can. Extra butter. Lots of cheese. (Lots, and lots…like 10-servings-a-day-lots). Switching to whole milk which is offered with every meal and also at bedtime. Allowing him to snack from the moment he comes home until an hour before dinner and then to snack again till bedtime, when I offer a “second dinner” if he wants it. I’ve tried “bolusing” extra calories when he refuses to eat. That means, using a syringe and gravity to give milk through the g-tube. But some days his belly is so full that it literally won’t flow in.

Some of the problem is oral aversion. With so many hours a day at school, I can’t really afford using dinners too much to teach Patrick to eat new foods and his repertoire of safe, familiar foods is very limited.

But some of the problem is just anatomy. I’m not sure we can afford to fit many more calories into his waking hours. If he doesn’t at least maintain his weight this month, we may have to go back to some tube feeding.

But that is the medical news. It’s what is turning my hairs grey and giving me wrinkles. But it’s only part of the story.

We had a wonderful Christmas. I feel so blessed to have had a quiet Christmas at home. We bought Patrick his first two-wheeler bike. He took to it immediately and, even with snow on the ground EVERY DAY since the week before Christmas, he has been riding it regularly. We took him out once or twice a day during Christmas break. Because he’s big enough for a 20 inch wheel, you have to jog to keep up with him. (Once we lose the ice, I’ll start riding along-side instead.)

But after a couple of weeks, he fell. It took a couple of times that he was terrified and refusing to ride before we realized that one training wheel was slightly loose and he didn’t feel as steady. So daddy tightened up the training wheel and we told him that he just needed his helmet and he’d feel brave again. That helmet is working like Dumbo’s feather. With it, though he’s not quite as fearless as he was at first, he’s back to flying around the neighborhood everytime the sidewalks are clear enough.

Another big thing that happened in December is that we got Patrick into a psychiatrist. Patrick’s been seeing a psychologist for a few years now. But a psychologist can’t write prescriptions. So, after much discussion and after seeing that Patrick was becoming medically stable enough, we decided it was time to try medication for his ADHD again. Stimulants like ritalin still aren’t an option. Not with their major side effect being appetite suppression. But his doctor suggested a drug called “Clonidine” for impulse control. It’s also used to treat high blood pressure, drug withdrawal, and anxiety. And the transplant team felt that it was an absolutely safe choice to start with. So Patrick’s therapist called a colleague and told him exactly what she wanted him to prescribe.

In December we started giving Patrick a “crumb” of clonidine before and after school. The change was profound. He started to be able to sit through some of church. He started to be able to stay focused on a game or toy that interested him. He calmed down at school. He didn’t have to be reminded to pay attention to his homework. The difference was night and day.

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Of course, it also decreased his blood pressure which made him so tired that he started to fall asleep by 6 p.m. So we had to adjust dosing times a little bit. Now he takes one quarter pill in the morning when he’s well-rested and it carries him through the school day. When I pick him up, he’s starting to get a bit “bouncy” and we let him stay that way. Afternoons are free play time in our house now so that he doesn’t get in trouble for the extra trouble with impulse control as easily. And then at dinner, he takes his second pill. It makes it so he can get through his homework in half an hour instead of 1 or 2 hours or more. And then he starts to get sleepy just on time for bed. And as long as he takes a nap to catch up on sleep on Saturday, this mostly work ok.

Feeling calmer, Patrick’s finally able to get back into more of the kid things that he has loved to do but couldn’t stick with before.

Our church schedule changed from 11 a.m. – 2 p.m. to 9 a.m. to noon. Since this is his very best time of day, and because he’s not distracted by being hungry, he’s able to go to his primary (children’s sunday school) class with an adult helper. (Who is amazing for him.) And then instead of hanging out at the back of the room oblivious to what is going on, he’s sitting with his class and much more engaged in learning.

