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This week in Sunday School, we studied the account found in the book of John Chapter 9 of Christ healing the blind man. For the record, this has become one of my favorite stories in all of scripture.

If you don’t know it, or don’t remember, here’s a brief summary.

Jesus and his disciples pass a man who is blind. For some reason, the disciples ask Christ about the man’s blindness, wondering if it perhaps came from some sin. Jesus answers that it was because of no sin, but that the miracles of God may be made manifest. He then spits in the dirt, makes clay, puts it on the man’s eyes, and sends him to wash in the pool of Siloam.

The man does so and receives his sight.

The result of this action, performed on the Sabbath day, is a huge debate. The healed man is subjected to what appears to be a day of questioning by the Pharisees, the local leaders. His parents are even questioned. At first he knows little of Christ, but as the Pharisees press him to deny the source of the miracle, his determination that the act came from God only grows stronger.

In the end, the man refuses to deny Christ and is cast out of the synagogue, exiled from society. Christ comes to him and teaches him that He is the Son of God. The man immediately believes.

Now, there are a lot of reasons that I like this story. But there is one reason I’m chosing to share it today.

I am an activity day leader in my church. Twice each month, I organize an activity for girls age 8-11. We teach them new skills, play games, do service projects, etc. I recently learned of a girl who lives in our neighborhood who has shown an interest in coming to church and to these activities. I went last night to meet her.

The girl is mostly blind.

As soon as we set foot in her house, she was beaming. She fell in love instantly with Patrick, bringing him toy after toy to play with.  She listened as I explained to her that he has feeding tubes attached to him, carefully let me guide her hands so that she would know where they were, and then once she knew it was safe, happily helped him to play.

Patrick in turn fell in love with her. He even came home wearing a friendship bracelet she gave to him.

As I watched these two children play together, my mind returned to the story from Sunday School.

Many people look at a child with a disability with sadness and pity. But as this girl’s mother and I discussed last night, these are just normal children with one extraordinary thing about them.

I don’t believe that a child is born blind or with a severe birth defect by accident. I believe, instead, that these valiant spirits are chosen, or perhaps even chose, to take on bodies and lives with more difficulties, knowing that from birth they have the kind of faith that works miracles.

I think that when Christ healed the blind man on the Sabbath, it wasn’t done in ignorance of the consequences that would come. But I think he knew of the caliber of that man’s soul. And he knew that through that man’s life, many others would be blessed.

I have seen my own son’s life build the faith of those who meet him, too. And I saw my faith grow last night, too in the presence of a little girl whom I’d just met.

 “And as Jesus passed by, he saw a man which was blind from his birth.

And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.”

As I said in my last entry, I promised I’d share with you the findings of the Upper GI Fluoroscopy done last Thursday as we left the hospital.

To begin, let’s have a refresher course on what a normal, healthy set of intestines look like. (Thank you wikipedia for the image.)

 

As I’ve mentioned before, Patrick is missing most of this anatomy. Instead, he has only the duodenum and his descending colon. In the image above, that would be the little dotted line that goes from the stomach to the small intestine, and the long straight right side of the colon that connects to the rectum.

Now let’s have a look at an image taken a month after the surgery that reconnected Patrick’s small and large intestine in August of 2009.

Notice that the small intestine (duodenum) is enlarged while the large intestine (colon) is narrower than it should be. At the connection between the two is a very narrow surgical connection that is at best no larger in diameter than Patrick’s finger.

Ok – now let’s look at the image taken just last week.

Can you see the problem? Yeah, the narrowing is just as small as it was, but the duodenum has been stretched and stretched and stretched until it fills half of Patrick’s abdomen. We know from sad experience in tummy draining and vomit that this can hold approximately half a liter of fluid. That’s about a soda can worth of bile. And since it can never empty completely, it’s always secreting trying to digest the fluid that’s already in it.

The good news is that the colon is a nice normal, healthy size now.

So you may be asking, what can be done?

Well, of course surgery would be an option. They could revise the connection… but intestinal surgery is painful and tricky and dangerous. A transplant would definitely be the very best solution. But, as we don’t know how soon a transplant will come, and we don’t want this problem to get any worse and risk bigger problems like total loss of motility (Oh my GOSH does this intestine move now!).. or worse yet, rupture.. we can’t afford to keep waiting for transplant to fix this problem.

