Somewhat Calmer Days

I’m in the second trimester of my pregnancy (at least, I am according to one of the apps on my phone) and things have mellowed out some. Not a lot, but enough that I’m not waking up at 5am having panic attacks and worrying about my ability to parent a second child effectively. Instead I’m waking up at 5am and trying to soothe Jack back to sleep because he’s had a nightmare or three. Or I’m contemplating murdering one of my cats – either the one that likes to scratch every wooden surface in the house or the one that lets out loud, melancholy yowls when he can see the bottom of his food dish.

Pregnancy has made me much less tolerant of my animals’ antics. David has had to tell me to stop trying to give away our pets. And I said fine, but I can’t be held accountable if one (or all) of them doesn’t make it to the end of this pregnancy.

Hormones – they are raging in full force!

Aside from Jack’s nightmares, things with Jack have been a little more manageable as of late. He is enjoying his new adapted PE class, which means, for the first time EVER, he is enjoying physical education at school. We’re being much more lax on homework and watching the clock so that he doesn’t work on homework longer than 20 minutes each night. This helps us all feel less stressed! We bought him a new memory foam mattress and it seems like it’s helping him get out of bed in the morning without the aches and pains (and it’s good for me because my arms were falling asleep when I would lay down with him on his old mattress).

Jack’s been attending therapy for about four weeks now, as well, which started when he began showing signs of depression. He loves going to therapy, which is play-based. He gets to talk about whatever he wants and he’s assured that it’s all private (unless, of course, there is talk of hurting himself or others). He’s had fewer angry outbursts and seems to be more talkative about other things now. Next we’ll have to see if we can do something about those nightmares.

David and I are going in this Friday for our next prenatal appointment and we’re supposed to have another ultrasound done. I’ll be 14 weeks exactly, and the ultrasound tech I spoke with last time I was in said she can usually tell the gender at that time. My fingers are crossed that we’ll be able to find out – baby names are driving me crazy and I hope that knowing the gender will help bring some clarity in that arena. David and I aren’t finding it easy to agree on names – he likes classic American/English names and I generally prefer things that aren’t in the top 100…not to mention that quite a few people I know have either had babies recently or are giving birth this year and some of the names on our list are also being considered by friends.

“You know too many people,” David says.

Jack thinks the baby will be a boy, although the only name suggestion he has offered is for a girl – Ruby. I was impressed by his suggestion, and also a little surprised because he usually names things according to the color they are. Although, now that I think of it, perhaps he is taking inspiration from my own gemstone-inspired name. Huh. (That’s how names get taken off the list sometimes – a thought occurs to one of us like “oh that starts a theme” or “but that reminds me of that crazy person” or “too many celebrity babies have that name.”)

Naming babies is hard…

Anyway, that’s the latest and greatest in our household. And, yeah, feel free to throw some names at us if you think of anything!

Anger Turned Inward

Recently Jack told David that his life was perfect. David looked at him incredulously and asked, “What about the cancer?”

Jack replied, “Cancer doesn’t bother me much.”

Yeah…okay.

Tuesday morning I found Jack sitting in a corner of his room by himself when he was supposed to be putting his shoes on. He was just sitting there. When I asked him what was going on, he told me he felt weird and sad and didn’t know why.

Are you sad because you don’t feel good?
Are you sad because you miss your dad and brother?
Are you tired and that’s making you sad?
Is there something happening at school to make you sad?

None of those, he said. He just didn’t know. He was sad and teary and had no energy for school.

I pulled him into my lap and cuddled with him. I told him I felt that way sometimes, too. We decided to stay home and snuggle under the covers and watch a movie together. We would have a mental health day.

He went to school on Wednesday, and then Thursday came around. Upon waking, he complained that his back hurt, he was shivery, and he had no energy. We went about our normal morning routine and I hoped he would rally and be able to go to school. But he did not. Instead his stomach and chest started hurting.

I decided to give him some time and then I told him I was going to take him to school but that if he wasn’t feeling better by lunch time, I would pick him up. He buried his head in the couch and started hitting it. He growled. I told him I would let him work it out and get his shoes on while I brushed my teeth. But when I came back, he was throwing things and holding up a screwdriver by his face and pulling on his hair. I told him he wasn’t allowed to hurt himself, and he stomped off to his bedroom and slammed the door behind him.

