Archive for the ‘Childhood’ Category


A Preface

If you are under 18, please talk with a trusted adult before proceeding. This series addresses some adult topics with adult language. Thank you.

January 3. It starts.

I’m getting dressed, and there’s a … lump. Maybe a…a ridge. A… something. It’s something.

Is that a lump? What is that? If I’ve never had a lump, how am I supposed to identify a lump? How do I not know how to do this? Crap. Can I find the same thing on the other side? That seems like a reasonable thing to check. Ummm… No. Nothing else feels like that. Crap. It’s nothing. It’s nothing. It’s so totally nothing. I bet I can’t even find it again if I try. Crap. Yes, I can. That’s a lump. No. Yes. Damnit. Yes. That’s definitely a lump. It’s a lump. Well…well, fuck.


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Apparently, you can find anything and everything on Pinterest.

Apparently, you can find anything and everything on Pinterest…including things you thought were your own unique ideas, handily made into memes.

For years, I’ve considered myself an atheist. Jew-“ish” so to speak. A cultural Jew with no real desire to practice the faith in which I was raised because, quite honestly, I felt Will’s autism was proof enough for me that there is no God. People would tell me that God doesn’t choose who gets autism or cancer or diabetes; He simply helps and guides us along the way as we handle these challenges. Yet in the next breath, they would tell me that God has a plan for Will; a “special plan for these special children.” People would tell me that, “God chooses special parents for special kids,” and that, “God chose you to be Will’s mom because He knew you could handle it.” None of that jived with God not choosing who gets what in life. And so, I saw all of that — 100%, absolutely, positively all of that — as completely false. I took them as the social niceties that people say when there really is nothing one can say. It’s an untenable situation. What else could a person politely say? The sentiment and empathy I appreciated, truly. I knew many people who shared these thoughts with me meant them from the depths of their hearts, and I was grateful. But from a practical standpoint, I just didn’t buy it.

I went along for quite a while that way, my atheistic Jew-“ish” self, living without God but with morals, and doing just fine. And then one night, I got into a conversation with my friend, Nathan, whose spiritual journey is one that fascinates me more each time we discuss it. And Nathan made some very good points about what a terrible atheist I was, seeing as I still believed, having experienced it myself, that there is more to this world than simply that which we can normally see and feel and hear. He suggested that perhaps I was not so much an atheist but someone who didn’t believe in the Judeo-Christian “version” of God.

It was such a simple concept. What if the energy of the universe, the force of life itself, what if THAT is God? Because even for someone like me who believes in evolution and the Big Bang Theory (Bazinga!), even from a scientific standpoint, I agree that there has to be more. If we all evolved from the initial Big Bang, what precipitated that event? From what did that first bit of space dust emerge? That is, if we know it is true that we can neither create nor destroy matter, then where did the first matter come from? What started everything that led up to the Big Bang? Nathan really had me thinking.

Even with those conversations, though, I still considered myself Jew-“ish.” I didn’t worship or go to temple. I didn’t pray. I didn’t see a point.

And then Julia started asking to go to church. I attributed this to the fact that my boyfriend, Rob, has three kids, and they love their church and go regularly. So Julia had heard a lot from them about how fun church is, and I’m pretty sure she imagined it to be some kind of indoor park where kids go to do fun stuff and grownups aren’t allowed. We hadn’t been to synagogue in Kansas City yet, and as much as I am open to my children adopting the faith and belief systems that work for them and bring peace to their souls, I wasn’t quite ready to take Julia to church when we hadn’t even gone to temple. It seemed … wrong.

Time passed, and suddenly, it was Spring, and we had been in Kansas City nearly a year. Rob’s parents invited us to join them at church for Easter services, which I had never attended before, and just like that, Julia and I went to church.

Julia later told me that Easter was, "The worst day of my whole entire life." Apparently, church was not the kid-topia she'd expected!

Julia later told me that Easter was, “The worst day of my whole entire life.” Apparently, church was not the kid-topia she’d expected!

I anticipated spending a couple of hours sitting politely, perhaps staying busy keeping Julia quietly occupied. I thought it would be interesting to see what Easter services entailed, but more from an anthropological standpoint than anything else. I have rarely been so pleased to be wrong.

From the very beginning, I felt a sense of warmth and welcome at the United Methodist Church of The Resurrection. Simply walking into the building as people flowed in, smiling and welcoming one another, was uplifting and peaceful. The orchestra and choir music felt oddly familiar and comforting, despite the fact that I had never heard most of the songs before. But there was more.

The pastor began to speak, and I was completely focused on his words. There had been shootings in the area that made national news the previous week when a man killed innocent people at a Jewish retirement home and then on the steps of the local Jewish Community Center. The pastor had met with the Center’s Rabbi, a longtime friend, to discuss how they could support the community through the tragedy. They were both particularly invested, as the shootings took place on the Rabbi’s turf, so to speak, yet the man and his grandson killed at the JCC were not Jewish. In fact, they were members of the United Methodist Church of the Resurrection.

It was no surprise, then, when the pastor explained that he had altered his planned Easter sermon, taking into account the fact that he had presided over the funerals of two members just two days prior. His sermon, however, was still seamless. He flowed from his discussion of the week’s events into the importance of unity, acceptance, community, and compassion. He talked about civil rights and the blights of bigotry, hate, and prejudice. He spoke of the need to meet such evil with love so that every act of violence or discrimination creates an unintentionally positive ripple effect of love, tolerance, and peace.

This, I felt, was what God is about, whatever form God may take. Even if God is only the collective concept of good, existing like Santa Claus as a motivating force that inspires people to be better, kinder, more loving and accepting, then so be it. Perhaps, I thought, the idea of God is enough.

