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.

Viral infection, UTI or Dengue?

Toni has a had a fever since Wednesday night and we've been monitoring it since then. It spiked up to 39.6 Celsius at one point. Last night it stayed at 39.4 for quite a while and she kept crying and crying and I couldn't comfort her. I had a meltdown and cried. I felt so helpless! Every time I hugged her, I felt her skin burning and I just wanted to absorb all the heat. When your child is sick, you just can't bear it really. I wished it was me instead. After cries of discomfort and pain (I can just imagine the headache), she was whimpering. She lacks a lot of sleep. I lack sleep and she lacks more sleep because she needs much more than I do.

Doctor says it could be viral, U.T.I. or Dengue. I don't know which I prefer. I can't seem to collect enough urine for the lab test. When hubby fought with Dengue, I was scared too. Blood transfusion was an option, but he won the battle without going through it with a lot of yucky tasting kamote tops juice and Taua-Taua capsules

Kamote Top Juice Recipe for Dengue:
Boil a handful Kamote tops (the one with purple tints otherwise known as murado talbos ng kamote) in 4 glasses of water for 2-3 minutes. Let cool. Set aside leaves and serve as vegetable side dish. In one glass of the juice, squeeze in one Calamansi juice. Color of juice will change to blood red (Colorcode of foods meant for which part of our body). Add a pinch of rock salt. Drink at least 4 glasses a day. In 48 hours, blood chemistry including platelet should normalize. We did this for hubby last year and it worked wonders.

We also gave him 2 Taua-Taua capsules from Carica and 1 tablespoon of Dr. Gerry's Coco Nectar per day.

For Toni: We've been giving homeopathic remedies (pulsatilla, hypericum, belladonna to name a few) together with Tempra, lots of milk and sips of kamote tops juice in case it's dengue. Keep her hydrated is all we can do. Wiping her sweat and keeping her dry too. We got Talisay leaves wrapped around her which is said to suck out the heat from your body during fevers. We need to keep her fever down. Ironically, fever is a sign that her body is fighting an infection.

Anya, in the meantime seems fine. I haven't hugged her the whole day in case I am carrying the virus now. I've instructed Haidy to give her Sweet Echinacea 3x today and a teaspoon of Coco Nectar to strengthen her immune system for whatever might come her way.

What I haven't been doing is praying. When Anya was sick, I remember I prayed intensely and asked for Mama Mary's help. Now my mind is blank. Oh help me, Lord! Help my children get better soon. Tell me what to do.

....

September 26, 2011. It was Herpangina. Not a very pretty name and not a pretty site. Toni had rashes all over her face today. Hopefully it will go away soon. I just have to keep Anya and Toni apart for the next few days. Can Anya's immune system handle this if she gets it? Better not risk it!

T's tooth coming out

September 3, 2011

Today I saw a bit of T's tooth coming out. It's a cute white line that is very faint. I couldn't resist touching it so I sterilized my hands and fingers and let her bite me. Ooooh! Felt it! It's coming out all right!