After a bit he emerged again but was still growling and stomping and throwing things about. So I tried to talk to him.

You seem really upset. I bet you’re mad that you feel sick all the time. You probably hate taking so many pills. And you don’t have any control over those pills.

“The pills feel like poison,” he replied. He had quieted a bit and was listening to me, albeit with a frown in place.

I bet that makes you mad that you have to take medicine and that medicine doesn’t even make you feel good – it just makes you feel worse!

Jack nodded.

Medicine is no fun. And you know what, cancer sucks. I hate cancer. It’s not fair that you have to deal with cancer, Jack. You didn’t do anything to deserve cancer. Cancer is a jerk and it shouldn’t be allowed!

“Yeah, I hate cancer, too! It makes me want to break things!”

Well, you can’t break things, but what about ripping things? I’m sure we have scratch paper you can rip up. Sometimes ripping things up makes me feel better. Oooh, and what if you drew cancer and THEN ripped it up?!

That got some life back into him. We headed to the office and I found some scratch paper and handed it over to him. I then gave him some space.

He drew two pictures, each time coming to find me and show me how he could rip cancer to shreds. He shouted “murder” at the pieces and then stomped on them. A bit of a smile came onto his face after destroying the second drawing. I asked if he would draw one for me to rip up, too. He went right to work and came back with an illustration of a body labeled cancer and a dotted line across its throat. He pointed and said, “This is where you can rip its head off.”

I ripped its head off and then kept on ripping while yelling at it, “I hate you, cancer. How dare you hurt my son! You leave Jack alone! No one wants you here! You suck and we hate you! Don’t ever come back!”

And then I stomped on the little pieces for good measure while a cackle bubbled up in Jack’s throat. I felt so much relief to hear that laugh. My boy was back, if just for a bit. We had broken through the cloud that engulfed him.

He kept drawing and I made a phone call to see if I could move up the initial appointment with the new therapist. Thankfully, a spot had opened up in her schedule for that evening.

I then got a text from Jack’s aunt asking if some time with cousins might cheer Jack up. Thank you thank you thank you, I thought. We ate lunch and headed straight there. His aunt and I drank tea and chatted while Jack and his cousin Isha closeted themselves in the office and drew pictures together.

Later, he put up a fight about leaving and got angry all over again but we headed to the therapist’s office anyway. After an hour with her, he was almost back to his old self. I don’t know the details about their session, but Jack did draw something for the therapist and also said, “I told her about my sad feelings.” He also said he’d love to come back. So, I’ll count that as a good session indeed.

Jack asked to watch an episode of Cupcake Wars with me when we got home. We snuggled up and watched a British-themed episode. Jack kept petting me the whole time and we hugged over and over.

It was a terribly rough day in an already difficult week, but at the end it felt like we’d made progress. Maybe Jack’s grief has moved on from denial and he is now allowing the anger to come out. Maybe next time he talks about cancer, he’ll admit that it sucks instead of pretending that his life is perfect.

Even if he doesn’t, we have one picture leftover from yesterday to mark the occasion. We may have to frame it.

CancersGrave

Getting My Ass Kicked

I’m completely sapped of energy.

I’m nauseous.

I’m dizzy.

I can’t breathe.

I’m having heart palpitations.

My brain is totally on the fritz.

After two years of slogging through Jack’s cancer treatment and enduring an exhaustion that I had thought could never be matched, let alone surpassed, I’m being brought to my knees by a fetus.

Yup, I’m pregnant. And thus far, it’s a pretty brutal pregnancy. The mere act of sweeping up leftover pine needles from our Christmas tree nearly caused me to pass out recently.

What.the.fuck!

I don’t know why it’s different this time around. Perhaps it’s due to my age – it’s been over eight years since I was this pregnant with Jack. Maybe it’s genetics – David is cantankerous and maybe his baby is, too! It could be that I have a lot on my plate already, and caring for Jack while trying to cope with pregnancy symptoms is dealing me an extra walloping. Maybe it’s all of those things combined.

