Category Archives: School

Some big changes

It’s the beginning of a new era for the Hoopes Family. Our lives are filled with packing, cleaning and painting right now. Why? Well, because as of Monday, we own a new house. It’s about 20 minutes north of here in a quiet little neighborhood.

I can’t remember if, when I was writing about Patrick’s tonsils, I also wrote about his name having come up in the lottery for a special needs charter school. I was so buried in tonsillectomy recovery with my husband out of town that all I could think to do that week was complete the required paperwork.

Well, things settled down a bit and we decided we’d better figure out what needed to be done to know if we wanted Patrick to attend that school. I’ll be honest, my first impression was that I didn’t want to give up all of the great things I had going on right then and didn’t see any reason at all to move.

BUT I did follow through by setting up some school tours and meetings with the school principal. And, well, given the length of the drive (and the added complication of having to use the freeway for the commute,) I decided to look around the neighborhood in case Patrick did great at the school and we wanted to consider living closer.

Well, from that moment on, we just couldn’t seem to leave the investigation alone. A house caught our eye, we looked it up. Found flaws. Then another appeared. I couldn’t stop thinking about it so I drove out to see it. It wasn’t right. Nor was another. And we didn’t really think we were house shopping. Just getting to know the neighborhood.

Until… Brian spotted one nearby but NOT in the neighborhood we were looking at. We did a walk through and as we talked about it we could see so many great things for Patrick’s future in that house. A quieter neighborhood, proximity to parks, proximity to a great school, space for a bedroom downstairs and away from us when he gets older.. and the list went on and on. As we talked, I was filled with this sense of total peace.

So before we found an answer about the school and just 2 weeks after even discussing the possibility of moving, we put an offer on a house.

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The rest has fallen into place very quickly. Through a ton of quick work, we cleaned up our house, did some staging, held and open house. And found a buyer. In fact, not just a buyer but one we’re really excited about selling the house to so we don’t feel quite as guilty for leaving. The financing came through in record time. The sale came through without a hitch.

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And so by the end of this week, we’ll be moving. I’m not ready. It’s gone SO fast! And I’ve got just this week (one Brian’s working evenings in, even) to repaint the entire basement, finish packing, be present during Patrick’s last 2 weeks of school, tie up loose ends with PTA and church.. and be ready for the movers to come on Monday.

 

I am exhausted and I hurt everywhere. And there is so much still to do.IMG_20180515_192417.jpg

That brings me to another new thing in our family. Mostly, another new thing for me. Remember that post a few months back where I said that I just kept developing tendonitis everywhere as I tried to get in shape? And did I mention as I wrote about Patrick having EBV that we think I had it too?

I know I didn’t mention that at the end of November one morning I woke up and I just couldn’t walk. My knees were swollen and unsteady and it felt like I was ice skating. It took about 4 weeks to finally get to the point of doing cortisone injections which restored function pretty immediately. Except that things weren’t quite right. Not in my knees. Or my wrists or my elbows.

Well I finally got enough of a moment of quiet to go to the doctor who said, no, none of that is normal results of going from inactive to active. She ordered several blood tests looking for autoimmune diseases and other things.

And, well, one came back positive.

As it turns out, I have rheumatoid arthritis.

Our theory is that it was kind of there latently.. but when I started to exercise it brought it to the surface. And then, when I got sick (possibly with EBV) it triggered the auto-immune response.

RA is a lifelong, chronic illness with some pretty scary possible outcomes if left untreated.

The good news is, it’s one of the ones they are having success in treating. And we caught this quite early, we think.

So with immune suppressants, my new doctor thinks that he’ll be able to put the disease into remission and really minimize it’s effects.

It’s scary. The drug I am on is some very serious stuff. I’m now scheduled to have labs and follow up visits as often as Patrick is. This is a HUGE life change.

On the other hand, I’ve only given myself just one shot of the new medicine and it gave me 3 wonderful days with very little pain. The doctor said that in about 3 weeks it may be built up enough in my system to be considered remission. And it’s great to know that this hasn’t been all in my head, or because I was out of shape, or wimpy, or bad at taking care of myself.

And I’m thankfully so very busy with the move that I can’t really think too much about it right now.

