Tag Archives: school

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.

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.

Dino-Us-Tomorrow

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.

Transplant day 215 and the School Placement Meeting

I find I procrastinate blogging when I am having a hard time processing something emotionally. I’m finding this subject hard to write about. This past week hard to write about. And I was kind of relieved by a brief outage in the blog that made it so I couldn’t write. But if I don’t get this down soon, then I won’t get past it to the things you want to know about. So here goes.

I’m behind in blogging and, given how much has happened, have decided to do some belated day-by-day catch-up. So in this post, you’ll be travelling back with me to June 3. The day of Patrick’s school transition meeting.

Actually, let’s back up to the day before it. On June 2, I took Patrick for his end-of-year kindergarten assessment. We got delayed leaving because it was also lab day and so we arrived with breakfast still in hand because we’d just made it. That’s ok. Patrick tests better when he’s eating.

I sat in the corner and read scriptures on my phone and half-listened. I actually feel like the test was pretty representative and that he did pretty well. It also pointed out to me how much he still struggles. He aced letters and letter sounds, starting sounds of words, and read a few sight words. When asked to write words, well, first he is only identifying parts of words. Second, writing is one of those things that his brain injury makes hard. His teacher pushed him to write starting sounds, which I was pleased with. And he showed her that he still knows pretty well. He struggled a bit with sounding out words, too. His speech delays get in the way there sometimes. But I thought he did pretty well, for him. He counted to 26, though he almost forgot 16. He counted 20 objects. And then he avoided the other math questions.

It felt like a pretty good representation of his abilities as I listened. And when it was done, his teacher kind of talked through the results with me. As expected, he’s better with literacy than math and writing is a big obstacle. She told me that she was worried that he was not going to do well in a writing-focused first grade classroom and I started to fear that I might need to think differently about what I was going to ask for in the placement meeting the next day.

Like I wrote before, the week before the nurse had given me a heads up that Patrick no longer qualifies for medical hub services and so he’d need a special exception to attend Whittier. That was my preference, though I wondered if there might be other better options I didn’t know about. I knew I didn’t think he wouldn’t do well in a typical first grade classroom in a school without support.  He is so far behind the rest of the kids in his kindergarten class after this year.

So, Wednesday morning rolled around. We were combining getting ready for our trip to Nebraska that evening with getting ready for this meeting. Brian tried to sneak in a work call and it seemed that we were going to be quite late. How we managed to find time to still go pick up Dunkin’ Donuts I don’t know. But I do know that I was on the brink of a panic attack when I’d imagined doing that and then didn’t think we could. I’m not so good with change.

Anyway, we dropped Patrick with my mom and then met with the team. At first, we went over Patrick’s current abilities. Strengths and weaknesses. Learning style. Kind of went around the table and his teachers and therapists talked about what he’d accomplished in the past month and where he still needs to go.

And then it was time to let the district representative go over placement options. She offered 3: 1) Repeating kindergarten, 2) A regular first-grade classroom with an aide, and 3) a self-contained classroom called a functional academic classroom.

We’ve talked about repeating kindergarten for quite some time now. When we got home from Nebraska, it seemed inevitable. But Patrick has made a lot of progress and he’s already one of the oldest in his class and this just didn’t seem like the right choice for him.

Then the principal explained why she didn’t think a regular classroom with an aide was a good placement choice. (Please note: the principal at Whittier is one of the kindest, most concerned administrators I’ve ever met. So when she shared this, it was full of empathy and a sincere thought in Patrick’s best interest.) She expressed concern that Patrick would get frustrated with being so far behind his peers. That he’d need a lot of pull-out time. And that having an aide hovering would feel limiting and restrictive to him. Patrick’s teacher had pointed out to me that he often stopped and tried to get her to give him answers or help in his test because he is so used to it.