In any case, I didn’t expect pregnancy to be so rough on me. I miscalculated. I wasn’t sick at all while pregnant with Jack – just hungry all the time and a little extra sleepy. My sister’s pregnancies with my niece and nephew were pretty easier on her, as well, so I figured I’d be the same. Alas, no.

When does my life ever go as planned?

Along the same vein – we had planned on waiting to tell Jack until I reached the second trimester but that plan went out the window when he broke out in tears one morning because he felt alone and ignored. I apologize profusely and told him that I was working on building a baby and it’s taking a lot out of me. His whole demeanor changed immediately. He found it a little strange to think of me as pregnant, but he also seemed to understand (probably from going through this with his step-mom) that this baby business is hard work. Since then he’s been rubbing my belly daily and telling me that we’re going to need a lot of stuff “if this baby thing works out.” He has also warned me that sometimes babies are annoying – they smack their lips while eating, for instance.

Jack is amazing. I couldn’t ask for a better sibling for this baby.

David, too, is amazing. He is doing EVERYTHING while I am tucked away in our bed. I have felt horribly guilty the whole time and he’s just like, pshaw, go back to bed and let me take care of my baby mama.

So, if the copious pregnancy symptoms are any indication and this baby thing does, indeed, work out, our new addition is expected August 29th.

Fingers crossed that the whole feeling like death thing doesn’t go on for the next seven months. In the mean time, I’ll be sucking down ginger ale, chewing on ginger candy, and stuffing my face with saltines. Maybe I’ll get to keep my girlish figure longer!

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.

****

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.

When Self-Care Comes In Second

Jack is back to school! It’s his second week, in fact. And it’s his fifth day making it to class. Yesterday was picture day and he was told by the photographer that he looked like Harry Potter, which made him very happy.

Antibiotics are done and chemo has restarted. As of Sunday Jack’s ANC was an outstanding 1296! All very good things. Whew, we can breathe again.

Life is back to what is ‘normal’ for us, which means it’s catch up time.

Now that things are moving again and we’ve returned to our regularly scheduled life, fatigue and stress are hitting me hard. I can function like nobody’s business when in the middle of a crisis but as soon as it’s contained, I need to sleep for a month! I wish it wasn’t this way – I wish I had been able to rest more while we sat in the hospital room doing a bunch of nothing. But when I napped, I had nightmares.

So ever since we came home from the hospital, I’ve been caught between needing very badly to get some rest and downtime, and stressing out about that rest getting in the way of catching up on all the things I couldn’t do during that week in the hospital. Mostly that’s a lot of paperwork, bill paying, laundry, and house cleaning. Oh and my job. But there is a big chunk of it that is taking care of myself and also getting time with my husband, things that always seem to get pushed behind everything else.

I’m tired, I’m overwhelmed, and I’m in desperate need of both time alone and time with my husband. And I’m depressed because I can’t see any way around this pile of ickiness.  I just have to go through it.

Family leave should include two parts – the part where you take care of your family, and then the part where you recover from taking care of your family. Where’s the downtime for the caregiver?

I know it’s only a matter of time before I feel like things are okay again. I’ll be able to look on the bright side more readily and I will feel less irritated by things that aren’t going smoothly. Maybe I’ll even be able to blog properly.

Of course, if you hear I’ve run off without a word to anyone, it’s likely I’ve found a very deep hole to hibernate in until the storm in my head has passed. I’ll come out in my own time.

Maybe.

On The Mend

Today is my first day back at work after two and a half weeks of being off to care for Jack. I’m not gonna lie – it’s hard to come back to work. It’s hard not to have the option to nap some time during the day. But it’s also nice to be doing something that has nothing to do with my son’s health.

I am really glad the last two and a half weeks are behind us! A mystery illness causing febrile neutropenia, a hospital stay, tests galore, so many medications on a very rigid schedule…and so much boredom. There are only so many movies to watch and so many crafts to work on. We’ve watched Seasons 5-7 of Dr. Who several times over and Jack has either drawn or built several incarnations of the TARDIS.

