My point of view has changed

I look at other parents at school, and I feel so distant. I see how they laugh, how excited they are about something, how they seem to have direction and purpose.

And I envy them.

I want to go back to who I was. Who I was 1 year ago. The person and mom I was. The optimistic, care-free, happy, easy-going person who didn't feel this constant sadness, anger, resentment and worry inside. Who choke up when Tears in Heaven comes up. Who can't listen to Butterfly Kisses or look at a normal 5-year old little boy running around like he has all the energy in the world.

I'm jealous. I'm insanely, unstoppable jealous. I resent every thing that has turned our lives upside down. I resent innocent bystanders that isn't involve in our story at all. I resent people laughing and going on with life like normal. I resent people. I resent them for not suffering like us. I resent them for their carefree lives. I resent them for their freedom from worries.

I know. Everyone hurts. Everyone worries. Everyone has things that makes them unhappy, sad, worried, resentful. But believe me, the type of worry takes on a WHOLE different meaning, when you have a child that's this ill. That has this sword hanging over him. You look at other, healthy children, and you get this overwhelming sadness. Wishing that for your child, your family. For you.

It's not that I expect the world to come to a standstill. It doesn't even for things much, much worse than what we're going through. I also don't expect people that has had a difficult day, a child with the flu, someone going through divorce or moving house, to not stress or think they have no right to worry or stress or having a difficult time. Everyone has the right. Everyone lives through difficult times. Everyone worries. Everyone has stress. Everyone has the right to cry and scream and be angry.

So allow me to now cry and scream and be angry. And feel like my life is falling apart. And that other people's lives look so much better, so much easier, than mine. I know, there's always someone worse off. Always someone that wish they were rather me instead. But for now, I just want to be angry that our lives isn't that easy anymore. Quite the opposite.

I'm so tired of constant worry. Of living under unbearable stress. Of tears that sits just underneath the surface. Of not being able to even talk normally to people. Of lying awake late at night when it's quiet. Wondering what the new day will bring.

I'm tired of people asking "How are you?" when they're not really ready for the answer. If I rant and rave, cry and scream, what will they say? What will they do? People tell me "I don't know how you do it." You know what? Me neither. So can I scream now? Can I cry? Will you think: "Oh, that's more like it! That's more normal!" and slap me on the back in joviality? Or would you be uncomfortable, not knowing what to say or do, thinking: "Gosh, she's loosing it!".

So if I don't cry and scream when you see me, it means I'm strong, able to handle all of it? But if I do cry and scream.... seems like I'm damned if I do, and damned if I don't.

So back to my point of view that has changed. I look at people, and I feel like I can't connect. What I thought about life, what I lived every day, it's gone. It's changed. I don't feel like that at the moment. I talk to people, and all I'm thinking is "You have no fucking clue". Sorry for swearing, but at this point, that's really how I feel. That's the extend of my frustration and anger. I can't relate to people anymore. I can't talk to them and listen to everyday worries. Everyday news. When all I want to do, is go home and crawl into bed. To stare unseeingly at the dark curtains, wondering what tomorrow will bring.

Enough moaning. An update: Monkeyman is okay. As okay as I guess a child with 30% heart function can be. He's tired. Like always. More than 2 months ago, but not much more than 2 weeks ago. He goes to school, still fulltime. But he asked me to come and fetch him earlier. I have no idea when I should listen to him, and comply. Of course, the teacher says don't worry, he's fine, don't molly-coddle him, keep him and his routine normal. But when as a mother, you hear that your FIVE year old is in heart failure. You have no idea. You don't know when to push him through normal childhood things like a full, tiring week, or when to listen to your instinct that just wants to wrap him up in cottonwool and preserve any little bit of function he has left. At all costs.

His blood tests improved!! Yay!! The transferrine isn't high anymore. The low white blood count is still low, though some of the figures have improved a bit. The dr said there's a number of things that can cause this. But for now, she thinks we should just leave it be and wait. Wait and see. Always, wait and see. I've decided stuff this wait and see. I'm taking him to my trusted GP on Monday. I want him to give me his opinion on how bad off Monkeyman is, and if this wait and see is okay. Because I'm not okay with that. I'm not the wait-and-see type of person.

He's okay so far on the medication. His heartrate drops to about 60 bpm (beats per minute) from a usual of around 80-90. So that's fabulous! Unfortunately, it doesn't stay that way for very long. And we're only giving the medication twice a day. But, we're still on half a dose. About a quarter of what he's allowed and been prescribed. So there's still room for improvement. Apart from his heart beating very deliberately and slowly after the meds, I haven't noticed any other changes, signs or side effects.

Boeboe's okay. Doing homework 2-3+ hours a day. Stressing big time. Anxiety through the roof. No relief on the new medication. No change on the higher dose. Still anger. Still screaming. Still not able to always communicating fully.

Peanut is doing really well. She speaks so well for her age. It's so cute. I'm enjoying her thoroughly. She's extremely attached to daddy. Cries if he leaves her alone for even a minute. So sweet.

Mr N is still like a fish in water, but seems to realise that grade 7 isn't and will not be easy. It's alot of pressure, and alot of work. He's handling it well though. So far.

Yes, life goes on as normal. I still do the washing. I still fetch the kids from school, smile at the other mommies and chat as if I'm happy as larry. I cover their schoolbooks with plastic. I attend parent evenings at school. We watch tv at night as a family. We sit outside drinking coffee while the kids play around us. We go to the shop and we have dinner with friends. I go out, I read, I research. Life goes on as normal. Except that every few seconds, my heart contracts in fear when I remember that my mom was dying, while my life went on as normal. That while her heart function declined and continued to decline despite medication, my life went on as normal. I shopped, I took care of my baby, I watched television, I read, I visited friends. While my mom was dying of heart failure. From 25%, it was about 3 months to the end. Is my life going on as normal now, while my son...?? I can't even type that out. So yes, every minute of every day, I think about the fact that my son's heart function is 30%. It just SEEMS as if my life is going on as normal...