They gave a challenge to the kids to memorize a verse of scripture last month. So I put a key portion of it on a piece of paper and he read it every day until he could recite it by memory. Then last week, he stood up and recited it in front of the other kids. He was SO proud of himself!

His reading is coming along. So is math. They’ve been teaching him how to use touch math for addition and he’s catching on and starting to believe me when I tell him, “You can be really good at math.” His writing is improving enough that he is handwriting most of his assignments. This can still be frustrating for him sometimes. And he still has a ways to go. But it’s getting better.

With his focus so much better, though, I can see how much memory still gets in his way. He really truly just forgets things. Especially names. PLEASE BE KIND if he asks you your name, even though he’s known you for his entire life and should be able to remember it. I’m beginning to believe that this is a trait of his brain injury. He still misses numbers when he’s counting. He still gets stumped on words I know he knows when he’s reading. And I think it’s a problem with recall that he can’t help.

That makes it all the more amazing that he’s succeeding at memorizing scripture. We’ve picked two more to work on this month. There are some very amazing and specific promises related to scripture study. Especially study of the Book of Mormon. And I have seen that EVERY time that we have used scripture to help Patrick work on a goal that we believe might be impossible because of his injury, I have seen him meet and exceed those goals. Those promises from the Lord are real and can work miracles.

Anyway – I have a lot more to catch you up on. And we have a lot of new milestones ahead of us this month. And so I’m going to end this lengthy post here for now with the hope that I’ll be able to fill in more later.

We are grateful to those of you who have helped us through these last few months. It is not easy to learn to eat, potty, read, write, add, attend school, attend church, make friends, control your temper, and pay attention all at once. I know I couldn’t teach it all myself. So thanks to those who’ve been there to help. And to listen and offer counsel when I’ve been discouraged.

Thanks to transplant, we have a lot of living and learning ahead of us. More than we hoped could be possible. And this has been a big growing season for us as we’ve come to realize that there is a path that lies ahead, and we have begun to try to learn to navigate it.

This parenthood thing.. it’s a lot harder than I ever imagined. It’s forcing me to become a better person than I knew I needed to become.

Happy Transplant-a-versa-hallow-birth-day Patrick

This post is quite belated. November was a challenging month which deserves its own post. But I would be quite remiss to skip over a post about Patrick’s exciting October 31.

This year was a huge milestone. Patrick’s 7th birthday. And the one year anniversary of his transplant.

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Last year, we spent Patrick’s birthday anticipating transplant. I had only just wrapped his presents and gone to bed when the phone rang telling us a donor had been found. Around midnight, we were our local children’s hospital being admitted and transferred for insurance purposes and bidding goodbye to Patrick’s faithful GI doctor. A little after 1, we boarded a life flight plane. We were awake (and tearful) all night, arriving at Nebraska Medicine around 6 a.m.

We caught a little bit of sleep and then tried to cram in as much birthday and Halloween celebration as possible. Around 1 p.m. they took Patrick down to have a central line placed and he was kept asleep for the rest of the day.

His long-awaited and sorely needed multi-organ transplant was an amazing birthday gift. The kind of gift from a stranger that still takes my breath away.

However, from a celebration standpoint, that wasn’t much of a birthday. And so, this year we decided that we had a LOT to celebrate.

So, several months ago, we asked Patrick’s transplant team if it was safe for him to celebrate in Disneyland. And they answered with a very emphatic “YES.” In fact, all but swore they’d do everything in their power to get him there. And so, we bought tickets and made plans.

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Parent teacher conference fell just right to give a long Halloween weekend. We left for Anaheim Wednesday night and I couldn’t help see both parallel and contrast as we touched down in the dark and traveled to our room exhausted from a late night of travel.

Here’s some of the highlights from the rest of the trip.

Thursday

We stayed for 3 days. In my mind, a day for each occasion: Halloween, Transplant & Birthday. When we checked into guest services to request a disability card that would allow Patrick to wait for rides without standing in lines. When they asked why and I explained that he was celebrating his transplant anniversary and is immune suppressed, they handed us all I’m Celebrating badges. Patrick insisted we wear them right away.

