Behind me sleeps my 7 year old son, fresh out of surgery. He may be 7 (and growing up so quickly!) but he will always be my baby. This surgery is a huge deal. While my 9 year old has had multiple surgeries and it feels like it’s “always something” with him, this is the first serious thing that has happened with my 7 year old since he woke up orange as an infant. It’s so hard to see him like this – exhausted, in pain, bored, feeling left out as he is missing school and baseball.
It’s also difficult to be here again. Don’t get me wrong – I love American Family Children’s Hospital and will likely never doctor for the serious stuff anywhere else. The trouble is, being here again is a serious trauma trigger for me. You see, just 2 years ago, my 9 year old (who was 7 at the time) had brain surgery here.
Going through that experience is something that I would never wish upon anyone. As I walked through the cafeteria during the surgery that took place today, I remembered attempting to eat lunch 2 years ago with a lead weight in my stomach, wondering if my child would stroke, hemorrhage, or die before my meal was through. As I hold the basin and rub my baby’s back today, watching his green Jell-O make yet another reappearance, I remember how violently his older brother threw up for 12 hours straight 2 years prior. As I lay down for the night, I recall how my older son’s blood pressure bottomed out in the middle of the night 2 years before and have to will myself to close my eyes and trust the wonderful nursing staff to do what they do. Yep… definitely not easy being here again. Been dreading coming back here something fierce.
And the worst is yet to come, as I now also begin the 8 day wait that I’ve been quoted to receive my baby’s biopsy results.
Oh, yes. I said “biopsy”. Not an easy word to utter after watching my mother-in-law lose her fight to terminal cancer a mere 4 years ago and I recall the suffering that our family endured during that time. The biopsy is currently a secret from the kids, which adds a yucky feeling to an already gross situation. I really hope we can keep it that way with negative results. I imagine that watching a child fight cancer is a monumentally terrible experience all on its own. This would also likely trigger an immense PTSD reaction in my older son, which would make life an extra million times more difficult. I have been in and out of fight or flight mode daily as I try not to focus on the what-ifs and try not to freak out too much about a future that may not even come to fruition.
So how have I been getting through all of this?
- By allowing my relationships to nurture me by way of letting people in.
I didn’t do this as well 2 years ago as I am now. While the people around me knew what was going on, most of my conversations were superficial and I was repressing my feelings a LOT. This time, I am open and vulnerable and trusting the people in my life to respond appropriately. I have been blown away by the amount of support that I have received.
2. By accepting help.
I struggle with this one a lot. I think most “caregiver” personalities do. But when we refuse to allow others to help us out, everything feels heavier. I was not able to accept help 2 years ago. I also had less people offering it up then. When you appear to carry your load so well, it’s hard for people to see that you need help. Changing your ways with regards to this isn’t easy – it’s definitely a process. When people first asked me what I needed, all I could say is that I honestly didn’t know what I needed. Over time, I was able to identify small things here and there that actually helped a lot. For example, during my son’s MRI, I was able to identify for a friend that I forget to eat and drink during times of extreme stress. I now get private messages from her reminding me to drink water, which has been really helpful!
3. By seeking professional help.
Any good counselor (or, in my case, former counselor) will have a counselor of their own. While I am really good at CBT’ing myself and my counselor often just listens to me work my own issues out (I am very much a verbal processor), there are times when I definitely need that outsider perspective. For example, she checks in with me about how well I am or am not connecting with my spouse, she helps me find functionally appropriate replacement behaviors when I am engaging in less than ideal coping methods, she helps to hold me accountable for self-care, and she validates the crap out of me.
If healthcare coverage is a barrier for you, there are some free options out there to receive support from someone who has been trained. (If you need help finding these resources, send me a message and I will be happy to help!) Everyone needs someone they can talk to who can stay objective and neutral.
4. By managing my workload.
When my son had his brain surgery 2 years ago, I attempted to maintain my 40+ hour per week job without altering my workload (or sometimes even taking on more!) I was one of those people who attempted to avoid my feelings by keeping busy, and my employer fully supported it until it later became apparent that the quality of my work was negatively impacted. I eventually began to cut back my hours, but it was too little too late. I wound up unable to carry out all of my duties and eventually burned out.
This time, I made sure to avoid that pitfall. I have been very mindful of avoiding burnout and have been doing a much better job of listening to my body. As a result, I have put in fewer hours since this chapter of our story began. I won’t lie, it sucks not having the money sometimes, and we have had to be very mindful of how we manage our finances. And, what I am gaining by not overdoing it and not pushing myself past my limits is irreplaceable. My health is better when I have realistic expectations of myself. I am a more attentive and more patient mother and spouse when I am taking care of myself. And the quality of my work does not become impaired when I continue to prioritize my wellness. I may not get as much done, but there is also a lot to be said for the quantity vs quality argument.
Are you able to delegate any of your work? Is there anyone who can help you with certain tasks? If decreasing your workload at work is not an option, is there a way that you can decrease your workload at home? Can a friend or family member mow your lawn? Help you batch cook? Help you with cleaning? Pick up groceries? Can someone take your kids off your hands for a few hours?
5. Meeting basic needs.
“Eat healthy.” “Get enough sleep.” We hear this kind of advice so often, it’s almost cliché. But it really matters. I got very little sleep 2 years ago. While this is harmful all on it’s own, that also means that I was pounding the coffee – leading to dehydration and stimulant-induced worsening of anxiety, irritability, and sensory overload. I also ate a LOT of deep fried food 2 years ago. While I am still an emotional eater who is very drawn to pizza, nachos, ice cream and the like (born and raised in Wisconsin, anyone?) I am also doing a much better job of having fresh fruit, veggies, water, and the like this time around. My non-anxious energy is so much higher now, which really helps me to make the most of the decreased work time that I am allotting myself. I also schedule lunch in my planner every day, so that I don’t forget to eat. Not allowing my blood sugar to crash mid-day helps to keep my mood, focus, and stamina all more stable.
If it’s challenging for you to change things like eating and sleeping habits on your own, is there a supportive person in your life that can help to hold you accountable? Similar to how some people adopt “exercise buddies” or similar to my friend who periodically checks on my water intake, this is an area that you can realistically obtain help with.
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Can you relate to my story? Which parts stand out to you? I’m guessing that I am far from the only person to struggle with these things or who has had to learn these lessons the hard way. I’d love to hear from you!
Sending love! Be well.
❤ Rachel
Embers Revitalized, LLC 
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