Sometimes Mothering is harder than hard

I have a neighbour, yes we all have them, but I have one who manages to make me feel terrible with just a single glance and a turn of phrase.  She is always beautifully turned out, drives a brand new sports car, runs her own successful business,  has a hot tub in the garden and one perfectly dressed nine year old boy who in her eyes can do no wrong.

So this morning when I am screaming at the boys like a fishwife to get in the car or we will be late, hollering my lungs out to leave the drink at home and just get in the car, who would it be that walks past.  Yes you guest it the PP neighbour (practical perfect) and she says "I see you are having issues with the boys again".

I didn't know how to respond to that so I just mumbled something about having to be somewhere and get the boys strapped in the car, but it stings, it really does.

The thing is she is right and the truth hurts, I have gone back to the screaming banshee I was before we underwent the trying to give shouting up for lent and I am ashamed.   We all seem to be shouting to be heard, I shout, therefore, the boys shout and I feel the need to shout loudest, it is a contest and it shouldn't be.

I have a temper, a really bad temper and it bubbles up inside until it explodes with a vengeance and I am tired.  Mini wasn't well yesterday and it meant that we had to cancel plans and spend the day in the house and the boys don't do well without their exercise.  But in truth this is an excuse, there is nothing I can say, I shouldn't be dragging myself down the boys level.

This morning things went from bad to worse, Mini had taken a drink in the car with him, which went everywhere as I drove round a corner far too fast (blackcurrant oh joy) and I started shouting again.  

I am really struggling to hold it together, to be the mother I want to be and should be.  I miss Mr Smudge desperately, I see him everywhere around the house, a carrier, a cushion on the sofa.  I am trying to do the best I can on very little money, even less sleep and be there for my mum too and life is hard.  

I am still waiting for the results to my test on the 7 July and have received nothing but excuses from the hospital as to why I haven't had them - The consultant is on holiday, the radiographer is on holiday, we haven't received the report from the radiographer, the file is on the consultants desk, his secretary is on holiday.  They are sick of me, I rang up this morning and have cried at the cover secretary.  I am tired, tired of all the waiting, the not knowing, the health issues I have to live with on a day to day basis.

Please don't think this post is a cry for attention, as I don't do that.  I am not looking for sympathy, I just wanted to get it all out and to try and writing does that for me. 

Living with a child with a health condition

When Maxi was 4 months old he became unwell.  He got a cold and was very unhappy, not his normal self at all.  He also fell off my knee and we were so concerned we took him to A&E at 6pm.  The doctor took a look at him and said he was fine and just to keep an eye on him and bring him back in if he was being sick.

Maxi on the afternoon before he fell off the sofa

We put our little baby to bed at 8pm that night and tried to give him a feed at 11pm, as usual, but he wouldn't take the milk, in fact he didn't cry, he was just struggling for breath.  We decided to ring the out of hours GP service and the doctor was with us within 30 minutes.  Within 2 minutes of entering the house, he told us to out our baby in the car and to drive straight to A&E.

He took our house keys and said he would lock up and meet us there, that there wasn't time to call an ambulance and we could get him there quicker.

A doctor and two nurses met us at the door to A&E and rushed our baby in to a cubical and then all hell broke out.  Maxi was ventilated and a cannula put in.  He has wires coming from his foot and finger and was put on a heart monitor too.  I have never been so scared since the crash section 4 months previous when we thought we were losing him.  

Maxi on CPAP in the HDU at Royal Berks

Our baby was moved to the high dependency unit as the Royal Berkshire doesn't have an ITU and we started what was our long long Vidual.  Maxi was suffering with breathing difficulties and they couldn't figure out why, he didn't have an infection, it was the middles of the summer not the bronchiolitis season, they were flummoxed.  Instead of getting better, our little baby got worse and was transferred to ITU at Great Ormond Street, it was suggested that we get him christened.

We didn't, he started to improve, we returned back to The Royal Berkshire High Dependency unit and began the long recovery, he was tube fed, changed on to nasal cpap and gradually got better.

A month later we did it all again, bar the Great Ormand Street part, as we managed to deal with it at the Royal Berkshire.  1 day after he was released we dashed down the M1 and had a joint christening for Maxi and my Niece (we basically hijacked their prearranged day), thanks to my wonderful sister in law, who arranged and planned everything.

Maxi's Christening

This became our life for until Maxi turned 3, we couldn't go a couple of month over winter without an admission.  We had over 10 sweat tests for cystic fibrosis, each time the results were in the grey area or there wasn't enough sweat to test.  Finally we for a negative test, we were overjoyed.  We were very lucky that we had a super Consultant, who agree that we needed to take some steps to prevent this happening.

So Maxi underwent numerous blood tests  and other tests and it was discovered that his specific antibodies were virtually non existent.  So Maxi underwent six months of re immunization and also had additional immunizations and guess what.  It made a huge difference.  He no longer picked up every virus going.

We have actually gone an entire winter without any hospitalisations.  It is wonderful.  We are able to manage his condition at home, which is wonderful.  He has done a whole year in Reception Class without one absence. 

drowning

I am struggling at the moment, to find my get up and go, yes as per all the cliches it has got up and gone.

I had blood tests last week and I am already anemic again, my lips are splitting at the sides and the junior doctor who discharged me after my last transfusion didn't order the additional tests I needed, which means I still don't have a date for further investigations.

But my blood results showed that it is unlikely I have pernicious anemia as my B12 level was still up thanks too the injection I had received. 

I feel like sitting and crying, I keep asking why me, why my family.  Surely we have been through enough.  I am tired all the time, not the normal go and have a nap and everything will be alright tired.  No what I am experiencing is like walking through treacle. I am exhausted, but have lost the ability to find restorative sleep.

My temper is shot, I am usually patient with the boys but the anger I am experiencing is red hot.  I want to lash out and hurt people, I want to bang my aching arms in to the wall.  I want to sit and let all the red hot pain out through the tears which burn by checks as they fall.  

But it doest go, it remains seated firmly inside me,  making me no fun to be with.  This is not me, I don't recognise this person I am becoming.  Everything is too much trouble, to much effort.

I miss my caffeine, I miss my get up and go, I miss the all encompassing feeling of joy of doing something with the boys.  

My housework is getting on top of me, it is hard keeping up with my appointments, let alone my mums.  I am feeling terribly guilty as I have had to ask my brother to take mum to the consultants this week, as I can not find the time to take her alongside everything else I need to do.

Yesterday was also the first day back at school for the minimads and now I can not wait for the school holidays to come.  I missed them, my hear physically ached for them and couldn't wait to pick them up and have a big cuddle!

I fear I am drowning.