So, we’re going to start with an attempt at the less invasive. A bowel dilation. Here’s what will happen. Patrick’s GI will put a scope down his throat and into his stomach and then intestine. When he can see the narrowing, he’ll follow with a guideware that will go through the anastamosis. (Vocab word: That’s a surgical reconnection of intestines). Then, he’ll run a balloon over the wire and slowly inflate it, hopefully stretching the narrowing to a more manageable size.

If all goes as hope, then instead of all that bile sitting in his small intestine, he’ll be able to pass it through his colon and he’ll start pooping… a whole LOT. But at least it won’t be sitting, and at least he won’t be vomiting. And the intestine will rest and be able to shrink back to a more normal size. Making it much healthier for transplant.

Or so we hope.

So, Dr. Jackson is talking to Patrick’s surgeon and to his transplant team about this plan and then, if they give the go ahead, then he’ll schedule for this to be done outpatient as soon as it fits onto the schedule.

Since he’ll already be sedated, we’re going to save Patrick another painful scary memory and will have them do the botox shots in his leg at the same time.

That’s the problem. And that’s the plan. It was definitely interesting to have a look under the hood at the cause for all the symptoms we’ve been seeing.

I have a new vocabulary word this week.

Rigor:  (n.) a sudden feeling of chilliness, often accompanied by shivering: it sometimes precedes a fever.

Tuesday morning, I woke up to the wonderful sloshy sound of Patrick throwing up in bed. As is often the cause, his g-tube had stopped draining during the night, leaving his stomach overfull. I jumped out of bed, woke Brian to help, and went to the task of comforting, cleaning, and redressing Patrick. We made relatively quick work of it and by 5:30, Patrick had fallen back asleep in my arms. Brian put the bed linens in the washing machine and had gone to shower for work. I was drifting back to sleep myself.

A couple of hours later, Patrick woke up again. He seemed tired still and his eyes were bloodshot. My gut said that things weren’t quite right with him and I decided to keep him closeby. In fact, I even opted to take him in the shower with me to wash the vomit out of his hair just because I thought quick and close to mom needed to be priority. Then, I dried him off and changed his dressing, as it had gotten quite dirty, too, and we headed downstairs for breakfast.

Breakfast for Patrick usually means that I give him a cup of his special formula and some toast or tortillas or other finger food. Meanwhile, I draw up his medications, take the ethanol lock out of his line, and start his IV motility medication.

That morning, though, he was having none of it. He wouldn’t touch his drink and just started whimpering to be held. I was worried, so I took his temperature. Only 99.1 F.  But, as I worked to quickly give his medication, Patrick started to shiver on and off. He was whimpering a little and begging “mamma”.

This concerned me, so as I started the IV meds, I called Brian to tell him I was calling the doctors to request blood cultures. I’ve seen those “chills” before and knew they meant bad news. Brian agreed with the choice. Then I moved Patrick to the living room and offered to turn on Bob the Builder for him ( a.k.a. “diggers”) – his fall back comfort viewing when sick. He told me no. I asked him if he wanted doctors. He said “doctors” and reached for me. And then the shivering got worse.

Still no fevers, but I was worried, so I wrapped him in a blanket and started packing for a trip to the hospital. He started to really cry and his hands got cold as ice. Brian replied to my message saying I was going to the ER with an offer to come home and pack for me later. I knew that was right, so I stopped packing. I grabbed the diaper bag, a day’s TPN and medicines, and my spare keys (couldn’t find my keys and felt I didn’t have time to waste.)

It took 40 minutes to get to the hospital. Patrick cried and shook uncontrollably for the entire drive up. I valet parked the car – I didn’t dare take the extra time to find a parking space – and hurried into the ER.

I’d called ahead so they were expecting us and took us to triage right away. There they took Patrick’s temperature. 103!! The nurse gave him a dose of Tylenol and showed us to a room.

Thankfully, the Tylenol helped and Patrick’s temperature came down. Finally snuggled in my arms, the shaking stopped and he came back to himself quickly.

Dr. Jackson, his GI, was the attending this week, so he came and met us and prescribed some IV antibiotics. We agreed it was best to stay the night at least to make sure Patrick didn’t get worse or have reactions to the medicines.

By noon, cultures were drawn and antibiotics were running. I realized I had left so quickly I hadn’t even had a drink of water, let alone breakfast, all morning. So, I called a volunteer who came to sit with Patrick so I could eat and get my car from the valet. Then, we moved upstairs.

