My blogging has dipped considerably since leaving hospital for a multitude of reasons; settling in at home, getting organised with carers, a holiday (I still can’t believe we made it!) and trying to figure out how the hell I’m going to get my degree done. Mamas going back to school!
A few weeks ago I had to complete a 3 hour mandatory manual handling training session in Leicester to go back on placement. My university have been fabulously flexible in getting me my final placement in Nottingham and Nottingham have been very accommodating providing me with my mandatory basic life support training.
The feelings it evoked being back in my uni city, back in the buildings that the last time I entered I was pregnant with all the normal expectations of motherhood put a lump in my throat. Being back in a classroom doing the session reminded me of the freedom I once had and brought a completely new perspective of nursing for me. I had always treated patients how I would want my own family to be treated but now I had a disabled son, my passion was fierce. I found myself looking around the room at the other students praying they were good people and envying their lack of awareness.
Maternity as you know was not a breeze, I’d say roughly 90% of it had been spent in hospital by the side of my newborn to 11 month old. Unlike some normal mums that don’t want to go back to work or the special needs mums that can’t, I fell into this strange grey area wanting to go back and fighting the impossible.
If I had a standard day job and not a vocation I loved, I wouldn’t bother – my sons life expectancy is unknown. Even if I had the vocation secured I would not return until things had been stable for longer. I would enjoy the time I’ve finally got home with my son, we’ve only had approximately 3 months at home since he was born (I’m still learning things like cit bumpers and bottle racks exist!) and he’s now 13 months old.
However, I still haven’t finished my degree and the thought of my three years of blood, sweat and tears going down the drain has been hanging over me the entire year. If I don’t do this placement now, I have to resit the entire third year. That is not an option. My heart sinks at the possibility of me not completing this placement because there is no chance I can do a year of this. There is no way I can commit to one year of childcare, I can’t even get 3 months at the moment. And there is no way I would sacrifice a year with Jaxon.
Why so dramatic? This is a huge risk. My son is well right now but by well I mean he’s out of hospital. Being at home feels like walking a mile long tightrope, I’m expecting us fall off and back into hospital any minute. Being at home is everything we want, on a cliff edge. Maybe he’ll be fine but the approaching winter is filling me with fear. It will be our first winter at home and the risk of infection is high. Maybe that’s why I couldn’t get him into nursery, maybe it wasn’t meant to be. A recent cardiology appointment opened discussion for his personal resuscitation plan being changed for the winter as if he caught a serious chest infection at home, the interventions to keep him alive would be traumatic. Being at home means if he has a cardiac arrest, it’s unlikely he will make it to hospital. That’s my normal day to day life. It’s been like this for a year now. So why am I going back to work?
I’m holding on to hope and faith that their is a better life for us. Im sacrificing 12 weeks in the hope that having my degree will open more doors for me and Jaxon and the quality of life I can provide him. Two days a week at a minimum paid job in this economy works out more expensive in childcare than the income it brings. Two days a week as a qualified nurse can double that. I have a 5 year plan that puts us in a good place financially if I get this degree. On top of finances to compensate our quality of life together, I actually want to work. I want to be me, the me I worked 26 years to become that has suddenly disappeared.
If someone told me Jaxon had 6 months to live, I wouldn’t do this. I’d ditch the degree. I’d give it all up for time with him. But no one can tell me how long he’s got. He could have 25 years, in which case 12 weeks for a better 25 years is worth it.
It’s that wretched heart of his. Last November I was told it could stop working any minute. Then bronchitus, numerous electrolyte imbalances, struggling kidneys and two operations later he’s better than he’s ever been. We’re stable.
I’m going hate myself if something happens to him but I’d be kicking myself if I didn’t try. It’s not a fair decision to make or position to be put in but it’s the cards we’ve been dealt. He’s constantly surprising me with his strength and resistance, he’s going to be fine.
The stress it has taken for this day to come is unreal. From someone reporting an Instagram rant of mine complaining about Jaxons care, questioning my professionalism and threatening my student nurse status. To university taking deep breaths and looking at me like their salaries need tripling to get me through this course (they do, they’re amazing!). To three nursery visits being a waste of time forcing me to accept my son being rejected from the social surroundings I knew he would thrive in. To his Dad not being trained to care for him, cancelling and not helping financially to allow me to pay to explore other childcare. To a whatapp group to juggle the care agency and volunteering family/friends to get through each 12 hour day.
My first day consists of carers 8am-9.30am handing over to an aunt 9.30am-1pm, to another carer 1pm-3pm, to my nanna 3-6, to another carer 6pm-8pm. That is how the next 36 days of work are going to look.
How realistic is this?
Jaxon qualifies for 60 hours of care from an agency each week. This is made up of four 12 hour night shifts and four 4 hour day shifts. The fact we get this amount of hours should tell you how difficult it is to care for Jaxon. His feeding plan runs for 21 hours and to keep him hydrated he has 2 hourly water flushes through the night. On the three nights a week I don’t get care, I struggle to get through the following day. From this experience, I normally put the night carers on the night before his appointments so I’m rested and able to get him to the appointments functioning well enough to take it all in.
To enable me to get back to work, I’ve had to put the carers on the night before my shifts so I’m safe to practise nursing on placement. Because I couldn’t get Jaxon in to nursery and childminders can’t give 1-1 care I’ve had to then use more (5.5) of the care hours during the day for them to pop in to do feeds, medication and fluids. This means after work, I have no hours left for the rest and respite the care is there to provide me with. It means the days Jaxon has appointments are my days off and I have to do his care through the night before. It means I’m going to be working 30 hours a week at hospital and 109.5 hours of caring for Jaxon, after taking off the carers nightshifts.
Some people may read that and think, most mums care for their child 247 and work. Let me explain Jaxon care is not the normal child care. I’m not complaining about him waking in the night or giving him his dinner or changing his nappies. I’m dreading the 2 hourly water flushes in his PEG feeding tube through the night, his medications 8 times a day, the countless cloth changes from vomiting and triple the norm nappy changes due to medication side effects. Plus all the syringes that need washing and sterilising, physio, occupational therapy appointments, consultant appointments and at home feeding and physio practice.
I read an article today in the Sunday Times written by a fabulous woman called Christine Armstrong about the illusion of mothers at work being mispainted. I strongly advise reading it. She even includes a special needs mum questioning how she will get employed with all the hours she needs for appointments. A problem I no doubt will face myself if I miraculously make it though these 12 weeks.
The 12 weeks are made up of three 10 hour shifts a week so I’m breaking it down to being 36 days of work. I’m going to count down each day and each week because that’s all I can do. Take it each day and week at a time. With childcare, with exhaustion and with Jaxons health.
Mamas going back to school – cross your fingers and toes for me.
Thank you for reading.
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