In my world of uncertainty, I like to have things defined and in a box as it makes me feel less helpless, more in control and gives me something predictable. It comes as no surprise then, that I find the progression, or perhaps more accurately, the unfolding, of our daughter’s issues to be perplexing, destabilizing and downright confusing. No matter how much I tell myself and counsel others that, the only thing constant in life is change; that change is good; and change often suggests progress, I still go through PTSD when it happens. I become unraveled, I panic, and I assess and reassess her supplements and comb through my library of books in search of answers.
I wish that I could move away from this autonomic traumatic response, but I suspect that no matter how much I prepare myself for the changes or tell myself that elements of her condition aren’t going to remain static, I will still have this reaction with every stage of development my daughter goes through. Because even though I may intellectually understand her disability and understand how difficult it can be to have a child with a disability, there is still a difference between “knowing” and “seeing” and it’s a big reality check when I see the effects of challenges which have been made manifest. And when I see this happen and witness the toll it takes on her, I find it even more difficult to separate her issues from mine and the waters become even murkier. I’ve been through enough psychotherapy sessions in my 45+ years to understand that “what’s yours is yours and what’s mine is mine” but her struggles bring putting this lesson into practice to a whole new level.
So then, what are my pearls of wisdom? I’m not sure I have any because if I did, I think I wouldn’t go through this every time. However, there are a few things that can help ease the burden:
- Having a support system in place is vital and I’m not just talking about immediate family. I think it’s important to have people who are not related to the situation because they can offer another viewpoint not seen by those immersed in the drama.
- I think it’s important to take time for you. In fact, it’s not an option it’s a requirement. The caregiver MUST find a way to take time for him/herself, to step away both physically and emotionally from the situation and find balance.
- Sometimes we just have to feel what we feel. Having a child with challenges is just plain sad, difficult and frustrating and I don’t know about you but, some days I’m just not going to be the happy person people want me to be. I’m just going to be me going through the crap that is my life and if you truly love me, you’ll accept me for that. You’ll give me a hug, tell me you love me and then give me space.