Then they told us about the functional academic classroom. How it provided a smaller class size and lots more adult support so they can accommodate different learning styles. How the school is closer to our home. How it used to be a medical hub, too, so the environment there is accepting and inclusive. How amazing the teacher is. How they have often sent students there to see them thrive. How some of the IEP team also works there so we would have some familiar faces willing to advocate for him.

We also talked about placement at the school by our house. They gave me lots of pros to that, as well, but I knew it wasn’t right. That he’s not ready for that.

I knew as they talked about the other classroom that they were describing what will probably be the best place for him to learn. They reassured me that being pulled out in a self-contained classroom doesn’t have to be a long-term thing. That he might only need a couple of years to make up for what he’s missed.

But then, I started to imagine Patrick and the little friends in his classroom who have loved him so sincerely. How their faces light up when they see him. How they hold hands on the playground. And I started to cry. I HATE that I cry. But, as much as I know that academically this classroom will help him, I don’t want to see him lose that acceptance and friendship. And it is a total leap of faith. (One I am having a hard time making.) to believe that starting all over again in a new school isn’t going to set him back socially. Especially if he isn’t in a regular classroom. All the inclusive activities in the world aren’t the same as being in the same class.

And besides – it means giving up the amazing people at the school Patrick’s been attending. The familiar faces. The rockstar IEP team. The sensory room and PT gym. And my little oasis next door where I’ve been walking and studying and praying while he’s in school.

So – the meeting ran a bit longer because once I had tears on my face, they were trying to comfort and reassure me. Which made me feel stupid because I know my reaction is emotional. The logical part of my brain knows what’s best here. I’m already thinking of that as his new school. But I’ve got to find a way to make sure that all the i’s are dotted and the t’s crossed to send him there. And make sure that my fears don’t rub off on him.

And once the meeting was over, we sent Brian off to a meeting at work and I went and finished packing for Nebraska. And I was completely distracted all afternoon.  And we were up till 2 a.m. for reasons I’ll describe in the next post.

And I’ve stalled writing this blog post because I still feel conflicted and unresolved. And a bit guilty that I didn’t pull off more of a miracle keeping him up with his class. But here it is. And I’m gonna post this and start another right away.

 

This week’s normal

I think for the next little while, we’ll be building our normal week by week. Some things are routine. A lot is just made up. Most of the time, it feels like we’re flying by the seat of our pants, but every once in a while, we strike gold and I know that I got being a mom right that day. I wish more days were like that.

Patrick’s doing well back at school. Waiting to go in the morning is really hard. He gets up excited to go to school and then we try to fill the mornings. When we have our act together, we will do something before we leave. Work on homework. Visit the library. I’ve learned it helps to go early enough to let him get some wiggles out before school so we usually try to get 15 minutes to half an hour at the park that’s next to the school.

Where I spend the mornings when Patrick is in school

Where I spend the mornings when Patrick is in school

I’m enjoying a brief little bit of respite while Patrick is at school. One of this teachers pointed out a quiet little walking track near the school. So I drop Patrick off and then go walking. You know that mom who stays in her exercise clothes all day long? Shops in yoga pants? Picks up her kid with a messy ponytail and no makeup? Unshowered. Long into the afternoon? Yeah.. I’m that mom right now. But it is SO NICE to be able to exercise and this is the way I am doing it.

After walking, I’ll sit down in the far corner of this beautiful little grassy, shady park where i walk and read my scriptures. I love that the ladybugs are my study buddies.

An hour goes pretty quickly. But it is very nice to have this little bit of time for quiet reflection. Especially because, as happy as it makes him, going back to school has been hard for Patrick.

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I was thinking that somehow transplant had magically relieved him of his sensory processing disorder. No. It turns out that it was just being able to be home and unstructured. Keeping it together enough to follow the rules and sit still and be attentive at school takes enough of Patrick’s energy that, even though it’s only one hour, when I pick him up he is wound up like you wouldn’t believe. It takes a good hour for him to settle down again.

His temper is hot again – fueled by steroids that I’d hoped might not be necessary in this high of doses by now. And we spend a lot more time trying to cool down when angry.

