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Don't Judge a Book by its Cover

3 Apr 2016

Some people just absolutely do not get how hard and busy our life is caring for a child with complex needs. I am completely and utterly mentally and physically drained all of the time. Looking after Ethan is a full time job 24/7. 

I do the majority of his care on my own. Ethan goes to his dad's every other weekend. This means I have two full on weeks with Ethan full of sleepless nights, attending countless appointments, lifting in and out of the car, taking apart and putting the chair in the car and full care of a child who is unable to meet any of his care needs himself. 

I order his medicines and nappies to ensure we don't run out. I rearrange and book appointments. I do his physiotherapy and daily stretching of his muscles and massage. I administer life saving medicines daily to keep my son alive. 

By the time these two weeks are up I am exhausted. I am in need of lots of sleep which I cannot catch up on in just two nights. I have to cancel a lot of plans on theses weekends because sometimes my body just shuts down and I become poorly and unable to carry on. These weekends are to relax and gather my thoughts ready for mummy duties on a Sunday night again but I still have a flat to look after and ensure I am back in the game ready for the next two weeks. 

This leaves very little time for me to do anything else at all. I also have all the usual jobs that come with having a family. My flat gets neglected because obviously my sons needs are greater than a clean home or a tidy garden or a clean car. 

I would rather wash feed and encourage my sons development above anything else because he is all that matters. 

I have been working on top of all of this for the last year. My days off in the week are full of appointments seeing lots of health professionals for Ethan's varying conditions and needs. They are also full of tidying, cleaning and washing. All of this is done on very little sleep as Ethan is not a great sleeper!! Then every couple of weeks a seizure is thrown in to keep me on my toes! This throws everything out the window and wipes us both out! Seeing your child go through this traumatic experience is horrific, the thoughts that your child may not come out of it are overwhelming and this emotional strain is what wipes me out after them. 

I am so incredibly thankful that my baby boy is alive and well and that really is all that matters. He is my absolute world and to me he matters more than a clean house, garden or car. So before you judge all the mess that surrounds me why not think about when I am supposed to fit all of this in when my schedule is so tight and full as it is. I don't have a lot of down time but I still have to fit it in otherwise I would not be able to carry on giving the standard of care and love to Ethan that I do. 

Ethan is a loving happy boy and his needs for me come above anything else. 

I am no longer a single parent and this makes me incredibly happy! I have an incredibly supportive and loving partner who supports us in every way. He too is also mentally and physically drained. He works full time all week and then helps with all the care when he is home from work. Yes some of the pressure has been lifted for me but it still doesn't mean there isn't extra time for me. We do everything together as Ethan is getting bigger and his needs are increasing. It's not often a case of one or the other to meet these needs its more a case of needing two people to meet these needs. Steve does a lot of the manual lifting for me which I am unable to do. He has quickly adapted to life with a child with complex needs and helps with the stretching and medicines and water feeds. But above all he provides me with emotional support. He takes a lot from me because I am tired and worn out and constantly on edge as to what's going to happen next. He is an incredible human being who loves me and Ethan no matter what. He supports us in a way no one can imagine. 

Together we can face the world and those that judge. It's hard to deal with this on top of everything else. My emotional limits are exhausted and I would rather not have to deal with the extra stress of people who judge us. So before you judge that my flat, my garden or car are not up to your cleanliness or tidiness standards please look at all the facts and decide what's more important. Because for me having a child who is happy and thriving and has all their needs met far outways anything else! 

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