Patrick Hoopes

It’s time to put the blog catchup on hold. I was doing my best to get caught up because I want to write about this week as it happens. Alas, there is still much more to write, but I need to write today today.

Our suitcases are packed. We are leaving for Omaha this afternoon. Yes, that’s right. Omaha. It doesn’t sound nearly as exciting as Seattle, does it?

But Omaha has something not found anywhere else near us. It has one of the top Intestinal Transplant and Rehabilitation programs in the country.

Last September, the night before Patrick’s checkup at Seattle Children’s and then our flight home, we sat down to talk with our friends the Laylands. I don’t remember exactly the question they asked, but Brian answered the same thing I was thinking. It was time for a second opinion.

Seattle Children’s is a great hospital, but their intestinal transplant program is young and small. They barely do more than one transplant a year. Last year, they did none.

And while I am not eager for Patrick’s transplant to come, necessarily, because he is so healthy and happy.. I am also terrified of the prospect that it will come too late.

It is getting harder and harder to get a good central line (IV) in him to give TPN through. We’ve been limping by for 9 months with one that isn’t working well just because we are afraid the next one will be even worse. Other problems come along, too, the longer he waits for transplant. Liver problems. Worse bacteria causing his infections. Everything risky now gets scarier the longer he waits.

And so, as those possibilities become more and more probable, we think that it would be wise to have him cared for in the kind of hospital that regularly see that kind of complications. We don’t necessarily believe that a transplant will come any faster if we make a change, but we hope that we can involve doctors, nurses, pharmacists, etc. who aren’t seeing these complications for the first time.

So, last fall (I think it was October), I called the University of Nebraska Medical Center. I told them about Patrick. They sounded almost giddy about his case. (Have I ever mentioned that Patrick is an interesting case?)

We talked about what their program could offer. Nurses with more experience working with patients whose veins are bad. Testing to map Patrick’s vascular system to find less-conventional central access.

And we decided to try to go ahead.

At first, the insurance company pushed back. Transplant evaluations are expensive. They weren’t going to just pay to repeat the process to satisfy my curiosity about another hospital.

But while they were ruminating on that idea, we told Patrick’s GI, Dr. Jackson what we were considering doing. I expected his response to be uncertain. He likes the team in Seattle and recommended them to us. But he was enthusiastic about having another, more experienced team take a look.

And so, when he put that opinion in writing, the insurance company stopped fighting back. If Dr. Jackson wanted a second opinion, a second opinion we could have.

But, then they announced that they were making some major changes to how our out-of-state medical insurance would be handled.

And we were in the midst of the beginning of the holiday season. And so, we let it sick.

Finally, in January, once all the insurance had switched over, I made some calls again. We made some hurried plans to do an evaluation a month later.

And that is what brings us to where we are today.

I am a nervous wreck about this trip. They will do many more tests than our initial evaluation. X-rays, scopes, fluoroscopy, and a liver biopsy. 3 consecutive days of labwork. Two days of sedation. One night inpatient. And lots and lots of appointments. I hope my activities bag is big and interesting enough.

The week the schedule came, I had migraines for the entire week.

I’m scared of going somewhere unknown. I’m scared of trying to work with a new team. I’m scared to be leaving my awesome friends and support system in Seattle. I’m not at all happy that Omaha is not a fun winter vacation spot. Or much of a vacation spot at all. I’m worried that this isn’t a children’s hospital, even though children make up most of the intestinal rehabilitation population and they surely are used to working with them.

On the other hand, I am excited to have a more complete picture of how Patrick’s health is holding up right now. And to get a fresh set of eyes to look at the problem. It’s been nice making plans with a team used to helping families lug TPN across the country.

And I have very high hopes. This hospital has an amazing reputation. So far, the team has really impressed me. The cost of living in Omaha post-transplant should be much lower. And it’s not much farther than Seattle.

But first, we’ve got to get there and see if it’s all it’s cracked up to be. And getting there has been no small feat.