Jack’s ANC recovered on Friday, so he was able to get off of the antibiotic he’d been on for two weeks, but then he was diagnosed with a bacterial infection called c. diff. It’s something that attacks a lot of patients who’ve been on antibiotics for a long time because antibiotics strip the good bacteria from the gut. So Jack started a new medication for that, in addition to restarting his chemo. Thankfully the new medication is not one that has to be given on a strict schedule so I am no longer getting up at 5 and 6 am. Yay!

And tomorrow Jack gets to start school! WOOHOO!

I’m excited for this school year. He’s starting relatively on time (this week will be the first homework week, so he hasn’t misses much) and his best friend is in his class this year. I met and spoke with his teacher last week and she is really great! We’re all more accustomed to the school/work/medications routine than we were when he started 1st grade, as well, so I think it will be a smoother year. I hope.

Now that Jack’s ANC is back up, he’s back on maintenance levels of chemo, and he seems totally fine, I’m feeling much less worried about him. I’m so thankful he’s on the mend and things are getting back to normal!

I Totally Called That One

I was on top of things this morning. I pushed aside my anxiety (which I get on every blood draw day) and got Jack his breakfast, drew his blood for labs, and administered his morning medicine. He got to school only a bit late (and we had a good excuse anyway) and then I got his labs to the hospital by 9:15am. I felt pretty good about that!

After dropping off the labs, I got on the highway and headed to work. For the first time this week, there was NO traffic. I flew down the road and through the toll plaza. I dropped my dog off at daycare before 10am – that’s less than 45 minutes to get from Hayward to San Francisco. Hell yeah!

I rode that high for about 2 minutes and then…

Less than 30 minutes later Jack’s lab results came in. His WBC counts had dropped and his ANC came in at a measly 440 – definitely neutropenic and susceptible to infection. While at school.

It’s like I’m psychic!

Or maybe just used to the push and pull that is my life.

David left work to pull Jack out of school while I called Jack’s dad. Jack was supposed to go to his Half Moon Bay home this weekend but they are all sick over there so we decided it’d be best he stay put in San Leandro.

Our Case Manager called me to confirm that Jack is neutropenic and give me instructions for this week. It sounds like we’ll still go through with his procedure on Monday (Spinal Methotrexate followed by a Vincristine infusion) but until then he’ll be off of chemotherapy to encourage his system to recover.

I think this is the first break from chemo Jack has had since this whole thing started last January. I’m not sure what to say about that. It feels strange. I’ll take it, though. It’ll be nice not to have to rush Jack through dinner so that we get enough time between his evening meal and chemo. Maybe the weekend will actually feel like a weekend.

And maybe, just maybe, he’ll sleep in since he’s feeling a little under the weather…

It’s Not About You

Six-year-olds are jerks.

Did you know that?

someecards.com - I love being a kid because when I act like a jerk my mom will totally blame herself.

We’ve been struggling for weeks and weeks with all manner of things with Jack. Finally I went back to the parenting bible I had browsed a year ago – Your Six-Year-Old by Ames & Ilg – and everything became clear. I’m not failing and cancer isn’t stealing Jack’s youth and soul. He’s acting like a jerk because he’s six!

I don’t know why this surprised me. I’ve experienced similar revelations about other frustrating ages and stages. And as each year passes I revise my opinion that the age we just said goodbye to was the worst. Because seriously, kids only get more complicated with age!

But six…I really can’t imagine much worse. At least it’s well known (possibly because we remember them better) that the teen years suck. I remember enough of my teen years to know that I was a royal asshole and nothing my mom could do would have changed that fact – it was like I was implanted with a rage generator. I do not, however, remember much about age six so I just assumed it was mostly shiny and happy. I remember loving school, after all!

My memory is obviously faulty.

It’s always been amazing to watch Jack’s mind work, but now it’s getting scary. He understands – and correctly uses – sarcasm. He imagines up new species and describes their evolution – and it sounds plausible (and sometimes it’s a real thing that he thought he made up!). He states facts about science that *I* have to look up. His mind is getting sharper while mine is slowing down.

He is getting smarter than me, people!

