Patrick Hoopes

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.

I’ve been sharing Patrick’s story with strangers again. I can’t help it. It’s one of those stories that just wants to be shared. And besides, when I revisit those first months with him, when I can take those miracles out of my little box of memories and turn them over in my mind and run my fingers along them, it helps me to have more faith and more patience with the more hum drum challenges of day-to-day life caring for a medically fragile child. And the bigger battles, too.

It started with an e-mail stating that LDS Family Services was looking for volunteers to do adoption outreach presentations in my church congregation. How could I say no to the chance to share our adoption story with these supporters and friends? To brag publicly about how much we love Patrick’s first family? And to talk about the amazing free services offered to those who find themselves, a friend, or a family member pregnant and unprepared? (The gist of the message can be found at itsaboutlove.org.)

Our story what shared again today with another audience. I was given the opportunity to write a guest blog for a site called Kidz. (http://kidzorg.blogspot.com/) This site is devoted to providing hope, support, and encouragement to families of children with all kinds of diagnoses. Children who are just a little bit different, and just a little bit wonderful. Kidz.

Writing for that audience made me really stop and think. Unlike most, this group knows what it’s like to face frightening news from doctors. They know what it’s like to wish everything for your child, yet know there are things you can never give them.

Writing for them made me stop and think what I have learned and how I survived and how my life has changed for the better since Patrick entered it. It’s harder, but it’s better.

So, if you’d like a walk down memory lane, take a pop over to http://kidzorg.blogspot.com/2011/03/picking-patrick.html and reread an old and familiar story.

Patrick and I have eaten breakfast together for the past two days. The same meal. The same food. Buttered toast. And I’m very excited.

Why? It all has to do with essential fatty acids.

Now you’re asking what essential fatty acids are, and what any of this has to do with toast. Let me back up a little bit.

One of the elements of TPN is a substance called lipids. We call the lipids fondly Patrick’s cheeseburger. Basically, they’re fat. That tippy top part of the food pyramid. And we all need just a little bit of fats in our diet. They’re a source of calories, and they serve other functions in the body, too.

Unfortunately, when lipids are given intravenously, the liver is responsible for breaking them down. This is one of the primary causes of TPN-associated liver damage.

We’ve been fortunate that Patrick’s liver health has been well managed, but every once in a while, it still gets inflamed from the extra work it’s doing. When this happens, the doctors will sometimes give his liver a rest by taking the lipids out of his TPN.

However, like I said, our bodies need fats. So, you can only safely take away lipids for a little while you start to have deficiencies. And so, after a few months without lipids, they start to do a blood tests to measure the fatty acids in the body.

We did that test a couple months ago. The results were surprising. Across the board, the test shows deficiencies. However, not all of the levels were low. In fact, some were high, evidence that Patrick has probably been absorbing some of the fish oil supplements that we’ve been giving him. And the ratio that usually reveals a need to give lipids back, well it was normal. But, being a ratio, could you be deficient and low?

So – when we saw Patrick’s GI and dietician last week, I started asking questions about what the blood tests meant. And, as Dr. Jackson loves to teach, he pulled out a piece of paper and gave me a little science lesson. Warning: Science content.

He started by teaching me that there are two essential types of fat that our bodies cannot produce for themselves, Omega 3’s and Omega 6’s. The lesson then turned to chemistry. I learned that the terms Omega-3 and Omega-6 refer to the molecture structure of the fats. And that as the body breaks down those fats, it converts them into enzymes. So Patrick’s levels of the fats were low, but the enzymes were high.

In the end, the lesson convinced him that Patrick probably needed a little more lipids. So, we added them back into the TPN, but just twice a week.

I still had a lot of questions about how a fatty acid deficiency affected the body, besides it being a bit harder to gain weight. And I was still floored by the fact that Patrick showed evidence of absorbing anything he ate.

Thankfully, the very next day there was a webinar being put on by ThriveRX, an national infusion pharmacy, about that very subject. And I was available to tune in.

And I got a few answers. Learning the symptoms and consequences of fatty acid deficiencies was interesting and put my mind at ease. There are, in fact, consequences.. but Patrick wasn’t really showing symptoms.

I also learned a LOT about how to add Omega-3’s and Omega-6’s to diet.. and the importance of getting both. Patrick’s dietician has been telling me to try feeding him more fats, but I needed to know the right kinds of fats. The webinar gave me a list. Fish, but not just any fish. Oil, but preferably oils that start with “S” (sunflower, safflower, soy). And then a few things that allergies might not allow: mayonnaise (eggs/milk), salad dressing (milk), and margarine (yup, milk.)

