20 Things I would tell my past self…

20 Things I would tell my past self…

…by Stephanie Swann

20 things I would tell my past self about being a parent of a child with disabilities 

As my little boy Joseph is getting older and we progress further through our HIE journey I feel like I have a lot more time, mental clarity and space to be able to properly reflect on our experiences from his birth to where we are now.

I think that self-reflection is such a useful tool for anyone that has been through a life changing event to be able to assess and iron out any negative thoughts and allow yourself to grow as a person. I really hope to use this blog to openly and honestly share with you some of my thoughts and experiences of becoming a mum to a medically complex child. If it reaches and resonates with or brings comfort to even just one person then it is worth sharing. 

Disability is a part of life, in every community, in every country in the world, Though when we choose to become parents, having a baby with a disability is rarely part of the plan.

In the very early days shortly after Joseph’s birth, the doctors told us what they could in regards to a prognosis for Joe (which wasn’t very much). We were practically living at the hospital at the time and I would have these real low moments when I was alone and I would research Joseph’s condition borderline obsessively, I looked at forums on Facebook and saw other children with a range of outcomes from the mildest to the more severe. I terrified myself and wondered how on earth I would ever be a good enough parent to a child with all of these medical complexities? Also, as someone with a background in early years childcare, I had spent most of my adult life caring for babies and toddlers. I knew what to do with them, I knew all the tricks in the book, I was confident and ready to take on motherhood but then I was flung headfirst, thoughts reeling into this new world.

This was scary to me, this unknown new world, it was filled with what seemed like a foreign language of medical jargon and abbreviations. I worried selfishly (although I’m sure quite normally at that stage) about how my life would be impacted in a negative way. Everybody was sorry for us, we regularly received what I call ‘pity face’ from some of my less favourite medical professionals and a few other parents in the neonatal unit with less poorly babies. Don’t get me wrong, I’m not talking about the people showing genuine empathy at the more difficult aspects of the situation, that was always warmly welcomed and we received so much love and support from lots of people that I will be forever grateful for.

When I say ‘pity face’ I mean the small number of people that are unable to hide the “I’m glad it’s you and not me” from their eyes, those that clearly think it would be terrible to be in your shoes. I read stories about grieving and all of this accumulated and started to set this narrative in my mind. These thoughts would seep in occasionally through my attempts at getting on with it and I actually began to have moments of believing that our lives would be sad, limited, and somehow, less-than.

Thank goodness I was wrong, and it didn’t take me too long to realise it. Joseph showed me that this could not have been further from the truth. I started to see these beautiful, little glimmers of personality in him and this fighting spirit that never ceases to amaze me. Despite wishing we were in a different environment other than the hospital, I absolutely loved and cherished every single moment of my time with him.

It was very difficult being in the hospital, we were there from birth for almost 8 months in total before he was finally discharged. But it was never, ever difficult being with Joe. He was my calm, like the eye in the storm of chaos going on around me. He showed me that actually I could fit into this world and learn to be the type of parent that he needs. I began to wonder how this could ever have come into question in my mind. Of course I would become whatever he needs, do whatever he needs. As parents we would go to the ends of the earth for our children.

So with all this in mind I wanted to write a list that I hope will reach other parents new to this journey and offer them some comfort, or even just to give those with no knowledge of disabilities a little bit more perspective and insight into our world.

These are some of the things that I wish I could have told my past self about being a parent of a child with a disability:

1. The sadness over the diagnosis is normal, and it does not last forever.
To add for anyone that finds themselves in similar circumstances: If you continue to experience lingering feelings of grief, seek help. It is possible that you are experiencing unresolved grief and a professional can help. There is also absolutely no shame in that!

2. You soon discover that your child’s diagnosis is only a small part of who they are, it is not what defines them or gives them value.

3. You thought you would come to know unconditional love simply by being a parent, but then this unexpected little person pops into your life and challenges your heart, truly showing you what unconditional love means. No strings attached, it’s just simple, pure, unadulterated love.

4. Some people will say hurtful things. Most don’t intend to be hurtful, they are ignorant. Try to forgive them, remember you were once ignorant too. It will not serve you or your child to hold on to these thoughts. Instead, politely educate them.

