I have read, and read, articles about Post Traumatic Stress Disorder (PTSD) in parents/caregivers of medically complex children.
I have never liked identifying with PTSD, for many reasons. One being the “post” part of it.
Truth be told, there is no real post trauma; there is a post, current and pre of trauma, all coexisting in our daily life.
I tend to not be very forthcoming with how difficult things have been for 12 years with Brayden. For one, I do not want pity or to make others uncomfortable when we talk about Brayden. I also have no need or desire to dwell on the bad because we still have him with us; we have things do today; we have two other children to keep us going with “normal” activities; we have jobs to do; and we still like to and want to have fun (which is why Jeremy and I learned to find humor in just about anything).
But the trauma that has happened…
- First the non-diagnosis, then an overload of brain malformation information uncovered, but never any diagnosis.
- Putting your baby through more tests, scans and blood work, than I can even remember.
- Being told your child, will not be able to do much of anything. No walking, no talking, not even able to see.
- Seizures, years and years of seizures. Seizures started as a newborn. Seizures that could last 9+ hours, breathing trouble, clusters, heavy medications that can cause more breathing troubles, ER, transports from local hospital to major hospital.
- Not being able to eat. The trauma of having a child who cannot drink or eat on their own. The frantic state of trying and trying, and finally surrendering to the surgery for a feeding tube. Multiple attempts with feeding tube, to a G-J tube and then to a g-tube and a j-tube.
- The feeding tube pops out, the first few times this comes out…holy moly panic. There is a giant hole in his body.
- Vomiting the uncontrollable vomiting/retching. Bloody vomit, vomit all over him, his bed, the car. Sometimes bloody, sometimes burning his skin so badly that we had to use burn cream.
- Having an ileostomy. He cannot even poop on his own. He poops in to a bag. Part of his small intestine is outside his body. (and for a little humor, the smell of that poop is trauma)
- Broken bones, busted tubes, infections, etc.
- Emergency room visits.
- The procedures or surgeries, oh the surgeries. Nothing simple or easy.
- The recovery from surgeries, often harder on him than the actual surgery.
- Jeremy calling me from the hospital to come quickly, since Brayden was not doing well. Or me calling Jeremy to tell him the same.
- Hospital stays, need I say more.
- Having to make major medical/life changing decisions, over and over. Or the decision to not do anything.
- Seeing your child hooked up to more things than you even knew could be possible.
- Machines to keep your child going and then brought into our home. Suction, oxygen, pulse ox, feeding pump, Bipap, etc.
- Seeing your child in pain or unresponsive. That is torture.
- Children dying. Friends that you have walked this medically complex journey with, losing their child.
- Having a hospice team show up in hospital room, when you did not request.
- Having those first hospice meetings and paperwork. Deciding how you want to your child to die, if/when you have to make those decisions.
- Talking to our other boys about Brayden's health and the seriousness of it.
- Being unable to help your child. TORTURE.
And this is just the list off of the top of my head.
Then the trauma in even the little day to day things.
- DNR sign in your child’s room. A daily reminder.
- Fighting with insurance companies. This exhausting. I have screamed and cried over insurance phone calls too many times. And it is only getting harder every year. How do I prove my child is worth it?!
- Actually having a conversation with our insurance company, they basically ask how close Brayden was to dying…I snap and tell them to never ask that question because they were in the process of approving his services.
- Fighting for medication or equipment. I cannot even begin to explain the insane process and battle that happens with our primary insurance and then to his secondary insurance. It is frustrating and the process seems to constantly change.
- The feeding pump beeps, then beeps and then beeps again. Troubleshooting that thing.
- Getting the mail. I get anxiety even just getting the mail. Bills that insurance messed up, denial of services, more paperwork, etc. I make a pile and try to deal with it all once a month.
- The paperwork and meetings. We have paperwork and meetings for: waiver, county, agency, nursing agency, hospice, insurance, secondary insurance, school, IEPs, etc.
- Daily hospice phone calls. The calls itself are brief and easy. But we get hospice phone calls every day. And home visits, for over a year now.
- Finding help for Brayden. We live in fear of losing a nurse, finding a nurse, losing respite, finding respite.
- Trusting someone to be in our home, take care of our child AND all of his complex medical needs.
- Trying to even leave the house with Brayden.
- Making sure home or leaving home is accessible for wheelchair and his needs.
- Going on vacation…ha, that is a special kind of stress.
- Not knowing what I will find each morning. I cannot explain where my head is, each and every morning. Will I walk in to find him in a seizure, covered in vomit, not breathing, tubing wrapped up, things leaking, unresponsive, temperature is 90 degrees?? I have seen it all.
- The basics of me even taking a shower. Someone else needs to be home. Or Brayden must have on his BiPap when I hop into the shower. When he was little, I would bring a bouncy seat in to the bathroom. I am paranoid.
- Brayden going to school. All the work to make that happen. The first few years, I followed the bus many times. I sat at a nearby coffee shop, just to be close to the school.
- The green bag that goes everywhere Brayden goes. The medical bag has all of the “just in case” items. Seizure rescue med, ambu bag, extra tubes, etc. Also carrying around an oxygen tank, where he goes. Because we have had to use those items.
- A daily, constant demise of Brayden’s health. A very slow demise with each year that passes.
- Our family is constantly split. One of us with Brayden, the others out or Brayden at home with nurse. There are very few things we have done all together.
- Living in a constant state of waiting for the other shoe to drop. Because it does drop. All. The. Time.
Here's the thing, we have been doing this for so long, we almost don't know what is would be like to not have this level of constant stress. It is in our face, every moment of the day and night. But we still have Brayden. Today is he content and comfortable. We have Carter and Luke to keep us busy with other things. Jeremy and I have each other. And most importantly, we have our faith.