Why I Don’t Blog Anymore

Last night David asked me why I don’t blog anymore. I don’t have a great answer, but I suppose some sort of explanation might result in a blog post, so here goes.

My brain seems to have trouble staying focused long enough to string multiple paragraphs together coherently. It’s hard for me to determine the exact cause for the current state of my brain, but it has been a steady problem over the last couple years and three situational things could be the culprit: having a second child who is a lot of work, relearning life after a child’s cancer treatment, changing careers into something that requires quite a bit of creative energy.

Likely any of the above could be to blame. I’ve also had struggles with managing depression and anxiety over the last couple of years, and I was diagnosed with ADHD fairly recently. Finding the proper medication to manage these conditions has been a nightmare and I’ve mostly given up. I’ve thrown my hands up in the air and I’m just muddling through with subpar depression medication and zero ADHD medication. Which is exhausting.

Needless to say, I am thoroughly frustrated with life and the fact that I often can’t seem to get my words out (other than through a litany of complaints) doesn’t help. As David pointed out to me, though, writing is (was) my outlet and it seems to be a need for me. So even if this is a disjointed litany of complaints, it will at least be beneficial to me (hopefully).

If you’re reading this, thank you in advance for bearing with me through this.

Motherhood is Maddening

I don’t like being a mother. There, I said it. Don’t get me wrong: I love my kids. My heart bursts with love for them. I’m not sure who I would even be without them. I am grateful for their existence beyond anything.

But the role of motherhood is maddening. I am terrified of losing my kids, whether it be through cancer or some heinous crime like violence in schools or trickle down effects from an insane orange dictator. Fearing for your kids’ safety constantly is crazy-making.

Motherhood is exhausting. It is primarily up to me to monitor my kids’ food intake, to stay on top of their vaccines and appointments, to make decisions about schools and IEP goals and assessments and extra-curricular activities, to keep track of clothing they grow out of and replacements of said clothing. I know I should ask for help more often, but regarding that I point you to You Should’ve Asked.

Motherhood is staring your own failings in the face every day. Jack is struggling with depression and anxiety. Despite telling myself that he at least has a mom who gets it and can help him navigate it all, I am still constantly heartbroken over it. I am a contributing factor. I knew going into parenthood that there were risks and that mental health problems run in my family. I should be doing more to help him. He needs better therapy (Kaiser just doesn’t cut it) but I can’t seem to find the time or funds for it.

Even as I’m writing this, I’m telling myself, “You are only one person and you are doing your best. You love your kids and that’s what matters. You don’t have to be a perfect parent. Your kids will be fine regardless.” Even that adds to the crazy-making!

And let’s talk about my second-born for a moment. I struggle with him. He is highly active and into everything and doesn’t sleep. Since Dez has been born, it has become RARE for David and I to sleep in the same bed. Bedtime with Dez is long and drawn out and exhausting, often involving tears and anger and throwing things. It has gotten better, 3 and a half years in (at least he sleeps through the night most nights), but that is all relative. (Please, do not give advice on this. We have tried everything. EVERYTHING. EV.ERY.THING.)

Dez is the type of kid who will purposely do something after you told him not to. If you try to discipline him, he will laugh right in your face. He is a limit-tester and he gets away with too much because we are simply beaten down. We’ve taken him to two different events recently and each time only stayed an hour because it’s just too exhausting to manage him. Even when it goes well, we head out early because anything could happen.

Dez is also smart and sweet and funny, but damn! He is a tiny terror and has me completely relearning and questioning what it means to be a parent.

Being the Parent of a Cancer Survivor

While Jack is much easier than Dez in many respects, he clearly has his own challenges. Obviously, cancer is to blame for the biggest challenge of them all!

It’s been over 2 years since treatment ended and life has improved dramatically. Jack has had only 1 absence from school all year, a huge change from the years where he rarely made it to school a full week. He is rarely sick and when he does get a cold, he recovers more quickly than any of us. (Caveat: I still freak out inside when he does get sick or is feeling “off.” I’ll never get over the cancer diagnosis.)

But the fallout is rough. Mental health issues, learning disabilities, and a general feeling of being different from others around him. He is having quite the existential crisis and asking questions about the meaning of life much too early.