We are grateful for the COTA fundraising we’ve been able to do and the donations you all have made because, while insurance is covering these tests, they aren’t covering the trip this time, and that will add up.

On top of that, we discovered major plumbing issues in our crawl space last week and had to squeeze in some major repairs. And, I lost the diamond from my wedding ring this week, which will be no small cost to repair.

So this is one time where your donations really will save us. We couldn’t afford this second look without them.

And, despite all of that drama, and Patrick catching a bugger of a cold, to boot… The bags are packed and the plans are made and in just a few hours, we’ll be checking into our room at the Nebraska House in the Lied Transplant Center in Omaha.

I hope to post updates as they come. I learned last eval that there are days that are harder than others, though… And some news that we’ll need to ponder on. I’ll do my best to post as soon often as soon as I can.

At last… At long last! Patrick was excited for Christmas this year. The whole season was wonderful.

Brian hung the Christmas lights on time to turn them on Thanksgiving night. Patrick laid in bed and looked at them each night and smiled and got up every morning excited to see them.

I got out the Christmas tree during his nap one day. He spent the entire afternoon hanging all the ornaments on a single branch. He loved it so much, I got out three more Christmas trees so we could do it again.

Macy’s was donating $1 to Make a Wish for every Santa letter mailed from their store. So Patrick and I wrote a letter. He wanted Santa to bring him a car. I showed him how to lick the envelope to seal it. He licked it. Until it was sopping wet. And then he took a bite.

And then he stood on his tip toes and mailed it. And made me write one then and there and mail it, too. I asked Santa to bring him a car.

We made ornaments. Lots and lots of ornaments. And hung them on the tree. And mailed them to family.

We went to Festival of Trees. Patrick was old enough for Kid’s Korner. We bought tickets and made lots of silly stupid crafts, most of which were broken and discarded soon afterwards. We got his face painted. He sat on Santa’s lap. He asked for a car.

He kind of smiled for the camera but the photo looks funny because he had a Christmas tree painted on his face. He actually wanted to see the trees this year.

We made cookie mixes.
We made so many cookie mixes that the flour got on Patrick’s hands and then in his eyes, and it hurt so bad we had to go wash his face.. Then asked to go back and we did it all again.

(Yes, with more hurt eyes.) I about bubbled over with the joy of finally finding a way for Patrick and I to bake together. (Just let someone else add the eggs and butter.) I took too many pictures.

We went to zoo lights. He ran around excitedly from one display to another. He wouldn’t walk inside the “tunnel of lights” because it was too exciting.

 

We drove an hour to take a “sleigh ride to Santa.” Patrick was less than impressed by the sleigh ride. Or the car ride.

But he was excited to see Santa. But Santa had a car RIGHT THERE in the workshop and he didn’t give it Patrick. We assured him that it would be worth the wait.

We drove to Layton for the HopeKids Christmas party. Patrick got the meet the Disney princesses. Belle let him wear her gloves and Alice, her headband. There was a magic show. Daddy helped Patrick catch a t-shirt. He met Santa again. And asked him for a car… again. By now, candy canes were renamed “Santa canes.” He was given a Dream Light that he now can’t sleep without.

When I was growing up my mom had an advent calendar on the wall. It had 24 slots that we filled with 24 daily activities till Christmas. I found a pocketed calendar and decided to do the same in our house this year. Can you tell it went over very well?

It’s been a lot of years since I got to see Christmas through the eyes of a child. This was a very magical Christmas season.

At age 4, we have finally started ordering Patrick food from the children’s menu sometimes when we eat out. Not so much because we expect him to eat it, but because his tastes differ from my tastes and it’s no longer practical to share.

Here is a sample of a restaurant meal for Patrick. On the left, the food we ordered for him from the kid’s menu. Spaghetti and french fries. On the right, what he will actually eat.

The rest comes home, goes in the fridge, and is leftover for a week, at which point we throw it away.

But it’s a few dollars to let him choose what he wants to eat. Which, we you don’t eat much, kind of matters.

