You’ve Gotta Go There to Come Back

Last week I went to the Type A conference in Alexandria, Virginia. It was my first time away from my whole family for longer than a night in over 3 years! I was so excited to get some time to myself, see friends and family (my sister lives in Maryland), and sleep in a comfy hotel bed without a toddler threatening to wake me in the wee hours of the morning. Like all things worth doing, it wasn’t easy to accomplish, though!

A little over 24 hours before I was due to head out, Dez came down with a fever. I packed my suitcase while his temperature surged to 105. I worried, as I always do now when fevers strike (thanks, cancer!). Naturally, I had trouble settling down to sleep that night. And then Dave woke me up around 3am because he could feel Dez’s heart pounding in his chest and the dose of Motrin we’d given him that evening hadn’t done anything to budge the fever. I called the Kaiser advice nurse, a thing that is old hat now after all the health worries we went through with Jack, but nerve-wracking nonetheless.

sick toddler laying on a couch

I was given the usual precautions: keep him hydrated, remove extraneous clothing, try Tylenol, and take him to the ER in if his temp goes over 106. We gave Dez some Tylenol and all went back to sleep (“He’ll be fine. He’ll be fine. He’ll be fine.” repeating in my head).

I had a nightmare about missing my flight, so naturally I woke up feeling even more frantic! I made it to the airport just fine, though.

Dez was miserable while I was gone. David took him to the doctor after 72 hours of fever, whereupon he was diagnosed with an infected tonsil thanks to a random virus. There was nothing to do but let it run its course.

While that was going on, David was also working with Jack to get him caught up on math and science homework. The middle school workload is turning out to be difficult to keep up with, and we got a (surprise!) progress report recently showing that Jack’s grades were looking grim. I made a deal with him before I left that if he got caught up while I was away, he could order two books from the book fair at school (side note: Jack is super easy to bribe! It takes so little!). He had to stay up late a couple of nights and got help and coaching from David, but he did it. His grades have improved drastically already.

I had so much guilt while I was away, but I swallowed it. That’s what we have to do as moms, right? We have to step away for a bit of personal renewal and trust that our families will manage without us. And mine totally did! David took charge with doctor appointments and nursing Dez back to health and helping Jack get caught up on his homework and ensuring that his teacher recorded the late assignments. I got home and everyone was healthy and the house was even clean! Everyone had missed me, but they managed quite well without me. That felt good.

The conference itself wasn’t great, but I am glad I went even if just to let my family show me how strong and capable they are. It was worth it just for that.

Why I Marched on Oakland

On January 21st, I marched in Oakland as part of the Women’s March on Washington. I know there are some out there who don’t understand what marching accomplishes. I don’t always know the answer to that, but sometimes you feel strongly about things going on in the world and you can’t sit there anymore and do nothing. Sometimes, marching just feels right.

It was a diverse group that marched in Oakland. It wasn’t only women; there were people of every color, size, shape, ability, gender, sexual orientation, and flavor. The reasons why participants marched were many and varied.

Jack and me at the march in Oakland. Photo © Rhea Avalos.

Jack and me at the march in Oakland. Photo © Rhea Avalos.

Here are the many reasons that I marched (with my son Jack) yesterday:

  • To show that I will not be a silent victim of Trump’s fascist agenda and toxicity.
  • Because every person who marches builds up a critical mass that results in 2.5 million people, which shows that we are not a small minority of people who are concerned with the dangers of a Trump administration.
  • To show support to every person who will be targeted and harmed by Trump’s agenda and toxic atmosphere for simply trying to live their life:
    • people of color
    • LGBTQIA people
    • women
    • immigrants
    • those in need of affordable healthcare and protections against pre-existing conditions clauses
    • children who deserve to go to school without worrying about gun violence
  • To feel solidarity with my fellow citizens who also want to build a better America–an America that is constantly improving and not trying to return to the past.
  • To be part of a movement so big that it cannot be ignored.
  • To show my children what freedom means.

I will keep marching because it means something to me and reminds me what it means to be an American.

Living That Normal Life

For the first time in nearly five years, Jack’s latest lab results were normal! While he finished cancer treatment over a year and a half ago, his body has taken its sweet time showing us that it could function normally. The last hold out on the labs was his ferritin level, which stubbornly refused to come up even with liquid iron supplementation. Finally, though, he’s off of supplements and his ferritin is normal!

Health aside, Jack is mostly living a normal life as a regular 5th grader. He’s been improving steadily in school thanks to a teacher that is pretty laid back and increased time in the resource room for math help. He even likes math sometimes!

Oh, and he can tell time now. That finally clicked when we got him a smart watch. He played around with the time display a lot and I think that helped him understand how time works.

Who knows, the increased ferritin level could also be a factor. (Apparently low ferritin can impede brain functioning.)

Things have improved considerably for all things Jack-related. No more fits over homework, very few missed days at school, and mood stability. In our darkest cancer days, we never thought we would get here. It’s pretty incredible!

At the end of January, Jack will reach 5 years disease-free. He survived.

We all survived.