It’s been such a whirlwind that it’s kept me, in part, from thinking too much about all the things that we’re leaving behind. I did lie awake fretting about that a lot at first. We really do have a beautiful home with wonderful neighbors. I’m going to miss my kitchen, my gardens, just being in the neighborhood of my family.. and most of all, I’m going to really miss my friends.

The only thing getting us through is this amazing peace that I feel whenever I drive out to our new home. The Lord is providing that in ample doses. And I know it’s where Patrick and we belong.

Dear Laura

This morning, I got a concerned Facebook message from a woman I’ve never met, but who knows one of my friends and apparently has been following this blog. I haven’t been writing. She was concerned.

To all of you, friends, acquaintances, and family, especially those who have relied on this blog for updates.. can I say I’m sorry? This has been a growing year for me personally and I haven’t been writing because I’ve been busy with a lot of things.

Proof we are still alive.

The short version is this (and I really need to devote a post to this topic)… I went to a doctor in December and learned that 8 years of full-time caregiving and saying “I can’t take more care of myself. I’m taking care of my family” kind of all came together into one disaster for my health. I discovered I had high blood pressure, overweight, out of shape, one seriously messed up knee, and was borderline prediabetic.

This may sound like bad news, but really, for a long time I put myself last. And this was just the nudge I needed to recognize that if I wanted to continue to be the kind of mom I wanted to be, some things needed to change. So I started working with doctors and a physical therapist. I got a gym membership. I started tracking what I ate. I got started meds for blood pressure. I pushed for asthma testing, got diagnosed, and started taking medications to bring that and allergies in control. I discovered kinesiology tape tape. I kept up with regular counseling because this was a serious blow to my ego and I had a month where I tangoed a bit with anxiety and depression. I gave myself tennis elbow. And tendonitis in several other ways as well. I adopted the motto “Pain is temporary. Quitting is forever.”

And after a fair amount of time and effort, I’m happy to say that I’m making some progress. I’ve lost some weight (more still to go) and kept it off. Most of those health issues are considered well managed. I’ve been hiking and biking and swimming and playing on the trampoline with my family in ways I haven’t been able to in a very long time.

But learning to take better care of myself has been a learning curve and it often didn’t leave me much other time.

Meanwhile, though… life went on. And in the short version, here are a few of the highlights.

In spring:

We went to Disneyland. Because we are seriously addicted. It was spring break and far too busy and I’m not sure I’ll ever choose to go during spring break again. Highlight of the trip for Patrick was meeting Doc McStuffins. Though he pointed out to us that she was too big. And couldn’t talk. Highlights for the grownups: We went on a foodie adventure and tried several secret menu options. Mac and Cheese in a breadbowl proved too big for any of us to eat. But the cinnamon roll at the Starbucks inside of California Adventure was delightful! And the World of Color Dessert Party was more than worth it.

We tagged along with Daddy on a business trip to St. George. We surprised Patrick by taking him to visit Pioneer Park, a state park full of Utah’s trademark red rock formations. He was upset the park didn’t have a playground. Then he surprised us by absolutely loving climbing the rocks.

We discovered and signed Patrick up for an adaptive baseball team. In adaptive baseball everyone fields, hits and runs. You can use a tee or they’ll pitch to you until you hit the ball. There are no strikes. There are no outs. You play at least 2 innings per team. More if you’re having fun. Or you can quit early if everyone is cold or tired. Everyone cheers for everyone. It is, perhaps, my favorite form of baseball ever. Patrick loved his uniform and his coaches and his teammates. He hated fielding, but kind of liked tracing letters in the dirt. He tried to learn to throw the ball in fancy ways and ended up with a crazy windup the always landed the ball behind him. He got a little bit better at hitting off the tee. And then, like nothing.. the season was over. We had a great time. And will certainly be back next year.

Patrick wrapped up 2nd grade with a fair amount of success… stronger in reading and finally making progress in math. He had an amazing 1:1 para for the 2nd half of the year when his previous aide got promoted. She brought out the best in him for sure.

