Tag Archives: milestones

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

Goodbye to kindergarten and the beginning of change

Today was Patrick’s last day of kindergarten. It was over almost as soon as it began. I think it finally sunk into him this morning what I was saying because he was very worried as he got ready. Worried about missing his friends and worried about there not even being familiar teachers in summer school. To help with a little closure, I did a quick google search and found some printable thank you notes he could color for his teacher and aide. And then we were off.

I don’t know much about his day, except that he came out laden with gifts. His special education teacher came out with him at the end, too, which I thought was very thoughtful of her. He was given the “jolly rancher” award for always being so happy. And we had to linger a little bit at the park by the school to let him finish a popsicle he’d been given. Then, we met Brian downtown where we went out to lunch to celebrate the occasion.

It hardly seems real, except that getting Patrick needs several bags of supplies and safe snacks for school and all of that is in my kitchen now.

The last day of kindergarten represents the kickoff of a very big transition week for us. In less than a week, Patrick will have his broviac line removed. I am counting down the end of a week’s worth of those supplies in amazement and a bit of fear.

I’ve had some horrible dreams this week. I dreamed that Brian was on TPN, only it wasn’t available and his blood sugar was crashing. I dreamed I had a line that needed changed to a port and I felt so helpless and out of control trying to convince the nurses in the hospital to follow the pre-op directions I’d been given about my medications. It made me realize just how Patrick must feel, which was kind of crushing. Then I dreamed that Patrick was in surgery for his line but 5 hours had passed. That is really REALLY bad for that kind of procedure and brought back some horrible memories. Have I mentioned that it’s common for patients and caregivers dealing with this chronic illness, especially transplant, to suffer from a form of PTSD?

I’m just trying to push forward and take care of what needs to be done to get ready for what’s coming in the next couple of weeks. It is hard to keep them in the right order when new things keep needing my attention.

For example, yesterday I dropped Patrick off at school and ran to Walmart. The goal was to pick up a fruit for dinner and some entertainment for the plane ride to Nebraska. But as I headed to the checkout, my cell phone rang. It was the district nurse calling to give me a heads up that a group of district nurses had met to review the medical needs of students for the upcoming school year. And they had determined that Patrick no longer requires full-time nursing at school.

This is great news. He’ll still have an aide to help him with his many needs during the day. But it’s kind of bad news, too. It means that he no longer has to attend the medical hub school that he’s attending. And they wanted me to tell them where I want him to attend next year.

That’s not exactly a simple question. The school next to our house is quite small and not really given a lot of resources. Sending Patrick there would be very complicated and require bringing in a small army of people to work with him. I think we’ll be asking for an exception to be granted and for him to be able to continue at Whittier, at least for one more year.

It also means that I need to add making a list of care that an aide needs to be able to provide to Patrick, independent of a nurse. By Wednesday, when we’ll meet to also work on revising his IEP to get him through till the next IEP meeting.

In addition to that, Monday Patrick and I will meet with Patrick’s favorite Child Life specialist to help to teach him about having a port. On Tuesday, he’ll have his end of year kindergarten assessment. I’ve got to get orders for supplies for Patrick’s port ordered and delivered before we leave, and prescription refills ordered before we leave.

And in the midst of all of this, our church responsibilities have us pretty busy this weekend. Especially for Brian.

This is just the beginning for this summer and I’m having a hard time wrapping my mind around all of it.

But at least one thing is under our belt. Patrick’s a kindergarten alum. Now if we can just get him caught up a bit over the summer and make the right school plans for next year.

I’m also coming to the realization that summer is coming and that, in the past, I’ve been an amazing mom in the summer with lots of plans for fun and education. I am nowhere near that prepared this year. I am just trying to get through the next couple of weeks. But my mind is starting to hatch some plans and I hope I can make some of our traditional summer magic.

Back to school

In the midst of all of this madness, Patrick went back to preschool.He was excited, for sure, but talk about a crazy time to send your little boy back to school! He attended his first week. We picked him up from school on Thursday afternoon, flew to Omaha, got a new line put in, came home Sunday, and sent him back to school.

On the one hand, it was nice to have somewhere fun, comfortable, and safe for him to go while I tried to get everything taken care of medically. On the other hand, it’s really hard to have your world turned upside down and come back to a brand new routine.

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I think we’re getting there, though. Finally.

Patrick is super excited to be back in his familiar classroom and we’re both very happy that he still has his great preschool teacher, Miss Catherine. She is great about being aware of all of his needs, but still letting him be a kid.

Both of the classroom aides that he knew and all of his therapists have changed. That has been disturbing to him. Thankfully, one of the aides worked with him in his other classroom last year so he already feels safe with her and she is comfortable with him.

It’s different for Patrick to be one of the bigger kids in the class. For one thing, I can tell that he’s really kind of annoyed at all the little kids who don’t know their names yet and hang their coats in the wrong places and steal the other kids’ name collars. Kinda makes me smile.

He was worried that his best friend from last year isn’t in his class again. Thankfully, we still see Fred before school because he’s in kindergarten and they line up right next to us. I was actually really excited when Fred recognized Patrick and climbed right up into the car next to him to talk to him the first day. These two little boys are really kindred spirits and I’m so happy that friendship survived a summer apart.

Patrick’s also making new friends in his class. He has a little boy in the class named Angel who is in a wheelchair. Last year, Patrick really fell in love with a little boy named Conner in his class who was wheelchair-bound. Since then, when Patrick sees a child in a wheelchair instead of seeing the wheels (which is his natural tendency)… he looks for a friend there. Angel is no exception. Patrick adores Angel. He goes right to him to talk to him while all of the other kids gather in the mornings. At first I worried that he was making him uncomfortable, but I can tell now that Angel is happy that someone comes to him, since he can’t easily go to them.

