Choice Quotes From Jack

Some of my favorite quotes from Jack’s twitter account.

(Holding up Yogurt Drops and Wheat Things) “I feel up for a little fusion.”

Those are old school cool! They’ve been around since I was like 1 or 2.

Why is it so peaceful here? I want to be a hero but there’s no chance here!

In the sense that I have all the parts I need, I’m complete. But in the sense that I’m still growing to be a grown up, I’m not complete.

The bad thing about getting older is that things get harder.

Sometimes I eat more sophisticated chicken.

I feel like chicken filled with whipped cream instead of muscles.

You know why I’m like this – it’s because of the droids! (Just wrapped up a week of steROIDS.)

Being all amazing and things is not hard at all for me.

Maybe in the future, maybe in 20 years, we can learn to make magic happen.

I have three parts: good parts, bad parts, and dragon parts.

You can’t touch time. But a clock can!

Milk glues bones together in a tasty way.

Twist Me Up And Wring Me Out

It’s only Tuesday? I thought as I stared at the pill organizer. How is that possible?

The anxiety in my chest grew. But that’s what day the organizer told me it was. The next dose of medication was right there. My phone agreed that it was Tuesday, as well. I shook my head and sighed.

I can’t wait until Friday.

Yesterday had involved an insulting call from the social worker at the clinic: “Um….hiiiiii. How are you today? How’s Jack? Um, I’m calling because Gina (the child life specialist) and I thought we should sit down and talk with you on Monday about…umm…Jack’s…school isssssuuuuues.”

My reply was something like, “Right, well, I know Gina thinks it’s school avoidance but I really don’t think that’s the case. Jack is very upset with himself when he can’t make it to school. And this isn’t new – it’s been going on since treatment started – it’s just that we thought it was normal due to the intense treatment. He was missing school then anyway. But treatment is less intense now and he still has these problems and he’s supposed to be able to go to school. In any case, I won’t be there on Monday – his dad is bringing him into the clinic. You can talk to him if you’d like.”

“Oh, well, okaaaay. Well, it’s you we’d like to talk to. So, um…alright. We won’t do that then.”

And then she (absolutely the least helpful professional I’ve ever met) droned on and on. She said some stuff about how special and smart and sensitive Jack is and at some point I just tuned her out. Sure, she WANTS to help…but she is completely inept. I could hear her grasping for the proper words to use when talking about Jack’s ‘issues.’ It was painfully obvious that she was stepping lightly. She was in parenting territory, something that she’s proven before that she knows nothing about, and I hadn’t even asked for her help.

Lady, turn back now. You don’t belong here.

A couple of hours later, I chatted with our nurse case manager about Jack’s lab results. They were good enough that he could the next day’s dental appointment, but the acidosis hadn’t improved at all over the weekend, so they instructed us to increase the sodium bicarbonate from two pills a day to four. And let me know that chemo can’t be taken at the same time as bicarb or anything else…which I hadn’t realized before.

Oops. I’d been screwing up the pill administration for…oh, almost two years now. Great.

Later that evening I took my 13-year-old cat to the vet and walked out of there $120 poorer and with no definite answers. ‘Cause that’s how I like to party.

So today, as I stared at the pill organizer and the bottle of antibiotics sitting next to it, I shook my head and sighed. Really, how could it only be Tuesday?

I gave Jack four horse-sized antibiotic pills. He actually chewed them all up without incident.

I was more than surprised.

I asked Jack to pick out his own DVD to watch at the dentist office (of course he chose Dr. Who) and off we went. It would be okay…I hoped.

The appointment went well, all things considered. He certainly yowled less than he did at his last appointment. His teeth got cleaned and x-rays were taken and that’s what matters, right? Not the stand-offish dental hygienist who clearly thought that the fact that he wouldn’t sit still was a discipline issue. Not the tears all over my kid’s face from being essentially trapped while he was poked and prodded in a sensitive place.

[Take a 7-year-old who isn't a great brusher, add a blood disease and suppressed immune system that makes it dangerous to floss, and what do you get? An uncooperative dental patient.]

Halfway through the appointment, Jack complained of chest pain while laying in the tilted-down chair and it only got worse. We went to the store to grab some tums (I’m not organized enough to carry them with me wherever I go yet) and sit for a bit while I had a warm beverage to calm my rankled nerves. I had to carry Jack through the store and he slumped in his chair when we sat down. After half an hour, the tums still hadn’t helped.