(P.S. At the end of this meal, he stopped at each table on the way out to personally say goodbye to all of the other diners.)

After seeing how much playing outside helped Patrick this year, I resolved to do better about letting him play in the snow this winter. We bought him some snow pants and some awesome snow boots that give his ankles enough support to not require a brace, even in the cold. And we topped it all off with an awesome own hat.

Mix it all together. Add one creative daddy willing to move all the snow from the front yard into one pile and make a snow slide. And you have some winter fun.

Or add some hungry missionaries willing to call playing in the snow with a toddler a service project while they wait for dinner. That works, too.

But I failed Patrick. I didn’t buy him waterproof gloves yet. And therefore, he’s not willing to touch the snow. Even if you put him in it like an overturned turtle.

And so Patrick prefers to play in the snow a little more like this…

Next to, but not in it.

Which seems a shame in a year with record snowfall.

One thing about having a child with special needs is that it means that birthdays come with an additional “treat.” The annual IEP meeting.

IEP stands for Individual Education Plan. It’s an outline specific goals that the school is going to help your child to accomplish in a school year and what services the school is going to offer to help make sure those goals are met.

IEP’s can be a great thing, but the creation of them is something that is often something parents dread as they so often find themselves having to fight to get their child the services they need. They require a meeting with a room full of people to complete. We literally fill a board room table with the teachers, district representatives, district nurse, speech, physical and occupational therapists.. and then little us at the end of the table. You have about an hour to go through all the formal documents required by law.. and to get goals written.

Patrick, though, was blessed with an amazing special education teacher and she did an amazing job for us this year. She started talking to me and to Patrick’s therapists about a month before the IEP meeting. She invited me into the classroom to sit down with her and go over goals. She even let me type up my thoughts. Then she took my concerns and discussed them with the corresponding therapists. She called it “the most collaborative IEP” she has ever written.

And I just thought.. well isn’t that the way it’s supposed to go?

But we were really happy with the result. First of all, over the summer and the first month of school, Patrick met or exceeded almost all of last year’s goals. The ones that weren’t met, we were able to rewrite so that they were more appropriate for him. So instead of writing that Patrick was going to use three word phrases and not caring what the words were, they wrote a goal for him to use both a subject and a verb. We made a goal for him to learn to use scissors and markers and to draw a line. We wrote goals for him to learn to jump. And a great big, very carefully-worded goal about Patrick learning to take care of a little shopping cart with his backpack in it so he can go where he wants at school.

As far as IEP’s go, it was a work of art.

But that was just the tip of the iceberg. Because of Patrick’s recent explosion of language, his teacher had started to worry about whether or not he was getting enough peer interaction in the special needs classroom. Last year, his classmates were at or just above his level mostly. But this year, he is a different kid and ready for some friends his age.

And so, we made a plan to transition Patrick into the regular preschool classroom at his school.

What a big leap of faith that was for me! Instead of one-to-one adult supervision, he’d be in a class with 20 kids and just 3 teachers/assistants most of the time. And those kids can all eat and all talk. There is more risk of allergens and more exposure to germs.. and who would change his diaper? And they’d go to recess in the winter.. but he gets cold fast in the winter and should he go?

And not to be petty, but it was this same class whose parents kept stealing the handicapped parking spots last year, leading to an argument that almost came to blows with a special needs parent. (I am pleased to report that this has NOT been a problem at all this year.)

But, over the next couple of months, he visited their class and I got a chance to visit the class and visit the teacher and especially see how happy Patrick was there.

And then, right after Christmas break, we made the switch. Patrick has LOVED his new class. I drop him off in the morning and walk him in to help him take off his coat and backpack and the fleece “scarf” I made to wrap around the keep his tubes warm. Then I help him find his backpack and sometimes help him and the other kids wash their hands.

Patrick’s spot on the rug is towards the back both for ease with his tubes and to keep him from bugging the other kids. (He likes to find their bellies and hold their hands.) He loves to talk about sitting on the rug.

