It sounds dramatic sometimes, the how much madam, has gone through n two years, really it's more but we have seemingly gone down hill in two years. We might have a diagnosis but does it actually get any help? no. It gets a lot of stigma attatched, one day or even one morning she can be fine, happy running around, the next she can be physically struggling to walk. I've seen it, I experience it daily. We have found the limits and some days are worse then others. It makes it hard when we want to get out and about, we arn't ones to sit at home at the weekend! We like to go out, yes normally just into Town, and more than likely to get a Mc d's for the children. ( as it is nut safe for madam, just shame we have to.. deal with the wheat side of things. Not allergy but ibs issues if eating too much. ) When madam is in pain it gets difficult to have to drop everything, especially if i've been stuck at home all week, hubby at work we want to get out. That makes it difficult to adapt.
Not only do we have the jhms, allergies, eczema, hay fever to deal with, we are monitoring headaches which last days, (looking like exercise induced ) ibs, and going to go to the drs this week to discuss the findings so to speak. We had hearing tests this year to try and tackle the hearing/headache issue, her eyes tested. She has sprained and hurt things and she is physically exhausted coming home from school. Other parents tell me their children are still bundles of energy after school, mine arn't! far from it. I am not sure I can get across how difficult it has been, me complaining just looks like complaining. I know normal is over rated but everything we do has to be thought over, discussed, planned. It is so .. exhausting, let alone exhausting, frustraiting for the 8 yr old dealing with it all.
Small things are huge atm and no one seems to understand how big these things are. my daughters class rooms have changed this year, and she has been separated from her close friends, who have managed to stay together, ( mostly) This lead madam to be devastated, heart broken, we had real real tears, something we have not had for years, ( yes we've had upset and sadness but not full on tears! even when hurting) no one seems to care! oh she'll cope, oh she'll manage and make new friends. Thats not the point for a child that feels isolated at the best of times. She has a new set of people to have to explain her joints, her allergies, her water on the desk, her bloated tum. How would you feel if this was your child, your child who already deals with a bucket load of crap? Devastated and heart broken for her. I get emotional at the best of times when i see other people crying, I can't help it, I am empathic that way. The negative emotions are so easy to rub off. Emotions are top of ther surface at the moment and this.. is hard to try and navigate. I've been told she is in the new class to try and challenge her abilities, she is a clever cookie after all. ( no not just smug parent, she really is) and she is being put with children that might be able to challenge her. How.. how can i argue with that? I just wish she had atleast one close friend going with her.
These two years haven't been easy, far from it, especially when things are gradually worse, we have no physio now, having been told we just have to get on, plod on and come back when madam is going through the next big growth spurt, only person we have is an allergist! .. who were trying to not see us till some time next year! ( put a stop on that however and being seen this September). I know we will get through whatever is being thrown at us, we normally do. It is just very hard when your child is struggling. ( yesterday alone her body/ brain didn't want to function together, she missed her chair at school, fell off the couch for no reason whilst trying to get up and seemed to launch herself off a kitchen chair when just trying to get up! very scary to see it was very odd!!) Put on top hay fever, exhaustion.. and then mummy getting stressed out O_O lunch ideas failing miserably, ( due to having to substitute wheat and she hates gluten free bread)
French holiday... 32 days and counting down! ... oh fingers crossed it goes smoothly! (please) Lottery win would be nice to ;)
No comments:
Post a Comment