Of course, the pastor was nowhere near done. He segued into what was likely the bulk of his planned sermon, making the eloquent connections of a seasoned public speaker, discussing Jesus and his works. In particular, he focused on the women in Jesus’s life and how they supported his ministry both logistically and financially. He spoke of Mary Magdalene and how she was an unmarried woman, living alone, which, at the time, would have meant she was both without any male relatives to take her in and without any man willing to, “take her to wife.” Based on other accounts of her life, the pastor posited that Mary likely suffered from a psychological, behavioral, or personality disorder, and that contributed to her unmarried state. The result was that Mary was wretched in society’s view. She was of the lowest status, an unmarried, unmarriageable, unstable woman, living alone. And yet, when Christ was resurrected, the pastor continued, Mary was the first person to whom he reportedly revealed himself.

This led to a discussion of Jesus and how he valued and surrounded himself with those whom society would often dismiss or undervalue. This, for me, was of particular interest. What would society have done with Will at the time? How does society view and value him now? In the pastor’s words, I heard loud and clear that Jesus would see the value — the inherent, individual good — in my son.

Of course, this was all well and good. It didn’t suddenly make me a Christian or a person of religion at all. It was inspiring and thought-provoking, but a single sermon was not going to shift my world view.

And then the pastor spoke about the very issue that had, for so long, been the crux of my psedudo-atheism: when bad things happen to good people and how that jives (or doesn’t) with God’s plan. I really could not get over how many of my personal challenges with religion were being addressed in this single sermon.

The pastor circled back to the week’s events, talking about how these horrendous, unthinkable things had happened in our community. People had been killed. People were mourning. People were searching for answers, and one of the questions was, inevitably, “Why?” Why would  God allow this to happen? How could this be part of God’s plan? I expected the pastor to say that it’s not for us to know, or that God works in mysterious ways, or that all would be revealed in the next life — essentially, nothing helpful, because these were the answers I had always gotten about Will’s autism. And again, I was wrong.

The pastor said, essentially, that this was not God. Did any of us think, truly, that God wanted a young man and his grandfather to be murdered? Did any of us think that God wanted someone’s heart to be so hardened and twisted and filled with hate that he would go out and commit such a crime? No, he said, this was not God. This was man. This was a result of man exercising free will, and, he said, it grieves God to see it.

And therein lies something I have also long believed: Man has free will (whether granted by God or a product of evolution). And we have free-willed ourselves and our planet into such a toxic state that we have rampant challenges such as no generation before. Cancer and autism and all manner of autoimmune disorders and on and on and on in numbers never before seen in human existence. And that’s not God. That’s man. That’s man going around without regard for the consequences, abusing his free will all over the place.

So, we had finally gotten to the heart of my conflict with religion. Free will versus God’s plan. And suddenly, I saw that the two could co-exist. The pastor spoke so confidently about the fact that God mourns, God grieves, at the horrible things we do to one another and the planet, and yet He does not revoke our free will. Instead, He continually gives us the tools we need and the opportunities to move in the right direction and make better choices.

God grieves. That’s what I heard. God grieves. He has this grand plan that we go about disrupting, and he continues to pave new paths to help us achieve His desired ends. This made sense to me, because I had long since dismissed the, “All things happen for a reason,” way of life. But with this twist, I thought, ok, everything happens for a reason, but sometimes the reason is because man has exercised free will. Just because things happen for reason doesn’t mean it’s God’s reason. Fair enough. And I realized, therefore, just because there is bad in the world, just because bad things happen that I cannot reconcile with a merciful God’s plan, that does not negate the existence of God in some form, whether it be a sentient being or a collective idea or the balance, energy, and force of the universe.

The entire sermon left me in deep contemplation. Not only had the sermon itself left me with much to consider, but the feeling I had in the church was transcendent. I felt closer to God, the energy of the universe, the center of it all, than I had felt in years and years. I felt connected. Changed.

CS lewisOver the next few days, I spoke to nearly everyone about having gone to church. I couldn’t get the experience out of my mind. I wasn’t suddenly converting to Christianity or anything, but I was more open to the concept of God than I had been in a very long time. I sat one evening with a dear friend whose Christian faith is central to her life, and I asked her, honestly, if she thought something special happened at church that day. “Do you think I had a special experience? Do you think there’s something different about how I responded to that sermon?” I asked. And what she said was so impactful. She replied with the slightest tears in her eyes, “Yes. I think God had you right where He wanted you. God had a message for you, and He made sure you heard it.” She drew my attention to the fact that I never go to any house of worship and hadn’t been to a church since I was a teenager. She said that church is certainly not always like that, and when it is, we should listen.

Less than a month later, Marty called and said Will had fallen down, something that was truly unprecedented. He had collapsed on the floor of a restaurant, seeming exhausted and unbalanced, and he had narrowed himself down to one food: gluten-free pretzels. The initial blood work came back, showing life-threateningly low potassium levels, among other issues, and the result was that Will needed to be hospitalized. The thing is, that blood work came back Thursday morning, May 22nd. I needed to be in Gainesville, but I was home in Kansas City. It was two days before Julia’s 7th birthday and her birthday party, and my mom, who had only visited for one long weekend in the past year and a half, was on a plane, en route from California.

And then I realized, a bad thing was happening, something I would truly hope is well outside of God’s plan. Will had exercised his free will in starving himself, and yet I had everything I needed in order to handle the emergency. My mom, who is so rarely with us, was literally an hour away and planning to be with us for several days. She could care for Julia and manage the birthday party and give Julia all the special love and attention she deserved while I went to tend to Will. Once my mom arrived, she told me she could stay longer than planned if need be, and off I went to Florida.

I flew out Thursday night, leaving KC on time, breezing through Charlotte, NC, landing easily in Orlando, and hitting no traffic or issues as I rented a car and drove up to Gainesville. Later, Rob told me that not one hour after I left Kansas City, a horrendous storm rolled in that delayed air traffic for hours. But I missed it.