Patrick was old enough this time to “graduate” to the big kid medical unit. They gave me a choice and I told them we’d go whereever. With cold and flu season not quite over and an outbreak of rotovirus going around, I wasn’t disappointed when we were put with the big kids. In fact, I think Patrick kind of liked it. It meant more freedoms for him. And we were still able to walk just down the hall to visit with him favorite nurses.

In fact, the only difficult part about it was not having our primary nurses there. Patrick is far from a simple case and it’s easy to make mistakes. In fact, I’m always surprised if there isn’t at least one dangerous mistake made. (This stay was no exception, but things turned out ok, so I won’t go into it.)

By the time we made it to the room, Patrick’s temp was just over 100. He was active and happy and you’d never have guessed he’d been so sick in the morning. He didn’t need another dose of fever reducers again.

The admission was busy. It takes time to give Patrick’s history and explain how to give his care. I asked for orders to be written “per mom” as often as possible. Thankfully, this resident was willing to oblige and I kept control of as much as the hospital would allow.

Finally, on our way back from a chest x-ray (to check for pneumonia) Patrick had had enough. He just snuggled down and fell asleep in my arms.

I didn’t mind. It gave me time to catch up with one of the residents who we love the best who cared for Patrick back when he was in the hospital all the time. She was as excited to see us as we were to see her, and got quite tearful when she learned that Patrick was now walking and talking.

We ended up staying two nights in the hospital, waiting for lab results to give some explanation of the sudden high fever. Besides our usual complaints of no sleep, though, it wasn’t a bad stay.

At first, they asked for him to be kept on monitors, which is nigh unto impossible for a 2 year old. He couldn’t hold still enough for them to read most of the time. So, we got lots of toys and books to try to help the job.

Then, they gave permission to turn them off. Patrick figured out how to push his IV pole and was more than content to spend whatever time was allowed wandering the halls of the hospital. We visited his friends in the Infant Unit. (All of whom beamed to see him grown and walking). We played in the play room with his favorite Child Life specialist. We went out to the patio and to the cafeteria and to the garden. We rode the elevators up and down over and over again. (I’d ask him if he wanted elevators. He’d make and elephant sound. Still don’t know if he’s disappointed I never ended up taking him to the zoo.)

And inbetween we took long naps and watched Bob the Builder and Cars on my laptop. Patrick figured out how to use the footrest of my chair as a seat, and then to climb up in to look out the window where he could see the road coming down from the University and a steady stream of cars.

Patrick thought it was very cool that “co-co Ja-ja” (Doctor Jackson) stopped by to play every day.

Finally, we made plans to go home without a diagnosis and without antibiotics and just hope that it had been a weird viral fluke. Then, half an hour later, the lab called to say that a bacteria had grown. He had Coag Negative Staph growing in just the lumen where his TPN was running. The fact that the sample drawn from his foot didn’t grow any bacteria probably means that we caught the infection just after it got in and hopefully knocked it out right away.

So, yesterday we were discharged to home with orders for blood cultures to be drawn for the next several days to verify that the infection is gone. Also, he’ll finish 2 weeks of IV antibiotics here at home.

A couple of good things came out of this stay. First of all, I’ve been trying to tell Patrick’s GI that his output seemed to be getting higher and higher for the past several months. But, having him in his care in the hospital really drove home just how high I have been trying to say it was getting. And it made him ask why.

So, we talked about how it was most likely a result of the surgical intestinal blockage we have known about for a long time. And how not much can be done without posing a risk to transplant. At first, Dr. Jackson said that maybe he’d prefer not to know how bad the blockage and resulting distension had become, if we couldn’t fix it.

Then yesterday we decided that he should discuss the problem and possible solutions with his transplant team in Seattle. He called and talked to Dr. Horslen and they agreed to look to see what could be done.

So, half an hour before we were supposed to leave the hospital, Dr. Jackson dropped in to say that he’d like an Upper GI contrast study… the one where they put contrast into Patrick’s belly and then watch it move through on X-ray to see what his intestines look like.

We decided to take advantage of the fact we were inpatient and quickly squeezed this test in before going home.

I think I’ll wait to tell more about what we saw until I’ve had a chance to discuss the results with Dr. Jackson this Monday. I’ll say this, though. If you’ve ever watched me drain a half liter of fluid out of Patrick’s belly all at once and wondered where it came from – well now I know. Patrick’s duodenum has stretched big enough to hold it all. Now we just have to decide if we try to do anything about it.

