I Have PTSD as a Result of Parenting a Medically Fragile Child

I find myself thinking a lot about time and how quickly it passes. I am noticing it in the face of both my kids — they no longer look like a little boy and little girl — they are becoming  young people too quickly. I find myself feeling guilty and angry for the years robbed of their childhood and our time together because one of them is sick.

• What is PTSD?

I have no idea how to make up for lost time and it eats at me, lingers just on the surface of everything I do. The damage that can be caused to the parent/child relationship when you are trying to care for your sick child is powerful. I do not know how to be sure neither one of my kids is not being damaged, lost or creating an unfixable breakdown within our relationship.

It is difficult to find the balance when caring for your sick child and your other child. How do you decide whose needs should come first? How do you hear the cries of both and choose which door to open?

During this battle of how to provide for the needs of both of my children, there is another battle I fight. I am finding PTSD is becoming more real for me. I am not sure if anyone around me can really understand what it feels like; the physical toll it is taking the way your body automatically reacts and the loss of control when this happens. This is what I have been left with as the past nine years catch up with me. It hit fast and hard this last year. Every time I have to go to an appointment, whether new or just a follow up, the feeling that follows and develops slowly as time ticks by is like someone is draining every ounce of fight and energy out of me. A huge sense of dread takes over and I have to swallow hard, bite down on my cheek and push it farther down, which gets harder each time. I am finding that all I want to do is say “enough” and just lay down. I am done and do not want to do this anymore.

I am tired of having to hold my daughter down for treatments. I am tired of the new complications that pop up. I am finding it harder to ignore her cries and pleas to “make them stop,” promising she will be good if I will just stop them.

Then there’s the medical field… they try to make it as easy as possible, but at times make it so much harder. They like to look at me as if I am not trying hard enough, give me that disappointed look if I haven’t done what they asked, as if on purpose, or tell me to just “do it this way” or “try this.” I usually want to scream at the top of my lungs at them and offer for them to spend a week in my life and then tell me how to do it all. They do not know or forget how many different doctors we see, the planning and experiences we have endured.

I do not think they fully understand the trauma inflicted on you as a parent of a sick child.

There are also those times when they are trying to help by being gentle, talking to my child about what comes next, asking permission and sometimes they talk too much. These approaches are with the best intentions, but they make things worse for me and this is when the PTSD comes back hard. I have to be the “mean one,” the strong one the one that seems heartless as I hold my daughter down and tell them to just get it done. During all this, the battle that I am fighting at the same time in my chest, head and throat, doing everything I can to fight back the tears, to not scream at them all to stop, is raging on top of me having to do my job as her mom.

When it is all done, and till the next time, I am back home dealing with all I missed here. Coming back feeling defeated, tired and angry.

This is where the cycle starts all over. I try to be present, available and calm, but eventually the things I am pushing down are just lingering under the surface and I overreact to the smallest thing. I react before allowing anyone a chance to explain. I forget my son, who is wise beyond his years, is still just a 11-year-old boy, I forget he is still a child himself, and then he reminds me how great he is by just knowing what I need, by helping out without being asked and by forgiving me every single time because he understands way more than most grown-ups.

I forget my daughter didn’t ask for this life. I forget she isn’t trying to be difficult, she is just tired of being hurt, tired of not having her voice heard and just tired in general.

My nights are usually spent worrying about the damage that has been done and the damage that may still come. Relieving the trauma of the days, weeks, months, years. Questions pop up: Have I changed the course of his path? Will he be resentful? Will I make a bad decision medically for her? Should I have stopped this or that? I fear the PTSD will win one of these times as it is trickling in to all parts of life.

The shining light in my battle is that I have an unbreakable support system that allows me a breath, that provides balance, a safety net and so many more things I didn’t know I needed. This is one part that has kept the cracks from breaking fully, but another part is allowing myself to be open and honest.

I recently said to a doctor during a very traumatic and difficult hospital admission, “I am finding it harder to handle the trauma of the past nine years.” I told her I needed her to understand this, I wanted her to know I wasn’t trying to be difficult and I get the importance of the medical treatment  they were recommending and fully planned to follow it, but I need a minute, and I needed her to meet me halfway. This is very hard for me to do. I do not like to talk about feelings, but the power of PTSD during this hospital stay was scary, and literally strangling me.

My Advice:

It so important to talk about your emotions and PTSD to someone, because the damage that can be done is unpredictable and detrimental, much more than we realize. I feel I was coming close. Do not allow yourself to get to a point where you feel there is no return.

I believe the battle can always be won, we just need to ask for help, accept help and be open and honest with those around us. It won’t happen overnight and it is a lot of work, but so worth it in the end. When you can take back the power, it is a game changer.