So we followed up that dental appointment with a trip to the ER, where Jack got an EKG and a chest x-ray per his oncologist’s orders. They gave him Maalox and, after a while, his pain had gone from a 5 to a 1. They sent us home.

This morning in between staring at the pill organizer with consternation, giving Jack five spoonfuls of pills in nutella, and attempting to get us both out the door and emotionally prepared for the dentist, I’d forgotten to administer Zantac. I’d given him four antibiotic pills, two sodium bicarbonate pills, and one Diamox pill…but forgot the antacid, which is a liquid.

Ugh.

I bet tomorrow I’ll stare at that pill organizer and shake my head all over again.

***

Suggestions for Psychological Struggles with Pills

About a year ago, at age 6, Jack suddenly developed an aversion to taking pills. He would either gag when he tried to swallow or he would be frozen with anxiety and unable to swallow at all. I was in a horrible state of panic, and it didn’t help that when I called the oncology clinic for help, I was told by our nurse case manager that he absolutely HAD to take his pills because every missed dose increased his risk of relapse.

Yeah, way to help.

The social worker was about as helpful – she recommended stronger discipline.

Um, lady! WTF! My kid is dealing with some massive fear and anxiety here and you are suggesting I discipine him for that??

Up until that point, Jack had taken his pills in applesauce or yogurt. He kept developing aversions to the foods he was taking the pills with, though. We tried peanut butter, as well, and that worked for a bit before it didn’t anymore. I tried crushing the pills and dissolving the pills in liquid – no dice.

We met with the clinic’s child life specialist who had a talk with Jack about why taking medications isn’t very much fun. Jack wasn’t very talkative, though. It stressed him out even more to discuss it. She was very empathetic but had no more success than anyone else. She quickly realized he couldn’t even practice taking pills because it was the THOUGHT that was getting to him, not the actual pills themselves.

Even though she wasn’t successful in helping, at least I felt like she understood our situation better than the other professionals we were working with. I felt a bit better because I knew I’d sought out help, even if it wasn’t ultimately all that helpful.

It got to the point where Jack was going to need an NG tube. We’d tried for hours to get his pills into him one night with no success. We were ALL in tears. We resigned ourselves to going in for the NG tube placement the next day and headed to bed. Thankfully, though, I tried one last bribe and it worked.

What we learned was that a combination of things would ensure the success of pill taking:

  • He had to take his pills in nutella – but with just enough to cover the pills up. No big globs!
  • We had to say that it was time for nutella, and ONLY nutella. “There’s nothing in this spoonful but nutella!” He considered it to be a fun joke.
  • Jack chose where in the house he wanted to be when this occurred – it couldn’t be in the place where he ate dinner or watched shows. He tried sitting in a chair and standing up and decided what worked best.
  • Bribery – I told him he could have any toy he wanted but he had to keep trying his very best to take the pills every day.

Also, Jack really had to be the one to make the decision to do this. Kids going through treatment for cancer (and other treatments for chronic illnesses) lack so much control about what is happening to them. So I had to hold the spoon but not push it into his mouth – he had to tell me he was ready and put his mouth around the spoon while I stood still. This was a way he could take back some of the control and feel less pressure.

Now that we’ve had more time under our belts with this, I’ve come up with some other ideas that might be useful if you’re dealing with this kind of (psychological) struggle.

  • Offer a distraction – it might be easier to take pills if there’s something else to focus on (the school nurse gave Jack a spiral bound notebook to draw in when it was time for him to take his afternoon dose), such as a favorite TV show to watch or book to read.
  • Have another parent or professional administer the pills – and stay out of the room while this happens. Your child may sense your stress and worry, so remove yourself from the equation.
  • Offer a comfort item during the process.
  • Remove other sources of stress and avoid trying to give pills at times of high fatigue. If your kid hates taking a bath, try not to line up a bath right before or after medication time and maybe take fewer baths. If homework is creating more stress and exhaustion, reduce the workload. Jack always had a more difficult time at the end of the day because he was more worn out.
  • Disguise the pills. It didn’t work for us, but it might for you. I know one mom who crushed the pills and put them into melted chocolate, which then became candy. You could also try a smoothie or milkshake – just make sure the ingredients won’t impact the medicine’s potency AND you have to ensure the whole serving is finished.
  • Again, bribery and/or rewards! This doesn’t have to be a toy – it can be an activity, money, or a piece of candy that is granted after the pill is taken. Instead of doing something because I’ve told him he has to, Jack feels like he is choosing to do it in order to get a reward. For instance, we have a list of chores that Jack can choose to do to earn tokens – those tokens can then be collected and traded in for things like movie rentals or gift cards for shopping on amazon (which are things he is particularly interested in).
  • Seek psychological help. Sometimes a psychologist can figure out something that will work based on your child’s emotional state and needs. Perhaps play therapy?