I had a chance to volunteer at the school after just a few days. I actually had a really great time. It was wonderful to be somewhere where my education in teaching, Spanish and sign language met up with all of the special needs training I’ve picked up over the past 5 years with Patrick. It was awesome to play with all of the kids and I think that knowing them has made it a lot easier for me to help Patrick learn to interact with them in line in the mornings. I can’t wait to go back and help more. But for the next couple of weeks, it seemed that I should probably give Patrick some space. Having mommy in class was fun, but also kind of cramped his style.

Starting the school year in chaos has been hard for Patrick. The transition to busy structured days has been tricky, too. With school most mornings, all of his doctor and therapy appointments fall in the afternoon. After the first couple of weeks, we were both irritable about the new, more demanding schedule.

Finally, this weekend I decided it was time to stop trying to accomplish so much. We took a total lazy day Friday. It took till 10 a.m. before we were dressed and left the house. It was a perfect break and I can tell he’s feeling better already.

Hopefully that will translate into him doing a little bit better in school this week. I hope he’ll feel more at home as he gets to know the new staff and classmates, too.

Patrick loves school and is so excited to be back. And I’m enjoying a little more peace and get-things-done time than I’ve ever experienced before.

And I hope in a few more weeks that we’ll hit our stride and it will feel natural again.

Hooray for preschool!!

 

Trick or Treat – but hold the treat

Because Halloween fell on Sunday this year, it was celebrated on early in Utah. This gave us the rare opportunity to celebrate Halloween and Patrick’s birthday separately. And just in time, too… as Patrick is just old enough to enjoy the ideas of costumes, walking, and collecting small things in a little bag. A perfect year to introduce him to trick-or-treating without the woes of having to make up for the fact that he’s not allowed to eat candy.

We started our celebrations on Friday. Brian’s office invited the children of employees to come in to the office and trick-or-treat desk to desk. So we got Patrick all dressed up and went to spend the morning at daddy’s work.

Patrick was a lion this year. We lucked out on the costume. We ordered it online… early… to allow time for me to make modifications to allow for his tubes and his brace. But no adjustments were necessary. The snaps were all in just the right places. And Patrick loved the hood (still asks to put it on to play) and the little mittens. He’d ask to put his hands in the gloves, then wave them around excitedly.


Our very talented friend Jillian made a little trick-or-treat bag that Patrick could carry on his arm to collect treats in. I had a larger trick or treat bucket to move things to when the bag got too full or too distracting.

Trick or treating in the office was fun. We went from floor to floor and Patrick got to flirt with the women, show off for the men, and collect lots of little candies in his bag. It was funny that, although he’s never tried candy in his life, he seemed to prefer the M&M’s. Brian kept trying to sway him to different treats, since mommy and daddy would be eating them, not Patrick… but Patrick was persistent in choosing the M&M’s whereever they were offered.

Saturday morning was still a flurry of getting ready for Patrick’s birthday party on Sunday.. but by afternoon we were ready to go trick-or-treating again.

We started with grandparents. Patrick enjoyed showing off his costume and playing with the little toys that each had gotten for him in lieu of candy. Then, we hurried on our way hoping to make it home before the day’s rain made it too cold to want to go out.
We made it home after the worst of the storm and ate dinner, but it was still sprinkling when we loaded him into the brand new wagon we’d gotten as a birthday present. The ward had scheduled a trunk or treat, but chickened out in the rain. So we went ahead with our original plan to just visit a few close friends.

At first, Patrick was happy enough and quite adorable. He’d wander up with me to the door and try to go in, then act confused when we put candy in his bag and walked away.

After a couple of houses, though, this wasn’t much fun anymore either. He didn’t get why we were doing this and his foot seemed to hurt, to boot. He started to cry whenever we took him out of the wagon, so we went to just a couple more houses and then came back home.

He was content to spend the rest of the evening moving his treats from his trick or treat bag to the bucket and back. He got sleepy and went to bed around 8, thoroughly worn out.

All in all, it was a pretty successful first attempt at trick-or-treat for Halloween.

Happy 2nd Birthday Patrick

Not many people get sentimental around Halloween. In our house, we just can’t help it.

2 years ago at 3:07 a.m. Eastern Standard Time, Patrick made his way into this world with much excitement. Doctors swept him out of the delivery room and into the operating room. The prognosis for him was grim. At first hours or days, then no more than 1 or 2 years.

That’s what we were told a few days later when we first heard about Patrick. Infections or liver failure would take his life within the first couple of years ago.

We were scared to hear that news and not sure what the future would hold. But there was something special about that beautiful little boy with the angel eyes and we loved him more each time we told his story and looked at his picture.

Last year, when we celebrated Patrick’s first birthday it was a big event. We almost lost him that year and his mere presence at home with us that day was a cause for celebration.

This year, not only is Patrick still healthy and still home, but he is amazing us as he grows bigger and stronger with each passing day. I didn’t imagine when we met Patrick that he’d be the vibrant little boy that his is now at age 2. On his first birthday, we had even more reason to wonder whether we’d ever see that day.

Patrick is walking. Not all of the time, but often and with more confidence in every step. He is learns more words all the time and loves having you teach him words for the toys he finds of the books you’re looking at. He loves the people he loves with an enthusiasm that’s hard to describe. He loves cars and Elmo and pushing his brand new birthday gift wagon. He kisses us goodnight every night and gives me hugs and kisses every morning. He adores his Daddy. He gets into trouble with his friends in music group. He likes chips and french fries and drinking from a straw.

He’s an amazing little boy whose love of life is contagious.

Happy Birthday Patrick. May this be one of many, many more!