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 theĀ  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.

Yet Again, I’m Blogging About Mental Health

Today is Mental Health Month Blog Day. Mental health – and illness – is a topic of great importance to me and something I’ve written about before. It’s importance has only grown as I’ve gotten older. My experiences with mental illness have led me to get involved in helping others through sites like Band Back Together and I try to speak about my experiences openly and honestly whenever possible.

Did you know that a quarter of Americans experience a diagnosable mental health disorder every year? It’s highly likely that you or someone you know (or SEVERAL someones you know!) is dealing with mental illness. And yet, “research published in the Journal of Health and Social Behavior (Vol. 41, No. 2) finds that 68% of Americans do not want someone with a mental illness marrying into their family and 58% do not want people with mental illness in their workplaces.”

Whaaaat??

This is why it’s important to talk about mental health!

I'm Blogging for Mental Health.

I was diagnosed at age 15 with depression after I read an article in a magazine. Mental illness runs in my family – my dad, my mom, my brother, my grandmother, and cousins have been diagnosed with various problems – but I was one of the first to receive a diagnosis and treatment. Once I was diagnosed, a number of my family members realized they struggled with the same issues as I did and sought help. Our family life improved drastically after we got help.

Getting help was the best thing I ever did – for me and for my whole family.

I thought I knew everything I needed to know about depression by the time Jack was born, over 10 years after I was initially diagnosed, but then I experienced Postpartum Depression and PTSD reared its ugly head. I threw myself into therapy once again, this time taking a multi-pronged approach with group therapy, skills building classes, and individual therapy along with medication. I went through a variety of these intense therapies for about four years before I felt like I could take a break.

Treatment has been tremendously helpful. In many ways, I am a different person than I was before that very intense therapy. I grew up with so much trauma and while that is common, it’s not easy to cope with. I came up with some very creative ways of coping but the coping didn’t end when the traumas did. And because I was so busy coping, I wasn’t living.

But treatment alone would not have done it for me. I needed community. I needed friends and family. And as difficult as it was to reach out, I did. And my friends and family kept me going throughout my treatment.

Now my son struggles to cope with the challenges in his young life, partly due to genetics and partly due to his experiences with cancer. I am especially thankful these days that I took the time to help myself! I am strong enough now to help him. I can tell him that it’s okay to be sad and that he doesn’t have to just CHEER UP and GET OVER IT. I can help him grieve and move on so that his feelings won’t haunt him for years and years. And I can show him how to ask for help from family and the medical community.

He doesn’t have to be alone.

It is my hope that – eventually – no one will have to go through mental illness alone. Mental illness was something I struggled with by myself for a long time and it wasn’t until I got help from others that I truly started to find healing. It was 100% worth it.

I encourage you all to share your experiences and to reach out to others – whether you are the one struggling or you know someone else who is. Even if the results are small, they make a difference and can change a life.

Coping With Challenges

The coffee isn’t waking me up today. I’m unsure what to do about it.

This morning started off okay and then Jack got grumpy – he didn’t want to change his clothes. He cried while I changed him into a fresh set of pajamas (they still seem most comfortable right now with the soreness of the recent lumbar puncture). I held and hugged Jack and then he took his meds and was happy again. I think when I left the house I took his bad mood with me, though.

Most of the time now I walk around feeling like I’m just on the verge of panic – like there is a tide rising and threatening to wash over me at any moment. I feel raw, as if my heart is on the outside of me and I’m waiting for it to be crushed. I guess I’m waiting for the other shoe to drop. I can’t get over the feeling that there isn’t more bad news coming.

I want to believe that Jack’s cancer will not relapse. That we’ll be able to keep infections and colds at bay. That his treatment will continue to be like it is now with very few side effects. But the more I read on the subject, the more unlikely that all seems. What if his chromosomes come back abnormal at the end of the month? What if the chemo causes neurological problems or physical issues? What if that constant ache in his abdomen is more than just a symptom of the disease he is fighting?

I want to hide from it all. I probably won’t pick that book back up. This seems to be one of those unusual instances where I think I’d rather be ignorant. My ignorant thoughts were, for once, brighter than my informed ones, which doesn’t make much sense in our situation. This is the best cancer, right? The most treatable and curable? But where the FUCK did it come from?

I seem to also be stuck on the thought that I must have been a gigantic asshole in a past life. Holy hell, my life has been hard and it just doesn’t seem to stop! I felt like it was finally getting better – that things were on a more level path and I was letting go of so much angst. And really, I can see the progress I’ve made from therapy in how I’m handling all of this. I can see how much stronger I am and I can even appreciate that about myself. But life is dealing us a low blow now that it is smacking my kid around – the very person I’ve been desperate to protect these past 5+ years.

“I hate challenges,” Jack told me this morning. You and me both, kid! I’m tired of them. So very tired.

We’ll come out of this stronger; I know this. But I don’t want more strength – not if it means the shit is going to keep coming. I’ve had my share of shit and I’d like to pass on more.