The days that are golden we manage to fit in something magical like an hour of practicing reading early reader books at the library or sitting down together to practice writing or have lunch at the park. Patrick’s quickly taking to the idea of kids meals and is trying just about any sandwich I deliver packaged in that form. He devoured an Arby’s roast beef sandwich, though at home he has sworn up and down to me that sliced roast beef is “too brown.”

At least once a week, we try to stay late after school at the park. One or more of the kids from class will stay after school to play. His classmates really do love him and try to include him. I heard one boy tell a friend, “I can’t leave Patrick to play with you. He has been away and is lonely. You can play with us. But I want to play with Patrick.” Big words and big heart from a kindergartener.

My mother's day flowers

My mother’s day flowers

We have enjoyed a brief break from the rain and that’s had us spending afternoons outside. I asked Brian for flowers for the garden for mother’s day. He spoiled me by taking me to the greenhouse and letting me pick out flowers to my heart’s desire. So I’ve been planting all week. Patrick still struggles with this because he’s not supposed to garden in this first year and feels left out of an activity he loved. So we try to do it in small portions.

However, it did get him outside and, though he protested a lot the first day, after that he started asking me if I’d go plant flowers so he could play in the yard.

Speaking of Mother’s day.. I had such a peaceful day. Weekend, actually. Brian spoiled me all weekend, taking me out for breakfast and dinner at favorite restaurants on Saturday, and then cooking for me on Sunday. We opted to stay home, which made for a quiet and peaceful day.

I was invited to speak in church that day. That’s a nervewracking assignment for a woman who has a history of infertility and adoption and raising a child with chronic, terminal illness. Womanhood and motherhood have NOT gone the way I expected and I used to cry through and try to avoid church on mother’s day.

However, spending my walking time in the week before mother’s day studying messages about womanhood and motherhood and God’s love really can help to build up your sense of self-worth. After all that we have been through this past year, I’ve wiped away most of my expectations. Without expectations, it is hard to be disappointed. Instead, I spent most of the day just feeling grateful. Grateful for the lessons I’ve learned. Grateful for another year with Patrick. Grateful for relative peace.

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I needed that little recharge. Because not every day is full of peace and gratitude. Not every day do I get motherhood golden. I’m still learning to juggle time and responsibility, fostering independence and giving loving attention.

The end of this week ended up tricky. Wednesday night, late, I got a message from Patrick’s teacher saying a stomach bug was working its way through the classroom. Brian and I talked about it and decided to give Patrick a choice of whether he wanted to wear a mask and gloves and go to class or check out early with me.

The first day, he opted to check out early. We had a golden mommy day that day where I made up for missed school time by working with him on reading.

The next day, he chose to wear his mask. That day didn’t go as smoothly. He came home riled up and didn’t want to nap and decided to avoid it by being extra naughty so I’d need to stop him and/or put him in time out. A rainstorm came in that night and I can’t help but wonder if the change in barometer hurts him and he just doesn’t know how to express it. I mean, I ache from tiny little injuries. He had his whole digestive system removed and replaced.

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And so we go. Day by day. Week by week. Making this up as we go along.

I told a friend on Sunday that it feels somewhat as if my life was erased when Patrick got his transplant. We’re trying to piece it back together a little at a time. I’m trying to get the most important things back in first. There is a sort of peace in that simplicity. Some days I get the parts in wrong and the gears get jammed. Other days, they fit and we work like a well-oiled machine. Most days, a little of both happens.

Hope you’ve enjoyed pictures from one of our well-oiled days. We surprised Patrick with a trip to member’s night at the zoo. He’s been asking since Brian and I went on our last date if we’d take him on a playdate, too. When we pulled into the zoo parking lot, his face lit up. Bonus that the summer dinosaur display was already up.

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Transplant day 96 and snow days

A shot of the snow Monday morning after it snowed all day Sunday. Before this, there wasn't any snow on the ground.