In summer:

The bishop went on vacation for a month, leaving Brian in charge. That was a fun adventure. Patrick helped housesit there and also for another neighbor.. and we learned that he is a REALLY good housesitter. He’s not quite tall enough to get all the mail from the mailbox. And he isn’t strong enough to pull a hose around. But…He NEVER forgets that we need to pick up the mail or water the lawn. And he’s not afraid to ask for help. He earned a little bit of money doing it and used it to buy some toy cars and a fidget spinner.

Our ABA provider completely and totally screwed us up. We’d assumed that Patrick could get into their treatment center for summer services, then were told he couldn’t, then were told he could. And then, after a lot of back and forth and spotty service for the first month of summer, finally provided us with the right medical forms. Only to read them over and decide they didn’t want that liability. So I ended up with a lot of unexpected 1 on 1 time with Patrick. We got a museum pass and did our usual tour of museums and zoos, etc. We played with kiwi crates. We worked in dollar store workbooks. We practiced some educational computer games a lot. We got through, but it was a pretty messy and disorganized start.

I signed Patrick up for adaptive swim lessons. With no central line, this is now a possibility, and Patrick really needed somewhere to go and some help with his fear of water. His mom really needed a way to keep exercising and a minute of respite. Thankfully, he had an amazing teacher who was totally fine with me swimming laps while she taught him. And he got brave enough by the end of the summer to float, dunk his head under the water, blow bubbles.. and he was working on learning how to move his arms to swim.

Also, as a summer highlight… we bought a pass to the local amusement park, Lagoon, and Patrick and I spent several days up there over the summer. They would totally burn him out. We’d leave with him starving. He’d down an entire Arby’s kids meal on the drive home and then fall asleep for hours. He loves the rollercoaster, the small ones. He loved riding kid rides without me. He loves bumper cars. Or any cars really.

Our motto of the summer was “I can do it myself” and Patrick did make some great progress in learning to heat up simple foods in the microwave, get the mail, water the lawn, play in the neighborhood, fold his own laundry, clean up after himself, write more neatly and on and on. He grew a lot!

Oh, and one other summer highlight. Thanks to our awesome respite provider who is a teacher and had extra time because it was summer, Brian and I took a weekend getaway to San Diego. Just because. We slept in every morning. Played tourist and foodies. Even pulled of tickets to a baseball game. 3rd row on the 3rd base line.

And then, in fall:

Patrick survived his first overnight camping trip. There was some ice, but officially we didn’t hit freezing.

Patrick started 3rd grade. He’s now the old kid in his class. I think the 2nd oldest by 3 days, if I remember right. They had a bunch of 1st graders start this year. Half the class is tiny. Half the class is big like Patrick. He’s not used to being the big kid and the first couple of weeks he would just reach a breaking point shortly after school, yell, throw, and then collapse in tears at the frustration of having to hold it together and watch out for the little ones.

First Day of 3rd grade

His amazing aide got a great job offer a week before school started. That didn’t really help things. The first week, I tagged along and helped at lunch at the school. (And especially the first day when they had a class full of brand new kids and an eclipse viewing party to try to pull off safely.) By the 2nd week ,they had hired a new aide. And she’s really been kind of amazing for him. She’s older that his other paras have been. Which is kind of nice in that she’s not as afraid of getting in trouble for advocating for him. She’s really been quite kind and attentive and helpful. And she has really taken to the task of helping his eating. She asked for a menu of what he could purchase at lunch and has him buying and eating boxed ham and turkey sandwiches on wheat bread. He ate a whole banana for him a couple of days ago! This is perfectly timed as a summer of swimming caused some weight loss and the dietitian wasn’t exactly happy with me for it.

Also, I started a new role as PTA treasurer. This has been a much bigger and busier job than I imagined. But it’s also been good for me in a new world of not always putting myself last. I mentioned to Patrick’s teacher that I used to do bookkeeping. She looked at me and and said, “You used to do a lot of things.” And she’s right. I did. I had a lot of years single and then more years married without kids. And I did a lot of things. Now that Patrick’s health is better, it’s fun to be doing some of those things again.

A favorite way to spend an afternoon. Lining up cars & watching TV

I’ve kind of dived in full-time as a volunteer. PTA (which is settling down now that we are past the start of the year a little.) Still volunteering with reading groups. Primary music in the children’s sunday school at church. And in this past month, I’ve been asked to be Patrick’s cub scout leader. That’s another thing that happened this fall. Patrick earned his wolf rank. So he moved into the bear den a month early with me. We’ve done neighborhood cleanup with garden tools, woodworking, and pocket knives so far. Wednesdays are crazy. But I love being a scout.

