Having spent the vast majority of time over the last few weeks sitting at the bedside of one of my butterflies I have had the time to think, and reflect. On a number of things, including my own mental health, on hers, on family, and in my blog page. One thing that hit home was when she noticed that I had posted I wouldn’t be around as much and she actually said to me “you need to write mum, you can write about me, about this, you need to write about never giving up.” I have wondered how and where to start with this, as every time I start it hurts, the tears fall. Emotions run high, why? Because writing about your own battle and journey is on one scale, but writing about the battle and journey you witness someone you love and cherish fighting is in a whole new dimension altogether. So this is for you my little big butterfly, who is yet to see the beauty in your wings, but believe me you’re the most beautiful and strongest I’ve ever seen you yet.
How is it possible to go from thinking everything is going ok to the world opening up and you feeling like you’re sinking in a split second? Well it can happen quite quickly, with one message to your phone. A message to say your child is in hospital and you need to get there. In that moment it is possible to feel your heart stopping. I remember reminding myself to breath and snapping myself into reality before panic set in. Not knowing what had happened, or what I was going to be walking into, all I needed to do was get there. In a sense of panic somehow managing to find everything and driving in one piece (without speeding fines) to just be there with my butterfly.
The instant relief when my eyes meet the figure sitting in the corner. No eye contact, that’s ok. No physical contact wanted, I managed to get a hug in but otherwise it was alright. No verbal communications other than through a friend, okay, I’m beginning to understand, your not okay right now. You need space but I needed to know what to do.
Then I’m told to leave, covid restrictions mean only one person can stay. It didn’t take a genius to see that the person you needed was your friend, I needed you to keep talking, I needed you to know I respected your need for space, and that I was ok with it. I waited outside, I know you didn’t see the tears, but I know you knew they were there. You really are way to clever at times. That’s where the waiting began. What a wait!
You knew I was there all along, I came in when I could, but left you with your own space. Did all I could to give you the time you said you needed, I could see the frustrations building when you weren’t being heard. Hearing you describe how you felt, your plans, how you viewed your future, and seeing the sadness in your eyes. Then the disappointment when it fell on deaf ears. I wasn’t going to give up on you, I heard your words, I could hear your heart breaking. I heard your tears as you fell into your friends arms, and I made sure your voice was there! I did what I could to get you heard, to keep you safe. I wanted to keep you in my arms, it was at this point I knew it wasn’t possible.
I stayed by your bedside all night, those moments cherished when you let me near to watch funny videos online, for the odd snuggle. Giving you space when you needed, comfort, kind words or just silence. I’d have given you anything that night. Every time you refused to take something to drink my heart sank a little bit. I would have given my last breath to have seen a small spark of something in you to have the wanting for a bit of self care. I knew it would happen in time, there was a part of me that wanted it now. The parent in me wanted it now, that part in me I was talking down while telling you it was ok that you didn’t want to drink right now but there was water and juice when you were ready.
The days that followed all rolled into one, observing your smiles when you got to see your friends on FaceTime, to seeing glimpses of the brave and strong person you are inside when spending time together. Playing silly games for those few moments, including catch with an octopus (if you know you know) to seeing the sadness take over, and feeling helpless. Not knowing what to say, where to sit, or what to do. Sometimes across the room, sometimes outside. Sometimes right next to you, depending on how you were feeling and that was all ok. Knowing as a parent all I can do hope, hope that you won’t ever give up. Hope that you know I’ll never give up on you. That so many people love and care for you, and will always be around you to fight for you and stand by your side.
I don’t know what it must have felt like for you. Being there alone, with no one for company other than the nurses, and your mum for company. When all you wanted was your friends, the people you had learnt to trust the most. The feelings you kept locked up, and afraid to tell the world about. Keeping your beauty locked away from everyone, including yourself. I could see the fight happening in your eyes, yet powerless to it, there was nothing that I could do at the time to help in any way. Not knowing how to help, or what would help, if anything would help, it was all I could do to bring you your comforts, a blanket, a book, some headphones.
Every day seemed to be the same, wondering what the next would bring, what was actually going to happen? What was going to be the end goal? How were we going to move forward? What can I do to help? So many unanswered questions and no one to give us the answers. Then things started moving in fast forward, and professionals started talking, people getting involved who seemed really nice and helpful initially, it was a bit overwhelming. I was not sure what was going to happen. The conversations that were happening you were so brave, I felt an overwhelming sense of pride with your bravery, but at the same time a sense of fear.
Before we knew it, that day came, and it was time to say bye. With no warning at all, the plan was told to us and that was it. On this day when we both pushed away every emotion possible to make it easier for each other. The both of us seemed to look at each other like automatic machines, both wary of each others feelings, both desperate to say sorry, yet neither wanting to say anything.
This was the day when I wanted to bring you home, but I understood all too well that it wasn’t the best option, and being proud of your bravery I hugged you and said goodbye. Walking away the tears burned. I trusted you, and I knew you were going to be alright, yet I wanted you with me. I couldn’t and didn’t want to accept you going without me. With so much to think about and to consider all I wanted was to know you would be ok. So I waited for the message from you.
Those colourful wings of yours are so wrapped up at the moment, they are wrapped around you keeping you safe, and keeping you protected. The time will come when you can open them for the world to see. When you do people will stop and stare in awe at your beauty, your strength, your bravery and your courage. It takes so much to do the things that you’ve done, and to keep yourself going, to constantly keep fighting the battles in your head, when you want to quit and you convince yourself to never give up.
Although things can be hard, seeing your own butterfly fighting, sad, making decisions they should never have to make. Watching them grow, shine, and prove to the world how determined they are makes it amazing and makes the journey a little bit easier.
The heartache will always be there, I will always miss my big little butterfly till the day I have her back in my arms. If that will happen, However, knowing she’s doing all she can to get stronger, healthier, happier, and more resilient I couldn’t be prouder of her. We won’t ever give up.
As each day passes without you by my side, I wait for your message to let me know you are alright. I hold on to the hope that you will keep going, you are the one that said ‘never give up’ because of that I truly believe that you will be able to stand strong one day soon. I truly believe that because you are my butterfly.
Supporting your own family member, if that be a child, parent, carer, sibling, or another close loved one when they are in a crisis situation is challenging to say the least. The fear is overwhelming at times. Yet knowing that you have the love for that person, to support them in their time of need. Knowing that whatever they need to be able to regain their strength, their ability to fly again, and find the colour in their wings is so important. Despite the challenges, the distance, the fact that even when at the lowest of lows my own little big butterfly stood there and told me to write, and told me to never give up, when that is what I was telling her, just goes to show the impeccable strength she has within her. One day, her wings will be the boldest, brightest I have ever seen. Knowing that she has hope within her, means that I will never give up.