A shot of the snow Monday morning after it snowed all day Sunday. Before this, there wasn’t any snow on the ground.

My phone rang at 5:30 this morning. It was a recording from Omaha Public Schools announcing a snow day. This is the second snow day of the week. Church was also cancelled Sunday. It is snowing. A little over a foot has fallen.

I am trying to decide if this is premature. The parking lot of the Ronald McDonald House has snowbanks 10 feet high where the plows piled snow. And on Monday, I barely got my little two-wheel-drive car to go up the hill on a road with minimal plowing. I’m not sure that this is more or worse snow than we get in Utah. But the roads are less safe for it. They are narrow. VERY narrow. With no shoulders or turn lanes and cars parked down both sides. Also, everything is very hilly. So, while I grew up on the edge of a valley and our hills might trap us at home while the rest of the valley could manage to get around. Here, you might encounter 3 very steep streets within a few blocks of each other.

I don’t blame them for keeping the school buses home.

It didn’t affect us much with Patrick inpatient. We just watched the snow out the window. Snow days have fewer volunteers and more staff that got stuck trying to come in and fewer child life activities. But we are cozy and warm and protected from the weather. We have lots of toys and TV and crafts and books.

The less snowy days have provided ample help. We had 3 volunteers come by yesterday, giving me hours to get away and grocery shop and clean and rest. The day before, child life and music therapy and physical therapy filled in because there weren’t volunteers and I got to go back to the house and do laundry and pack clothes for a few more days. With nurses taking care of the medications and diapers and formula if I happened to sleep through those needs at night, I’ve actually had a chance to mostly catch up on my sleep in the past 2 weeks.

And that’s very good news. Because this morning, Patrick’s nurse practitioner came in and said that adding extra fluid to Patrick’s feeds had caught up his hydration and she was going to recommend discharge. It took a bit longer for rounds to come around, and I still wasn’t getting my hopes up too much. The added volume that giving more fluids required had made Patrick’s belly gurgle and dump during the night again and I had just changed 3 diapers back to back so I was pretty sure they weren’t going to let us go.

They came around for rounds and asked about Patrick’s prograf levels and they were borderline high and I was almost entirely positive, especially since it was a snow day, that they’d want to keep him one more day.

But, they said that since Thursday mornings are lab days, that homecare could provide the same care they were providing and so we could go. I settled in for a long wait, as discharge has taken till dinner the last few times. But an hour later, Patrick’s nurse arrived with some patient belongings bags and a cart for me to pack up our things and by 1:00, I was signing discharge papers.

Moving us back in always takes work. For some reason, discharge and the monthly diaper delivery always come together and that takes a good hour to make room for in this tiny room as I clean out and haul out old boxes.

But, we got everything settled in. We found time to work on a valentine’s craft, even. Patrick was obviously exhausted and overstimulated and couldn’t focus on much of anything.. but we made it through the evening ok. The dinner group let him start eating early when they saw us come down for a snack. Patrick was tired enough that he preferred playing in the room today. And so things are unpacked and put away and the formula is mixed up and medications reconstituted and line cared for and teeth brushed and pajamas on and by 9:30 tonight, Patrick was snoring in his bed.

I really should get to sleep. I know I’ll need to change at least two diapers and Patrick’s formula bag still needs refilled every 5 hours or so.

It is good to be out. And as discouraging as this hospital stay was, it seems we actually made some ground. We found the cause for the random bleeding I sometimes saw and treated the ulcers. And we found that Patrick can eat enough food to have reduced his overall tube feed rate by 10%. That isn’t much, but eating 10% of his calories is a big deal considering how little he ate before and how few foods he is used to eating.

The doctors have assured me over and over again that he shouldn’t still be contagious. They even went so far as to clear him to attend child life activities at the hospital, which is definitely a statement that they don’t see him as a risk. His gut, however, still isn’t back to where it was before the virus. That is going to take time and patience and lots and lots of diapering supplies.