But these last 3 are the way that most of us actually consume these essential fatty acids. So, when they opened things up for questions, I asked if there were options for a child with allergies.

And I learned that a very, very small number of tub margarines don’t contain any milk products.  I tried margarine with Patrick when we first discovered the milk allergy, but every brand I tried still resulted in the same hives in and around his mouth. Turns out they all got their flavor from whey, buttermilk, or other traces of milk products. I finally just gave up, which meant giving up on a lot of foods that are better softened with margarine.

But, armed with this new information, I headed back to the store and found that Smart Balance makes a margarine with flax. It’s all those magic “S” oils. No milk. It’s even labeled “a good source of Omega-3’s.”

And, for the first time since last summer, I’ve been able to add a buttery flavor to vegetables, breads, potatoes and more for Patrick. And, not only does he get to enjoy the taste, but there is a small chance that he’ll actually absorb a little bit of it, which would help him grow and help decrease his needs for lipids which would, in turn, help protect his liver.

For perhaps the first time since he was a newborn, I have hope that feeding Patrick will do him some kind of nutritional good.

And it’s a food that I can share with him. I make a piece of toast and we eat it together. Patrick thinks it’s remarkably fun to both take a bit at the same time. I’m sharing with him and don’t feel like I’m cheating or taking a risk.

I can’t wait to enter the realm of buttering our eggless/milkless pancakes to see if it will help him want to eat them. Or to cook hash browns. Or to try adding a little buttery flavor to my homemade SBS friendly baby foods.

I feel strangely empowered.. by buttered toast.

As I went through my usual afternoon scramble to change TPN tubing, give meds, clean the living room, keep Patrick’s stomach settled, and make dinner, an image came to my mind of spinning plates.

You’ve seen the act, right? An juggler manages to keep a dozen or so plates spinning either on the table or balanced on tall poles. He does it by watching them closely and going down the line spinning those that need extra attention.

My life right now is a lot like spinning plates. I think most moms’ are, especially those with toddlers.

There are the usual plates. There’s one for entertaining and teaching your child. This plate is spun by reading stories, singing songs, and playing silly games. There’s a safety plate. This one can be a bit wobbly sometimes. It requires you to protect garbage cans, sockets, stairs, etc. There’s the faith-building plate. It needs attention for scripture reading and prayer.

Some plates sit low enough that, if they slow, the show’s not as pretty, but the higher plates can keep spinning. For me, the housework plate’s been spinning a bit slowly. So has the laundry plate. As often as I can, I give them a twirl. So long as they don’t come to a complete stop, the rest of the show is fine.

Raising a child with special needs means makes mine a trickier and more impressive juggling act. That safety plate’s on an extra tall pole. And there are more plates, too. I’ve got plates for medication schedules and plates for appointments and really delicate china plates spinning that require extra care like central lines and infection control. These ones have to spin quite fast and if you leave them unattended come crashing down quite quickly. They take a lot more of my attention than you might expect and keep me running most of the time.

Thankfully, I’ve got assistants. My dear husband spends a lot of time tending to my more errant plates. Impressive, for a man who’s got a whole table spinning on his side. I’m ashamed to admit, sometimes, how often I leave the plates titled “Family” and “Friends” entirely to their own accord. But, you see, those assistants are so reliable, and there are other more unsteady plates with no one but me to watch them.

Sometimes, an onlooker decides to add to the show. They don’t always see the complexity of it. And I, ever the showman, tend to say “yes” too easily when someone says “Could we maybe add a little plate here?” And then, all too often, that little plate has a little cup balanced on the top, too, that someone failed to mention. And I get a bit huffy and want to say, “Hey, didn’t you notice all my other plates here?” But more often than not, I just spin the cup, too, for a while to keep the crowds happy. And then, slip it away and go on with my show. What’s a show without a little bit of “service” or “volunteerism” or “community involvement”, anyway?

To make room for some of the plates, I’ve put others away. My “personal talents and interests” plate is getting a bit dusty from lack of use. But someday it’s time will come again.

And you never know when that minute or two with a difficult extra plate will turn out to be just the perfect extra flair. After all, some of the best stunts are the most difficult. Sometimes “family fun” is the hardest plate for me to get spinning, but the dimension it adds to the show is well worth the extra effort.

So, heck, while I’m at it, does anyone have any knives you’d like me to juggle? And if you’ve got a hand, could you catch that plate?