His language just keeps getting better and better the more he attends. He comes home jabbering about his school day. It’s still in bits and pieces. But I’m catching on. Like the day he told me “Bear Hunt” and banged his legs, I knew they’d played “I’m going on a bear hunt.”

Best of all, I love that he is making friends. He talks a lot about the funny things Thred (Fred) did.. Or how he got in trouble for stealing Aiden’s spot on the rug and trying to tickle his back. And every morning when Patrick walks into class, I hear an excited “Hi Patrick” from one or another of the little girls.

We are seeing progress in other areas, too. Patrick loves crafts now. He sits and scribbles in a notebook and when something resembles a letter he comes excitedly shouting “Make K! K, kuh!” He’s cutting with scissors. He’s holding his pencil the right way. And.. it looks like he is left-handed after all. At least for now.

He’s hearing words and correcting his mistakes. I’ve been sad to see some things go. Yes is no longer “Ay”. Two is two, not “boo.” But it’s a marvelous tradeoff for hearing and understanding his thoughts.

Yes, big and good changes at school for Patrick.

When you have a child who just wants to bounce and crash, what do you do to celebrate his birthday? You rent a bounce house!

Actually, I really tried to talk myself into a smaller celebration this year but with Patrick’s future as unpredictable as it is, I wasn’t sure we’d find another chance. So, when I found a couple renting the awesome, super big bounce house with slide, we just decided to go for it.

Patrick eventually warmed up to it and loved the bounce house, but at first the blowers were just TOO loud.

Everyone had fun playing in the bounce house. Even the grown-ups. Though I tried to go down the slide headfirst and nearly gave myself a concussion.

Again, we did a hatbox cake. I took Patrick to the craft store and he picked out some Cars die cuts to decorate the cake with. We filled it with party favors.

We served glazed doughnuts instead of cake. The bakery even make Patrick a couple allergy-safe unglazed ones. But alas, his belly felt sick that day and so he didn’t eat.

We kept the party small as far as guests go, but Patrick did have a favorite friend there. There is a little boy who goes to school with Patrick who has a very severe degenerative brain disease. He doesn’t have much control of his body and doesn’t walk, talk, or play like other kids his age can. And yet, he has totally won Patrick’s heart. When I asked Patrick’s teacher which classmates should be invited to the party, this boy was an easy answer. Patrick thinks he is the best friend a boy could have. Funny how these special little children steal our hearts. We were thrilled that he and his mom and sister could join us.

Patrick had fun opening presents and his guests enjoyed their “bounce” themed gift bags as well.

Simple and a little too extravagant all at once. And a wonderful way to celebrate a miraculous little 4 year old.

I hate catchup posts. I hate that I’ve let this blog fall behind. And yet, I am woefully behind and have some big things coming up I want to write about as they happen.. So, get ready for the week of catchup posts. Today’s topic? Halloween and birthday.

Somehow in our morning talks about upcoming events, Patrick figured out that his birthday and Halloween were the same thing. And so, for at least a month, whenever you asked him what he was going to be for Halloween, he answered 4.

So, after some consideration, we finally figured out how to make that costume happen and had a friend who is a much better seamstress than me make him a “Super 4” costume.

One of the great things about it was that it was comfortable enough for him to willingly wear all day. He had school that morning and I wanted him to be in a costume he’d be happy to keep on.. And, other than the cape that bothered his neck, he willingly wore it all day long.

I found some bendy, stretchy tubes at Toys R Us that Patrick’s therapist had been nuts over and so I got several and sent those with Patrick to school. The teachers were nuts over them, too. As were the kids. I guess they’re a favorite therapy toy there, too and the kids were thrilled to each have their own.

We got him up early for presents so he could be on time for school. This year, we got him some big noisy lights-and-sound trucks. Patrick’s big time into fire trucks and police cars. And then, because Daddy has been taking ice skating lessons and Patrick had taken an interest, Patrick got a pair of toddler roller skates. You know, the kind that you can lock the wheels on. He wore them around the house for most of a week and after the first couple of days, even learned not to fall down wearing them.