From the airport, I touched base with my friend, Cathy, at the Center For Autism and Related Disabilities at UF. I knew we would need some help during and after this hospitalization. It turned out that Cathy was already in talks with Shands Children’s Hospital to try to make hospitalizations easier on children with autism and other challenges. There was no autism protocol in place, she explained, and one was sorely needed. She had a meeting set up for mid-June, and she could really use a parent’s perspective on what would help. So from the start, we were able to start paying back all this good karma, serving as a bit of a case study to help make an admission less traumatic on future patients.

Recovery is easier with Angry Birds.

Recovery is easier with Angry Birds.

After a few days in the hospital, it was clear that I was not going home on Tuesday as planned because Will was having surgery to place a g-tube. If I hadn’t started working for Lauren’s Hope, I would have been far more freaked out by this than I was (which was still plenty), because in the past year I had worked with a mom whose company makes real-food blends for tube-fed people. I knew it was manageable and safe. I wasn’t totally blindsided by the very concept. But I do work for Lauren’s Hope, and as a result, I immediately had someone to call for advice about feeding tubes.

My mom rearranged her schedule and stayed in Kansas City long enough to allow Julia to finish the school year, and then she flew Julia to Orlando before heading home to LA. As Julia and I had already planned to be in Gainesville just a couple of weeks later, I had already taken Nugget, our new dog, over to a friend’s house a couple of times to get acclimated and meet her dog, so she could watch Nugget during our planned trip. That friend took Nugget from my mom, so he was cared for. And as I had already planned to be working remotely from Florida while Marty was supposed to be on his annual Bonnaroo excursion, I had plenty of projects to tackle that didn’t require me to be in the office.

Everything came together, even in this massive crisis. My mom was there. Work was handled. The dog even had somewhere to go. On the Gainesville side, my friends came out in high style, watching Julia and Neville (our Gainesville pooch) for days, bringing meals to the hospital round the clock, and running errands we couldn’t leave the hospital to do. And through it all, in the quiet moments while Will slept and I watched him through the nights, in the scary moments of procedures and waiting, I felt very certain that we were supported, held, and not remotely alone. I was oddly sure that the message I had heard and received at Easter came when it did in preparation for this trial. It was a notion that was both uncomfortable and indescribably comforting. Believing required a leap of faith on my part, but when I allowed for it, a peace flowed through me that I cannot properly describe.

I refuse to sink.

I refuse to sink.

The way things came together went beyond the logistics of running our lives while Marty and I focused on Will, though. If Will’s low potassium had been caught earlier, he wouldn’t have been hospitalized, so he wouldn’t have gotten the g-tube and extensive therapy he’s now been granted. He would be stuck in a cycle of taking oral potassium while continuing to refuse food through months and months of waiting for and undergoing feeding aversion therapy, and even then, he would likely have ended up in the hospital for some other issue related to not eating. If it had been caught any later, literally within a few days, our 9-year-old son would likely have had a heart attack, which could well have killed him. Will got exactly the help he needed, exactly when it would help him the most.

There are coincidences, and then there are times when it seems that something else is so obviously at work that we would be fools to ignore it. In this crisis, my family has been blessed. Blessed with help, with support, with hope, with healing hands of skilled physicians, with opportunities and resources and strength and love.

I still don’t really know what to call this force that’s at work in my life. God or the universe or the Divine… truly whatever that big giant force is that moves things around in this world is meant to be called, it is present in my life and blessing me with abundance and gratitude, gentle guidance, and answers. And it occurs to me that this is nothing new. It’s just that now, I’m listening.




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Waiting for Dad to pull the car around. Will had not been outside in 11 days. Time. To. GO!

Time to go!

We are home. Well, we’re home at Marty’s house. Julia and Neville are spending one last night, each with one of my dearest friends, so Marty and I can have this one quiet night at his place, getting Will settled into his usual surroundings without the chaos of adding an excited little lunatic who would be barreling around the apartment, bouncing off the walls…or the dog, either.

It’s been a long road. The days blurred together in a haze of doctors, nurses, techs, therapists, surgeons, consultants, dietitians, social workers, hospital staff, and friends trailing in and out of Room 4539. When Marty called me on May 22 and told me Will needed to be admitted to the hospital, our pediatrician thought we would be there for a day or two. By the time we left Shands this evening, Will had been in the hospital for eleven days. In some ways, it felt like we were there forever; we fell into a bit of a routine and got to know the compassionate, talented staff. But for the most part, our time in the hospital flew by because we were so busy and worried. Will’s status changed by the hour, sometimes by the minute, and there were moments when I smiled and sang to Will through a procedure while wondering if he was going to die.

As good as it feels to actually have brought Will home, there were moments, I’ll admit, when I was afraid to do so. In fact, yesterday, I was reminded of The Shawshank Redemption, to draw a completely false parallel, when Red, who has been in prison all of his adult life, identifies himself as, “an institutional man.” “These walls are funny,” he says, “First you hate ’em, then you get used to ’em. Enough time passes, you get so you depend on them.” And while the hospital is certainly not prison by any means, we certainly hated being there initially, and we were not in control of how long we would be staying. As time went on, somewhere along the line, I started to fear leaving. What if I couldn’t learn all this tube-feeding stuff? What if we got home and Will refused the tube feeds? What if his “button” got infected or pulled out or if there was some other problem I didn’t even know could happen? At least in the hospital, there was help. There were people there around the clock, looking out for us. Here, we’re on our own.

All smiles on the short ride home!

All smiles on the short ride home!