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Disney Cast Members are trained to watch for badges and offer congratulations. However, I’ll admit that few expected our answer of celebrating a year since transplant. It started to feel a bit strange to keep explaining, so we snuck the badges off when we went back to our room and didn’t pull them back out till we were celebrating birthday.

We decided to head straight for the ride that Patrick loved best last trip. Radiator Springs Racers. What we didn’t think about was that Patrick always has had a good chance to warm up on calmer rides before this fast ride with big ups and downs. He was terrified. But insisted we go again and, well, after the second go broke down crying during the ride. He’s a thrill seeker, but this year Patrick also finally had a sense of fear and we had to be a little bit more careful what he rode on.

We abandoned that plan. And switched to kiddie rides in Bug’s Land. Patrick was much happier there. In fact, he had an awesome time there!

After an afternoon break and nap in our room, we got dressed in our Halloween costumes and headed back to Mickey’s Halloween Party.  Patrick had asked to dress as mechanics, so I’d put together some family costumes of Mater’s Pit Crew. We headed to Cars Land to take a couple of pictures and the costumes attracted extra attention from cast members who offered pictures and even some fast passes and we ended up there longer than planned.

Unfortunately, as we arrived at the gates to Disneyland Park, we realized that we had forgotten to pack Patrick’s evening meds. Howie bravely headed back alone to get them while Patrick and I headed in to find something to ride. With crowds as they were, we were just getting onto the first ride when Brian caught up with us.

We rode a couple other rides in the dark. Then decided to give trick or treating a go. We’d planned to skip it, but when we discovered that there were lower sugar nut free treats available in each cart, and when Patrick was having a great time with it, we hit a few more trick or treat lines. We caught the electric parade and then watched the halloween fireworks before heading back to our room.

Friday

Friday was incredibly busy in the park. That meant fighting crowds in a lot of places and we didn’t ride as much as usual. We did the obligatory multiple rides in Autopia, met a couple of super heroes, and then decided to let Patrick try a couple of grown up rides as he was seeming braver. The was the first time we’ve tried Matterhorn. Unlike other rides, the Matterhorn bobsleds don’t allow for sitting side by side. The meant Patrick couldn’t bury himself into daddy’s side.  I guess he found it fun, but scary. The ride stopped and I turned to see if he was ok (remembering tears the day before). Patrick was lying down in the bottom of the sled.. laughing. I guess it was scary until he got where he couldn’t see.

Big Thunder Mountain Railroad was open for the first time in the years we’ve taken Patrick. He was nervous on this one, but actually really enjoyed it. He asked to ride it again, but with crowds as they were, we ended up grabbing lunch and then heading back to our room to rest.

By the time we came back, it was night and the idea of a roller coaster in the dark was scary. Instead, we headed off to Dumbo and he was much happier.

That night, we decided to watch Fantasmic. We opted to request a seat in the handicapped section so that Patrick could stay in his stroller. That always end up a bit awkward. Patrick is so much younger than everyone else there. But he quickly made friends with a grandma who was sitting there alone while her family was seated somewhere else. Her birthday was on Halloween too, so they had an instant bond.

We tried to stay put after the show for fireworks. Alas, though, Patrick was doing an awesome job in underwear for this whole trip. (He had a couple of accidents on rides, but mostly was good about asking for and making it to the bathroom.)  And halfway through fireworks realized he needed to find a restroom. Oh well.

Saturday

Thank goodness Halloween meant some limitations on entrance and crowds went back down in the park. It was so strange to be there knowing it was Halloween for everyone. Lots and lots of people in costumes. But we’d had our Halloween and were purely doing birthday.

We did some back to back rides of the kiddie roller coaster in Toon Town because there crowds hadn’t found the back of the park yet. At Minnie’s house, the cast member made a big deal of Patrick being there on his actual birthday.