It took us a lot of tears and stress and phone calls and begging to get Jack to take pills regularly, but once we figured out what worked for him and stuck to it, things got a lot better. Chances are even if you can’t find a solution right now, your kid will outgrow some part of the problem and you can try again at a later date.

Hang in there. You can only do your best and no more!

My First Best Friend

“Crystal, there’s a new girl with your name! You have to meet her!”

I was about 7 years old. Her name was spelled differently – with a K and an I, instead of a C and a Y – and she was so much my opposite. Kristal and I immediately became best friends. Like, within seconds. It seemed like the appropriate thing to do. We had the same name, after all.

She lived in a duplex down the street from me – which was as far away from my house that my mom would let me wander (for fear of kidnappers in windowless blue vans). I often padded over to Kristal’s house, barefoot and bedraggled. My feet were tough as nails and black from running around outside all the time.

“Where are your shoes? Does your mom know you’re running around outside like that?” her mom asked me on more than one occasion.

“My mom doesn’t care,” I’m sure I said.

Kristal’s parents dubbed us Pete & Repeat. I was Kristal’s shadow. So much so that she used to tell me to stop crawling up her butt. Sometimes she got irritated with me and we fought. We would take weekends off from being best friends and then make up on Monday, usually. Most of the time, though, I clung to her for dear life. She was my one real friend. To me, she was always so brave and beautiful and strong – all things I wished I was. I was a tiny slip of a thing, always getting stepped on or ignored. I wanted to be her instead.

I loved her family and spent as many days at her house as I could. When I was politely told that my mom probably wanted me home, I didn’t take the hint. “No, I could stay as long as I want!” I would exclaim. No, you need to go home now.

I didn’t want to go home. At home I had to take care of my brother and sister. I had to fight the never-ending battle with my mom’s live-in boyfriend. Home wasn’t home at all and it was the last place I wanted to be.

Kristal didn’t care to spend time at my house, either. My mom’s boyfriend creeped her out. She got frustrated with my mom’s lack of attention to my siblings and me, as well. We had long ago accepted that our mother would space out and didn’t hear us when we called her name over and over. Kristal couldn’t accept it, so she stayed away.

I was happy to spend any time I could at her house anyway.

KC

Kristal & Crystal at the state fair (uh, in the 80s obviously)

Kristal spent summers at her grandparents’ house a few hours south, while I moped around and slept the boredom away. The first year that I went with her, I had to leave less than a week in. I said I was homesick but really, I’d had a nightmare about my sister being hurt. I couldn’t be away – I needed to protect her. I knew no one else would, that it was up to me.

A year later, I went again and I stayed the whole time! And it became the thing I did in the summer. And then holidays were added on. I no longer spent Christmas with my family, if I could help it. I even did chores at Kristal’s house – on Sunday mornings we would polish the furniture. I helped her fold clothes, too. After dinner, I dried the dishes while she washed. I wouldn’t know how to do any of those things if it wasn’t for Kristal’s family.

When Kristal moved away – I believe it was sometime around fifth grade – I was devastated. I had no other friends. She’d been popular and had many, so I sought out her friends. I found another pair of girls who were joined at the hip – Stacey and Melinda – and I hung out with them, the awkward third wheel. It wasn’t the same at all. I changed the spelling of my name. I decided I wanted to be Krystal. A hybrid, of sorts.

Kristal and I were still friends. I visited her at her new house in Utah and then, when her family moved back to California a couple hours south of me, I spent many weekends there. We sent letters back and forth and talked on the phone in between seeing eachother. I still held on for dear life.

During high school we drifted a bit but still kept in touch.

Later, Kristal was my maid of honor when I married Joe.

KCwedding

August 1999

When Joe and I moved to the San Francisco Bay Area, she lived with us briefly. She and Joe didn’t get along and I felt very stressed trying to keep the peace between my best friend and my husband. I admit it – I was a little relieved when she moved out. It meant I didn’t have to question my relationship with my husband as much.

I should have paid attention to that. But I’m stubborn, if nothing else.