I’m sure those feelings were exacerbated by the fact that I hardly left Will’s room, let alone the fourth floor. In fact, the entire 11 days he was there, I left the hospital for a grand total of about two hours. When we left this evening, I hadn’t been outside since walking downstairs for a few minutes with a friend on Tuesday.  It just occurred to me that that was six days ago. It’s not that I didn’t want to go take a walk or run to the store. And Marty certainly offered to take the night shift and let me go sleep at his place. But I just couldn’t leave. Partly, I was irrationally sure that something bad would happen while I was gone. But it was also simpler than that: every single person who works at the hospital is on a different schedule. The pediatricians, med students, surgeons, nurses, therapists, consultants, everyone. They all come … whenever they come. And if I were to leave for an hour and miss the pediatric team doing rounds, for example, that’s a big deal. I’m Will’s advocate. I’m the one who asks questions and explains his history and navigates the foreign terrain of medical-land. That’s my job. So I stayed.

Almost every night when Marty went home, I would go to sleep when Will did, or close to it, knowing we would be woken throughout the night and hoping to get a few hours of sleep in a row. And almost every day, I would hold Will still through blood draws or sing through tears during a procedure, or rub his feet and legs while he played with his iPods and high-fived the nurses.

Supply central. Of course, there's more stuff in the kitchen, and then there's the IV pole onto which the feeding pump is affixed and the formula bags are hung. It's new, but it'll get to be normal enough pretty soon.

Supply central. Of course, there’s more stuff in the kitchen, and then there’s the IV pole for the feeding pump and formula bags. It’s new, but it’ll get to be normal enough pretty soon.

Now that we’re home, there will be a new routine. We started it this evening by organizing all of Will’s feeding supplies and doing his first home feeding. We will get into a routine here, just as we did in the hospital. We will start taking turns working and tending to Will. Julia will go to camp. Neville will snore under the table. Life will get back to normal. A new normal.

Photo Jun 02, 10 50 20 PMAnd sooner than I think, Julia and I will go home to Kansas City, and Marty will live in this new normal with Will. And we will all miss each other. And I will cry more than I admit, knowing that my son is so far away, always feeling like part of me is missing, just as I know Marty feels about being away from Jules. But the thing is, we’ll do it anyway. Because no one is ever promised a problem-free life. We aren’t even promised a life. So when we get a second chance at it, when we come that close to losing it all, instead of focusing on the fear or the sorrow, we owe it to ourselves and our kids to live each day with pure gratitude for the opportunities to succeed, screw up, love, struggle, laugh, play, work, grow, learn, and simply BE. Because otherwise, what were those 11 days for?


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Will, age 3...artistic interpretation

Will, age 3…artistic interpretation

When Will was three, I walked into the dining room one day to find him perched with one foot on the edge of a windowsill, the other on the thin arm of a dining room chair over wood flooring. He was quite pleased with himself. I wasn’t particularly surprised. Will was climbing 10-foot slides at 18 months. He’s always had excellent balance, strength, and coordination. He does not get this from me. Julia, who can routinely be heard calling, “I’m ok!” after a loud *thump*…THAT comes from me.

This week, though, Will has most definitely not been his physically gregarious self. Leading up to his hospitalization was a period of very, very slow physical decline. No one really saw it. He went to school every day. And the YMCA. And therapy. And the doctor. No one really picked up on the subtle changes because they were so very gradual. But then, he got a bit hesitant and unsure of himself. He didn’t want to climb as much. He didn’t want to swim. And then he fell down. Twice. Will does not fall down.

After several days in the hospital getting IV fluids, syringe feedings, and the right medications, Will was moving more and feeling much better. But without proper nutrition getting in at home, he would deteriorate again, and so they had to operate, placing his G-Tube and giving him a PICC line, endoscopy, and biopsy. He was under anesthesia for three hours. He didn’t get out of bed for two days.

Surgery was this past Tuesday, and the team expected us to go home Friday. By Thursday, knowing he had just started walking again, we knew Friday was out, but we were hopeful for Saturday. By Friday, they were thinking more like Sunday. And then yesterday, Saturday, Will threw up after his second bolus feed of the day, and I looked at Marty and said, “We’re here until Monday.”

It’s not so unusual for a child to vomit in Will’s situation, of course, but sometimes, you just know something’s wrong. We started with what they call, “continuous feeds,” which means Will was literally getting nourishment around the clock through his G-Tube once they started using it a couple of days after surgery. Once he was up to his goal volume for the day, they started doing what are called, “bolus feeds.” This means that they give more food (formula) in a shorter period of time. So first, a bolus takes three hours, then two, then one, then 48 minutes, and so on. The goal here is for Will not to have to be attached to his pump 24/7 but rather have feedings given by tube four times a day in a manner that more closely mimics typical eating patterns and allows for him to feel hungry, which should help with feeding aversion therapy. This is immensely more convenient than having to be connected to his pump all day (although that’s possible through the use of a special backpack that he could wear to keep his pump with him).

But when Will threw up yesterday, I just had a gut feeling that we were not going home today. And when he couldn’t stand up in the shower afterward, and needed a shower chair, I was certain we were in for another 48 hours. Then we had to go to the Procedure Room, where nothing fun happens, and have his entire PICC line dressing changed  because of the risk of infection in case any vomit got under the dressing. I had to carry him down the hall and back.

Later, Will had another bolus feed, and we had to stop that one early, as he began protesting, and it appeared he was in discomfort again. He didn’t get out of bed all evening.

Marty headed home for the night around 10 or so, and by 11:30, Will was awake and in pain. He was clammy, and when I laid my hand on his chest, his heart was racing. The Chief Resident came to see him at midnight after getting a report from the nurse, and she put him on a Pulse Ox — a beeping machine that tracks oxygen saturation and heart rate. She explained that a few things can cause an elevated heart rate. The most likely culprits would be dehydration, infection, or pain. He didn’t have a fever, but he was on Motrin and Tylenol alternately, so infection was still a possibility. Pain, yes, he was in pain, but it was subsiding with the meds, and still his heart rate was up, bouncing between 110 and 146 while Will was doing nothing but lying in bed. For a child his age, it should be under 100. Lastly, dehydration was also not super likely, given how much he had taken in during the day and the fact that he had only vomited once… It was a bit of a mystery.

