Fed up!!!

[HelenLG]

first off i should probably introduce myself, i am helen and i have a 12 year old son with a rare genetic condition called herediatary multiple exostoses syndrome and benign congenital hypotonia, as well as a list as long as my arm of other problems.

we have always managed my son's condtion and it has never been an issue caring for him but in october his health began to deteriorate rapidly and my son is now in so much pain he has been unable to move from the sofa for almost 4 months. his specialist thinks he has one of his lumps growing on the inside of his spine and it is causing a spinal compression resulting in this horrendous pain and until he sees a spinal specialist she can do nothing but try to manage his pain with a variety of drugs.

i know i sound like such a horrible mother and i know my child is suffering too but i haven't been able to leave the house for as long as he has been ill and i am going insane. i have had two visitors in six months as people get very upset when they see my son and very few people to help. i love my child but i am feeling so lonely and isolated i really don't know how to cope anymore. i am sorry to be using this forum to rant and whinge but i don't know what else to do. i seem to be fighting for help from social services (they sent leaflets for groups where i could take him but as he can't move it doesn't really help). my son keeps telling me that there are children worse off than him and we should be glad he isn't any worse but selfishly, i don't see an end to what is going on anytime soon and i don't know how much longer i can deal with this. watching him suffer is unbearable and as he is depending on me 24/7 i don't have any form of escape. i am so down, fed up and exhausted.

 

[BabyBoo36]

Rant away HelenLG, that's what these forums are for. You're not a selfish mother - you have needs as well, and you're struggling to watch your son in pain, daily. Anyone would need a break from that.

When I found put about my LO's condition, I ranted and raved that I had done everything "right" yet we were still having a baby with spina bifida. Yet my cousin, who had a "colourful" teenage past, and wouldn't know about folic acid if it bit her on the ass, was pregnant at the same time with a healthy baby. It was unfair and hard. Did it make me a bad person to feel that? No, it made me human. I didn't wish any harm on my cousin or her baby, but I was so angry. Why did it have to be me and my baby? Why does it have to be any of us?

I guess what I'm trying to say, is don't beat yourself up for feeling frustrated, down, cheated - whatever you might feel. I can see from your post just how much you love your son. Is there not anyone who could sit with him just for 1 hour while you even go for a walk/have a coffee? Ask social services if they do respite/sitting services to give you a break. Would your son manage to sit in a wheelchair for an hour? If he can you could request your GP refer him to your local wheelchair assessment centre, and they may be able to help.

Keep fighting. You're a brilliant Mum xx

 

[Karlie06]

Hugs to you Helen. My son has severe autism and global learning delay, and has many problems including no speech, he wears nappies and is VERY aggressive. Last night he was violent towards himself and us and is black and blue and his arms and legs are covered in bite marks as he has bit himself. He has spent the nighttrying to pull his own front teeth out because he was so cross. I haven't sent him to school today as he didn't sleep till after five this morning. I totally understand what you mean about feeling like you need a break but no one else can look after my boy as he cannot cope with anyone new or a change in routine. Like the pp said, it's normal to think why my child. I too did everything right and have no idea why he is like this, even the doctors don't know! Sending more huge your way Helen as I know how tough it can be xx