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.

No More Kids, Man

I thought it would be different this time.
I thought I was prepared.
I had doubts, sure. I started worrying as soon as I knew I was pregnant. But I reassured myself, and David reassured me.

In some ways, I prepared well. I was careful to stay on my anti-depressants. I said ahead of time – I would only breastfeed if it wasn’t torturous like it was the first time around. I took three months of maternity leave, instead of 6 weeks.

And many things have gone more smoothly with this second child. Labor was fairly easy, as was recovery. Dez has been a pretty easy-going baby. Breastfeeding hasn’t been nearly as horrid as it was the first time.

But I’m still me; I don’t function well on inconsistent sleep, and I haven’t slept a full night since early pregnancy. I still have a sharp limit on amount of physical touch I can handle – and that is far surpassed on a daily basis (and all.night.long) by a clingy toddler.

I still give everything to those I love and forget about myself until I’m depleted and just going through the motions. And thus I no longer make time to craft or read or hang out with friends without a child to care for at the same time.

Look at how long I’ve gone without writing!

A few months ago, I changed jobs. I left a decade+ long career as an executive assistant (aka taking care of grown men) because I felt like I could no longer take care of people all day and then go home and take care of my family, too. Some people can do that (nurses!), but my tolerance for that type of work withered during Jack’s treatment. So now I am starting all over at the bottom with a new career and I enjoy it much more (minus the lower salary), but I feel like I’m still in the negative on my caregiving stores.

So, my kids aren’t bathed enough and their nails are too long. Jack is overdue for some health-related tests, and Dez doesn’t quite know what a toothbrush is yet (or a dentist, for that matter). My house is in a constant state of disaster. Anything that doesn’t walk right up and take what it wants from me is being neglected – my pets, my husband, my friends, myself.

I don’t know how to fix any of it, but I know how to prevent this from happening in the future – no more kids! I love Jack and Dez so very much, and it seems to be to my detriment. I’m sure it will get easier, but right now it’s awfully hard and I can’t survive it again.

***

I wrote this a couple of weeks ago on my phone and emailed it to myself to post when I got to it. And I didn’t get to it until today. I’m in a better place now mentally compared to where I was when I wrote it, but I do think it’s a good idea that I’m done having kids. That makes me sad, but I’m coming to terms with it. I love my family and I need to figure out how to keep myself on the up and up for the long haul!

Mom and Dez

Dez and me (’cause cute photos are a must).

Have you made a decision on whether you are done having kids or not? How did you come to that conclusion?

Keeping Your Toddler Busy When Traveling

Last week I hopped on a plane with my very active 13-month-old baby/toddler. Desmond and I took a 4.5 hour flight from San Francisco to Atlanta, just the two of us (well, and everyone else on the plane). We flew back home yesterday.

I will come out and say this for all to read – I was terrified to take this trip on my own. But that’s how most adventures in parenting start, right?

Airport baby wearing

Babywearing at the airport

To prepare, I scoured the internet for ideas for keeping small children occupied on airplanes. I found a lot of suggestions that work for kids over the age of 2 years – those kids that are less likely to eat the crayons or throw the blocks at other passengers. Dez is still not 100% accurate with putting food in his mouth – there is no way he would have luck drawing on a magnedoodle!

Having very little luck with my search on the internet, I proceeded to tear through my house looking for items that I wouldn’t normally let Dez play with but that also aren’t dangerous while supervised. I came up with quite a few things to put in my “forbidden items grab bag.” I then hit up my Facebook parenting groups to gather more ideas before heading to Target. (I came out spending way too much, but it was less than $100, which is kind of amazing for a trip to Target!)

In the end, I collected quite the mishmash of items to entertain my toddler on the plane. And thus I bring you tips for flying with a toddler (without losing your mind).

Ewokmama tips for flying with toddler

Ideas for Fun and/or “Forbidden” Items to Bring on the Plane:

  • a fun keychain with spare keys and a large paperclip attached
  • various expired membership cards
  • a bracelet
  • post-it notes
  • small, portable toys that are new to your toddler – we had Little People figurines, My Little Pony minis, a Little People clown car
  • a pill organizer filled with snacks
  • stickers
  • interactive books (i.e. a “slide & seek” book and Pat the Bunny)
  • a pack of playing cards from the $1 bin

My cell phone is the ultimate forbidden item, of course…so I also looked around the app store to find things that might appeal to a toddler. [Note: If your kiddo is closer to 2 years and above, Toca Boca makes some awesome apps.] The best app I found is called “Animal and Tool Picture Flashcards for Babies” by Open Solutions. It’s free and contains a mixture of animal photos and clip art pictures; when you tap on a picture, the app states the name of the animal and then plays a clip of the sound that animal makes.