We got home last night around 4:30 p.m. Patrick happily went right to bed and slept for the next 4 hours. He got up at 8, played a while, then went back to bed at 10 and slept till the phone rang at 9:30 a.m. today. He was very happy to see his own room and his own bed.

And I am working hard to re-enter my normal life, to clean up the mess I abandoned on Tuesday, to keep up with the new medication schedule, and to find my sense of sanity and order again.

I much prefer the “rigors” of daily life.

I’m taking a time out. Right now, I could be in Sunday School, and to be honest, my heart breaks a little bit every time I can’t be there. Keeping yourself spiritually afloat is harder when you have to do too much of it on your own. But I could not push my little Patrick any further today than attending an hour of sacrament meeting today. His little body has had enough for one weekend. It was time to slow down. And so we are home having naptime. (Mine begins as soon as this post is written and my mind begins to rest. Blogging is therapeutic.)

My Sunday School lessons will have to come from LDS.org today. And in lieu of his nursery class, Patrick and I will have a nursery lesson of cutting pictures of Jesus out of church magazines to make a sacrament quiet book when he wakes up.

Our afternoon will slow down for a couple of hours. And we’ll make this a day of rest.

Some of the burden of this necessary time out falls on me. Sometimes, I try to make us do too much. And this week has been one of those weeks. Since Thursday morning, our family has participated in an Easter Egg hunt, a webinar on SBS diet, a 2 hour conversation with the IRS, Boy Scout roundtable, a relief society fireside, an elementary school jump-a-thon, music class, and two hockey games. On top of that, we’ve shopped, cleaned, and worked in the yard, moved large furniture, sorted medical bills, done 6 batches of laundry, and planned Sunday dinner to be hosted at our house for us and 6 other people.

I don’t know why we try to do so much sometimes. We are certainly abnormal in the community of parents with severely medically fragile children for trying to do many normal things. This is a blessing to us and we feel helps Patrick to live his life to the very fullest.

But sometimes one little thing goes wrong, and like a tiny string when pulled can unravel a larger garment, a slight glitch can unravel the delicate balance of “normal” in our lives.

 

Patrick wasn’t quite himself yesterday. He seemed a bit dry and he seemed a bit tired.. But when I checked, his pumps were running, so I just programmed his replacement fluids to run all day instead of for just a couple of hours and went on with the to do list of the day.

He seemed tired early, so I put him down for a nap.. which lasted a long time and I finally woke him because we’d promised to help with some work for Brian’s parents. But when he woke, he was tearful and sleepy. So much so that I didn’t make him wear his brace and let him bring his pacifier.

While Brian worked, to stay out of the way, I took Patrick to the dollar store to shop a bit for Easter. We’d been gone for about an hour and he’d seemed tired, but mostly himself… Until he wasn’t. He put his head down in his arms and kind of whimpered and I knew in my core that something was wrong – not just a little, but a lot.

I rushed to the checkstand, bought what was in my cart and made a hasty retreat back to Granny and Papa’s.

But he wasn’t running a fever and nothing else obvious was wrong. Nothing I could tell a doctor about, at least. His TPN beeped that it was done for the day and I took it off, then sent Patrick outside to play with Papa while I got the next day’s TPN ready.

 

That’s when I found what was wrong. The bag was full. The pump had said it was running, but from the appearance of things, little if nothing had actually run. The replacement fluids alone had been sustaining him for the day.

To put this in perspective, because Patrick is 100% TPN dependent, he doesn’t get nutrition or hydration from any other source. For him, 24 hours without TPN is like 24 hours with no food or drink… only worse, because his stomach and gut still continue to lose fluid and nutrients, causing severe dehydration. And, because his body depends on a constant slow flow of IV sugars, when those aren’t running, he also becomes hypoglycemic.

I was amazed that he was still up and going.

Brian and I worked together to rush and get TPN back on, praying that the pump would come back to life enough to run while we got home to our spare. We gave Patrick a candy cane to get his blood sugar, which was 55 when we checked it, back up to a safe range. (Sugar is absorbed in the mouth, which is why you give juice and hard candies to a diabetic in trouble.) Then we rushed home.

While Patrick slept in the car, I started some additional fluids running and got a new pump ready for the TPN. He rested for the next hour, and was doing well enough to proceed with our plan for him to go play at my mom’s house while we went to a playoff hockey game.

But today, well, it’s obvious that his little body is still recovering. He’s been trying his best, but we could tell that he needed sleep.