We drifted from one another more and more after that. And then my childhood caught up with me and I disconnected from everyone who had been a part of it. I went into therapy and opened Pandora’s Box – I couldn’t discern between friends and enemies anymore so I swore everyone off.

Just about the time I split from Joe, though, I sought her out again. The two parts of my life that didn’t go together didn’t have to anymore and it was a huge relief. I wished I hadn’t lost years with my friend, though.

We’ve seen each other a couple times since then, but life has gotten in the way of much more. She met the man of her dreams and settled down, and so did I. In fact, when I met David, I immediately thought of something Kristal had said to me back when we were kids – that when I met my true love, I would have a quiet and gentle love. She was right, I marveled.

I can’t imagine my life without Kristal. It would be immeasurably different if Kristal and I hadn’t become fast friends on that long ago day in elementary school. I know I would have never found my own bravery, strength, and beauty if it wasn’t for her. She was my hero and she helped me hang onto myself through so much hardship.

Kristal, you have always been so much more than my first best friend, I hope you know that. You are my soul sister and I love you.

School, Special Needs and Sugarcoating Childhood Cancer

Yesterday I met with Jack’s principal and the district nurse to update our 504 plan. We are getting access to a home educator three hours per week to work with Jack when he can’t make it to school. I have to give HUGE props to Jack’s teacher – she has really stepped up to get us support and arranged this meeting in the first place. I can’t even express my overwhelming gratitude toward her! I’ve been much too occupied with trying to get Jack’s health stabilized and was just going to wait on the school issue (especially since he was keeping up anyway). But it was done for me! People can be really amazing!

I brought a letter with me from our oncology office regarding the need for IEP assessment, as well. Back in the spring when I requested an IEP process be started, I apparently did not do it in the exact right way because the district ignored it and had the school work with us on a 504 plan only. I didn’t fully understand the difference between IEP and 504 at the time, so I didn’t push the issue. Since then, I’ve learned a lot more about supporting kids with cancer in school and seen that even this far out, new side effects can pop up. At Camp Okizu earlier this year it was made clear that IEPs are really important for kids with cancer because even if they aren’t showing any significant issues right now, late-term effects are very common. Baseline testing can be really, really valuable when/if problems pop up later.

So when Jack was hospitalized in August, I brought up the issue with the hospital social worker and she drafted a beautiful letter for us! I’ve been sitting on the letter because Jack has barely been IN school anyway – it could always come later, I thought.

The principal took the letter in stride, but the district nurse was clearly flustered by it. Immediately reasons why she thinks we don’t need an IEP came pouring forth. I don’t completely disagree with her – Jack has to be in school to get services and he’s barely been there at all right now. Plus, the IEP requires a lot of assessments and that can be strenuous.

But then the district nurse said, “Well, treatment has come a LONG way! Most kids don’t have any lasting effects!”

And then I kind of wanted to punch her.

I wanted to tell her about how few new treatments have been approved for use in children and that oncologists are still using the same drugs developed between 1950-1970. In fact, the FDA has only approved ONE new drug exclusively for pediatric patients in the last 20 years – despite the fact that the prevalence of childhood cancer has risen 20% in that same time frame*.

I wanted to tell her that she’s wrong – in fact, two thirds of kids will have long-lasting chronic conditions that are caused by the very treatment saving their lives.

I wanted to point out that while more kids are surviving cancer, side effects from treatment are still a huge challenge. Quality of life for childhood cancer survivors needs a lot of improvement.

I didn’t say those things, but I did tell her that Jack had been screened for sensory issues and further testing was recommended. I informed her that we’ve already seen an impact on his abilities in math and physical education. I told her we need a baseline in case he has complications later.

“Well, we don’t want to push him physically when he is going through treatment,” she said.

Ugh. First, you don’t need to tell ME that. Second, that’s not what this is about, lady! It’s about preventing further decline and ensuring the best possible future for Jack.

The nurse did point out that an IEP does not provide a home educator, which makes the 504 more beneficial at this time. But the home educator was apparently a special benefit anyway and it ends January 7th. Because of that, we agreed to stick with the 504 for now and then meet again to reassess in January (which happens to work anyway – not much to be done about any of this during the holidays).

I came out of the meeting with mixed feelings. I am happy that the school is supporting Jack with the 504 plan and there was absolutely no hesitation as far as that was concerned. I’m a bit concerned about future struggles related to the IEP and assessments, though. I’ve heard a lot of negative things from other parents trying to get IEPs for their kids and based on this interaction, I’m just not confident that this will be easy.