That app was the best money I never spent! Dez LOVED it. Even aside from the animal pictures and sounds, he really enjoyed dancing to the background music. It came in handy in the hotel room later, as well.

A word of warning, though. Now that I’ve let Dez play with my cell phone, he is more demanding about it than ever. Still, it was worth it for peace of mind on the plane!

If I were to pick one item from the above list to suggest above all others (aside from the animal flashcards app), it would be the pill organizer filled with snacks. Dez thought it was great to point to the container he wanted me to pop open – over and over. The snacks were key! A well-fed kid is a happy kid!

Aside from items to schlep along with you onto a plane, here are a few more tips for flying with toddlers:

  • Opt for the window seat. Not only will your kid like the view, but you can use stranger anxiety to keep him from trying to make a run for it.
  • If you are flying with your child on your lap, upgrade to get extra legroom. You can let your kid stand up a bit or maybe even play on the floor (depending on how MUCH leg room there is). And in case of tantrums, flailing limbs are less likely to hit the seat in front of you.
  • Babywear through security.
  • Ask for an empty cup and/or water bottle for your kid to play with.
  • Make sure to nurse or give your child something to drink during take off and landing to help with eardrum pressure.

Hopefully these things will help you get through your trip without any meltdowns from your toddler OR YOU. If not and your kid has a tantrum, hang in there! And maybe buy your neighbor – and yourself – a drink to cope.

Moms and dads, what did I forget? What are your tricks for traveling with toddlers?

No Way Out But Through

When Jack was diagnosed with Leukemia three and a half years ago, I focused on the “End of Treatment.” I thought we would do what we could to get through the difficult treatment process, but that eventually we would be done.

Well, to be perfectly honest, I thought we would be done when the Induction phase (where remission is achieved) was complete – 30 days after diagnosis and the beginning of treatment. Then I readjusted my thinking – we would have most of the hard stuff behind us after Consolidation – the chemo-heavy “blast the hell out of any remaining cancer cells” phase. I figured Maintenance would be unpleasant, but easier that those prior phases – I thought we would pretty much be done once we got to Maintenance. But then Maintenance lasted over two years and while much of it went smoothly, we did not feel done at all – instead, the hardship of all we’d had to endure up to that point caught up to us.

THEN I thought – End of Treatment is the ticket! End of Treatment would come and this business would be behind us! But, well…

I’ve lost count of the number of therapy sessions Jack has had at this point. With this latest therapist, we’re at least past 10 sessions by now. This therapist has been the most helpful, and Jack has had two successful blood draws! By “successful,” I in NO WAY mean easy. There was shaking and tears, and both times I thought we would not get the draw. But Jack managed to push past his fear and do it!

The first time he was successful (after 8 therapy sessions and countless “needle exposures” at home), he felt jubilant and accomplished afterward! He even said it hurt much less than he thought it would. But the second time was harder for some reason, and afterward he felt tired and defeated and weepy. It didn’t help that one of the phlebotomists in the lab muttered, “He’s never going to be ready,” which Jack heard.

Two steps forward, one step back. Can I bill the lab for the therapy appointments, ya think?

As the therapist delves deeper with Jack into the medical trauma he has experienced, the emotions (mostly negative) get harder to deal with and manifest that difficulty comes out in various ways. Fear randomly comes and goes, insomnia often plagues him, and Jack has felt more of a need to cling to his parents. Some OCD tendencies showed up during the second blood draw, something we hadn’t seen in him before, and then again in his therapy session the next day. Depression – a despair that no 8-year-old should even be able to contemplate – came over him at bedtime on Sunday.

Having gone through trauma therapy myself, I know how hard it is and that when you are in it, it feels like nothing will ever be okay. There are many forces within our minds that try to protect us from feeling the pain of trauma – they tell us to run from even distant memories of it. It’s exhausting to fight your own brain. It takes a fierce, stubborn person to do it, and lots of support.

I have no doubt Jack can do it. We will support him every step of the way.

But he has many doubts and fears. After the therapy appointment Saturday, which had him so upset that he started to run around the room near the end and stopped being cooperative, I tried to reassure him that it’s all worth it.

“It doesn’t feel worth it! It feels terrible!”

I know, buddy. It really, really sucks.

The blood test results – what much of this effort and urgency is about – look pretty good. Jack’s immune system is recovering, which is very reassuring. But for some reason, his iron is super low and that leads to other worries, more medications (thankfully, just a liquid iron supplement at the moment), and additional tests.