And so here we are. At home, having a time out.

And as much as I wish I were there, I know that it was time to slow down and take care of essentials.

One of the speakers at the Relief Society meeting that I attended this week shared this quote from President Dieter F. Uchtdorf, a member of the first presidency of our church, a prophet and apostle:

“It is good advice to slow down a little, steady the course, and focus on essentials when experiencing adverse conditions. This is a simple but critical lesson to learn… but it’s surprising how easy it is to ignore this lesson when it comes to applying these principles in our own daily lives. When stress levels rise, when distress appears, when tragedy strikes, too often we attempt to keep up the same frantic pace or even accelerate, thinking somehow that the more rushed our pace, the better off we will be.” (Of Things that Matter Most, October 2011)

Now – one day, I will learn to simplify the rest of the week so that it won’t spill into Sundays and sabbath worship quite as often..So I won’t unravel so easily. For today, I’m just going to take a day of rest. Or at least an afternoon.

Have you ever noticed how easily toddlers learn to recognize and say the name “Jesus”?

When we took Patrick to Temple Square this week he was amazed to see full size versions of the paintings of Christ’s life that we have in our home as well. He’s drawn to his “Jesus Book”… and was just as drawn to those paintings. Even more, he couldn’t resist the urge to get right up close to the statue of Christ found in the Temple Square visitors center. Sure, there was an added appeal in the fact that the acoustics of the room are best standing right at Christ’s feet.. but his face showed that there was something more, as well.

Sometimes.. ok… most times… being mom to an active, strong-willed and yet medically fragile times is exhausting. And yet, there are moments when he shows me how I should be.

Like his excitement when he sees Jesus.

Or his friendliness. I don’t shop or sit in waiting rooms or eat in a restaurant or walk down a hall even without seeing the other people there anymore. Patrick introduces us.

Or his determination. This morning in the bathtub he wouldn’t get out until he had fully mastered the task of putting a lid onto a bottle.

Or his obedience. Ok, we still struggle with this one. But I beamed with pride last night when I crossed the street for something and looked back to see Patrick standing on the curb saying “Haa, haa. Ro.” (Hand, hand. Road.) He knew he wasn’t allowed to step into the road without holding my hand, had gone as far as he could, and stopped because he knew he should.

Or his trust in me. Your average toddler would not submit willingly, let alone try to hold still, while laying on a pillow on the floor, hands restrained in a blanket with mom’s leg across his lap while mom, in sterile gloves and mask, scrubs his chest with disinfectants and changes a central line dressing. Not to mention his patience for labwork, IV pokes, and any myriad of other uncomfortable and scary procedures.

Christ taught, “Except ye be converted, and become as little children, ye shall not enter into the kingdom of heaven.

“Whosoever therefore shall humble himself as this little child, the same is greatest in the kingdom of heaven” (Matthew 18:3–4).”

He also said, “Suffer little children to come unto me . . . for of such is the kingdom of God.” (Luke 18:16).

Children teach us to be more christlike, more holy, more pure. We are counselled to become “as a child submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon him, even as a child doth submit to his father.” (Mosiah 3:19)

And, in loving a child, we learn to understand our Heavenly Father’s love for us.

Although I often forget all this when Patrick empties a drawer for the fourth time in a day or crawls away from a diaper change half naked or pretends he doesn’t hear me tell him no, I have my moments when I remember. (Many when he’s asleep.) And I am grateful to be the mother of a child who is still so close to Christ, and is bringing me closer, too.

Here’s a recent talk about children that really struck home to me.

I have sawdust in my underwear. Just saying.

It’s all because of this crazy weather we’ve been having. Even though it’s spring, it has snowed the past two weekends. Not light “winter’s almost over” snow, either. All day long, slushy, wet, heavy snow that took down two huge limbs on the trees in our backyard.

And tonight, it was finally warm enough on an evening that Brian was home to cut them up.. they’ve only been there more than a week. And at one point, a branch fell the wrong way and I had to help hold it while he cut it and, well, I got sawdust in my underwear.

That’s not the only thing the snow messed up. It messed with my car, too. Last Monday, after a weekend of wet, wet, wet snow, my car stopped wanting to travel above 60 miles an hour, or 45 even, if I happened to be trying to pass a particularly annoying vehicle. I discovered this on the freeway and it made me quite nervous. But it took till today for me to get it to the shop… only for them to not be able to find any evidence of problems. They tell me it got above 75 mph without breaking a sweat. But today it wasn’t snowing.