At least I’m getting better at dealing with hard things, right?

Later in the afternoon I picked Jack up from school. One of his classmates came up to ask me if Jack really did have cancer and how he got it. I told her yes, he does, and we don’t know how he got it – sometimes people just get cancer. She seemed like she had more questions, but Jack started pulling on my arm and she walked away.

I hope we didn’t scare her. I wanted to give her a better answer but I didn’t have one. As much as I’d like to deny the reality of what we are living with, sugarcoating it isn’t the right answer.

————–

* Source: Unsung Heroes by the American Childhood Cancer Association, published 2011. (This link opens a PPT file.)

The Sensory Child Gets Organized [Book Review]

If you’ve been reading my blog this year, you probably know that we’ve struggled with sensory issues with Jack. We didn’t know whether these struggles were related to his fight with cancer (treatment can affect many things) or if the issues had been less noticeable earlier in his life because he wasn’t under so much stress. He’s always been a sensitive kid – I can remember setting him down on the lawn outside our apartment at nine months old and his look of consternation when he realized he was surrounded by pokey blades of grass. He kept trying to crawl away and shrinking back from the sensation of the grass against his palms. Frustrated, he started crying and reaching for me. After that I learned that if we put a blanket down on grass, he wouldn’t leave it – no playpen needed.

blanketingrass

When he wasn’t busy avoiding certain textures, he would sit and scratch his fingernails on others – which made me cringe. Getting Jack to eat solid foods wasn’t easy. He shuddered and gagged on so many textures. He also wouldn’t tolerate sticky or dirty hands and would hold them out and wave them at me while “uh uh uh”ing until I wiped his hands. This never bothered me – it was always easy to keep him clean because he would avoid being wet or muddy. It also never went away.

Later on, we noticed that he was sensitive to sound. He was easily startled and would cover his ears when a large truck passed by outside – even when we were cozily tucked into our house. He can’t STAND to hear me sing and will throw a fit until I stop.

He’s always had trouble with transitions, too. I don’t remember a time when I could just put a new pair of shoes on him – it’s always been a struggle. Coming home from a trip usually involved a meltdown, which we dealt with by sitting in a dark room together while I rocked and shhhhh’d him.

Many of these things have come and gone over the years and been fairly manageable. We just thought “that’s the way he is.” But earlier this year when clothing became such a problem that he was missing school, I realized maybe we needed help. We had him screened for sensory issues over the summer and there were several problem areas noted. We haven’t had a chance to follow up on the recommendations, though, due to Jack’s unstable health. Such is life, right?

When the offer to review the book “The Sensory Child Gets Organized” by Carolyn Dalgliesh came my way, I jumped at it. In between a zillion oncology appointments, I could get some useful advice that could help Jack in real time! Because while things like 504 Plans and IEPs will try to accommodate Jack at school, they don’t specifically address or help his sensory issues – only the fallout from them. I would love to PREVENT problems in the future.

Photo courtesy of Simon & Schuster

Photo courtesy of Simon & Schuster

First off, you should know that “sensory” children are dealing with a variety of issues – not just Sensory Processing Disorder. The book gives a great primer on what the various issues are and explain how they each impact children. Here are some statistics for you:

  • 1 in 20 kids have Sensory Processing Disorder.
  • 8.6% of kids are diagnosed with AD/HD.
  • Anxiety Disorders are diagnosed in as many as 1 in 8 children.
  • Currently, 1 in 88 children is diagnosed with an autism spectrum disorder.
  • As many of 50% of kids with a diagnosis also live with a co-existing condition
  • Most kids receive a sensory or special-needs diagnosis between ages 3 to 10 years.
  • Many kids will not be eligible for special services and parents need help supporting day-to-day life at home.

Sensory issues are not unique to one specific diagnosis. This struck me immediately because even if Jack does not qualify for a SPD diagnosis, there is still the fact that cancer treatments are known to impact cognitive function – particularly information processing, memory, and organization/planning. We need help in those areas and the book addresses them immediately, explaining in the section titled “The Sensory Profile: Different Diagnoses, but the Same Core Challenges” that the following issues are discussed inside:

  • Attention challenges
  • Ridigity/Infexibility
  • Anxiety and feelings of being overwhelmed
  • Social and emotional challenges
  • Low frustration tolerance and/or explosiveness
  • Executive function challenges

Jack deals with all of these to some degree. And as his parent I struggle to help him deal with them in the appropriate manner, especially because I am stressed about other things so often. I’m sure a lot of other families deal with these issues, too – not only those who have diagnosed conditions.