Ultimately, they pushed IV fluids and left Will on the monitor all night, checking vitals frequently, and keeping a close eye on him. Once our regular daytime team showed up this morning, everyone had a pow wow and they decided to run some extra labs and an EKG, and remove the PICC line, which could be a source of infection. Will’s EKG came back normal, but the blood work did not.

Will’s blah-di-blah and hoo-ba-doo levels are elevated. That’s pretty much what I heard the doctor say, although I could be spelling it wrong. A little. Anyway, these two things are indicative of an infection, and that right there meant, yup, we’re here until Monday so they can monitor Will for one more day and make sure he fights this off instead of getting sick.

Parenting is a balancing act.

Parenting is a balancing act, but at least we’re learning from the master balancer, Mr. Will.

The challenge here is balance. They want to keep Will longer to ensure he’s not going home sick. Yet the longer he stays here, the more likely it is that he could pick up an infection in the hospital. We want Will to go home and get back into a normal routine, not be lying in bed all day. Yet if we leave too soon, we will definitely end up back here.

It seems this entire experience has been about balance. Balancing respect for the doctors with gut parenting instinct. Balancing fear with facts. Balancing pushing Will too much with letting him rest. Balancing, conversely, the desire to coddle and baby Will with the very real need to have him up and moving. Balancing the need for sleep with … everything else. Balancing anger with hope. Balancing everything we need to do for Will with all of our other responsibilities and obligations.

We walked all the way down the hall this afternoon! Progress!

We walked all the way down the hall this afternoon! Progress!

It all makes me feel like, at the moment, Marty and I are the Cats in The Hat. Instead of the cup and the cake and the books and the rake, we’re balancing feeds and tests and meds and rest. Thankfully, Will has taught us a lot about balance over the last nine years, physical and otherwise, so we have his great example to follow.

Of course, if you’ll recall, the Cat in The Hat DOES fall. And he drops everything. The cup and the cake and the gown and the dish, the book and the ship and the rake and the fish. But he gets back up, and he cleans everything up, and by the time the book ends, everything is as it should be. As usual, this reminds me of a saying: Everything will be ok in the end. If it’s not ok, it’s not the end. I am sure I can come up with about a hundred examples of this saying not being true. But at the moment, I’m just going to go with it. It makes me feel better as opposed to feeling scared. And right now, that’s an important balance.everything will be ok

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Breathe in. Breathe out. Repeat. We've got this.

Breathe in. Breathe out. Repeat. We’ve got this.

So, it’s an interesting thing, being a special-needs parent. Sometimes, it means we get to witness the most inspiring moments, like seeing Will walk down the hospital hall today, determined to get back on his feet, despite the fact that he was clearly still in discomfort. Sometimes, it means we feel like those punching clowns people hit and hit and hit just to see them come back for more. This afternoon, for example, we found out that the formula Will needs to be on will cost $600-$700 a month, and insurance doesn’t cover it because, “You’d be feeding your child if he weren’t on formula.” Right. That makes perfect sense…if you don’t really stop and think about it. At all. Yeah. You can bet we’ll bounce back to that conversation.

In tough times like these, I try to remind myself of a David Allen quote (and I honestly have no idea who this dude is beyond the person who said this one thing one time that I really like*), “You can do anything, but not everything.” Damn right. This little marble of brilliance has gotten me through some really challenging moments. I have a tendency, as do so many people, to try to do everything and be everywhere for everyone, every day. And of course, this is an exercise in futility because it’s literally not possible in any way, shape, or form. Marty does it, too. Maybe it’s inherent to special-needs parents after a while. I don’t really know. Anyway, when Marty’s in full-speed mode, he’s fond of quoting Warren Zevon, who sang, “I’ll sleep when I’m dead.” What can I say? We’re different…and we’re alike.

Anyway, these are the rambling thought nuggets pinging around in my overloaded brain at the moment as I listen to a storm roll in while Will is taking his first bolus tube feed, watching Finding Nemo, and playing with two iPods simultaneously, including playing the Avett Brothers repeatedly. Talk about trying to do everything. He’s a pro.

Go, Will!!

Go, Will!!

He’s also a pro at school. I’m proud to say that Will’s teacher, who is such an incredible woman, came to visit this evening and brought Will some surprises, including cards from his buddies at school and….drumroll please….Will’s very first Littlewood Leader award! This is a, “Citizen of the Month” type of award that Will has never received in his five years at Littlewood. What a great surprise with fantastic timing! We were certainly due for some happy news after the tough day we had.

It started out ok. Will got to sleep through the night, as they were finally able to hold off on all the vitals checks. The nurse came in periodically to add formula to Will’s bag (it’s kind of an IV setup that runs through a feeding pump), and she pushed Motrin through the tube, all without waking Will. So that was great. First thing in the morning, we had a blood draw, which is much much much much much less horrible now that he has this PICC line so there are no needles involved. Did I mention it’s better? Seriously. Better.

Then it really started. Before Marty even arrived for the morning, and the man was here by 8:30, we were in a bit of a crisis. I had met with the doctor for our morning goal-setting and review. We had drawn labs, as I mentioned, and I had even found a moment to brush my teeth. But then the nurse rushed in with blood-drawing gear, telling me she needed to re-draw the morning’s labs. Will’s potassium came back at 6.3. That’s high. High is bad. If 3 is the low end of normal, and 5 is the high end of normal, that told my non-medical-person-brain that a 6.3 was as high-bad as a 2 or so is low-bad. Plus, she had that very determined nurse face on that lets you know in no uncertain terms, We have to deal with this right now. 

Even better <sarcasm, really big sarcasm> was that we now also needed an EKG to check Will’s heart. That’s not something you want to see someone do to your 9-year-old. Seriously. Their little hearts are supposed to be perfect. So we’ll just say that was pretty much horrible but at least not painful. Around this time, the pediatrician’s office called for an update, so I had to hang up on Marty to fill them in, and then the Occupational Therapist (OT) came to get Will up and walking around the halls.