At least the only thing it cost me was a little bit of routine.

And the change in routine was actually quite a treat today. With my car at the mechanic, Patrick and I drove Brian in to work this morning. Then, after a stop at home to finish doing morning medical care and take naps, we packed up and headed up to the hospital.

Patrick had his semi-annual appointment with his rehabilitation doctor today. In case you don’t know what a rehabilitationist is, this doctor specializes in helping patients overcome injuries, illnesses, etc. that require some form of therapy.

In Patrick’s case, this doctor is helping him to meet developmental milestones, despite the damage done to his brain by his cardiac arrest. (I learned new medical terminology this month. “Anoxic brain injury” is the official name for what happens to a brain when your heart stops beating and delivering oxygen to the brain cells. I’m learning that this phrase is especially powerful, and plan to put it to good use as I work to coordinate services over the next several months.)

Back on subject – as usual, she watched Patrick walk, stretched his muscles to feel their tone, asked about his speech and other development, and declared him a miracle.

Still, there is no doubt that Patrick is going to need a lot more help to do what comes easily to other kids. He’s walking well now, but still with a limp and he still falls a little too easily. We decided to go ahead with some botox injections to help some of the more stubborn muscles to relax so that they won’t resist his efforts to learn to walk correctly. That will happen in mid to late May and hopefully will help him to be able to spend less time wearing his brace this summer.

We also talked about his speech and she said that she agrees with verbal apraxia as a description of his language problems. (Medical vocab lesson: verbal apraxia is a mixing up of sounds between the brain and the mouth. In other words, Patrick may think he’s saying words correctly, but they don’t come out right. Add possible right-side muscle weakness in his mouth, and it’s no wonder everyone thinks he’s saying “go” when he’s trying to say “car”.) We talked about making sure that he gets as much speech therapy as we can possibly get for him. (Ahem, nudge, nudge insurance company)… And using music, too. Apparently learning simple children’s songs helps the brain sort out the sounds.

Looks like a good excuse for me to try to go to more library music groups now that cold and flu season is coming to an end.

But, as a glimmer of hope, she couldn’t help but be amazed at how naturally Patrick is using his right hand… this is a sign that he can overcome the other difficulties, too… at least in my opinion. If I can just stay on top of things.

Yes, we fit all of that into just one hour of doctor’s visit.

And then, because we needed to also pick Brian up from work and make it to get my car back from the mechanic, I decided we’d play a while in the city. Since we were there on time for Patrick’s TPN break, we stopped at Liberty Park to let him play without his tubes. He took off his shoes and walked in the sandbox. (Pushing sensory limits? You betcha.).. Then let him play on the playground, go down slides, crawls through tubes, etc. He spent nearly 20 minutes on the swings and pouted when I made him get out so I could go prep his new day’s TPN.

And then back home to play in the yard while Daddy cut down branches.

It was nice to have a break from the cold and wet, even if it might be back as early as tomorrow.

At least we have these amazing snowy day pictures from our Saturday excursion to Temple Square to show for the cold, wet spring.

A week ago, I got food poisoning. I suspect my take-out egg roll. Whatever the cause, at 3 a.m. I woke up feeling like a New Year Dragon was dancing inside my abdomen. I barely slept, but tried to drag myself out of bed in the morning for a meeting with Patrick’s therapists. I was almost there, when a piece of toast did me in. Eating made the dragon renew it’s dance with added vigor. I cancelled the meeting, sent Patrick with grandma, then I spent the rest of the morning laying on the couch. By evening, I was mostly better, though bedtime and mealtime still caused belly aches for the next several days.

Coloring pictures and sipping on water with Daddy at a HopeKids family game night.

It’s been a long time since I had a stomach bug. One of the greatest blessings I’ve been given as Patrick’s mom is better than average health. I’d forgotten just how awful that feeling can be.

Having a stomach ache made me admire my little boy all the more.

This week, Patrick’s been struggling with bacterial overgrowth again. Because he’s missing the valve that separate the small and large intestine, and because his motility is so bad, Patrick often has problems with the bacteria from his colon growing rampantly in his gut and stomach. In essence, it’s like chronic food poisoning.

I think it’s time to tweak the oral antibiotics that treat this again. The current regimen lets this come back, almost like clockwork, every other week.