In fact, Patrick absolutely delighted in wearing his birthday badge and having EVERYONE wish him a happy birthday everywhere he went.

After getting our morning fill of rides, we hopped onto the monorail and rode to Downtown Disney. There’s a fairly authentic Italian style pizzeria restaurant there called Napoli. Patrick DEVOURED the pizza there.

Seriously good pizza
Seriously good pizza

Then we went to get his present. A car from Ride Makerz. (This is the car lover’s version of Build a Bear. You design your car. It sounds like it’s starting out fairly inexpensively. But once you add remote control and a rechargeable battery and custom wheels and all.. well… We knew going in. Thank goodness Patrick’s fancy was fairly restrained. The experience was worth it. He loved getting to assemble the car with power tools. And he loves his truck.

We had reservations for dinner. Disney is always so good with dining. But we learned that we have entered a new realm for them. See, they are AMAZING at following allergy precautions. They won’t take a risk with any thing you declare to them. And they have lots of alternatives.

However, we knew going in that Patrick was going to was to order the mac and cheese. In fact, he’d been rather picky all trip and we were fairly sure that the mac and cheese was the only food he’d order on the menu.

So we asked the chef to come visit us at the table to make sure that the pasta and other ingredients they would be using were exactly what I expected and would be safe. Some pasta is made with eggs and unsafe. However, for Patrick pasta manufactured near eggs, as long as it isn’t concentrated eggs, is ok.

Well, before we knew it, we were being visited by the restaurant manager who explained to us that they would not be able to serve him any pasta. Or the cake that we’d special ordered for his birthday.

Only after I’d made a very in depth explanation of the parameters we’ve worked out with Patrick’s allergist would they allow us to order these foods for him.

So lesson learned. Disney is great at avoiding allergens. But don’t tell them your grey areas out loud. I think that’s going to be an ongoing rule as long as Patrick needs to eat food’s that he is mildly allergic to.

Anyway… once food was ordered the dinner was very nice. Patrick beamed at his little miniature cake and really, really loved the sorbet they brought him , too.

After dinner, we headed over the World of Color show. Our dining package reserved us seating in a specific area. And then, on top of that, Patrick had his handicapped pass. However, that really only led to a lot of confusion. It took a lot of walking to find the area we’d be seated in. And once we got there, we weren’t so sure it was where we wanted to be.

The reserved handicapped section was full. Beyond full. Like they had to make people get up and move to make room for us. And they just kept cramming people in.

Really, the problem came down to large family groups that didn’t understand that a family of 12 was too big to all squeeze in with one family member there. Alas, that meant that as we were rule abiding, our family ended up divided. They seated us on a bench so that we could fold up Patrick’s stroller and make room for others. And then they needed more space and Brian got up to allow it. Meanwhile the gigantic family grumbled about how unfair it was to ask them to be separated.

I think maybe next time we’ll have to look more closely at whether or not we can do regular seating. Thankfully, Brian stayed close enough that we could still see each other and the other people he ended up standing with (who were also displaced) were very kind. The show was really nice and Patrick really enjoyed it.

And we went to leave, but Patrick kept talking us into one more ride, and then another and then another and we ended up lingering and riding and then doing a little more shopping so that he ended up getting to stay up till midnight on his birthday.

Monday

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We came home Sunday and had a quiet day at home. And then Monday evening we invited grandparents to come join us for birthday cake. Mixed in with needing to run back and forth to help with Patrick’s school to help take him to the bathroom that made for quite the complicated day. Never decorated a cake in half hour increments with errands in between. But it came together and Patrick loved the little quiet family party at home.

And by the end of the weekend, I was quite satisfied and quite done with reminiscing about how far we’ve come. It is truly miraculous to see what this year has brought. And also, it is time to get back to normal.

That’s what we hope Patrick’s 7th year will be. Just a nice normal year where he can keep growing and we can settle into the normal that we’ve always dreamed for him.