(As we’ve had a rather icy winter, it’s been neat to see him consciously transfer this skill. I just remind him to walk like he’s on skates, and all of a sudden, my clumsy, impulsive boy slows down and stops slipping and sliding.)

Rather than spending a lot of time trick or treating for candy that Patrick can’t eat and could potentially have a life-threatening allergic reaction to.. we decided to let Patrick help hand out treats this year.

Instead of candy, I got a bunch of toy airplane kits for about the same price. Patrick handed out a few, then went with daddy for a walk to visit some neighbors, trick or treat a bit, and show off his costume. Then he came home, we ran out of treats, and tucked him into bed.

I am astounded at how far Patrick has come in these 4 years. He was so tiny and fragile when we met him. We wondered often if he’d hold onto life for very long. But Patrick isn’t just hanging onto life.. He is living and celebrating it each day. We have been blessed by quiet normalcy in this past year. And we have watched Patrick grow into an amazing, rough-and-tumble, thrill-seeking, heart-winning little boy. Instead of being tiny and light, he’s solid as can be and a force that can’t be stopped.

I’ve been seeing ads for weeks about a petting zoo open for the month of October at a shopping district called Gardiner Village. I finally decided that if we didn’t get to it soon, the chance would pass.

Tuesday were $2 days. So I texted Brian’s sister to see if she and Patrick’s cousin would like to join us.

With a bag of feed, the animals were more than happy to see us. This goat was especially hungry today. Another, smaller goat, preferred the idea of munching on Patrick’s TPN tubes and I had to keep a close eye out.

The alpaca was a favorite of Patrick’s. When he first climbed on, she got excited and ran away. So the keeper had her sit down, Patrick climbed on and hugged and hugged her.

That was such a success that I decided we had to splurge the extra $2 for a pony ride. (Especially since the ponies weren’t tied to a wheel, but went for walks through the village instead.)

Patrick’s pony was named Silver. Hi ho silver, away!

For Patrick, though, the best part of the day was holding a rabbit. This little sweetheart of a bunny was SO tame! Patrick fell in love immediately and squeezed her so tight I had to keep reminding him to loosen his grip. He asked me if he could keep her. He asked if he could take her home. Too bad Brian is allergic.. and I can barely keep houseplant alive while caring for Patrick, let alone one more pet.

But Max isn’t soft and cuddly and he certainly doesn’t let Patrick hold and cuddle him.

So, all afternoon and evening, Patrick talked about “hold rab-rab”. He even prayed about it.

Patrick’s cousin was nervous about touching the animals. Thankfully, though, there was a whole “village” to explore.

They loved finding and “counting” the pumpkins.

Patrick found the witches fascinating. His cousin wasn’t 100% certain they weren’t real.

But they both had a pretty fun morning. It was a great kickoff to our Halloween/Birthday celebrations.

Today was our Primary Program at church. If you’re not familiar with the Mormon Church, Primary is the children’s Sunday School program. And once every year in Sacrament Meeting, our main worship service, instead of sermons, the Primary children and their teachers give a program that teaches what they have been learning that year in Primary. It’s made up of lots of songs and cute little parts spoken by children in turn.

Patrick had a part. “When I pray, I feel better. Heavenly Father loves me.”

Ok, the part was longer at first, but too long for him to say. So we broke it down into a shorter message that he could pronounce or sign without much help. We’ve been practicing it for a month.

9 words doesn’t seem like much. But for Patrick, saying those 9 words in public was an enormous undertaking!

First, Sacrament Meeting is just hard for Patrick. The lights. The people. The expectation to be quiet and still. It’s a lot for a little boy with sensory processing issues to handle. And to participate in the program, Patrick had to sit away from mom and dad. On the stand where he could see everything.

