A hard Day

Don't you really dislike it when you do something and then feel guilty for a long time afterwards? I mean when you accidently get cross with your child and it wasn't their fault and you feel really bad?

I have been having a frustrating time with Isaac's poo toilet training. Remember how I said that the paediatrician mentioned that it was a problem with his brain and the receptors on the bowel..and that it doesn't tell him that he needs to go to the toilet until his bowel is so stretched so the poo-poo is SO big. It then hurts and Isaac becomes really anxious about doing it on the toilet. Not only that, when he relaxes to go to sleep it will come rushing out...usually he has a nappy on for sleep time...but I put a mattress protector on his bed and have tried without the nappy for afternoon sleep time, hoping it would encourage him to go on the toilet. I keep forgetting that it is not his fault that he feels anxious....and I afraid to admit that today I got really frustrated and got cross. I have not been able to shake the feeling of guilt over being cross at him when it came to poo-poo on toilet. I apologised...said I was sorry to him..told him I loved him and gave him a big cuddle and told him that I know it is not his fault and mummy is really sorry that I got a bit upset about it all....let me backtrack a bit. The medication that he is on to help soften the poo and stuff is an oil and if they are on a too big a dose it will leak out their bottom...he has been soiling lots of clothing because of this and I have tried to keep my calm...because I know it is not his fault. Today he was sitting on my lap and had some wind and soiled a lot and so I encouraged him to sit on the toilet and we both became distressed...he sat there but got all upset and I knew he had poo-poo to come out because he had been holding it and some came out on his pants..I just wanted him to sit a little longer but he was being "difficult" and I became upset and frustrated....and he cried...and I feel SO bad about it. No matter how many times I say sorry I feel SO bad that I let myself get frustrated and showed it when it is not his fault. So the medication needs to be decreased by 5 mls to help stop the leakage and then we won't have the soiling problem...Isaac never soils even though he doesn't do poo-poo on toilet...he never soils anything but will do the poo-poo in the nappy while sleeping. I need to stop this leakage because it is causing Isaac distress, mummy distress and daddy at times too...we feel distressed....so if we can sort this dosage out and try to remember, "it is not Isaac's fault"...we can get through this....I will ring the paediatrician to keep him up to date I think so I have support in trying to work through this issue. He is toilet trained with wee-wee....but I keep thinking that I have a deadline to get this fixed up and that is probably putting pressure on me and making me feel a bit distressed. I need to still do this at my own pace and most importantly..at Isaac's pace and keep in touch with the paediatrician so I don't feel alone and so I don't panic that there is anything else that I need to do to help Isaac. May be, then, I won't feel so frustrated..so distressed because this really distresses me...and if I am distressed..surely Isaac is distressed..and Alan.

Now down to health issues. Isaac is feeling much better...still runny nose and cough but his energy levels have increased today and he is eating better...on the mend. I definitely had what Isaac had and are are getting better but I still have hardly any energy and went i went to the shops today, only after a couple of mins of being in the shop I felt clammy and like I was going to faint. Alan...well he is now sick. He was feeling a bit off yesterday but ok. He has had some ulcers and a sore throat a bit and I thought he may be fighting it but today he is feeling less energy and has lost a bit of his voice and is coughing a bit...he said he is feeling weird and he has been lying on the couch! A definite sign of unwellness. I don't think either of us will be at church tomorrow. It is not a nice virus either. Isaac had the day of temperatures in the high 38 degrees C...and it landed me in bed and so Alan is at the beginning of it.

I also was a bit anxious the last day and had some nightmares last night...woke up with a bad headache this morning...I have not been feeling the most emotionally stable today. I was supposed to have a haematologist appointment yesterday but was too unwell to make it. Alan went in my place to discuss a few things and one of the few things really upset me...what the haematologist said....you know, we all know about the negative things about FA but it is really hard when a doctor or doctors keep driving this information down...I know about how bad FA can be but I am trying to keep on living and live hope in my life by making certain decisions to do some special things with my life and it feels really discouraging when they keep going home of this risk thing.....if all I did was live according to all the risks with FA i would not have become a registered nurse...a mother...a wife...travelled and all sorts of things....I feel very restricted by the medical world. My old haematologist...the one I really liked..used to tell me that he knew I understood all the risks so he was not going to keep mentioning them because I am an adult and we had discussed them and he knew that I was in my right mind and that I should be able to have hope and live life because I know what the risks are and I am making fully informed decisions....so I felt like I had hope to do things to just live but I have struggled with my right to do that since he left...it has been so discouraging. Well, I had tears over some things that were said and Alan and I discussed them and we know how we feel about these things and are standing firm because we know what we want to do as a couple, as parents...as individuals who face this disease..we know what we think is best for our family......I am not actually gonna talk about our secret discussions as husband and wife......they are for us right now...

Anyway, so I don't have any any funny things to discuss today...sorry...all deep stuff.

I sure hope I didn't do any damage or cause more anxiety for Isaac with my accidently upset...I don't want him to think I am cross...he seems fine now but I worry! It is so hard to do everything right as a parent, an individual and a wife sometimes...that is life though...God is helping me. I have to remember that...He really is.

Ok, well til later,
Love Charisse