Then my friend Sharon showed up with coffee. That’s right. I handled that without coffee. No, I don’t know how. Marty had arrived by then, and we were waiting on the lab and EKG results while we ate Panera. It was such an oddly normal thing to do, eating bagels and eggs while waiting on a scary medical test. But that’s what we did. And then the Resident came in and told us Will’s potassium was totally normal. 3something. Completely not high and fine. Five minutes after the EKG I will probably get billed $1k for, but whatever. I’m trying really, really hard not to think about what 9 days in the hospital costs.

Chillin' with a big Will smile!

Chillin’ with a big Will smile, Blankie, and our tubie bear, Brooks, off to the right

The Resident explained that potassium is very temperamental, and if blood isn’t tested quickly in the lab, it can do some sort of hoobadoo and get all funkified and then the potassium looks higher than it actually is and then you have a little heart attack thinking your kid has high potassium and ohmygosh now we’re going to be here another week and why do we need an EKG right this second is he going to die? He didn’t say all that last part. And I’m pretty sure he didn’t say, “hoobadoo,” but I honestly stopped processing information after he said Will was fine. Fuck you, potassium.

Also on the good news front, the throat biopsy taken during the upper endoscopy portion of Will’s surgery on Tuesday came back negative, which in doctor language means good, which sums up everything I need to know about medicine: it’s just some kind of Bizzaro World. But I digress. We also found out Will doesn’t have Cushing’s Syndrome, which I swear they scared the living daylights out of us with yesterday because some hormone levels were wonky and they really, really could have just run the tests without telling us Will might have a massively scary disease that probably wouldn’t kill him, but in my head already had. (And of course, yes, in reality I want to know everything that’s going on, but that was really stressful.) Also, when Marty and I used to watch, “House,” it was ALWAYS Cushing’s when there was no other answer. And Cushing’s looked BAD.

So in the midst of all this craziness, we had an OT evaluation and got a PT (physical therapy) referral due to Will’s depleted state. I’m sure her report sounded way more official than that, but basically, he’s lost a lot of muscle and needs strengthening. He’s walking like a hunched old man or a woman who just had a c-section, yet still trying to run, while walking on his heels and favoring his left side where the button (tube site) is, and he has lost weight. Today, after two days of continuous tube feeding, my 9-year-old weighed in at 22kg. For you normal people, that’s 48.5 pounds. Yes, I had to look it up after they weighed him to figure out the pounds. He’s below the 3rd percentile for height and weight. For comparison’s sake, the average boy Will’s age weighs over 61 pounds. Losing five pounds makes a huge difference when it’s 10% of your body weight.

What else …  PT came by and made Will walk around some more; the pediatrics team came to do rounds and present to the Attending, who discussed medication changes and dosing and all that. Our wonderful, awesome, spectacular Tube Feeding Fairy came by too. Twice. And you know, I’m sure she has a boring title, but it’s late and I don’t feel like looking it up. She’s the nurse who teaches people how to manage g-tubes and tracheotomies and things like that at home. And she’s rad. She was followed up much later in the day by the DME people (that’s durable medical equipment for those of you lucky enough not to be familiar) who brought us our very own feeding pump and a mini IV stand to take home. Just what I always wanted. On the plus side, we have all our gear to go home with, so that’s a good start.

Somewhere in the middle of all of this Cathy Zenko from the Center for Autism and Related Disabilities (CARD) came back around for a long visit. She stayed long enough to get to meet everyone who has asked me how to improve the floor for kids on the spectrum, and she went off to do her own super fabulousness with them. She was already looking into this issue when Will was admitted, so now they have a bit of a case study to work from. We sat and I rambled on for ages about what does and doesn’t work from my layman’s perspective, and so, hopefully, in some small way, we are paying forward some of the kindness and grace that is coming our way. Our experiences may ultimately lead to improvements here at Shands Children’s Hospital that will help make this type of admission easier for kids with autism. It seems there is always a chance to pay it forward if you look for it.

Every. Single. Day.

Every. Single. Day.

It also seems there’s always something to be grateful for. Today, I’m grateful that Will is making gains. He showered today and walked the hall three times. He laughed. He smiled. He got to see Julia briefly when she arrived into town. He achieved his feeding goals for the day. He pooped some more. Hey, it’s a big deal. They don’t let you go home if you’re not pooping. Yay for poop.

I’m also so grateful for all of the loving support our friends and family are providing. I am comforted in the knowledge that people are lifting our family up in prayer all over the world. I’ll be honest. I go back and forth on religion and all that goes with it. But recently, I felt like G-d reappeared in my life. Or maybe I just started paying attention. Whatever the case, I am certain that we are not alone in this at any moment. My little beat up family of punching clowns won’t stay down for long. We’ll pop back up quickly. We’ve got this.


*Ok, also, it turns out David Allen is a dude who makes a living telling other people how to tell other people what to do in his branded $600 a day seminars while he’s in Ojai with his fourth wife. Not that I’m judging…But isn’t that trying to do anything AND everything? Now I’m confused. I need a new quote.



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how strong you areSometimes, I feel like a frog that’s lost a leg. A frog can survive with three legs even if it’s used to four; it just needs to learn how to hop and move and live within its new parameters, its new normal. At every major challenge in life, it seems to go this way. I get crushed a bit. I lose something precious or gain something unexpected or unwanted or am faced with a big unknown. I have my moments of breakdown. And then I put on my big-girl panties and get on with it. Because really, what other choice is there?

Will is very much the same. He has been knocked down by things. He’s been injured and sick and beaten down by his own little body time and again. Infections, injuries, self-inflicted injuries, the stress of maintaining his autism- and OCD-fueled world… it’s all HARD. It’s WORK being Will. But Will is a fighter. He pulls himself up by his bootstraps and moves on. Every time. Every day. He’s the bravest person I know. He’s my hero.