The needle phobia, on which we spent thousands of dollars on a therapist who specializes in exposure therapy for phobias, never fully went away and only got stronger after we quit therapy (partially due to finances but also due to having made significant progress).

We finally tried medication to try to address the needle phobia and steadily increasing anxiety, but that was disastrous. I knew that Jack had odd reactions to medications when he was on treatment, but those odd reactions have continued. One med meant to help with anxiety and ADHD instead made Jack extremely anxious and suicidal, and another had him falling asleep and nearly fainting at school.

We decided to that perhaps we would wait until he is older to try any other medications…

And finally, after over 6 months of torturous failed attempts to get a blood draw that left us all dejected, Jack’s oncologist said we could stop trying. That doesn’t eliminate the problem (he will need a blood draw at SOME point), but at least we’ve gotten a reprieve.

Now that we aren’t managing cancer treatment, we are managing school. In many a childhood cancer survivor’s case, that means things like special education through an IEP. Due to the timing of Jack’s cancer, we have no idea if he would have had these issues if it was not for the cancer. I try not to dwell on that thought much, but it creeps in from time to time.

We recently went through a triennial evaluation at Jack’s school where Jack was evaluated to determine whether services were still needed for him. This is routine for all IEP students, but it is still nerve-wracking for parents. It was suggested by the school psychologist that services may be reduced or taken away because Jack was doing so well (nevermind that he was failing at the beginning of the school year and the IEP is what keeps him afloat), so that was a big stressor. Finally the school psychologist changed her tune when she heard from Jack’s math teacher and his special ed teacher that he often gets overwhelmed in class and hides under his desk. In the end, we were able to keep all the resource hours in Jack’s IEP and the team added a weekly check-in with the school psychologist.

Based upon the fact that my child is getting overwhelmed and his response is to hide under a desk, combined with the atypical results in the educational assessments (along with the odd reactions to medications and a few other niggling things), I finally crawled out of my place under a rock and decided to get Jack assessed for Autism Spectrum Disorder. I have no idea what the results of this assessment will look like. I go back and forth on whether this is a giant waste of time, but in the end it’s good to at least rule it out, I guess? At least we’ll know whether Jack is just unique or if he has more significant neurological differences that aren’t explained by what we know so far.

Hence, Why I Don’t Blog Anymore

Between the overwhelming number of things to manage in life, the sensitivity of the topics I am addressing, and the sheer fatigue to overcome…is it any wonder I don’t blog anymore? It all comes out as emotional vomit.

I want to write, though. I am going to try, but I will make no promises. There’s a lot of living to be done.

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Drowning in December: A Depression Story

December feels like drowning. The chill in the air sucks at me, the gloom from a hidden sun suffocates me, and the weight of a million responsibilities pulls me down. I am sinking beneath it all.

I have been fighting this relapse of depression, anxiety, and PTSD symptoms for about a year as of this month. I’ve gotten to a functional place; I can work and take care of my kids reasonably well. Almost reasonably well. These are the things I’ve prioritized over everything else in my life out of necessity.

I look around at my house and see clutter; we are STILL cleaning up from Thanksgiving, in fact. I look at my backyard with the broken fence and my patio dotted with random pieces of rotting furniture. It’s all a reminder that I’m not keeping up with the day-to-day and it’s been building up and is even less manageable than it used to be. It’s a visual representation of the garbage in my brain that I can’t seem to clear out.

In the middle of my own struggles, Jack has mental health challenges, as well. The fallout from cancer is seemingly neverending. His last successful blood draw was over 6 months ago; he is long overdue. We have (and by that I really mean David has) made four attempts in the last month to get the draw at the lab, but Jack’s fear and panic have won out each time. He has had anxiety and depression, too. And so we are heading back to therapy this week, and adding a psychiatrist to the mix.

He’s 11. This is too much for an 11-year-old. Hell, I’m almost 37 and it’s too much for me.

As for me, there is nothing to be done but to keep putting one foot in front of the other, keep trying whatever medication cocktail my psychiatrist suggests, and keep focusing on the fact that I’m still IN IT but that I will float back to the top eventually.

Try not to sink. Try to swim. The surface is there; you just have to the find it.

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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.

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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.

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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.

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