10 Things I Want You To Know About Life With A Child With A Progressive, Life Limiting Disease. 

10 Things I Want You To Know About Life With A Child With A Progressive, Life Limiting Disease. 

Guest Blog by Lizzie Deeble

In October 2016, our then 2.5 year old son, was diagnosed with Duchenne Muscular Dystrophy. This is a progressive muscle wasting disease affecting every muscle in the body, including the heart and lungs. The current life expectancy is in the mid-late twenties, meaning that some young men are living into their 30’s but it also means that some loose their lives to this disease when they are much younger. DMD is currently 100% fatal. In March this year, Sebastian was also diagnosed with Autism, which is a common diagnosis alongside DMD.

One

The shock never really goes away. When you are pregnant and you get past those milestone scans and especially when you come home from hospital with a seemingly healthy baby, there is this weird kind of assumption that you’ve got past the risky bit, that the worry about something being ‘wrong’ with your baby has gone. The shock of the realisation that my baby who I thought was healthy for 2.5 years has a serious and complex disease is still with me – it still feels like it’s something that could never really happen to my child.

Two

It’s the little things. I was in Sebastian’s appointment with his neuromuscular specialist a few weeks ago and I had to leave the room under the pretence of needing to change his brother’s nappy because my eyes were prickling with tears and I needed to get rid of the huge lump in my throat. Was this a result of a discussion about Sebastian’s progress or prognosis? No. It was actually because the doctor had, clumsily, suggested that his need for an iron supplement was because his diet was, in her words “insufficient”. In the grand scheme of things, this is really not a big issue. Particularly not in relation to the other things we have discussed in the many, many appointments we have had with many different health and education professionals in the last 18 months. Yet it was this that got to me.
Less than a week ago, I found myself in tears in the middle of the supermarket because I couldn’t find my car keys. Not when we discussed Sebastian starting steroids, or when he got his new wheelchair, but when I couldn’t find my keys. Both of these things took me by surprise because I had just assumed that my skin had got thicker, that I had created an effective armour. The reality is that all we do is stick ourselves back together as best we can. And that sometimes, something hits a bit that hasn’t been stuck quite as well as we thought.

Three

It really IS the little things….never underestimate the positive impact you can have on someones life just by asking how they are, giving them a hug or telling them they’re doing ok. When Sebastian was diagnosed, he was attending our local preschool. His preschool have been amazing in their support and inclusion of him, but more than that, the SENCO who has now left her post at the preschool always took time to check how I was doing, to give me a hug and to tell me that I wasn’t alone. Those seemingly small gestures meant so much to me on days when I felt that I was teetering on the edge of coping with a tiny baby, a toddler with a life changing diagnosis and a husband working away from home. There really are amazing people in the world, and most of them have no idea how much they help.

Four

Having one disabled child and one healthy child brings huge complexity. Sebastian’s brother, Toby, was born 6 weeks after his diagnosis and he was 6 weeks old when we were told that he did not also have DMD. It was at the same time that Sebastian’s diagnosis was confirmed through a muscle biopsy. Toby arrived in the midst of dark and overwhelming grief. For me, the memories of his first year are no more than a blur of survival from one day to the next. Watching Toby grow and develop in a ‘typical’ way brings both joy and sadness in equal measure. I will always wish that his life wasn’t complicated by DMD before he entered the world. I will always feel guilt for the feelings of relief that he is well, and an illogical but intense guilt that I cannot make the world fair for them both. I wish I could protect him from the huge affect DMD will have on his life in just the same way I wish I could make Sebastian well. Toby brings Sebastian’s disabilities into sharp focus and yet he also lights up our world in a way I could never have imagined.

Five

Asking for help never comes naturally. I really think if we are all honest none of us find it easy, it always feels like admitting defeat. I am trying hard to learn that needing help and failure are not the same thing.

Six

It changes everything, but it has changed me most of all. It has changed my view of the world and my relationships with everyone in it. I look in the mirror sometimes and don’t recognise the person I am from the person I was 2 years ago.  I will always be grateful to those few people in my life who have held onto the me who I was before this, who remind me that however lost I feel, I am still in there.

The mistake many make is thinking that it means treating everyone equally, when in fact that true inclusion means acknowledging and addressing the disability, adapting what you can so that everyone has a chance to be equal.

Seven

Inclusion is a complicated issue. I feel ashamed that before my son’s diagnosis, before it became personal, I was pretty much completely unaware of disability. I know that is true for most of us. Now I scan an area for accessibility as soon as I walk in, and I think a lot about what inclusion really means. The mistake many make is thinking that it means treating everyone equally, when in fact that true inclusion means acknowledging and addressing the disability, adapting what you can so that everyone has a chance to be equal. Talking about the elephant in the room is actually what we need to do. I am determined to make sure that I do all I can to make Sebastian feel included in this world.

Eight

We make huge assumptions about each others lives. When people who don’t know me well find that I have 2 boys, they often talk to me about the football matches and running around that they assume will be in my future. As well as the huge gender stereotypes that we really need to have left behind by 2018, we also assume when we meet someone that their children are well and able. We all do it, but it has made me think a lot about trying to assume less about everyone’s lives.

Nine

Parenting a child with SEN is like A level adulting. I remember that feeling when we first left the hospital with Sebastian as a new born baby, that feeling that surely someone was going to realise we had no idea what we were doing and that a proper grown up would take over soon. Parenting a child with disabilities is like having that feeling multiplied many times. There are so many decision to be made, so much coordination of appointments, medications, health and education needs. It is constant and exhausting, and I am still looking around for the proper grown up. I’m sure they’re on their way…..

Ten

My heart will never properly heal. That doesn’t mean life is miserable or that we spend the whole time feeling sorry for ourselves. Far from it. We are busy sticky-taping and glueing ourselves back together. We have memories to make and lives to live. There is immense joy. But I also know that some things are irreparable.

You can follow Lizzie’s motherhood journey on her blog, or her Facebook page

To take part in this series please email submissions to laura@mumoam.co.uk along with a photo & links to your social channels & blog

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