The end of another school year

Patrick woke up crying this morning at 6. Not just a little “I’m sleepy” cry. Out and out sobbing. When I asked him what was wrong, he replied “Push!!” “Push what?” I asked. “Push TAMMY!” He answered.

And I understood exactly what he meant.

“Push Tammy” is code for “I fought with my classmates at school again.” This time it was a dream. But it hits on a really real fear and a very big problem that I’ve been so baffled and busy with that it’s kept me away from this blog for quite some time.

This has been a hard school year for Patrick. My sweet, friendly, optimistic little boy has felt stressed and discouraged and just plain rejected. It was bound to happen one day that his medical issues and his developmental delays and his just-plain-awkwardness would catch up to him and cuteness wouldn’t carry him anymore. At least it started in his last year of preschool with a teacher who knows him and is OH SO patient and willing to adapt and help.

Patrick’s frustrations have manifested themselves in a lot of hitting, pushing, and kicking. Usually it’s subtle and small. Sometimes it’s angry. Some would say we’re lucky that he’s perfecting the art of the tantrum this late in life. The problem is that at age 5, it’s a whole lot more frowned upon. And it certainly is costing him friendships.

So, if you’re wondering what I’ve been doing since I wrote about the IEP meeting last fall.. I’ve been volunteering in Patrick’s classroom, advocating for a behavior plan and better support for him at school, trying to find a good psychologist and then trying to implement what she’s trying to teach me to do.

I’ve also been being humbled a lot as I realize how far I need to go still in developing patience, self-control, long-suffering, flexibility.. and on and on…

Oh, and watching a lot of Mister Rogers and Daniel Tiger’s Neighborhood. Because they teach lessons both Patrick and I need to learn.

Now – why am I telling you this? Well, because I am really hoping that I can spend the summer blogging about how Patrick and I are having wonderfully fun adventures together as we explore the alphabet. Patrick’s got just a few days left in preschool. 

So if I tell you now about this struggle, maybe I’ll stop worrying about how to tell you about this struggle and can get on with writing about our lives, imperfections and all.

The rest of today didn’t exactly pan out much better. Patrick’s nap got delayed because of our kitchen remodel (subject for another post soon).. and then I had to wake him early for speech therapy. And he was so tired that he fell asleep in the car for the first time in a year. And the he wouldn’t talk to his speech therapist and threw the flash cards she was using on the floor again. And when that was done, we took him to the zoo to see the new lions. And I’m not sure if he had a good time or not, because he was so sleepy he only cared about pushing the stroller (a tendency his psychologist calls a perseveration, which means something he gets stuck on obsessively). And when we would take it away, it just plain made him mad. And he tried tantrums, and we tried not to give in to tantrums… But when I reminded him he needed to calm down, he took a breath and counted to 4, then asked again in a nice voice. That is actually really good progress for him, and for me.

 

Another IEP meeting behind us.

I feel like a huge weight has been taken off of my chest. Although we have always been very blessed with a caring and cooperative IEP time, hammering out an IEP that meets Patrick’s many needs is no small feat. And this year, with everyone on the IEP team, except the classroom teacher, being brand new to us, I was especially worried.

So I got dressed in my best “I’m competent” clothes, a change from my usual “I’m a special needs mom and you’re lucky I am dressed” wardrobe. I even put on makeup and did my hair. I packed a bag of toys for Patrick and brought along a stack of supporting documents for me. I stopped at the store and picked up some new puzzles for Patrick, even. Then went to Dunkin’ Donuts for goodies since the meeting was at lunch time and I wondered how at least the classroom teacher was going to manage to eat.

Then, as I was sitting waiting for Brian to meet me, I noticed that I’d mixed up my brand new jeans with an old pair of jeans with a hole in the crotch that I’d worn gardening last week. And I crossed my legs and shook it off because I couldn’t let that throw me today.