So, we’ve been in the hospital a week now, little (partial) family of three-legged frogs that we are, and we have adjusted to our new (very ab-) normal of hospital life. We’re hoping this never feels totally normal and we head home soon. On Tuesday, surgery day, they predicted we would go home Friday, but now, Thursday, they’re saying Saturday, and I’ve learned that, “probably Saturday,” more likely means Sunday or Monday. Whenever it is, it is. We’re here as long as Will needs to be here. It’s as simple as that.

This is what a G-Tube looks like on the inside. The mushroom-shaped portion is inside Will's stomach, and the blue tube connects to the little pool-inner-tube-looking valve thing on the outside. The blue square closest to my fingers is a separate piece, the end of the tubing through which his food flows.

This is what a G-Tube looks like on the inside. The mushroom-shaped portion is inside Will’s stomach, and the blue tube connects to the little pool-inner-tube-looking valve thing on the outside. The blue square closest to my fingers is a separate piece, the end of the tubing through which his food flows.

Once we get home, though, we will most definitely have to learn to hop again, because there is nothing normal about any of this stuff. Tube feeding is much more complicated than I thought. I figured we open a port, plug in the tube, syringe the food, close the port. That’s not hard, right? Wrong. Way wrong. Tube feeding requires multiple steps, constant cleaning of both the button (the port site on his abdomen) and all the stuff that connects to it. There’s a lot of “flushing” of things and clamping and washing and measuring and charging and priming and … and … and…

Plus, we haven’t even gotten to the logistics of HOW we’re going to manage this whole thing. “Bolus or continuous?” they all want to know. Marty and I are pretty much saying, “Bolus or continuous WHAT?” and “Aren’t you guys supposed to tell us?” It feels a bit like when you get home with your first baby, have your first (really horrible) night, and you look at each other and say, “Now what?” There’s no real instruction manual, yet you can’t just wing it, either. So this is a time of asking for help and demonstrations and then more help, more demonstrations, and over and over until we get all of this information through our very sleep-deprived, overloaded brains.

It’s also a time of staunch advocacy, because although the wonderful folks at Shands Children’s Hospital are pediatric experts, they’re generally not autism experts. And surprising as it seems, a good percentage of the medical personnel don’t seem to have much experience with kids on the spectrum. Doctors? Yes. But some of the nurses and assistants really have no idea how to accommodate Will. This has led to some really interesting conversations with folks from the Child Life team, the nurse managers, the social worker, and some other folks. I think we’ve been able to pay it forward a little by walking these receptive professionals through what does and doesn’t work about their current setup when it comes to a kid with autism, specifically one with real sensory challenges. I’m very hopeful that some of what we’ve discussed will help make this journey a little easier for the next family like ours.

Beyond all the advocacy, case management, phone calls, coordination, service requests, and meetings with doctors, nurses, social support people, tube feeding specialists, nutritionists, med students, and on and on, we’ve also, and primarily, been focused on Will. He has been on a continuous feed of this special formula since yesterday afternoon. It looks like milky water and can provide all the nutrients he needs in a given day. It’s meant to replace or supplement oral feedings. So yesterday and most of today, they had him on that and an IV, with nothing by mouth. The goal was to get his system acclimated to receiving nutrients by tube and to ensure that his tube site didn’t get overly stressed in the first 48 hours of healing.

We had a small procedure this afternoon. Will had to have his PICC line re-bandaged, and while that doesn’t sound like a big thing, it really, really is. Our poor little guy was held down by four adults, Marty and me included, while a nurse removed all his old bandaging and replaced it. This stuff is meant to last several days, so it’s all adhesive-d onto his skin, and that was … unpleasant. But he did walk down the hall for the first time, and that was scary yet fantastic. He’s weak in the knees and unsteady. For those of you who know Will, you know it’s like seeing a bull in a tutu.

By mid-afternoon, Will was really hungry and was demanding pretzels. He got out of bed (insert image of me chasing him around the bed with an IV stand so he doesn’t pull out all his gear) and wobbled over to a chair where he sat down. I thought this was pretty awesome until he took my hand and gestured toward a bag of his pretzels, which I was absolutely not allowed to give him. So we talked about it, and then he proceeded to get up and reach for the pretzels. Another talk. Then he took my iPad, opened the photos app, found a picture of himself eating pretzels, and put my finger on the pretzels. Like, how many more ways do I have to tell you, Mom? I want pretzels. Now.

Pretzels, apple chips, water, and Mommy's iPad. It does not get better than this in the hospital.

Pretzels, apple chips, water, and Mommy’s iPad. It does not get better than this in the hospital. He’s generally shirtless at the moment so nothing irritates his “button” while it’s still sore.

Then, at the same time, Will was in pain, and he curled up in my lap, something he hasn’t done in ages, burying his head in my chest. He was upset and tired and sore. I had the nurse get Will some Motrin and page the doctor. We talked about increasing the tube feed or adding solid food, discussing the options. He went to discuss it all with the Attending, who brought Peds Surgery into the conversation. Ultimately, our favorite neighborhood med student (seriously, guy is awesome) came by with the good news: Let Him Eat (but not cake). 

Will immediately ate a bowl of pretzels mixed with apple chips and drank a big cup of water. He smiled. He laughed. He was HAPPY. And it was AWESOME. Not long after that, Will got up and went to the bathroom. I won’t get all detailed here, but those of you who have potty trained a child and experienced that first poop on the potty will have some idea of the happy dance Marty and I did. That poop gets us one step closer to going home.

With Will eating and drinking, he was allowed to get off of his IV. So now he’s only hooked up to the g-tube feeding pump, as they will keep pushing the formula that way all night. Hopefully, no one will bother him all night and they’ll just let him rest. I’ve been asking absolutely everyone to put it in their notes that no one should wake Will unless absolutely necessary since yesterday morning. They have to check on him. It’s imperative. And there comes a point at which you simply need to let a patient REST. With so many caregivers involved, I think it’s a very hard thing to balance, because they each have to come in to do their separate parts, but I just want 6 uninterrupted hours for him so he can actually feel rested and get a break.

