cope
1 verb1. to struggle or deal, especially on fairly even terms or with some degree of success
2. to face and deal with responsibilities, problems, or difficulties, especially successfully or in a calm or adequate manner
Someone recently told me that they are having a hard time coping with all that their child has been going through and asked how I cope with our journey. So I thought, great blog idea. Easier said than done, let me tell ya. I've tried for weeks to sit down and write this. But coping...it is truly a personal topic for me. Do I really want to share that much of myself? Do people really care?
But here I am. And although I'm probably going to hold back a little, my hope is that by sharing what I do, others can somehow take from that. Even if it is to say that she copes all wrong and I don't want to be like her :). Because in the end, when you have a child with special needs, you're going to need to cope. A lot.
In my world, there is coping on two different levels: acute coping (in the moment during surgery scheduling, surgeries, hospital stays, etc.) and chronic coping (the everyday worries and issues related to Kennedy's journey). I used to think that the acute coping was the worst, how could it get any worse. But the more we journey on, the more I think that the chronic coping is what's going to stress me to death.
We all cope. I mean, what's the alternative? But what I've learned, even within just my own household, is that we all cope differently. I usually keep everything inside, letting it build up, till the tears start flowing and I can't hold them any longer. One of my best friends recently posted that she does her best thinking in the shower. Well, I do my best crying in the shower. And I'll admit, I do it on a regular basis. I think it goes back to several posts ago with the picture saying that we cry because we've been strong for too long. I am strong every damn day in this journey of Kennedy's. But my strength can only take ME so far. And unless I refuel, I can't continue to be strong for her. So I take a shower, and I cry. And cry. And cry some more. Then I find the silver lining in the current situation and I journey on. Just remember...don't be afraid to cry.
And then I read. A lot. My husband often compares my reading to his iPhone addiction. I've been made fun of because I prefer murders or other fictional mysteries instead of non-fiction or reality books. But here's the thing: I read to lose myself in the book. I face reality everyday, I need something else to help escape it. If I'm rooting for the victim to outrun the serial killer, then I'm not thinking about the surgery appointment I need to schedule for Kennedy. Find something to lose yourself in, even for short periods of time.
My faith has surely changed since Kennedy was born and continues to change as we continue on this journey. I'm a very firm believer that what I choose to believe or not to believe is my personal choice to make and I won't share. But the constant of my faith has always been praying to Kennedy's guardian angels. Her angels have certainly pulled her through some pretty rough patches and I strongly believe that my grandmother was leading the way. In fact, Kennedy once said that she knows that Nonny is her guardian angel...because she saw her in the OR. Kennedy is surrounded by people she loves here on earth, and I know that her guardian angels are always watching over her. That makes coping just a little bit easier. Find faith in something, anything, so that you can draw upon it when you need it.
This blog has been cathartic for me, no matter how tough reliving some of this journey has been. To step back and think it through, to share with others, to learn that something I've said has touched or inspired someone...it really does warm my heart and helps me know I'm doing the right thing. Even if it helps only one person, I've made a difference to someone. Share your story, people really do care and they can take something away from it to help them in their own lives.
To deal with chronic coping, I've learned that whenever I have a chance, I need to get out and go. I've heard all the comments about how many trips and vacations we take, how can we afford it, we're spoiling our kids, etc. First of all, I've watched my child die (and thankfully brought back to life) and I know how precious life is. It can be taken away at any time so make memories when I can. Second, and probably more important, is that when you deal with everyday stress (hearing issues, speech issues, severe chronic constipation, chronic sinus issues, and on and on), you never get a break from it unless you make a break from it. And that folks, is why you'll always find me planning our next trip. I need it, Kennedy needs it, we all need it. Find a happy place, no matter where or what it is, and go there as often as possible.
One of the hardest things that I've learned in exploring coping mechanisms is that I have to be ready and willing to call on friends and family. This is where you learn who your true friends are. Because they will do anything for you and do it without expecting anything in return (of course, I try to pay people back as much as I can but there are some things that I honestly will never be able to pay back -- that's how awesome my friends and family are). It isn't easy for me to rely on others but I need them if I'm going to cope. If I'm going to get through something, I know I can't do it by myself. I need to be surrounded by those who love me. Surround yourself with positive people you love and who love you, build an awesome support system.
What I've realized in the last few years is that above all else, I have to take care of myself. I've realized that stress and constant coping can kill you if you aren't careful. It seems that I keep adding to my arsenal of prescriptions and all ailments can be triggered or made worse by stress. The first time I met with my cardiologist he told me I needed to remove the stress from my life and I asked if he was in the market to adopt a 7 year old child. He told me that my answer was the reason he no longer says that to his patients (see, I made another difference in someone's life! :) We all have stress, no matter what it is. Between the chronic and acute coping in my life over the past 10 years, my health has taken a beating. Luckily, I realized this before it was too late. But probably lost some ground in putting myself last for so long. Take care of yourself first...who will take care of your special needs child (or whatever you are coping with) if you aren't around?
And most importantly, I draw strength from Kennedy. Katie is the light in my world and Kennedy is my strength. For those who know her, have you ever met a stronger person? To cope, look to the one or the thing that is making coping necessary. Chances are, that's where you'll find your strength. Its where I find mine.
Refer back to definition of coping above...the key word in the definition is "success." We all cope, it's just something ya gotta do. And we all cope differently, whatever works for you. But coping successfully takes patience, love, support, strength, and faith. I don't know that I always cope in the right way, but I continue to survive. So I must be doing something right.
(NEXT BLOG: Here we go again...)