Then there was the microphone. Most kids by the time they’ve been in Primary a year, have stood up at the microphone in the Primary room a few times to say a prayer, read a scripture, or give a talk. But Patrick, because he doesn’t talk much, has not. He was both thrilled and intimidated when they stood him up at the little microphone in the Primary room to practice. He just wanted to play with this new toy. We practiced a lot with the microphone. He really liked the way it made his voice reverberate and I was pretty sure he planned to shout in loud, long echos, the words of his part.

And then, as if nerves weren’t enough for any child, there’s his apraxia. Remember that apraxia is a result of his brain injury. It means that his brain has a hard time telling his mouth how to make sounds. He understands just fine. But getting words out is a very difficult task.

Because he understands, Patrick is aware of how awkward his language is. And, although he’s not normally a shy boy, when asked to speak he gets quite nervous.

We went to a practice yesterday morning. I stayed for support, but hid out of sight. And because Patrick was among Primary friends where he was safe, he played and jumped and shouted words he knew from the songs. And, with some coaxing, did a remarkable job saying his part when his turn came.

So program day came. Patrick sat with mommy and grandma until after the sacrament was over. (Teaching a teacher how much bread to let Patrick have to make sure that he doesn’t gag and throw up didn’t seem like a risk worth taking this year.)

Then, I took him to his seat on the stand. He played at first, but kept calling for my attention. Then he was done and wanted to come back to sit with us. When we didn’t let him, he cried. Loudly. Daddy went and sat with him and comforted him and stayed on the stand for the rest of the meeting.

When Patrick’s turn to speak came, I wasn’t really sure what would happen. But, he bravely walked with his teacher up to the podium and tried to kick it while he talked. It took a few nudges to get him to speak. And then, in a tiny little voice, so shy you’d hardly recognize him, Patrick repeated. “Wen I pay, i peel bebber.” Then, when it was time to sign “Heavenly”. (He can’t say it, but the sign for Heaven is very cute and he loves doing it).. he couldn’t because the leader helping next to the microphone was holding his hands. (so he couldn’t grab the mic.) I think that was a bit of his undoing and that sign never came. But he mumbled “Fadder wuv me”, I think. And then went back to his seat.

That’s it. 9 words. But spoken before a very big congregation. A glorious acheivement.

And a bigger miracle than most people there may have realized.

Fall is my favorite season. I love the cool of the air. I love getting my sweaters back out. I love the way the mountains turn all patchworky as the leaves change color.

I love that it’s my birthday and Patrick’s birthday and the time of year I got engaged in and the season we bought our first house in and the anniversary of our becoming a family.

But there is one thing I hate about fall. I hate the end of the harvest. I hate when the cold air turns my tomato plants all wilty and I have to pull them up and throw them away. All those beautiful green tomatoes. All that potential. Right in the garbage can because it’s past their season.

Today was that day. This is what’s left of my garden.

This year I grew my most successful vegetable garden ever. I haven’t had to purchase a tomato or pepper since early July. I ate buttered squash for lunch every day for months. I grew and learned to cook with fresh rosemary.

I loved working my garden this spring. It was the first time since Patrick came into our family that I’d been able to do so. And Brian and I loved spring and the joy of reclaiming our yard and turning it into a little paradise.

It seemed I learned so many lessons as I worked in the garden each day. I saw the importance of persistance as I pulled tiny weeds before they got too big.  And daily repentance as I saw flowers flourish each time I’d clip out dead old growth. I saw Patrick flourish, too.

He figured out that if he took his backpack with him, he could go further. And so, we threw it in a little wagon and he explored the yard and the street. He helped me plant seeds in the garden and especially loved helping to pull weeds.

In spring, it seemed like we had everything in control and all the world ahead of us.

Then summer was long and hot and hard.

And as fall came, things cooled off. We started to get some parts of our lives back in order. We’ve been working on fall cleaning.. getting our house in order. We’ve been working on getting Patrick settled back in school and planning to draft a new IEP for him. (Due next week.)

