If you have read any of my previous posts, you have probably realized that 2021 was not a good year for us. C-Bear turned 18 in February and by March 1, we were in an ambulance on the way to the hospital. When you spend a lot of time in the hospital with your child, you have to learn how to survive when in crisis mode.
We spent 5 weeks in the hospital, went home for 2 weeks, went back to the hospital for a week, went home for 3 weeks, went back to the hospital for 4 days then home for about a month, and then spent the month of July back in the hospital.
C-Bear had to have emergency surgery for a bowel obstruction that lasted about 5 hours. 15 days later, he had emergency surgery to get a tracheostomy because he wasn’t able to maintain his oxygen levels without a ventilator.
Being in the hospital, in ICU, with a kid that is having respiratory issues, surrounded on both sides by people with COVID, even sharing nurses with them, was a scary thing! Being in a hospital that wasn’t used to dealing with someone of my son’s medical complexity, was scary! Knowing that I had to trust my son’s life to this unknown team of doctors and nurses, was a very scary thing!
But what was even scarier, was being sent home, untrained, with our son who was now oxygen and ventilator dependent. We had no idea what to do, or how to do it and no one seemed to want to help us out. We were learning to survive when in crisis.
Thank goodness for the 2 caregivers that we had had for years! Without them, I don’t know where we would have been! With the ventilator, my son was now eligible for close to 24/7 care so while trying to take of him, I was also frantically recruiting support workers to join our team to give the rest of us a bit of a break.
During this time, I was a literal zombie. There were 3 of us caring for Cody and when we brought him home, almost everything was a 2-person job, and since I was the one that lived with C-Bear, I was always the 2nd person, around the clock as well as having my own shift.
I was running on fumes and in such a state of hypervigilance, that there was room for nothing else in my life. The stress and toll that this was taking on me, physically, emotionally, and mentally were crazy. Then July happened…
In July, we once again had to rush C-Bear to the hospital by ambulance because he turned blue and couldn’t breathe. He was ok on his initial intake but when we ended up in a room, they had to call the rapid response team and bag him 3 times while all I could do was watch helplessly from the hallway outside his door.
I was trying to ignore that little voice deep down inside that was asking if this was it, was this when we were going to have to say our goodbyes?
Thankfully, they got him stabilized. In the course of all of this, they realized that the issue was that his trach had become positional and he needed a different style. The team was great, they took care of my son when he needed it most. But me? I had to take care of me…somehow.
Dealing with the aftermath of surviving when in crisis
Since C-Bear is non-verbal I can’t be 100% sure but I firmly believe that we both came home with PTSD (if we didn’t already have it!) after that trip.
A year later, I still feel that I am being held together with bubblegum and duct tape but I am starting to be a functional adult again. If/when he has to be hospitalized again, I have no idea how I am going to handle it, I may just be a pile of goo on the floor.
But now that I have some distance from the traumatic events of last year, here are some things I learned.
I need to have a plan in place for ME.
I need to have some coping skills in place that I can fall back on so I can remain functional in case of any emergency. C-Bear needs me to be able to communicate with doctors and nurses. After all, I am his walking, talking medical record.
Some things that I have in place or want to get in place are:
- Breathing exercises
- Meditation exercises (I have done this a little with Insight Timer)
- Meditation music (I like Insight Timer’s music selection)
- Make sure I have all my meds with me
- Make sure that I have snacks and drinks packed in my emergency bag. I don’t like to eat when stressed and as a diabetic, that’s not good
- Pack a comfort item. For me, it’s a certain blanket I got for Christmas one year
- Find a mental health provider to help with some of those coping skills I need.
- Medication for anxiety (I have a prescription for Xanax that I carry in my emergency bag)
- Make sure I am sharing the load with my husband
Some of these items seem like DUH! But when I am in crisis mode, the last thing I want to do is eat or drink or take meds or do anything other than be there for my son.
I have been researching breathing exercises that are supposed to help when you are in crisis but I have a feeling that I will completely forget them in the moment. I think I would like to put a note in my phone or maybe make a small laminated card that I could carry with me.
I have been toying with the idea of creating a series of affirmation cards for chaotic moments. I know affirmation cards are all the rage right now but I am going to have to get used to that idea. It seems a little too New Age for me. Might work though.
I know there are several different meditation apps out there but this was the one that I liked best. I listen to their binaural music every night when I go to bed and love it! Their meditations I have tried, but have a hard time being consistent with it. It’s one of those things that I know I should do but in this house, trying to find the time and space to meditate is really hard.
Mental health provider:
This is a hard one for me. I worked with a counselor for a while but it was not a good fit and really accomplished nothing. Reaching out for help in this field is really hard for me. I have a hard time asking for help period! To me, It seems that mental health providers help a lot of houseless people, people with addiction problems, and those who are or might be suicidal but there really doesn’t seem to be a provider out there that parents of children with complex medical needs who are suffering from guilt and PTSD.
I need to force myself to make that call. The phone number is written down but I always have an excuse to not do it. I really have to do it because I have a feeling that I am going to need more than bubblegum and duct tape before long and I can’t through sane, what I went through last year.
I now have this all packed and ready to go complete with diabetic-friendly snacks, medications, and activities to distract me.
Sharing the load:
In the past, I shielded my husband from a lot of the nitty-gritty details of our son’s diagnoses, hospitalizations, and/or surgeries. Probably out of guilt of giving him a son that would not be able to do all those things that Dads want to do with their sons.
My mom used to be my sounding board until she lost her battle with cancer in 2017. When we ended up in the hospital in 2021, while it wasn’t my hospital of choice one huge plus it has over our normal hospital is that it is only 45 minutes from home instead of 2 hours.
This meant that my husband was able to come to visit us every other day instead of maybe once a week. I made a vow to myself last year to share everything with him, good, bad, and otherwise.
To survive when in crisis:
One of the big things that both C-Bear and myself still suffer from the after-effects of is loss of physical strength. At least he had a good excuse but I really didn’t. If I wasn’t sitting in his hospital room or his bedroom at home, I was sitting in front of my laptop working (the really nice job that lets me take months off of work or work from hospital rooms) or just vegging on my iPad.
I did nothing at home that did not have to do with taking care of our oldest or schooling our youngest. I didn’t cook, I turned over taking care of our barn animals to our youngest, my husband cooked, shopped, picked up meds, and took care of his parents. At that time, I just didn’t have it in me to do anything more than what was needed to take care of C-Bear.
Even a year after the events, I am still not at my ‘baseline’. Occasionally, I will cook. I have been working in my greenhouse, I started 3 side-hustles, I have been cleaning up and rearranging our living room, and trying to work out at least once a week.
What did I learn from all of this?
That I am not invincible. That I am not the pillar of strength that I thought I was. I need support, sometimes just as much as C-Bear does. I learned that I need to give myself grace and permission to do nothing this day if I have nothing to give. Admitting that I need to put aside the outdated stigma of reaching out for mental health support and ask for help in dealing with my trauma, PTSD, anxiety, and depression resulting from everything that happened in 2021 and the years before.
So while I am learning to deal with my new reality, I hope and pray that you are not in the same boat as me. Or if you are, that you have progressed beyond where I am. If you have, leave me some of your tips for how to survive when in crisis. I need all the help that I can get because there are already rumblings of more surgeries for C-Bear on the horizon.