He doesn’t know that, though. He’s still under the impression that adults know everything (although he argues anyway) and he doesn’t want to be an adult quite yet because he’s intimidated by how much it seems he has to learn first. Still, he wants to be important and he wants to be heard. He’s just unsure whether that is a function of age or something else. The uncertainly and anxiety have given him a raging case of “short man syndrome.” And the best person to take that shit out on?

MOM.

At least in our family it’s that way. Sure, Jack is a jerk to his other parents, too, but I seem to draw most of his ire. Maybe it’s because I’m the reminder of how much he has yet to learn. Maybe it’s because he feels safe and secure with me, thus he can act like a complete asshat and know that I will still love him 150%. Or perhaps it’s just a function of the mother-son relationship. I don’t really know.

In any case, I now know that it’s not about me.

And now I’m telling you all, too, so you don’t agonize like I have been: it’s not about you.

You’re welcome.

[Jack is seven soon. Please tell me the madness stops...]

Leukemia, Section 504, and Education Planning

I met with Jack’s first grade teacher, the school principal, and the district nurse yesterday to discuss a 504 assessment for Jack. If you aren’t familiar, Section 504 is part of the Rehabilitation Act that protects students with disabilities. Since Leukemia is a chronic, life-threatening illness that impacts his learning, working, and performance of manual tasks, he qualifies as disabled. Once a 504 assessment is made and it’s determined that a student qualifies, an IEP (Individualized Education Plan) is typically created to address the student’s needs in school.

Obviously, it’s taken me a while to get in gear and ask for this. The irony of requesting this assessment now is that Jack has caught up to his peers in most areas of concern since he started back to school in October. With that said, he is failing Physical Education, missing quite a bit of school, and his self-esteem and confidence are low. His stress level is difficult to manage even on a good day.

I was nervous going into the meeting. Not only am I still getting used to being an advocate for another person – a person whose needs have changed dramatically in the last year – but I’ve also read complaints about parents’ frustrating experiences with schools when enacting 504. I worried that I might get pushback from the school because Jack really is performing well. Thankfully, the school officials were all very understanding. I feel like we are off to a good start in helping to get Jack some relief.

In our hour-long meeting, I summarized Jack’s medication and treatment routines, explained how his health and side effects of treatment can impact him on any given day, and shared my concerns related to the challenges these things present to his education. Mainly it boils down to the fact that Jack puts forth so much additional effort in order to meet standards because of these challenges that it has compromised his emotional health and feelings about school.

We recorded the following challenges that impact Jack’s ability to learn:

  • Sensitivity to temperature changes
  • Bone and joint pain, soreness
  • Catheter in chest
  • Lowered muscle definition
  • Difficulty with coordination
  • Delayed reflexes
  • Shortness of breath
  • Dizziness
  • Weakness/fatigue
  • Attention/focus impacted by chemo treatment levels
  • Monthly steroid impacts mood and ability to cope with expectations
  • Medication taken at school, can get headache near time of receipt

Based on these things, the school will make accommodations for him to aid his learning in the following ways:

  • Additional time to complete assessments and assignments
  • Extra opportunities to repeat and explain information and directions
  • Extra time to respond to information and questions
  • Teacher will provide parents with work when child can’t attend school (to be completed if he feels well enough)
  • PE accommodations, such as alternate responsibilities/tasks
  • Teacher will remind Jack to eat and take snacks to accommodate his lack of appetite and slowness/distractibility when eating

This plan is a bit vague, but it should be enough to give the teachers the ability to customize the help they give Jack without making it a big production in front of his peers. I’m hoping that the additional understanding of Jack’s health issues from his teacher’s will take some of the pressure off of him and maybe that will even result in less self-injury! That’s my hope anyway.

I felt so relieved when I walked out of that office! I alternately wanted to cry and giggle hysterically. I didn’t have to push for any of this and it felt like I was part of a team that has Jack’s best interests at heart. There are people who have access to things that I don’t and they are going to help my child – we aren’t alone and we don’t have to spend tons of time blindly fumbling around the educational system.

Instead we can spend our time blindly fumbling our way through the parenting of our chronically ill kid! It may be a small victory but I will take it!