Patrick’s settling in at school. Reading 100 words a minute. That’s not counting the random words he’s picked up from his scripture study. Like abominations (pronounced “abominable nations” by him.)

I threw a fit and got all new ABA providers and that has helped a great deal. I feel like he’s making progress on most of our goals there.  He wrapped up an OT session and is diving into PT again with focus on learning how to throw, catch, bounce and dribble a ball. So far, his schoolwork is almost all review and far too easy. And he’s really becoming quite grown up and and helpful around home. I love hearing his thoughts.

Anxiety has been bad for him of late. He started stuttering over the summer when he’s nervous about what he’s saying. So far everyone tells me not to worry and he’ll outgrow it. His fear of rims without hubcaps has reached a peak and I sometimes have a hard time helping him be brave enough to walk past school buses at the end of the day.

I’m hoping it’s just the start of school and the difficult memories fall weather can bring.

We’re headed for his 3rd annual post-transplant checkup in a few weeks and I’ll try to update on that soon.

And in the meantime… well of course we had to go back to Disneyland last week. This time’s highlight? Brian went to Disney Institute, a leadership training workshop.. for work. We got to stay in the Grand California hotel. Which mean walking out of our hotel straight into either downtown Disney or California Adventure. It was a treat to just return to the room if we forgot something or were tired. Also, as Patrick just discovered a love for the Toy Story movies, and since Brian was travelling ahead, we sent a Buzz and a Woody doll ahead with daddy that were waiting in the room when we arrived. Patrick had a happy little Toy Story binge in Disneyland.

Patrick has entered a new phase for rides. While he still loves his roller coasters and the Small World.. he also discovered the storybook rides. Peter Pan. Mr Toad’s Wild Ride. Pinocchio. That he couldn’t stand before. We discovered this at the end of our last day, alas. But it means some different experiences next time I’m sure. Also of note, we made him ride Splash Mountain. (He loves the log flume at the park near home.) That was a little scary. But we all survived.

Anyway, dear Laura… and our other family, friends and followers who have wondered where we went this past year and what we were doing.. that is what is happening. I haven’t been this busy since before we adopted Patrick. I’m not used to it. I’m used to surviving and being trapped in a hospital or at home by health issues. I’m not used to meeting deadlines and being places when I promise. I’m used to having to always cancel plans, not making and keeping them.

Hopefully I’ll get better at this with time. But for now, just know that we are ok. And if I’m not finding time to sit down and write, it means that we’re not quarantined, not in a waiting room, not hospitalized. We’re out and living. And we’re not very efficient at it yet.

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

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.

Potty training and post-traumatic stress

“Scripture says, ‘Search diligently, pray always, and be believing, and all things shall work together for your good.’ This doesn’t mean all things are good, but for the meek and faithful, things—both positive and negative—work together for good, and the timing is the Lord’s.” – Neall F. Marriott, Yielding Our Hearts to God

I thought that having Patrick back in school would open up much more free time for things like blogging than it has. However, life is just as busy now as it was before. If not more.

At first it wasn’t. At first, I kind of wandered aimlessly through the days that Patrick was away. I didn’t recognize at first what was happening. I was watching an awful lot of Netflix and I was trying to catch up on things around the house. But I was pretty darn tired and pretty darn disorganized and wasn’t getting through nearly as much as I hoped I would each day. Looking back, I realize that I needed a chance to just reclaim my life a little bit after being a full-time caregiver for a year. I also had to trust that I had enough control over my own life to dare try to do more than these things.

Looking back, it took a lot to teach myself to slow down after transplant. To be ok with days spent sitting in a hospital room or in the Ronald McDonald House just taking care of Patrick. And now that I have the ability to do more, it took a lot to teach myself again that it was ok to NOT just pass the day with as little on my personal to-do list as possible.

That isn’t to say that I’m back to working on my personal to-do list. No, Patrick still commands my schedule right now.