This book has pictures and suggestions for how parents can (EASILY!) help their children focus on what is important by eliminating other sensory challenges that overwhelm their brains. I love this! I am not by nature a very organized person – I am easily overwhelmed by clutter and mess. With that said, I did find that some of these suggestions are things we are already doing to help Jack (and ourselves, frankly):

  • Labeling toy bins so that he can quickly find what he needs without getting overly frustrated and giving up or throwing a fit
  • Calming routines before bed – we read three books and snuggle before saying goodnight – if we don’t, Jack will thrash in his bed unable to calm down and sleep
  • Picking out outfits ahead of time – this way he doesn’t struggle with the choice about what he “feels” like wearing
  • Sorting Jack-specific food and snacks so that they are easy to see and accessible – he has his own shelf in the refrigerator

Things I want to do still:

  • MORE labeling of bins and grouping of toys – according to Jack’s preferences
  • Rotation of bins so that he gets a chance to play with different toys
  • Visual instructions about the process of play (play, then clean up afterward)
  • Build a quiet zone where he can calm himself and feel safe
  • Buy tactile items – i.e. a bean bag chair and a mini trampoline – so that he doesn’t use our pets for this purpose

There are some fabulous suggestions for how to deal with homework, as well. Jack is easily frustrated and asks for breaks often, but we haven’t always been accommodating because we want him to hurry and get it done. But hurrying him tends to have the opposite effect – he gets more frustrated and ends up going slower because he’s overwhelmed. The book suggests building breaks into the homework time and offers ways to organize the homework load (i.e. do harder tasks first) and make it less stressful for the kids. I’m looking forward to trying these tips out this week.

And when I’m ready to delve deeper, there are exercises in the book to assess learning style, suggestions on organizations that may help, and even product recommendations. Can we say thorough?

If you want to check this book out, visit Carolyn Dalgliesh’s website to find out where to get your copy. And, hey, she has a Sensory Parenting blog, too!

***

For purposes of this review, I was provided with a free copy of “The Sensory Child Gets Organized” by the publisher, but all opinions here are my own.

Halloween and the Alien Astronaut

Yesterday was Halloween and as any special needs parent knows, holidays can be totally unpredictable. I wasn’t sure Jack was going to make it to school; similarly to how other recent mornings have gone, he woke up slowly and complained of chest pain. But I just kept on hoping anyway, and he totally rallied!

Since Jack hadn’t been to school much lately, we only just found out on Wednesday about the dress up parade they were going to have Halloween morning. Jack’s dad was in charge of his costume and Trick or Treating this year, but they wouldn’t see each other until after school, so Jack had to improvise and come up with something for the parade – something that included no weapons or masks.

Of course, he chose something from Dr. Who.

He still has a toy chest full of costumes (from his daycare days when he could dress up every day) and luckily, the astronaut costume still fits (I don’t know how!). Jack decided he could wear that and be an astronaut like in Season Six of Dr. Who. Since he couldn’t wear a mask, he wanted face paint so he’d look like an “alien astronaut.”

He sketched out how he wanted his make up to look:

Self portrait by Jack

Self portrait by Jack

After clarifying that he didn’t just want to look like his usual self (“No, Mom, I want a white face with black around my eyes!”), I set to work. I have to say, it felt very strange to apply make up to my son. He did surprisingly well when I put eyeliner around his eyes, too!

spaceface

So serious…

We rushed out the door and got to school in time for Jack to join in the parade. I couldn’t find parking so I did something new – I pulled up to the drop-off curb and let Jack out on his own.

For the first time ever, I let Jack walk up the stairs by himself and I drove away without walking him to class!

It felt weird but Jack was totally fine (of course). *sob* Later in the evening David told me he was proud of Jack, but more proud of me!

I ended up heading back home after realizing the headache from the previous night had turned into a migraine, but I felt proud of myself and my boy. Then I started mentally kicking myself for not getting a picture or staying to watch the parade (thankfully, his other parents got pics of him later in the day) before deciding not to worry about it and going back to bed.

Jack ended up wearing two other costumes for Halloween. He was a “scary scarecrow” for Trick-or-Treating and then some sort of death metal musician with a red cloak. The astronaut was my favorite, though. Somehow that costume felt perfectly appropriate for the milestone of going off to class by himself!