It seemed like this year’s IEP was all the more important than years past. Before, we were just making goals to help move forward his academic and developmental progress. This time we were dealing with new and worsening behavior problems as Patrick has become aware of his limitations. He wants with all his heart to fit in and make friends, and he just doesn’t have the skills and savvy to do it right. And so he’s taken to hitting, kicking, and pulling hair when he feels frustrated instead.

I had a feeling stress was building. But, I’ll be honest, I’ve been surprised and quite devastated that things got this hard this fast.

As the school year ended last year, I knew that impulsivity was getting to be more of a problem the more Patrick could do things for himself, but still couldn’t be independent. I asked his neurologist for help and he referred me to an amazing program designed to help children with developmental delays and behavioral issues.

But when I started down that path, insurance informed me that the program was through a non-contracted provider. They are a non-profit and we could maybe have made things work, but it was going to cost us more out of pocket than I expected. And, to make matters worse, their wait list was months long… all summer long in fact… just to get an evaluation.

My sweet insurance case manager felt so bad delivering this news that within a day, she’d called around and found a neuropsychologist who they contracted with who could squeeze Patrick in for some developmental testing. I had to fill out a mountain of paperwork. The questionnaire was over 50 pages long. Plus provide a medical/developmental history. (Another 50 pages at least). Then, Brian and I went in for an interview where we talked about all of the things that concerned us about Patrick’s development and behavior. Then it was Patrick’s turn. 4 hours of alternating standardized testing and play therapy and observation. In the end, we got a 25 page write up describing our child. His strengths. His weaknesses. His learning style.

In the end, Patrick was diagnosed as having many physical and cognitive delays stemming from his brain injury. (No surprise there.) And with ADHD. (Also no surprise, though really nice to give it a name we can work with.) The evaluation also included testing for autism and the doctor and Patrick’s therapists and I had a long drawn out series of conversations in which we discussed the way that Patrick’s brain injury sometimes makes him act like he is autistic (sensory processing disorder, social difficulty, quirky little obsessions).. but in the end decided that that diagnosis would only cloud and confuse things for him as it doesn’t exactly fit.

Armed with new diagnoses and 25 pages about how to help Patrick learn (with very specific examples of areas to teach him in), we supposedly had all the makings of a rockstar IEP.

Hence my anxiety over the past month in trying to get things just right. I’ve been e-mailing and talking to Patrick’s new special education teacher (this is an extra teacher who works with him in a regular classroom). I have felt like the super duper stubborn bad guy with my list of unreasonable demands. I really wondered if they were starting to hate me.

But today’s meeting was yet another IEP success. I feel like Patrick’s got a group of very astute and caring team of people working with him. And, in the end, they found a way to give Patrick just about everything we were asking for for him. In fact, a little bit more, even. Like a motor aid to help him in PE. And picture schedule cards for each type of activity in the class. And a more supportive chair for work table time. The occupational therapist offered to work with him on a sensory diet (meaning physical activities to meet his sensory needs throughout the day), which is virtually unheard of in IEP’s in Utah. And the speech therapist offered to build Patrick social stories with him as the main character on her iPad. And, as icing on the cake, they have a written behavioral plan in place for Patrick and are calling in a psychologist to consult and help Patrick learn to control his temper in class.

Of course, the trick now is finding practical ways to make it all work together.. But it is such a relief to feel like we’ve got our feet pointed in the right direction again.

And a big relief to be done with a crazy month of trying to see all the doctors and all the therapists and gather recommendations and write firm but kind “parent advocate” style e-mails that say what they need to, but then have to be trimmed down because, face it, I’m verbose. It will be a relief to be done rehearsing arguments about the IEP in my head all the time.

At least till next fall. Or maybe spring. Or maybe earlier, if things aren’t going quite as they should.

The Orange Rhino Challenge and a whole lot of stars

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Patrick loves school! He is so happy to be back. He is making new friends at a record pace, as well as happily meeting and playing with his old friends before and after school.