This morning, he started to not feel well and came to get me. But he wasn’t quick enough. Before I could get the equipment to drain his stomach through his gastric button, he was sick. Today it was especially bad and I had no choice but to leave him crying and throwing up with a towel on his lap while I made a mad dash for his “belly bag” to help bring it under control. Between what he threw up and what I drained, I estimate that there was at least half a liter of old bile sitting in his stomach.

And yet, this morning, as always after one of these episodes, as soon as the discomfort was gone and he was cleaned up and his clothes were changed and he’d had a drink of water and a hug and a kiss, he was back up and smiling and playing again. He is so strong and so patient!

Very often, his discomfort only shows itself when it comes time for him to try to sleep and he doesn’t feel well or he worries that he won’t feel well. Then, he tries to stay awake so he can keep acting happy. He did his best to change the subject and keep playing when I tried to rock him to sleep. He hates waking up sick. He’s napping right now with his belly to downdrain and extra IV fluids running extra fast so he won’t have belly aches and won’t be thirsty and won’t have to worry. I had to get all this in place them wrap him extra tight in an extra warm blanket until he finally quit fighting and fell asleep. He’ll need his rest.

People often comment to me that he looks so happy, so healthy, so good. Then they ask me if he’s doing as well as he seems. My answer is usually, “He is doing much better than anyone ever thought possible.”

This is true. Patrick is defying the odds in terms of health.

But the part I don’t often answer is that he is still a sick little boy and odds are his gut will only get sicker. He has heartburn and belly aches and often throws up.

Still, he has made the choice to be healthy as much as he can be. He has made the choice to be happy as much as he can be. He has made the choice to be undeterred by his pain and illness any more than he must be.

And he is teaching me a lot about bravery and patience in the face of belly aches.

Springtime has opened up a world of new possiblities for our family.

Now that he can walk, Patrick loves playing outside. This is new. Because he hates the feel of grass on hands or feet, Patrick has never been much of a fan of playing outside, and that translated in general to not wanting to be outside.

But now that he can walk, he loves it. He loves taking walks with his wagon, or exploring every inch of the car (and begging for us to push the button to make it “beep”). He likes exploring this new world and sometimes just standing in the front yard watching the people and cars go by.

For once this spring, Patrick is strong and healthy and brave.

So, when Brian suggested that we take a little of our tax return money and buy a bike trailer so that we could take Patrick for rides, I was thrilled. So, last Saturday, we went to the bike shop. Brian had done lots of research online, but we wanted to put Patrick in one to make sure he wasn’t scared of them.

No – he wasn’t scared. He thought it was a lot of fun to be wheeled around the store.

An hour later, we were proud owners of a new bike trailer.. and helmets for the whole family. (I decided that I should probably have Patrick wear a helmet, and if he had to have them, we should, too.)

Brian did some tune-ups on our bikes. They’ve been sitting in our garage for nearly 3 years now. Then he put the trailer hitch on his bike and we settled Patrick in.

Patrick was excited about the bikes, and the trailer, but not the helmet. Which is why the pictures I took show him glaring at me.

But he loved the ride. I’d ride up alongside him and he’d smile and wave and tell me what he saw. He’d laugh when they hit small bumps, (but wasn’t so sure about the big bumps.)

Since then, he’s gotten to go for bike rides at least every other day. Sometimes Brian will take him while I cook dinner. Sometimes, we’ll all go as a family. We got a second trailer hitch for my bike a couple days ago, and I got my first turn pulling him yesterday.

It’s a lot of fun, though strange to do something so very normal and suburban. I’ll admit, Brian and I are both feeling a bit out of shape. Exercise has been a foreign concept for the past couple of years.

But this is the new world of Patrick healthy and walking. I even got to garden this week.

We like springtime.

I am exhausted. Patrick started running a low-grade fever 2 days ago. Because it hasn’t hit 100.4 degrees and has only lasted a couple days so far, there’s a good chance it’s a virus. Patrick’s seeming congested, and I am hoping that’s all it is.

Photo: Patrick watching Bob the Builder, a favorite sick day activity.

The problem is, he still doesn’t feel good regardless. And all I can offer him in the way of relief is lots of love and rest and maybe some extra time with his favorite toys, books, and shows. I can’t risk missing symptoms of a line infection by giving him anything to take the fever and the icky feelings away.