One small step for Jack, one giant leap for mom (or something)…

alienastronaut

***

Hey, look! I’m participating in NaBloPoMo! You can, too!

Just Write [108]: In Charge

He walked into the bedroom where I was laying alone in the dark, hiding. A mountain of wadded up tissue was on my nightstand and my phone was in my hand. New tears popped into my already puffy eyes, even though I’d already been crying for hours. How could I still have tears left?

“I know I’ve said this before, but you need to ask for help. You need to tell me what you need me to do.”

“I don’t want to be in charge of everything,” I mumbled. I was completely enveloped in self pity.

“You don’t have to be charge of everything,” he replied.

I thought ‘you’re wrong.’

You need to tell me what to do.

That right there means I’m in charge. I have to know what needs to be done and I have to delegate the things I can’t do.

I never wanted to manage another person. Long ago I recognized that counting on other people to do things in my stead is not something I excel at. My childhood didn’t prepare me for that – it prepared me to take care of things myself. And that continued beyond childhood – I’ve made my career as an administrative assistant – someone else’s right hand. I’m the one people depend on, not the other way around.

Of course, being a parent means I am managing someone, albeit in a different way. I am the ultimate authority in my house about what happens with my son. I chose that role and I accept it.

I am not the best boss, but I fulfill my commitment. I’ve helped my son learn and grow and even thrive (despite his illness and my own shortcomings).

But taking care of a special needs child demands more of me than I ever knew was possible. I am not looking to unload the responsibility or shirk my duty. It’s just that sometimes it is exhausting. Because regardless of how many parents Jack has, I am still in charge.

I am in charge because I know more about him and his medical condition than any of his other parents – by choice. I am in charge because the doctors look to me first for information. I am in charge because I have the job that supplies the insurance. I am in charge because I have primary custody – again, by choice.

I am in charge because, in so many instances, I am the ONLY person Jack lets be in charge of things related to him.

I make his doctor appointments. I sort his pills every week and refill his prescriptions. I call the clinic…over and over. I refresh the test results page and I calculate his ANC. I arrange for childcare or changes to his schedule with his dad and step-mom. I know which foods he eats and which he isn’t into anymore. I know when he’s breathing funny or he is on the brink of a meltdown. I’ve documented so much of his life – on paper and in my mind – and I am the default caregiver because of it.

I could ask for help with all of those things, but taking care of Jack is so ingrained in me that it doesn’t even occur to me to ask for help. Why would I? It’s MY JOB. I’m his mother.

No one can lighten that load – I can delegate every parenting-related task I have, and I will still feel the weight of each responsibility because I am in charge no matter what anyone says.

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This post was inspired by Heather’s Just Write – an exercise in free writing your ordinary and extraordinary moments.

Learning to Love Being Good Enough

It wasn’t until yesterday that I really started to comprehend just how differently this school year – and my LIFE – has gone compared to what I had thought it would be. My ideas on parenting have been challenged more than ever before but those challenges have led to a much better understanding of my role as a parent – an imperfectly perfect parent.

Jack attended school two days this week, and I felt proud of those two days. Two days at school is more than he’s done in weeks!

Since I’ve been home with him so much, catching up on work in between talking to doctors, running labs, or checking Jack’s temperature and assessing his symptoms, I’ve even cooked dinner a few times.

Me! Cooking! It’s unheard of! I’m proud of that, too.

I’ve essentially been a stay-at-home mom, a role that I never in a million years thought I could swing. I still don’t know that I could ever do it full-time (if, in fact, I could afford to, which I absolutely can’t), but since circumstances have deemed it appropriate for the time being, that is what I’m doing. And I’m doing a pretty good job. Not only that, but contrary to what I’d previously thought, the part where I’m home without much adult interaction isn’t the part that’s driving me crazy (the part where I don’t know what’s happening from one day to the next definitely is).

“You’re doing an amazing job homeschooling Jack,” his teacher told me last night at our parent-teacher conference.

Oh, is that what I’m doing? I hadn’t really thought of it that way. Is that what they call juggling five million things these days?

