Our 6 year old son has a myriad of health challenges that in and of themselves would probably be very manageable. But put them all together and it’s a witches brew of angst. The poor child has been on a daily medicine routine since he was born. And after six years, I am nearing a mental and emotional breakdown. Allow me a few moments to lay it on you – whoever is out there.
Every morning, he has to take two breathing treatments, one pill, one nasal spray and one inhaler puff. He wakes up thinking about this routine and is instantly agitated and upset. The treatments require a 10-15 sit-still and even allowing him to play his DS or watch cartoons during this time doesn’t sweeten the deal. Every morning, there are tears.
Every evening, we have the same regimen, only adding in two more pills to swallow. After dinner we start the books/bath/bed routine for our daughter – but have to do the books/bath/medicine/bed routine for him. Starting at supper, he thinks about it and the arguments, attempts at negotiations and tears begin.
We have removed 2 additional treatments from his routine each morning and evening at our own discretion – we’re talking to the dr. about it tomorrow – because we just couldn’t handle the emotional gut-ache that came with these fights and tears and didn’t see the benefit from the medicine itself.
Our child has been dealt an unfair and terrible deck of cards. Even with these medicines, he is still almost always on an antibiotic or steroid, too. He isn’t allowed to be a child with all of this on his plate. He doesn’t understand “You have to take it to stay healthy” and “Wouldn’t you rather spend 15 minutes doing it than spending days in the hospital?” He just knows it sucks.
As his parents it stinks for us, too. We rarely get to go out and leave the kids, because writing down the medicine routine and packing it all up is too overwhelming. We can’t go on overnight or extended trips because we worry the whole time that he’s a) sick or b) not taking his medicine so he’ll be sick when we return. We can’t eat at a whole host of places because they make him sick. We can’t take him to movies because too many germs in an enclosed space are dangerous for him. We never travel as a family more than 2 hours away because only his doctor knows how to treat him when his body attacks him, and we want to be sure we can get to the doctor. He’s given us his cell and a calendar of days he’s on call in the ER and who is on call when he’s not so we are always prepared.
The medical and pharmacy bills are another source of fights and tears - for his daddy and me. Nothing good comes from money, we have decided. But when most of the money you make goes to doctors, hospitals and drug companies, it just makes everything hard. It's totally worth it, we agree on that - but it doesn't make it easy to write out the checks and then wonder if there will be enough at month's end to buy groceries.
From the moment of his birth, he's been sick – and I’ve been ok with that for a long time. But now, I’m not so sure I’m handling it well. I want my son to be happy. I want him to smile. I want to take him out to do something fun. I want to be able to go on a trip with my husband for our 10th anniversary, but none of it is on the horizon. Being his mother is a true blessing – and his life is one of the greatest gifts I could have ever asked for in life. I just wish it wasn’t so hard to get through each day. The fights and tears are running the show – and I don’t know what I can do to make it better.
I'm his mommy - I fix his scraped knees, broken toys, homework problems and supper. But I can’t fix this - any of it - and it’s tearing me apart.
1 comment:
I don't know what to tell you? I wish I could help more. I won't even try to say I know how you feel, because I don't. I wish Cale could do everything Eric does. Eric often asks if Cale can do this or that, and I have to say he can't. It does Suck. He's a smart kid, and keep in mind that he might grow passed some of this. You've got to have hope.
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