Brothers

Jack and Dez on Thanksgiving.

Progress in Getting a Better IEP

After many years of back-and-forth with Jack’s school, we have finally gotten an IEP that I think we are all happy with!

For the first time since we started meeting with the educational team at the school back in 2013, they didn’t fight us on where Jack is academically. Everyone agreed that he is demonstrating the long-term effects of his cancer treatment. Everyone agreed that what we’ve been doing so far has not helped. Finally, the school accepted that the holes in Jack’s learning would not just magically fill up again now that chemo is done. They have conceded that Jack has a huge gap between intellectual ability and academic achievement in math due to processing problems (i.e. dyscalculia), memory, and attention issues.

fear of math

Does not compute… Photo © Jimmie, Creative Commons usage.

I can’t tell you what a relief it was to walk out of that IEP meeting last week and have plans in place – not just HOPE but plans.

Jack has four new goals written into his IEP, including learning to tell time*, learning to count money, practice basic math facts so that he can get 80% accuracy, and fraction learning in the resource room prior to learning it in the classroom. Accommodations will include shorter assignments, untimed classwork, and the teacher will make sure he understands instructions/repeats them back before left to do the assignments.

Jack previously had time one day per week in the Resource Room (which amounted to 75 minutes per month) along with two other students and no individual help. Now he’ll spend time three days per week in the Resource Room and one of those will be solo with the resource teacher!

It feels like the future is looking brighter! Even if these things don’t work, we’ll know more about whether Jack can learn certain things if taught in a different way or just…not at all.


* Jack has no concept of time – not hour of the day, not day of the week, etc. He can’t tell how long something takes or how much time has passed – whether it is nearing bedtime, whether it’s late or early in the day, or what day tomorrow is. He floats along and has to have everyone around him tell him what to do next. This makes time management impossible! Part of the problem is that he can’t hold onto information about sequences longer than maybe two steps (so even if he does know that today is Monday and tomorrow is Tuesday, he has no clue where those days fall in the sequence of the seven days of the week). Another part of the problem is that he has trouble with assigned meaning of things – i.e. a quarter is worth 25 cents because someone long ago decided that was the case; the value isn’t inherent to circular pieces of metal of that size. He can’t wrap his brain around that. It’s like it’s another language that he can’t comprehend – the language of sequences and numerical meaning.

It’s A Hard-Knock Life (For Us Parents)

I have a migraine right now and my hip is fucking killing me. I would love to go to bed – I don’t even care that it’s not even 9pm on a Friday – but I can’t go to bed because Dez is trying to go to sleep in said bed and my presence is not conducive to him falling asleep.

This is parenthood. Sleep is like vacation to me – better, even, because it requires much less planning (and yet is no less elusive at times).

David and I are involved in a tag team effort at bedtime these days. I nurse Dez, then David steps in when Dez decides maybe he doesn’t want to go to sleep and tries to make a break for it. Daddy means business, though, and when he walks in the room, Dez knows his attempts at delaying bedtime are doomed.

Being the parent of a toddler is hard. I had forgotten just how hard. I guess that’s what happens when you wait eight years to have a second child! This little person who is most definitely his own little person and yet can’t do a damned thing for himself yet (except stuff too many yogurt melts in his mouth at one time) can make you question your choices in life, your sanity, and your self-worth. I had forgotten, but now I remember: I do not like the toddler years, Sam-I-Am.

Frankly, the pre-teen years aren’t seeming to be much better at this point. I’ve been meaning to write about all kinds of Jack-related things but it’s a big ball of complexity that I barely want to think about. The shortish version is this – he has been diagnosed with ADHD, dyscalculia (a math learning disability), and anxiety brought on by medical-related experiences. And in a year he goes back for more testing because the neuropsychologist isn’t sure she was able to get him all figured out.

At nearly the same time that we got the diagnoses and the rest of the results of the neuropsych testing, things at school got particularly bad. Jack and his teacher are at complete odds. It’s partly Jack’s fault and partly the teacher’s fault, and both of them are less than flexible people. We are working on Jack’s behavior, though I think we (and the teacher!) will just have to accept that Jack will have some bad days.

Therapy has been successful, though, so that’s a plus. Yay! I’ll take all the victories I can get.

Back to Dez…he’s a weird little fellow. He’s no longer that magical unicorn baby. He is vocal and can be clingy and so very quirky. He took his first unassisted steps a few days before Christmas, and then hasn’t walked since. He just goes around walking on his knees (which are now quite callused). He doesn’t say much, either. He has some words but very few that are clear. That doesn’t stop him from chatting, though. He talks a LOT – just not in English.

He also doesn’t sleep for shit. He is a terrible, no good, very bad sleeper. I think he must have gotten it from David because Jack and I both excel at sleeping!

He is a great eater, though. He’s got Jack beat on that!

So clearly we’re living a hectic existence right now. I know it won’t last forever and one day I will look back and miss the moments where Jack helps his brother walk around the living room or Dez snuggles up to me for midnight nursing sessions…but right now I am dreaming of peace and quiet.

Fewer headaches and a massage would be lovely, too.