Last night, I set my alarm for 1:30 a.m. so I could sneak into his room and make sure he was getting the right amount of extra fluids, make sure his belly was draining, and check on his fever and other vital signs. Most of the time, I can sneak in and do this without disturbing him and go right back to bed. But last night, his g-tube was plugged and not draining. I fixed it, but while I was watching to be sure it was right, Patrick woke up. And he felt bad. And mom was in the room.

It was all downhill from there. With his tube not draining, I’d run more fluids than he’d lost and his diaper was leaking. So, I changed his pajamas and tried to rock him to sleep.

But, when Patrick doesn’t feel well and isn’t sure that I know the full picture, he doesn’t sleep. He plays and plays and squirms and kicks and talks and sings. He doesn’t complain. But he doesn’t sleep. And I’ve been his mommy long enough to know that this is how he copes when he’s too worried to sleep.

If your child is able to communicate with you what is wrong when something is wrong, and able in turn to understand when you say you know what’s wrong and are there to take care of it… count yourself lucky. In the middle of sleepless and sick nights, I long desperately for this kind of communication.

Is it any wonder that I was moved to tears this week when my insurance company decided that the diagnosis code Patrick’s speech therapist is using isn’t consistent with their reason for preapproving speech services? When they said they’d have to send the diagnosis for a review by a speech therapy specialist who will decide whether or not they’ll continue to pay for this help? Is it any wonder that I’m worrying about what will happen when Patrick “graduates” from early intervention and their therapists will no longer come to our home? We don’t have enough words yet. We don’t have enough understanding yet.

I just wish for the words to be able to offer comfort when Patrick worries.

Still, at least last night Patrick had the words to ask for his favorite song, and for a pillow, and for a book, and for his daddy. And we’ll add words little by little. And what words can’t say, hugs and kisses will try to express.

And I’ll keep using my words to fight for him to get the help he needs. I’ll fight for him to be able to find his own words.

But today, I’ll nap. Because I went to bed at 5 a.m. this morning.

Patrick’s fever is lower today. He is happier. He isn’t as pale. I asked him if he wanted to go “night night”. His reply was “pay pay, gah-guh”.. which if you don’t speak Patrick means. “Play with my wagon.” We played till he started licking everything in sight, then came in and he went to sleep.

I’m watchful today, but I’m not worried. Just wishing for more words.

You know you’re a mom when you start to find deep spiritual meaning in children’s books. For example, when reading Sandra Boynton’s But Not the Hippopotomus, I can spot myself in the role of the hippopotomus. I can see my newlywed, childless self trying to figure out how and where I fit in. And that me that came home crying from Patrick’s first music group? Well, then I was the armadillo.

And, in Your Personal Penguin by the same author, when I read “Wherever you go, I’ll go there too. Here and there and everywhere and always with you.” Well, yup, I can see me with Patrick’s backpack following him in all his toddler escapades.

With this kind of sentimentality, you may ask what on earth I was thinking when I picked up Dr. Seuss’s Oh the Places You’ll Go. Believe me, I wonder, too. But I came to this conclusion. It would be wise for most of us to pick up this book and read it at least every 5 years. It really is one of the best pep talks ever written.

Can I share a few passages that seemed just all too true?

“Wherever you fly, you’ll be best of the best
Wherever you go, you will top all the rest
Except when you don’t.
Because sometimes, you won’t.”

 

“You’ll come to a place where the streets are not marked.
Some windows are lighted. But mostly they’re darked.
A place you could sprain both you your elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?”

 

“I’m afraid that some times
you’ll play lonely games too.
Games you can’t win
’cause you’ll play against you.”

 

“On and on you will hike
And I know you’ll hike far
and face up to your problems
whatever they are.”

 

“And will you succeed?
Yes! You will indeed!
98 and 3/4 percent guaranteed!”

I started to elaborate on why these particular passage stood out to me, but decided in the end that one of the beautiful things about this book is that it captures the journey so well without the details.

Because the journey is different for all of us.

And really, it’s not so much which wonderful feats we achieve. And which ones we don’t.

When people hear our family’s story, they often tell us how wonderful we are, how brave, how strong. But the truth is that we really are just going the places that our life leads us. We “face up to our problems whatever they are.”

That’s what I tell them. And that’s what I tell the brand new moms who join our support group who are scared and uncertain and don’t know how they will do all that is asked of them. They’ll be able to do it simply because they’re a mom, and that’s what moms do.

You do what you have to do.

I highly recommend that you find this book and reread it. You’ll feel a whole lot better about wherever you are in your journey.

Thanks for sharing story time with me.