Being A Mother To A Child With Additional Needs…

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 covid.
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, well as much as you can at least.  My hands have been red raw with washing them since the NICU days, I would always politely ask that if anyone was feeling ill to not come over. Everyone must wash their hands and antibac, this was back in December 2019.

In May 2018 Penelope made me a mother, and in November 2019 Amelia made me a bad ass advocate mother. I never saw myself as 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. Its almost a no go area, and 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, parent 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, then the added parent guilt and horrific thoughts, and worst of all… the dreadful thoughts 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’ its tough. You already know the signs and the memories and moments you haven’t had. I kept thinking about the first few weeks with Penelope and how amazing and precious they were. I kept comparing the first few months with Amelia and it wasn’t fair, they were completely different situations. I just found myself getting upset and angry about everything. I needed to accept that Amelia was different and Penelope needed me as much as I needed her. Penelope always  brought me straight back to being in the moment, with her infectious giggle.

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 and parents they are finding it difficult. What I find the hardest is loneliness. In a covid free world we would be at Keech 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 a 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 lose. 

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 I will 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.

I have spent many nights crying into pillows sobbing at the thought of the future. Hiding these from my husband and family as I can’t bare to worry them. 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.