A couple of weeks ago, we went to Parent Teacher Conferences at the school. Patrick is doing great with school overall. I’ve never seen him so well-behaved and engaged in a class. He is making friends. He sits in his seat and he raises his hand. He is making progress in reading, in math (where it turns out that going back and teaching the fundamentals is helping him to be less frustrated), and even in writing despite his severely limited fine motor skills.

However, his qualms about the school bathroom were just getting worse. He went from holding it all day to having accidents. Every day. And then to beginning to have accidents on the weekend at home because he forgot that he was wearing underwear and supposed to make it to the potty.

So, at parent teacher conference, I told the teacher I’d like to take away his pull-ups. However, the district has made the very sucky decision to save money by making special education class sizes almost as big as regular classes. There are 16 kids now in the class that was 9 students when Patrick joined it. Only instead of 16 typical kids, these are 16 kids with learning disabilities and behavioral and medical needs that have to be attended to. I can’t even imagine trying to manage 16 IEP’s.  Thanks Granite School District.

And the message I was getting about potty training was: we’d love to help, but what can we do? We can’t afford to send adults out of the classroom.

And so, if I was going to ask to take pull-ups away, I also needed to offer help. Ok. You’re right. I’m under no legal obligation to help. But if I want to do this the right way, to have Patrick succeed, etc.. then I do.

So, for the past 2 weeks I have been meeting Patrick and his class immediately following their lunch recess to help to take Patrick to the potty. At first it went great. Patrick tried when I helped him and, even though it took a lot for him to get the courage, even went with his aide in the room (and me holding his hand.) I set up a super awesome “potty steps” reward system where I put pictures of each of the steps of going to the bathroom on a pill box and put rewards inside for him to earn.

Meanwhile, I helped in the classroom a little. I assisted at recess so lunches could happen on a field trip day.  I organized a bookshelf. I helped some kids who stayed in from recess to finish up homework.

The second week, though, I think he figured out that I’d end up staying longer if I was still waiting to help take him to the bathroom. And so he waits longer to go. He waits until a moment where his aide is either gone or busy so I end up taking him alone. And so now we’re reinventing things again. It’s very frustrating. There was one particular day where I kind of just sat in the corner and waited for him for several hours. Finally recess rolled around and he still wouldn’t go so I didn’t go with him. I went and sat at the office and waited. And tears started to come and I had to step outside to calm down. He didn’t go at school that day at all. I ended up putting him back in a pull-up and leaving.

But as I sat in my car reading my scriptures, I ended up reading about patience in weakness. And I realized that that is what this is. Just weakness. Just a human struggle. Just and example of the purpose of mortality. And a temporary one at that. And the Savior’s love kind of healed my heart and gave me a great big dose of long-suffering to go along with this struggle. And we’re still at it.

There are some good things about this plan. It’s snapped me out of my Netflix daze. I only have 3 hours in the morning to get things done before I have to eat lunch and get to the school. So I’m actually working in my time at home instead of puttering around. Also, because I’m trying to leave the school by 2:30 most days even though school isn’t over till 3:30, it has given me a dedicated hour for scripture study and for a daily walk. Both of these goals are easier when I know what time of day I’m doing them. Sure, once weather gets bad, it won’t be as pleasant to leave the school and go find a spot to walk and read.. But we’ll cross that bridge when we get to it.

Seeing this is going to be a long-term process, I asked and asked if I could be more useful at the school. And starting next week, I’m going to start helping with a reading group in a different classroom. This frees me up so I’m not hovering over Patrick but keeps me nearby for the daily “do you need to go yet?” standoff.

I hope someday that Patrick will forgive me for blogging about it.

I’ve mentioned before that I have started to go to therapy. And we’ve been talking a lot lately about PTSD. Our whole family struggles with this to some degree.

The thing about living with a trauma is that words can’t capture it for anyone else. But it becomes a part of who you are on a very deep level. I know that there are some people who don’t like to hear me say that Patrick’s transplant was traumatic. How can a miracle be traumatic? But in a very real way, it was.

One little phone call. We left home. We left friends and family. We left work and school. We left everything routine in our lives. We lived for months under constant threat, never knowing what new life-threatening medical issue might arise. Patrick suffered intense ongoing pain. For a child, that is impossible to comprehend. As a parent, that is one of the worst experiences you can live through. It was temporary.. but that doesn’t diminish how hard it was.

