Being A Disabled Mum

We continually get asked questions and have had anonymous complaints to social services about me being a disabled mum. Am I fit enough to take care of our daughter? Legally am I allowed to? Should I be left alone with her? Can I adequately protect her? The answer to all of those is I AM A DAMN GOOD MOTHER! My daughter is always in the best care whether that is with me, her father or a close family member. Those who have seen me parent know full well that there is no reason to question my parenting. I shouldn’t have to prove to anyone my abilities to parent, purely because I have a disability.

Every time our daughter sees my wheelchair, she squeals with delight because she knows that means we are going to walk the dogs. When Mumma is “poorly” and can’t get out of bed she enjoys taking care of me. That means tea, biscuits and Disney films in bed. It means napping together, all day snuggles and being allowed to use Daddy’s pillow and Mumma’s blanket. We read, play and draw together – all of this has a profound effect on my health and I always bounce back because she is my reason to live the best life. At times I am unable to participate in family life, that’s where our brilliant family step in. Auntie and Grandad fill her heart with such joy that she squeals when they come to the door. Our darling girl then forgets that I am poorly and not there and just has a wonderful adventure. I miss out, but she never does.

Our sweet girl understands that Mumma has “poorly legs”. As adults we understand that it is far more complex than that, but overwhelming a child does not help them understand. As she grows she will understand that my situation is much more complex, but she will find that out in her own time. “Poorly legs”, is something she can explain to peers, teachers and anyone who asks. “Mumma has poorly legs so she can’t walk.” When I am bedridden due to my brain tumour, she understands that “Mumma has a poorly head”. Again, something simple yet true that she can explain to anyone.

Like all good & competent mothers, my child’s safety is my top priority. If I wake up and know that I cannot cope (which is not often), we as a family have protocols in place, not to protect me but to shield and protect our daughter. The days where I have no control over my pain, bladder or bowel, reflexes, when I hallucinate her sister & scream because I don’t recognise her Dad. She will ALWAYS be protected from that. Our daughter has never witnessed anything that distressing, we make damn sure of that! As I am a regular hospital inpatient and outpatient, we made the decision not to allow her access to me when I am admitted. I can be hooked up to all sorts of machines with wires and tubes in abundance. Depending what ward I am on depends if children are allowed and she wouldn’t be able to climb onto my hospital bed to kiss or cuddle me due to infection control. There are a multitude of reasons really, I just never want her to think hospitals are scary places. They are places Mumma goes to get better, to her they are magic! That kind of innocence makes me duty-bound to protect it.

When our daughter asks questions we answer them honestly and fully as possible in a way she will understand. She has always been my reason to fight and my reason to live, so long may she continue to have no idea that I am going to die. That is something her Daddy will have to deal with when I am gone. God, that breaks my heart. I will never lie to her, but as her parents we have to prepare her in the kindest way we can. Death is one of the most normal parts of life, everyone dies at some point. To some degree she understands because her sister is in heaven, so maybe one day Mumma will go and visit her sister?

The only thing that stops my heart from breaking at that thought is her Daddy. I hope one day she grasps the knowledge & understanding of how truly incredible her Daddy is. There will never be a man more worthy of her love or mine. In Daddy’s arms there is nothing and no one who could love and protect her more. I am not scared to die and I feel relieved to know that all these question about my ability will die with me, but I wish people would be more understanding, rather than wasting what time I have left with her. I do not want to leave her – that is just my basic motherly instinct, but it is inevitable.

This is such a taboo subject and people do not raise their voices because they are just relishing the time they have left to hold their children close. But the truth is, it needs to be spoken about and loudly! Discrimination comes in all forms and I should not be prejudged purely because I use a wheelchair. I also believe that by speaking about these taboo subjects more support pre-death and post-death can be established to help bereaved children and families, who have lost someone so dear to them. My death will not be a shock, the services we currently have in place have time to help us prepare for the inevitable, but as usual they only act once a situation has arisen rather than invest their time and money in better resources beforehand.

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Ella Hollis

Trying to find normality amongst multiple chronic illnesses.

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