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Making the most of every day with a seriously ill child

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During these crazy times of lockdown and Covid, we have all spent much more time at home. We have been extra careful not to touch anything whilst we are out, not to hug or get close to others especially if they are showing any signs of being ill.

We are all used to this now, but I can tell you that my family and I have been living in a version of this since we had Amelia. When you have a child who is medically fragile you have to protect them from harm. As much as you can at least.

My hands have been red raw with washing them since the NICU days in 2019, I would always politely ask that if anyone was feeling ill to not come over. Everyone must wash their hands and put on hand gel.

In May 2018 Penelope made me a mother, and in November 2019 Amelia made me an even better one. I never saw myself like this, I didn’t think I had it in me. It had never entered my mind that I could have a child with different abilities. I think that this is the issue, we as a society are not educated enough about disabilities and being a parent of a special needs child. Only when it is thrown upon you do you start to learn.

No one is taught how to care for a child with additional needs, parents like me are thrown into the deep end, having to deal with everything that is being thrown their way.

Diagnosis, operations, tube feeding, fits, seizures. The list is endless. It’s a relentless circle where no break is allowed, its groundhog day over and over again. Throw in a few phone calls and appointments, feeds, physio and speech and language, and that’s a full week before you have even made dinner for your other children.

On top of this is the constant guilt for not doing enough for your children. And worst of all, the dreadful thought of the day you may have to be without them, or what will happen when you are not here.

These are thoughts of parents of children with complex needs and life limiting conditions all the time. Sometimes its very difficult to switch off and be in the moment. For some parents this is all they know, and for others with children who are ‘normal’ it’s tough. You already know the signs and the memories and moments you haven’t had.

Believe me when I say that sometimes we forget that our children have disabilities, we just enjoy Amelia and laugh and play with her. Her older sister is extremely protective and completely adores her. These are the moments I love the most, just being with my girls. However that can make the reality even harder to bare.

This last lockdown has been the worst, I know from speaking with other SEN parents they are finding it difficult. What I find the hardest is the loneliness. In a Covid free world we would be at our hospice and having home visits and fun trips. Penelope would be at nursery and I would maybe have an hour to myself. The reality is Penelope cannot go to nursery at this moment in time, whatever she picks up and brings home could mean a hospital stay for Amelia. I know that eventually she will be at pre-school but this is a constant back and forth for families like mine. You want your children to have as normal life they can, but also you want to protect your child who cannot protect themselves. It’s a constant battle that I feel I will always loose.

Lockdown has been really really tough, there is no end, especially in this third lockdown.

Amelia is getting older and bigger which means she is getting heavier to carry and hold. It just makes me think about how much time will I have left with her? She has already surprised most of her medical team and us. However the more time we have with her, the more I fear and dread her leaving me.

To be completely honest life is a struggle and if I could I would spend all day in bed. I don’t have that option. I have to face the world and make life as magical and loving as possible for my gorgeous girls.


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