And transplant was only the worst of it. We’ve been living with a miniaturized version of it for years.

Facebook has launched a new “memories” feature that shows me, daily, my previous posts from the past 6 years. For two weeks in September, my daily “memories” were of Patrick in the hospital recovering from surgeries or fighting off infections or praying we’d get one more central line in. No wonder I was an anxious, depressed basket case at the start of September. My body has been taught to brace for a fight when that month rolls around.

I’ve also been working this past few weeks on Patrick’s annual birthday video. I sift through a year’s worth of photos and try to pick the ones that tell the story of his last year best.

Last year, I was 6 months late completing this project as I couldn’t stand to look at pictures of the life that we had left behind when we went for transplant. I had to wait till we were starting to see hints of that life coming back.

But this time around. Oh golly. Looking at these pictures has brought back a flood of memories that I had, quite literally, blocked from my memory. Your mind does that. It compartmentalizes the hard stuff so you only pull it out and look at it when you need it.

I have found myself for the past 2 weeks waking up in the middle of the night with vivid memories of the months following transplant. At first, just our hotel room. The carpet. The sink. Then I could remember the ICU. It really shook me. To remember how afraid I was. How much pain Patrick was in. But as I’ve worked, I have also remembered the amazing support we received from friends and family and strangers alike. The feelings of love. And the sweet comfort from the Holy Ghost telling us this was all in God’s plan and would be ok. And it’s brought me peace again.

I’ll apologize now. When I publish this video. It’s long because I didn’t know what parts of the story to leave out. And it makes me cry every time I look at it.

Anyway – all of this. Where am I going with it? Well, it’s much easier to be patient with Patrick when I look back and realize what he’s come through this year. Not just offering it as an excuse as I started out doing.. but genuinely seeing what he’s been through.

In just one year, he’s learned to walk again. He has learned to eat for the first time. He has learned to go to the potty. He has learned to read. He has learned to do basic math. He has learned to speak in clear sentences. He has learned how to strike up a conversation with an adult (usually about their car). He has learned to not be afraid in the water. He has learned to live without a line. How to drink enough water in the day. He is learning how to be safe while being independent, how to play with other children in the front yard, how to play in a different room than me. He has learned how to wash his own hair and get out of the tub when he is done bathing. If he’s a little bit shy and a little bit afraid doing only one of those new things without his mommy (who he was with 24/7 for most of the past year).. that’s really pretty darn good. And he is really pretty darn amazing.

One other thing. Patrick had a doctor cancel an appointment a month ago when she had to go for an emergency appendectomy. It hadn’t occurred to him before that grown-ups might have had surgeries too. In fact, he’s discovering that many grown-ups have been through surgeries. So if he strikes up a conversation by asking you where you had your surgery, know that he is trying to put his experience into context with other people. Trying to find some common ground with his very uncommon experience.

The conversation usually goes like this: “Where you have your surgery?” You answer with whatever general body part and little more explanation required. He might ask “Did it hurt? Did you cry?” You probably will say it hurt. Then he might tell you, “Mommy have hers in her belly button.” I had a laproscopy to diagnose and treat my endometriosis. You give some affirmation. Eventually he’ll say. “I have my surgery on my WHOLE body.” I usually answer with something like, “Yes you did. You were brave and it helped to make you strong.” Something like that.

In another variant, he might tell you it’s ok to be different. To be mad. To be sad. To talk about your feelings. To be missing teeth. (He’s got two missing and a third wiggy right now.) To be a different color. To be bald. To be “indopted.” And he might tell you it’s ok to eat mac and cheese in the bathtub. That’s all a reference to a book by Todd Parr that he’s been reading about why it’s ok to be different. Just laugh along. It’s also ok to have a pet worm.

First grade

 

Well, Patrick’s been in first grade for 3 weeks now. I love seeing him becoming comfortable at school. He loves his teacher. He has been matched with a very good aide. He’s making friends in his class. I think the work is just challenging enough. So far, things are going well.

