Seesaw

I felt like this with Boeboe many, many times. One week, everything would seem just perfect. No accidents, just a very few stumbles from the feet, nothing serious. And you'd think to yourself....I'm sure she's okay. I'm sure there's nothing wrong. Look at this normal child, how can I ever have thought something's up? It must've been my imagination when she slipped and fall. It wasn't a foot that dropped causing it, it must've been just a normal stumbling-over-your-feet because she was in a hurry or not looking where she's going.

And why am I such an awful mother that refused to believe that she'll stop the accidents anytime soon? Just look at her. A whole week of no accidents. Of course she's fine. What type of mother am I to believe otherwise? Did I actually subconsciously want there to be something wrong? What an awful, awful person must I be.

And then, the good week would pass and she'll have accident after accident after accident. And you'll feel like pulling your hair out from frustration, and cry yourself to sleep because obviously there's something wrong! No 6-year old will wet and dirty her pants continuously like that! No 6-year old will fall 3x in the space of an hour while climbing the stairs, shins turning black and blue and bleeding. There must be something wrong! This can't be the life she's supposed to live! The drs must be wrong! I'm not imagining this, it's happening. It's real!!

That's how it went. Week after week after month after year. One day I'd be convinced that I'm right, and the drs are wrong. That I'm not imagining things, that I'm not wishing something to be wrong. That there are something wrong. We just needed to find it! Just to have a seemingly normal child the next week and I'd be full of self-doubt.

That's why it took 7 years to get Boeboe diagnosed. :-(

And that's why it took 5 years to get Monkeyman diagnosed. :-( And it's not the end of the road yet. Because I'm still on the seesaw with him. One day good, one day bad. One day average, one day normal. One day tired, one day running around. How am I suppose to know what's going on when this happens?

I'm glad and relieved that he has good days. Don't get me wrong. I just wish that 90% or more could've been good days! Then at least I would've said - "that's normal"! But this one day good, one day bad... it's difficult to know what's normal!

I guess you can see how the past 2 weeks went. The first week was back to school week after the mid-year holidays. He stayed at home on the Monday. Tuesday he went to school and I was ecstatic when I fetched him. He was playing around!! He was happy and had a normal, wonderful day. The teacher said that he was just fine, and that he must've turned a corner at long last. I was so relieved.

On Wednesday he went to school again, and he was just "off". The teacher wasn't really concerned, but I noticed it. On Thursday, he was so tired. He stayed at home (he only goes to school 3x a week) and just rested. We went to the one grocery shop for an hour. The first 45min went well, then he just went all quiet, dragging his feet, walking slow, just not himself. Friday morning he refused to go to school. Cried and said he's too tired, he doesn't want to go. After some deliberation, I decided to let him be. Saturday we had Peanut's party, and he was okay. Not bouncing around, but not laying down either. Though, he was very quiet. Same for Sunday. Just average.

Monday last week, he just rested still. He was a bit down because his grandparents went home, so it was difficult to seperate him being sad from him being tired. On Tuesday he went to school again. It went awful. Just awful. Must've been the worst day yet. He didn't play with the kids at all. He sat around, went all quiet and despondent and stayed close to the teacher. For the last 30min she said he continually asked her "when is mommy coming to fetch me"? It broke my heart into pieces. :-( She said he just ain't well. That it just wasn't normal.

So on Wednesday morning he refused to go to school. I took the advice given to me on the FB group from other mommies who has PH kids. I took his lead and left him be. I'm so grateful I'm in the position where I didn't have to take him but could let him be. So he stayed home and just lied down all day long. On Thursday I asked if he doesn't want to go to school since he missed Wednesday, but he refused. Though, he definitely seemed better to me. Not so despondent and tired-sounding.

So by Friday he said he wanted to go to school! When I fetched him, I parked the car in the parking area, which has a great view over the playground. And I just sat there for a few minutes, drinking in the sight of Monkeyman running (yes, running!) around with his friends. He was throwing things, laughing, running, playing. It made me sad in a way, to realise how much that meant to me. To see him like that. It should've been the norm, not the exception, to see him playing care-free with his friends.

The teacher said he had a wonderful day. He was like any other "normal" 5-year old little boy! And I could see it. His cheeks were rosy red from running around. His eyes were sparkling and happy. He smiled and laughed and chatted animatedly.

Friday afternoon he was a tiny bit more subdued and lied down a while. But by late afternoon he perked right up again. His cousin visited, and they had an absolute ball. I can't remember when last I heard him running around in the house, laughing and playing, throwing balls and just went on and on and on, for hours on end. He was just perfect!

Unfortunately, yesterday (Saturday), he went all quiet again. Refused to go outside and play with his sister until about 16:00. She begged and pleaded and tried to bribe him all day long. He just refused and sat down. Today, the same story. His siblings asked him to come and play with them outside, and he'll go for about 5 min at a time before returning to sit down inside again. He still plays with them, just not as energetic or as continuously as he did on Friday.

So ya, that's the past 2 weeks on the seesaw. Up and down. Down and up. How on earth should I know what's normal anymore, what's his normal, and if anything is wrong? I don't!! I don't know anymore. So ya, overall I feel like there shouldn't be so many off-days. There shouldn't be so many times he needs to rest. And his teacher shouldn't notice something is wrong. Because then, something is wrong. But, the good days seems so normal!

We have a week to go. I emailed his cardiologist last week to ask advice, but either she hasn't seen/received the email, or she ignored it. Either way, I haven't received a reply. Pity. Tomorrow in a week's time, we have our 8-week checkup. To see if the pressure in the pulmonary arteries still measures high. The ENT assured us that it WILL be down. I asked him "are you sure"? My voice full of doubts. So he said in a voice filled with finality "it will be".

In the meantime, I'm going to book a 2nd opinion appointment. I think I lost most of my trust in his current cardiologist. She diagnosed my son with a potentially life threatening, or at the very least, life altering disease. In her eyes, it wasn't a big deal because she thought/believed he'll recover completely. But, from what I read, it's so rare, and drs are frequently wrong about this disease, that she SHOULD've at the very least, entertained the thought that she might just be wrong. In which case he needed follow-ups, good care, a caring, knowledgable dr, and support for the parents.

We had none of that. A dr that didn't seem caring, no support, no care, no follow ups except the one appointment that the ENT told us to make at 8 weeks to see the cardiologist again. Not even after I repeatedly told her that he's exceptionally tired and has been all his life, she didn't follow it up. Even after I emailed her the 2nd time, telling her that it's been 2 weeks after the adenoidectomy and he's just very, very tired all the time, she told me to just "give it a few more days". No support. No follow up. No advice. Not even another email a week later to at least ask how he's doing. Or a telephone call. Nothing.

I feel like I failed my son. I should've demanded better care. I should've lifted my ass and made a 2nd opinion appointment a month ago already. I should've done a whole lot of things differently. Now, it's been almost 3 months after his first diagnosis and all we've had to show for it, is minus one set of adenoids and a child that's worse off. :-(  And parents stressed to the limit. What a waste of 3 precious months.

Or not? Maybe I'm just unnecessary pessimistic and everything would be just fine next week. Please, let me be wrong. I really, really hope that I'm wrong.