Sometimes you can’t live in the moment. What if it’s an especially traumatic and challenging moment?
How do you recover from stressful events? How do you navigate them whilst they are happening?
Yesterday Amy was in pain with some acute skin problems. The result of this was that she was emotionally and physically distressed.
When she is distressed she rips at her hair, she pinches and kicks those around her.
She is impossible to console in those moments. All you can do is remain calm, and patient, and try your best to prevent injury.
Thankfully these moments happen less than they used to, but at the time I can feel my stress levels going up and up.
My jaw tightens and clenches, my muscles tense, and my heart rate increases.
In that moment all you can do is keep breathing, and remind yourself - this is how she communicates pain, this moment will pass.
Recently, Amy has had a few ambulances due to respiratory issues.
In those moments she is blue, struggling to breathe, retching, and looking lifeless. Adrenaline kicks in and I reposition her, check her obs, suction her, reassure her, and explain what I am doing.
I call for the ambulance. My chest is tight, my legs are weak. Outside I am calm. Internally I am a mess. Just get through this moment. The paramedics will be here soon, she will be fine, and we will all be fine.
In the ambulance my back twinges as I struggle to reposition my panicking child.
She is on oxygen and awake now, but highly distressed. Staff keep telling me to keep her upright, and I explain again that this isn’t possible with Amy.
The blue lights now are on to get us there faster. We’ll be there soon, this is temporary, this is about her, not me.
Continue to try and comfort her and stop her from injuring herself.
In the hospital I remain calm as I explain what has happened for the third, maybe fourth time.
I reel off her list of medications again, for the third, maybe fourth time. This is the process - don’t fight it. Just be patient and explain it. You’ll be home before you know it, hopefully.
Fast Forward a week.
Things are now much better health-wise. Life-threatening problems are now replaced with usual mundane daily problems like replacing faulty medical equipment, chasing meds from the hospital, and finding space to store tube feeding supplies.
We are on a nice family day out. The Autumn air is fresh, the sun is shining, Amy is in a good mood.
Immediately we are faced with “what’s wrong with her? Why is she in that chair?”.
I am grateful people ask - it’s better than staring, or ignoring. But my heart sinks a little. Why do we need to stand out? Why can’t we just have a friendly interaction that isn’t centered around Amy’s disability?
Inwardly I yearn to just be normal, to be boring even. What a novelty boring or normal is. I breathe through it and put on my friendly happy voice and explain once again that cerebral palsy is how the brain controls muscles and so on.
I make a call to chase some meds. I pray internally that the receptionist speaks kindly to me.
I sense the frustration in her voice as this is the third time I have called in a week. I remind myself to breathe and stay calm.
Don’t lose credibility and cry. “Why can’t you go to the GP for these meds?” I answer for the third time in a week.
I fight the urge to be sarcastic or emotional and explain that these meds are hospital only. I try to make polite small talk.
It goes ignored. I tell myself - maybe she’s having a really bad day or is extremely busy - don’t take it personally, don’t let it affect your day.
In just writing this I feel myself tighten up and feel angry.
Sometimes it doesn’t feel fair to have to internalize so much sadness and frustration.
For now, in this quiet moment, I can process it all. I can take some time to enjoy a hot coffee, knowing we are home and that all is well.
I can enjoy that my phone isn’t ringing, all of my loved ones are safe and well, and I can be proud that we all made it through.
Sometimes you can’t live in the moment. Sometimes you have to endure the moment knowing that better moments are to follow.
Sometimes those moments you endured will catch up with you and eat away at you.
What do you do to deal with this?
Personally, I have anxiety medication, and counseling, and try in my spare time to get on walks and to the gym.
Exercising definitely impacts your mental health. It can lower your stress hormones and help you release feel good chemicals.
Some days I’m too fed up and exhausted for that - and that’s okay too. You have to listen to your body, and when time permits - give yourself chance to heal.
It sounds cheesy but self care really is so important. It's harder to get in our lives as it can be so unpredictable. But any moment you can, try and do something for yourself and really savour and appreciate that moment.
If you are struggling - please go and see your GP. Talk to someone. Don't just wallow and suffer.
Life is challenging for everyone, but when you have a child with complex health it is a constant concern over their health, and navigating the often difficult system that surrounds them.