But, he’s also been really struggling since school started. At first, the reports were a few here and there coming from the classroom. Then one day, the special education came out to meet me and talk about the problem. Patrick has been growing increasingly aggressive. He’s not picking fights per say, but when he gets mad or feels ignored, he has been using his hands and feet to express his anger. And it’s been getting worse, spilling over into therapy and playdates and church and home.

I loved the conversation with the special ed teacher. (Note, this isn’t the regular classroom teacher. This is a teacher who visits the class a few times a week and, like everyone else, is new this year.) She said she’d heard that Patrick hadn’t had these problems last year in school and asked me if he’d been under any stress at home. I explained that during the first week of school, Patrick had had major, life-threatening medical issues and had needed to travel out of state for surgery. She said, “Well, I know about that. But other than that….” Yeah. She didn’t get it.

Then she asked me what helps at home. I tried to explain sensory processing disorder and how he needs a physical outlet for his energy or he can’t sit still, gets in trouble, gets embarrassed, gets mad, and hits. She told me he gets a regular sensory time once a day. Yeah. She didn’t get that either.

I left the conversation with two clear impressions. 1) Patrick was struggling at school and 2) I was going to need to come up with some answers to help him and/or a better way to communicate with the plan-makers at school because we weren’t going to make much progress otherwise.

I put a lot of thinking and reading and talking and praying into the problem over the next couple of weeks. And I watched as things got worse and worse. It was pretty clear to me that Patrick has been responding to the stress of having his life turned completely upside down… and then having to start school. Not only that, but school twice as many days a week as usual, and in a class that is much younger and more chaotic than last year. He’s feeling overwhelmed and he doesn’t have the words to express his feelings or stand up for himself. So, he’s doing the only thing he can figure out to do. He’s fighting back physically.

And then I remembered something I encountered a while back. An amazing woman who made a goal not to yell at her kids for a whole year, 365 days..  She blogged about the experience and is still blogging and running a Facebook support group to help other parent learn to discipline without yelling, too.

She calls the project The Orange Rhino challenge.

And I realized that I can’t expect Patrick to learn to deal with and express his anger and frustration and overall exhaustion with his situation in healthy ways if I haven’t learned to control my own temper.

But I just couldn’t seem to get there.

And then, a few days ago, I took Patrick to a checkup with his neurologist. We discussed the results of his recent neuropsychological evaluation (a topic that I swear one day I’ll tell you more about, but in a nutshell Patrick was diagnosed with several learning challenges, as well as ADHD) and how to help him learn to work through his attention issues at school, and he offered to have me talk to the department social worker about resources.

That conversation was a lot about how to create a behavioral plan in Patrick’s upcoming IEP. But one thing that stood out was that he suggested using a reward system to encourage the behavior we wanted instead of just punishing “naughty” behavior.

And I just couldn’t get the thought out of my head. Finally, it came to me. And yesterday, Patrick and I had a talk and made a deal. We both need to learn to be gentle when we feel angry. So, any time one of us is going through a hard time and feels mad and chooses to use soft hands and soft words instead, we get a sticker.

I stuck a sheet of foil star stickers in my pocket and away we went.

It was a rough start, with a tantrum first thing in the morning when he failed to earn a sticker by hitting when he didn’t want to take a bath. I thought maybe I was in over my head. But soon, we had our groove.

I took him to school with 3 stars on his head, gave a sheet of stickers to his teachers, and hoped for the best. I picked him up after school to find a dozen more stickers on his head. He was so proud of himself! His teachers reported an improvement, too.

So why am I telling you all this? Well, part of the plan of success with the Orange Rhino challenge is to tell people what you’re doing so that, if you’re feeling weak, you can call out for help. I’m two days in… we’ve had a few almost tantrums from both of us, but we’ve made it so far. It’s easier because we’re doing it together.

My goal isn’t necessarily a year of no yelling. But it is to earn as many sparkly star stickers as I possibly can each and every day.

To know more about the Orange Rhino Challenge, here’s a website: http://theorangerhino.com/