What sort of mum?

I'm the sort of mum who has always wanted to have children.

The sort of mum who doesn't like being pregnant, hates the nausea and the pelvic pain, does not like labour at all and actually feels quite terrified when given a new baby to look after. 

I'm the sort of mum who doesn't get that rush of love when I first see my baby, because quite frankly it could be anyone's baby and I wouldn't know the difference. 

But I'm also the sort of mum who's love for her children grows as I get to know them and all their little ways. 

I'm the sort of mum who started off with no confidence in herself but then was given a very special little baby who needed a mum who could speak up for him and become his voice and advocate.

Now I'm the sort of mum who has become the sort of mum I never imagined I could or would be. 

The sort of mum who chooses to blend three meals a day in the hope her son's digestive system will not pack in. Who attends manual handling clinics to makes sure the headrest is just perfectly positioned. Who finds it really hard work to keep interacting with my son who won't interact back.Who reviews an EHCP draft with a fine tooth comb to make sure there are no loopholes. Who gets asked at every hospital admission what my resuscitation wishes are for my son. Who knows how to do the job of a pancreas. Who knows that that little noise means a great big phlegmy cough is coming. Who thinks through everything on my son's behalf and tries to imagine what his experience of life is like. Who finds her son's smile worth a hundred tough days. Who watches violent seizures with a complete mix of normality and heartbreak. Who is trying to find someone to update her CPR training. Who tries to explain to her three year old about death. Who thrives in an MDT meeting but finds a normal conversation a bit daunting. Who fights (in the friendliest kindest way) to get her son what he needs. Who has to hoist her son onto her knee if she wants to give him a cuddle.The sort of mum who doesn't want to live with regret that my son didn't always get my best. 

I'm the sort of mum who will never be able to turn off the worrying but who would sometimes like to be able to turn off from the routine of the nebs and the physio and the hoisting and the feeding and the blood glucose testing and the nappy changing. The sort of mum who would just like to have a little break now and then to do something a bit nice (that doesn't involve military operation style planning).

But to be the sort of mum who gets a little break now and then I've got to be able to put myself first and ignore what I know is right and best and safe for my son. I have to be able to let strangers (all be it highly trained strangers) take over my job as my son's advocate, voice, interpreter, pancreas and mum. But I just can't do that.

So I wish instead someone could understand the sort of mum I am and see my need for a little break but see my bigger need to do my absolute best for my son. I wish someone would see that it's taken a long time to build a little team of people who I can trust and who know how to do my job just like it needs to be done. I wish they'd see that if he's not with me he should be with one of them because that's what's best and safest for him. I wish they didn't just have to see costs and red tape and policies and insurance problems. 

Every child is different, every mum is different and every family and their needs is different. I wish sometimes we could stop and listen and work out what are this family's needs and how do we best meet them instead of squeezing everyone into a one size fits all option. Choices for care have improved massively but I think there's still so far to go in making the family feel listened to, understood and respected.