We don’t want more worries, more medications, or more tests. Our cups not only runneth over from these things – they’re being crushed by the weight of them. We don’t want anymore, thank you!

We have no other choice, though, so it’s one foot in front of the other. I’m coming to terms with the fact that I have to stop thinking in terms of when cancer will be behind us. When you’re in it, you can’t see through to the other side.

You just have to keep going anyway.

Reconstructing The Past

Jack is starting therapy soon to address the post-traumatic stress issues that are causing us all concern. The short term goal is to address the  needle phobia associated with it, which is more accurately described as a “lab-induced panic spiral,” but ultimately he has a LOT of anxiety that controls him and if we could ease that even a little bit, I’ll consider it a WIN.

There are a lot of forms to fill out when you go to any sort of specialist, so I’ve filled out so many pages my hands have gone numb and started aching (seriously). Forms for the IEP evaluation, forms for the neuropsychological evaluation, forms for the ADHD assessment, and now forms for this new therapy.

They are all similar, but different. They all include questions about the past – and this is where I pat myself on the back for keeping records (something I’m less good about with Desmond – arg!) about Jack’s younger years. I have my blog, a baby book, the CaringBridge journal, and many, many pictures. I use all of these things to answer the endless questions and reconstruct the past because my own memory is full of emotion, which can often be difficult to explain in words.

I’ve spoken with the oncology team, the social worker, the child life specialist, several therapists, and all of Jack’s other parents (of course) about the best way to move forward and address this issue. I’m the collector of information and the main distributor. Perhaps this is because I’m a writer, or because I’m a mother, or some combination of things. It’s a little bit odd that it’s me in this role, though, because my memory in general resembles swiss cheese – some memories are perfectly in tact and others are just GONE. Still, it’s up to me and somehow I’m making it work.

This whole Leukemia business started with some general sickness and then a blood test. That blood test was traumatic – for me and Jack. He was 5 and had never had one done. He had never liked needles, but he didn’t spend a lot of time thinking about them…until that day when I had to hold him down and lock my legs around him in order to keep him still for the lab tech to insert the needle (note: always ask for a pediatric phlebotomist for your child!).

I know intellectually that he screamed and cried but I don’t have a specific memory of that part – that part of my inner film is a gaping hole. Holding down my screaming child while he was being hurt was too horrible to remember clearly, so I locked it up and threw away the key.

That night, Jack had his first night terror. I’d never seen one before (in Jack or in anyone) and it scared the crap out of me! I thought it was a seizure. I didn’t connect it to the blood draw at all, even though I knew the blood draw had been traumatizing. I wasn’t thinking very clearly at the time, after all.

But I’m thinking clearly now (mostly). And after filling out a ton of questionnaires and recounting all of the methods we’ve tried and reading over various records of that time when Jack was diagnosed and having witnessed several night terrors (that are pretty much always the same – screaming, thrashing, pleading “No no no no no! Mom! No!”) – all the dots finally connected enough for me to wrap my brain around it.

That initial blood draw, and then the wave of awfulness that followed (more blood draws, an IV, surgery, an MRI, x-rays, platelet infusion, cancer diagnosis – all within the span of 4 days), was the catalyst for this ‘needle phobia.’

Knowing all I know about mental health and having lived with PTSD for decades myself, it still took me this long to wrap my head around what happened to get us to a point where Jack can NOT STAND a blood draw. Stopping to think about it makes it clear to me – OF COURSE he is terrified of blood draws. Every time he sits down and holds his arm out to a white-coated person, he is transported back to that time 3 years ago. The emotions and blurred memories of a terrified 5 year old rush back to him and suddenly he is reliving the collection of medical traumas he’s endured since he first got sick.

Even though he’s 8 now, he is still not much more equipped to handle all of that now than he was then. To him, a needle is not just a needle – it is so much more terrifying that a sharp piece of metal. To Jack, a needle represents a 3-year battle for his life. And that battle has ended, but the winner is still unclear. The cancer is gone, but we don’t know for sure that’s it gone for good and that uncertainty leads to anxiety.

With cancer out of the way, the emotions that were pushed to the background over the last few years have resurfaced and they’re kind of taking over. Jack’s had two night terrors in the last week. His anxiety is at a high again and he has a weird, nervous energy about him that he seems unable to control. He has complained several times of “feeling like he’s going under anesthesia,” which I’ve gleaned is likely some sort of dissociation, and it comes upon him at random times.

Jack brain is reconstructing the past whether he wants it to or not. And my job as his parent is to help him get the tools to understand and resolve it.

To therapy we go.