It wasn’t our smoothest start. When the official first day of school in the district rolled around and Patrick didn’t go because they weren’t ready, I took it harder than I expected. Not only was I beyond tired at that point, but I felt a little left behind. We did our best to make sure that Patrick didn’t know the difference. And thank goodness his respite provider was trying to pick up extra hours before leaving for school because she came and kept him company that few extra days.

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Back to school shopping - breakfast date a Dunkin Donuts

Back to school shopping – breakfast date a Dunkin Donuts

I also decided that if you can’t be in school when everyone else is, you might as well take advantage of it. Patrick Make-a-Wish trip came with free passes to several amusement parks for a year from the date of his trip. Including one near home. So I hinted, maybe even begged, Brian to take the afternoon off of work and we went to play at Lagoon.

We did it kind of spontaneously so we surprised Patrick with it. I don’t think he knew that we had roller coasters close to home. He could have stayed all day. In fact, used to Disneyland 3-day-passes, he was a little confused when we left and didn’t come back the next day.

He was a little skittish after trying the regular “white” roller coaster.. a good old fashioned wooden rollercoaster. So kiddie-land was his cup of tea. Especially when he got to “drive a car” all by himself. I think he’d have stayed on that one ride all day. We stayed till we got tired and cold from being wet from the water rides.

 

And eventually, Monday morning did come and Patrick got to go back to school. I spent most of the first couple of days going back and forth training the school staff. They were very nervous about lunch and potty and g-tube medications and allergies. So I’d come back at lunch and for mini training sessions. And I think I eventually helped them see that what we were asking is new but not really hard. And, honestly, not really necessary most of the time.

I think Patrick’s doing pretty darn well at school. We all wondered how he’d take being away from home for 7 hours a day. That is probably the hardest thing. He comes home exhausted every day. He had been used to a mandatory afternoon rest time and he’s not getting that right now.

He’s also starving when he gets home to me. I think he’s doing pretty well eating away from me for the first time. But sometimes the temptation of friends and recess is great and he hurries through lunch. Thankfully, his education plan includes snack times and a water bottle at his desk and he’s doing ok with those things. But I’m not surprised that he’s lost a little bit of weight since school started and I’m not certain that we’re going to make the goal of 100% oral eating this month. (It’s hard when we are 95% there!)

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On Patrick’s 3rd day of school, some kids dropped a box labeled “bomb” on the front porch. The school put the kids in lockdown and the school was swarmed with emergency vehicles. Everyone was ok. I watched from across the street at my grandpa’s.

But we’re starting to get a routine regardless. Patrick’s school starts late so there is time for me to make sure he gets a good breakfast at home before we leave. If we’re really on point, we even get to the school with a little time for him to play on the playground. Then we visit the potty and then take Patrick to computer lab. Because of the breakfast in the classroom program, I drop Patrick off there so he misses that extra allergy risk.

After school, Patrick expects me to be waiting with a piece of string cheese. We are finding that letting him have a single small portion of dairy once a day seems to be the right balance and he’s in love with string cheese. Then we drive home and he gets to snack and play and rest however he chooses. Lately, his preference is to play in the yard with his ride-on car and bike and hope that the little boy across the street will come join him. But some days he’s tired and so we snuggle up on the beanbag in the basement and watch TV.

After dinner, we buckle down and do his homework. We’re trying to figure out the right balance between making him practice writing and making sure he doesn’t get frustrated. Dyspraxia, or motor impairment from Patrick’s brain injury, makes writing frustrating sometimes. Especially when he’s tired. But with a mix of stamps and tracing we usually make it through.

So far, he’s putting up with math better than I’m used to. They’re working on writing numbers and counting right now. Basically, he’s working in the math book he started but didn’t get a chance to finish last year. This is good. I’m wishing I’d realized I had access to that when we were in Nebraska because it gives a better foundation.. But at least he’s getting it now.

They’ve put Patrick the medium level reading group at school. He’s still got some to make up from kindergarten there, too. But he has a real knack for it. He is reading me little sight word/rebus readers every night right now without any hesitation. And he aced his last spelling test.

One day Patrick asked me if he could draw logos. I said sure, thinking it was fun to pretend. So he drew me the Jeep logo.

One day Patrick asked me if he could draw logos. I said sure, thinking it was fun to pretend. So he drew me the Jeep logo.