We learned a lot more about tube feedings today, and in another world, Julia had her school’s annual field day. She’ll be here with us tomorrow. Friends came and went, dropping off food and giving great hugs. We hardly stopped for a second. But that’s ok. We need to keep moving. Onward and upward. Forward…hop.

Goodnight from Will and Brooks!

Goodnight from Will and Brooks!


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Today was Surgery Day. Will and I woke up early, and Marty arrived shortly thereafter with the blessed gift of coffee. From there, the day was a real blur. Pre-op check-ins with lots of doctors and nurses and residents and med students. Phone calls and emails and texts and messages. Questions and answers and lots and lots of waiting.

Photo May 27, 8 49 51 AM

Working two iPods right up to the last second

Around 8 a.m., Will headed to Surgery. Marty and I walked beside his bed as he was steered through th
e halls, talking to him and reassuring him. We had a chance to meet our Operating Room (OR) nurses, the surgeon, the anesthesiologist, and some of the other OR staff. If I met any of them on the street tonight, I wouldn’t recognize them. I feel like I hardly took in or retained anything today. We are on overload.

But we did meet them, and we answered their questions and they answered ours. Will was given a little medication to help him relax, and they took him back to do the full anesthesia. I kissed him and told him I love him as he was rolled away, around a corner, and out of our sight.

Marty and I headed upstairs to wait. What seemed like five minutes later, the GI Attending came in and said his part of things (the upper endoscopy to check for digestive system problems) went well. They took a little biopsy, which is apparently standard, and that’s it. He saw nothing of concern. This tells us that Will hasn’t been suffering from chronic reflux or something like that.

After about an hour, the surgeon called, letting us know that Will’s G-Tube had been placed successfully and giving me some other instructions I quickly forgot in my exhaustion and joy. I relayed everything to Marty, and we waited for our third update. This one would be from another OR person, telling us everything was done, because we had one more procedure to do: a PICC Line. This is basically an access port that allows for blood draws without any more needle sticks. As they will be closely monitoring Will over the next few days, having this will dramatically reduce his stress and pain. Blood draws have been… let’s go with, “bad.” I’m pretty sure we don’t have a word in English for what they’ve been. So, yeah, this is a big deal.

We waited. And waited. And kept on waiting. Other doctors came and went. A friend brought lunch. We checked in with our families and friends and my office. We were getting pretty nervous. Apparently the PICC line team had been held up in another surgery, so Will had to wait a bit. Finally, they were done, though, and we got the call that Will was in recovery about 3 hours after I kissed him goodbye.

Marty and I rushed down to Surgery and were taken to wash up before touching Will. We hurried over to him, and I draped his blanket (“Blankie”) around his shoulders and head the way he likes. Will has never been a stuffed animal kid. That’s Julia’s turf. Blankie is probably the only soft thing Will has ever been attached to, and he sleeps with “him” every night. He grasped Blankie, even with his eyes still closed, and moaned. He was in pain, and it was horrible. Will had spots of dried blood on his gown, stomach acid draining into a tube, and a tangle of wires all around him. He was hooked up to various monitors and annoying beeping things that scared me every time their patterns changed.

Will looked to me like he was coming out of his own skin. He had that horrible roll-over-to-get-comfortable-but-that-makes-it-worse kind of skin-crawling irritation. He was disoriented, breathing oddly, and letting out little cries. The nurses came to check his breathing. Marty and I, who had each had at least one hand on Will since walking in, had to step back. We held hands and watched these incredible people work on our son. He was fine, they told us, just coming out of the anesthesia.

We played Will’s favorite song, I and Love and You, by the Avett  Brothers. We sang softly to him. We hugged him gently. After a while, we sat quietly and sent a few texts to let the family know Will was ok. We were sent upstairs, where Will was calmer back in “his” room. From there, it was another flurry of activity. The G-Tube nurse, nutritionist, surgery fellow, pediatric Attending, and various nurses and caregivers walked in and out in a steady stream.



One lady, Anna, who has a bit of a social worker role — I’m honestly not sure of everything she does — brought Will a gift. She had a dark brown Build-A-Bear brand bear with his very own “button,” (The feeding tube access point is called a button.) just like Will has now. She brought us practice tubes and syringes so we could practice on the bear and show Will so he could better understand what we were doing. Will was listening to his favorite song, which has a refrain that goes, “Brooklyn, Brooklyn, take me in.” So we named the bear Brooks, and I sat it on the bed near Will’s head.

Anna stayed to chat a bit, and I told her about the work that my co-workers at Lauren’s Hope and I have been doing for Kids With Courage, a Type 1 Diabetes charity in Kansas City. They provide crates filled with diabetes-related resources to children hospitalized at Children’s Mercy hospital, being diagnosed with Type 1 Diabetes, which, for those of you who are unfamiliar, is a life-long autoimmune disease that causes insulin dependence. Lauren’s Hope designed and provides silicone medical ID bands for these crates so that kids can go home with a medical ID that will last until they have a chance to get one they really like and want. The thing is, those crates also come with the very same bear. Theirs are lighter and don’t have a “button,” but otherwise, they’re the same bear.

It was an odd feeling, being on the receiving end of a bear like that, particularly because I’ve heard from so many Kids With Courage families that the bears are the very first little bit of comfort they grasp onto in the hospital. It was an even odder feeling, an hour later, to turn around and realize that Will was hugging Brooks. In his life, I don’t think I have ever seen him snuggle with a stuffed animal. Ever.

Will is resting well and showing all good signs. We are optimistic that we will go home in a few days.

Once again, thank you for your support and good wishes.

Will and Brooks

Will and Brooks

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