5. Angry advocacy does not accomplish very much. (This has been a learning curve for me, one that I still slip on occasionally during particularly frustrating experiences – I have now for the most part managed to find a happy medium of being firm but fair).

6. Don’t be scared to acknowledge difficult days. Every single parent has them, and some days are worse than others. Add complex medical needs into the mix and the highs can be really high and the lows can be really low. This is normal. Sometimes you will have multiple bad days in a row. However, they do end, and you’ll do well to remember them and what you learned from them rather than dwelling on them. Ruminating will only perpetuate negative emotions and pull you into a vicious cycle of negativity.

7. Your child’s milestones may look a little different, but you will celebrate them with so much fervour, pride and enthusiasm that you will feel like shouting from the rooftops and telling everyone who will listen how amazing your little human is.

8. You will silently laugh every time someone says, “God gives special children to special parents,” because you know you are not special at all, you are just a parent. You will also know that disability does not discriminate, and you will meet children with additional needs that are fostered by others because God did not give them to special parents.

9. When people say to you, “I could never do it,” you will cringe inside because you know that loving your child is not difficult at all, it’s what any good parent does, and you will also know that they could do it too if their child had a disability…unless they are terrible parents, like, to any child.

10. You will find a small number of other parents along the way, in similar circumstances that truly get it. Hang on to them. They are your tribe!

11. So many wonderful new people will come into your life that you would otherwise not have met, and they will embrace and love your child more than you could have ever asked them to. (I have the continued care team that look after Joe for respite in mind with this one).

12. You will leave no stone unturned in researching for the best treatment/equipment/outcomes for your child. You will become the expert leading the professionals.

13. You will have to make a lot of decisions for your child. Some of them will be difficult decisions and you won’t always know instinctively what to do. Sometimes you will get things wrong. But you will learn from them.

14. Don’t be scared to disagree with medical professionals or request a second opinion. They are experts in medicine, based largely on statistics and trial and error. You are the expert on your child specifically and it’s important to follow your gut.

15. There will be a clear distinction between your old-self and your new-self after having a child with a disability. The new-self has a much better understanding about what matters in life, about what makes our hearts beat, about the value of all life.

16. You will put your child’s needs above anything else, sometimes to the detriment of your own wellbeing. Try your hardest to make time for yourself to recharge. If you reach burn-out you’re no good to anybody especially a child with a high level of needs. As the saying goes, you cannot pour from an empty cup.

17. People close to you will undoubtedly want to help. They won’t always help in the way that you need. It’s your job to show them how you need to be helped and then let them.

18. You will have more phone calls to make than a virgin call centre and more paperwork to complete than you could shake a stick at. This can quickly become overwhelming. Try to prioritise these tasks and save the really difficult ones for a day when your energy levels are not too depleted. Work your way through your list at a reasonable pace and remember you are one human being, not a robot. You cannot do everything at once, there are only 24 hours in a day after all. Delegate any jobs you can to other people that are willing to help if possible.

19. When needed, you will manage to find reserves of strength and resilience from the very depths of your soul, where you thought there was none left.

20. And finally…your life will be different than you planned but it will be a life that is so rich, full, and abundant with love, that you will develop a new appreciation for your life exactly as it is and all that you have that you will barely even remember your life before.

If you have managed to reach the end of this blog, thank you so much for taking the time out to read it. If you are a parent that is new to this journey, I hope that it was able to bring you some reassurance or comfort. If you are just wanting to learn more about HIE or if somebody you know is affected, then I hope you have learned something new.

I know that people can be curious about the unknown but often the fear of sounding silly or offensive puts the breaks on them actually asking. I personally feel very passionately about sharing information and educating people about what our life is like. I think it is so important to break down those barriers in order to create a more understanding and accepting society for everyone. I am always happy to answer any questions about HIE in general or about our personal experiences of it.

Please feel free to follow my sons journey on Facebook – https://www.facebook.com/JosephsAdventures/
I am contactable via message on the page for anyone that would like someone to chat to that’s been there.

With love

Steph