I honestly haven’t done much at all to “school” him (unless letting him watch Dr. Who counts). I hand him the schoolwork he needs to do (after rejecting half of the assignments as impossible or not important enough to complete given our situation), get him into it by asking weird questions about the content, and we discuss corrections when necessary. He almost never has to make corrections when it comes to language arts. Math takes more work thanks to chemotherapy, but David is great at working with him on that. I’m no teacher! I don’t even know how I know what I do know, so I pretty much fail at explaining the concepts to Jack. Thank goodness I am not parenting him alone and he makes it to school some of the time!

It’s probably clear I don’t have the most optimistic view of how I’m managing the schooling portion of our life (however! I think I’m doing a great job of keeping him alive!), so I was pleasantly surprised to hear at the conference that Jack is doing really well and is on track to meet (or succeed in some cases) all academic standards. At least, based on the thirteen days he’s made it to school this year (he’s been there 36% of the time!). His teacher had no concerns and really just wanted to share her observations and see if there was anything she could do to make things easier on us.

I love her.

We heard that Jack is a strong writer, as well as a fantastic artist. We knew the artistry part but I hadn’t really thought about him as a writer before, although I realized he’s been doing a lot more writing lately. It was nice to see some work that he’d done at school, which includes some pretty awesome story-telling that isn’t all about Dr. Who. (Maybe someday he’ll be a blogger like his mama!)

wanteddoctor

It’s all Doctor all the time at home.

He is conscientious and well-behaved. He tries hard and when he’s at school, no one can tell anything is going on with him health-wise. He has plenty of friends in addition to the ONE he’s told us about. In fact, when he is late to class, if he can’t quickly figure out where he needs to be, his classmates are totally on top of getting him oriented.

YAY!

Seriously, that was SUCH a relief to hear. I’ve been worried about school but have had so little capacity to do more than what I’ve been doing. It’s nice to have reinforcement that the parenting I’m doing is good enough, especially when I can’t manage anything else!

And, heck, we all might be better off for it.

Jack’s TARDIS Bedroom

I don’t remember when exactly we decided to do it, but once the idea was spoken aloud, it HAD to be. It became official: Jack needed a TARDIS room!

Jack’s been obsessed with Dr. Who for months. He’s watched the (new) seasons 5-7 over and over and he can tell you which episode contains which aliens and when Rory shows up as a Centurion. He’s watched other episodes, as well, but the 11th Doctor and his companions Amy & Rory are decidedly his favorites.

Every empty box that occupies our house is turned into a recreation of the TARDIS. He has also built several versions of the inside of the TARDIS with Legos, which are usually deposited in my lap.

legos

And, of course, there are the drawings.

Inside the TARDIS by Jack.

Recently a good friend of mine decided to take a gigantic cardboard box and make a Jack-sized TARDIS. I admit I wasn’t entirely thrilled (it takes up a LOT of space) but Jack definitely was! He immediately went to work decorating the inside.

cardboardtardis

At first I thought we would just decorate Jack’s door. I found police box decals on Etsy to do just that and decided to buy some blue paint. This is what I hope it will look like (obviously I need to get Jack a bow tie):

http://www.contactmusic.com/pics/lf/doctor_who_11_161012/matt-smith-exits-the-tardis-the-cast_4129453.jpg

Then I thought about it a bit more. David is building Jack a loft bed so that he has more floor space. What if we could make that the control room console inside the TARDIS? Since I wanted to paint the wood anyway, it occurred to me I could paint the bed a silvery-grey to mimic the console! And, while we were at it, we would paint the walls of the bedroom to match the inside of the TARDIS, as well. Jack’s obsession with a toy replica of one Doctor’s TARDIS provided the perfect example for a color palette.

 

paintchips

Paint and decals are all well and good…but my craftiness knows no bounds. The ideas kept coming. I found aqua lights to light up the space underneath the loft bed kinda like this:

http://www.doctorwhotv.co.uk/wp-content/uploads/InsideTardis2010.jpg

Image (c) 2010 Dr. Who TV

And I found some Dr. Who fabric that I can use for a curtain…

But then I got stuck. The one thing I can’t figure out how to do is recreate the circular lights on the walls of the TARDIS. My friend Jana suggested round mirrors, but adding those in are making this project cost-prohibitive… I’m also worried they might fall off the walls during an earthquake and break, so…I don’t know. Maybe plexiglass (but how would I adhere them to the wall?)…maybe some sort of sticker (where can I find those in bulk?). Cheap charger plates or pizza pans that I can buy in bulk?

I may have to say that this is good enough! We shall see.

Regardless, this is going to be SO COOL. Jack’s parents are the best, aren’t they?!