The biggest struggle right now is the potty at school. Because Patrick knows how to push through being uncomfortable, he seems to be having little problem with the idea of holding it for the entire school day. At first, he was just making it till his aide left at 2. But I put him leakier pull-ups. One accident and he started waiting for me to come at 3:30.

I started praying for a solution and the Lord sent a very interesting solution. A stomach bug.

We went to Denver for Brian’s nephew’s baptism. And on the 2nd night there, Patrick woke up at 1:30 a.m. and asked me to take him to the potty. Note: Patrick has historically had pretty big anxiety about unfamiliar potties. So that really surprised me.

The next day, that kind of became the story of the day. Trips to the potty. Lots and lots of trips to the potty. My knees were sore from all the trips up and down stairs and kneeling on the floor.

We were pretty worried about this. Diarrhea is a REALLY bad thing for intestinal transplant patients. It can mean rapid dehydration. It can mean developmental setbacks. And it can be a sign of rejection.

We should have been comforted that Patrick ran no fevers. At first we were. I was pretty certain that his upset stomach was a side effect of my letting him try both whipped cream and sour cream in the same day. But to the transplant team, no fevers made the odds of rejection higher. His symptoms lasted almost a week before improving and we had lots of conversations with his wonderful GI here as well as the transplant team in Nebraska. Thankfully, his labwork stayed stable. And I’m pretty proud of our ability to keep up with hydration using pedialyte through his g-tube.

Then, a few days in, I came down with the bug too. Who knew I’d ever be grateful for catching illnesses from my son. But it tells us when something is contagious and not malignant. And so far, I think it means that he gets to miss the opportunity of a sedated biopsy.

Patrick missed a couple of days of school because of being sick. But at least for me, he started using the potty there. And if he at least will go when I drop him off and pick him up, that’s one hour less of him just trying not to go. He’s gone for other teachers, too. Just not his aide.

He doesn't get much rest, but when he does, he crashes these days.

He doesn’t get much rest, but when he does, he crashes these days.

As for me… well, I don’t think I have the hang of things personally yet. I’m struggling to figure out how to work in appointments with school. Patrick’s had two half-days missed to go to appointments and subsequent make-up work. Plus make-up work for sick days. I’m grateful that his teacher sends the work home so that he doesn’t fall behind. But he’s not so much of a fan of the extra homework.

I’m not sure quite what to do with myself during the day, either. The first couple of days. I did nothing. Binged on Netflix. Ate foods that I wouldn’t make with Patrick home. (That first lunch that I didn’t have to consider Patrick’s food was a strange feeling.)

Did I mention we bought our hockey season tickets this month? We moved our seats to the nosebleeds for Patrick.

Did I mention we bought our hockey season tickets this month? We moved our seats to the nosebleeds for Patrick.

I’m doing some better quality scripture study for the first time in a while. I’ve even got a study notebook that I’m writing in. I’ll admit, though that I tried going back to traditional paper scriptures and I’m too hooked on the features of electronic study on my phone or tablet. It’s too nice to follow a footnote with a link or search a thought on the internet and find more information on it. Plus, I’m building a pretty nice little electronic annotation library of my own. (Seriously, look into the LDS Gospel Library App sometime. It’s got so much more in it than just fitting the whole Bible, Book of Mormon, and sunday school and institute manuals in your pocket.)

Some days I’m diligent and work on cleaning. I still feel wholly in over my head there. We have deep cleaning projects left from the summer before transplant. But I’m doing my best to chip away at it.  I’m doing much better keeping up on the regular cleaning and the yard work. I’ve cleaned out a few cupboards. Cataloged surplus medical supplies to donate. Canned tomatoes. Practiced the piano. Gone for walks. Finished a book. Filed medical bills and spent a lot of time on the phone making sure the last of what’s left from this spring is squared away.

A lot of my days have still been devoted to taking care of Patrick so I haven’t really scratched the surface of what I dreamed of doing with this time.

But today – well, today I decided it was time to update the blog. I’ve put it off too long. And when I get behind, it’s always harder to write. Because I know the post will end up long like this.

I dream of a schedule where I have blogging day and laundry day and volunteer at the school day and regular exercise and study and visits with family. Maybe someday.