I can't imagine the pain you are going through

“I can’t imagine the pain you are going through.”

I’ve always wanted to respond to this comment by others when they try to express their concern or admiration.

Really? You don’t say? It’s not that hard to imagine! Let’s give your child some brain damage so you have a clearer idea. I could be really sarcastic in my thoughts.

There are several poetic ways to describe the pain, but nothing really hits the nail. Let’s try to compare it closer to reality…

It’s not a pleasant comparison and it might not even be a fair one at that. But here it goes:

You mourn the death of a loved one. During the first few days it comes as a shock, sometimes you can be numb. It hasn’t sunk in yet. At the wake you are too busy attending to guests. After the funeral, you start feeling the loss because your loved one is no longer there with you. You wish for what could have been just normal, fun, happy and even sad times together as long as you are together. But it is all gone and that is certain and clear. After sometime, you are able to get on with life with some sadness in your heart, and you find other joys. It will depend on you how well you can cope with the loss and how long you stay at certain emotional states.

Gather up all that experience and give yourself a dose of it everyday, every hour, every minute and every second at varying quantities and intensities. Over and over again with a little bit of madness and uncertainty on the side. There, that’s the closest description I can get.

I mourn the death of a normal life for my child. The news, no matter how it is said, came as a shock. Sometimes I am numb. Sometimes it doesn’t sink into my head that she will forever be different because sometimes I dare to hope. I am too busy attending to her special needs that I forget her being. I feel the loss because I cannot communicate in normal ways to my child and she can be frustrated trying to communicate with me. I wish we can be together but sometimes even if she is with me, her mind is not and she is in her own world that I cannot enter no matter how hard I try to reach her. It is certain and clear that normalcy is gone, but it drives me to madness seeing slivers of hope whenever she reaches a milestone we were not expecting. Then it crumbles again when I lose her to seizures or imbalances in the brain, in the intestinal track or wherever it is that simply takes her away from me while I hold her. Or when she does a simple task so well and yet the next day she cannot do it again. Some days I can go through the day okay, some with sadness and some with immense joy. I jump from one emotional state to another, swinging like a wild pendulum going in all directions – including imploding within myself. Things will never be okay, and I’ll have to be okay with that.

So if you have mourned the death of a loved one, you might get an idea. However, it is also not a fair comparison. Because we still have precious time with our child with special needs – no matter what kind of time it is.

I once had an enlightening experience when I was arguing with a government employee about releasing some things from customs that was needed for the therapy of my child. She was giving me a difficult time. We were just arguing over the phone. Frustrated and angry, I said that she will never understand what my family is going through and that she is just adding to our burdens. She came back with tears in her voice saying, “buti ka pa, nandiyan pa anak mo kasama mo. Nawala ko ang aking anak sa leukemia at 19 years old siya nung namatay.” She hit me hard. Our line got cut. A few minutes later, when I got signal again I phoned her and was much calmer. She was much calmer too. We both apologized to each other, opened up our grief, became rather vulnerable and cried to each other. She said it was better I come to her office and explain in person. It never occurred to me that she was having a bad day; that she just needed further explanation to understand she really did not have to charge me any additional fees. It was good too that our lines got cut and allowed both of us some silence from each other. I had reflected on that experience and thanked God. Her promise to me was that she would pray for me and my daughter. I promised her that I would pray for her too. It ended well because weeks later, when I went to her office, I got the items without any additional fees. I have yet to meet her since she wasn’t at her office then. We went through and are going through different pains, but we understand each other. We can never completely imagine what it is like unless we go through it. So when someone tells me that she can’t imagine having a child with special needs, I have to stop myself from saying, “yes, you can’t unless you have one yourself.”

If you ask me though, I would rather go through the wild pendulum of emotions partially dying and getting up everyday rather than have one big gulp of the wreck brought by death. I want my daughter to be in my life. I love her for who she is. Ironically, I did not ask for a child with special needs, but now that I have her, I wouldn’t have her any other way. It is hard to explain and it is even harder to live.

Yes, you can’t imagine the terrible pain we go through. And you also can’t imagine the profound joy we have.