And the time came to call it the end of the season for my garden.

After learning so many wonderful lessons in planting, I couldn’t help looking for other life lessons in clearing of the garden. I mean, it just seems to dismal to rip out and throw away the plants you’ve tended all year.

But, if that work weren’t done, there would be no room for future growth. In fact, the soil is made best when some of the things we’d consider garbage (compost for example) are put to better use.

And this is perhaps the lesson I needed most today.

It’s been a hard week. A week and a half ago, I put Patrick down to bed.. Only to have him wake an hour later vomiting. Vomiting is not uncommon with Short Gut, but this time was awful. Dark green and strange smelling.. and he seemed so sick. And for the next several hours, I’d comfort him and put him back to sleep… only to have him wake up vomiting again.

Finally, I cuddled him up in the rocking recliner in his room so he wouldn’t be laying flat.. I put his belly to downdrain and I held him all night. He’d wake at least once an hour feeling sick again, but we made it through the night.

I kept him home from school the next day and called his doctor, who ordered some labwork to make sure Patrick was ok. We spent the day comforting him (he gradually seemed to feel better) and cleaning the house, washing laundry, and otherwise getting things in order in case things got worse.

Friday morning, he still wasn’t quite himself, but I’d decided it was just a stomach bug. Sadly, the labs didn’t agree. One of the blood cultures was positive, and so they called us into the hospital to start treatment.

He had an amazingly good night in the hospital and by morning, we’d all decided the positive culture was a false alarm. We made plans to go home.

Only Brian’s car was in the shop (his new engine has failed) and so I had to wait for him to get off work to take us home. And right before time to leave, I got a call saying that Patrick’s second set of cultures was positive and that Patrick did, indeed, have a line infection.

But, as Patrick’s GI was the attending, they decided to still let us go home and treat the infection from home.

The rest of that weekend was busy with antibiotics and labwork and trying to keep a sick boy feeling better. By Monday, things were finally seeming stable. Patrick even went to school. (His teacher was so pleased that he was allowed to come even with an infection.. Strange.)

We have about a week left of treatment and things are getting better. We still have middle of the night antibiotics and benadryl pretreatment making Patrick feel tired and crazy. Patrick’s belly is still very sick, dumping a liter and a half a day again and making me worry about new dilation and bacterial overgrowth. His button is tender for some reason, too. Two nights ago he could barely sleep because without it on, he’d throw up and with it on, he was in pain. (Finally figured out to how secure it to pull less and, with some pain meds, he could sleep.) But on top of all of that, there’s a weak spot in his line and soon it will HAVE to be repaired. Brian’s car will be gone at least one week more and so we’re juggling getting him to and from work. And I feel like I’m swimming upstream when it comes to getting anything done around the house.

I can feel the weight of all the things I wish we’d done this year, but didn’t do because health or work or something kept us away. And the weight of all the things I still should do, but just can’t get to.

And I’m beginning to feel like the fall chill is turning my leaves wilty, too.

Sometimes this all seems like more than I can do.  And yet, every morning, we get up and we keep going.

And so, if I choose to take one lesson from clearing my garden today, it’s this. Things can’t stay beautiful forever. We do not live in a Garden of Eden continually producing beautiful fruit and flowers. We live in a real world with weeds and frost and compost.

And sometimes the very best way to bring a good harvest is to just take out what is spent, what is dead, what is gone. To just do the ugly work and wait for a warmer season when you can start over again.

If we always held on to last season’s plants, hoping for potential and those last green tomatoes, the ground would never be able to be prepared for a new season.

I’ve saved all I can. My gardening gloves have holes worn in the fingertips as evidence of the work I’ve done. Perhaps a symbol, too, that I have given my all to this special needs parenting thing.

So bring on the canned pumpkin pie and the frozen turkeys. I’ll bask in the harvest of Patrick’s astounding new language skills. And look forward to birthdays and holidays and leafpiles. And maybe plant a few bulbs so they can tell me when spring is here again.