I started writing this blog as something to keep, like a diary entry if you like. It’s messy, no structure etc, but after reading through it, I thought it might help somebody or someone may relate to it. So forgive me for the chaos, but I thought I’d give you the key to my mind and see a typical day through my eyes.
This morning Zachariah and I got in the car and headed out for an early physio appointment. I caught eye of Zachariah looking so happy in the back of the car as he laughed, danced and sang the whole journey. He was content, happy and loving life. I smiled. I took in the moment as it fixed some of the broken pieces in my heart and distracted me from the fear I had built up for today’s therapy session. My ultimate goals for Zachariah are to be happy. To be healthy. To receive countless opportunities. To be included. Looking at him in the little moment, his goals were being achieved. He couldn’t have smiled wider if he tried, he couldn’t have giggled harder, nor sang any louder. Zachariah was good!
Arriving at physio, we were both in good spirits. Yes my brain was working 100 miles an hour like always, but that moment in the car had given me a break, I was able to switch off and smile. I was able to feel the blessings rather than have them clouded with worries and anxieties. His therapist started to check Zachariah’s range and straight away noticed how tight he was, particularly in the ankle. Now, I am a realist, I know that Zachariah is extremely complex and has countless difficulties and issues, I know that his muscles are tight but there’s nothing like hearing it all out loud to bring you back, out of your bubble. That reality was that his splints aren’t meeting his needs, they need adjustments, the medication had failed due to reaction and the exercises weren’t happening as much as they should due to busy lifestyle. Professionals had left us with this struggle (not his therapist), and so it was forgotten almost that there was such a huge need that wasn’t being entirely met. I had chased said professionals and got nowhere. But due to the overload of things to get done and chase I had also let things slide. So together, the therapist and I worked out a plan forward. Amazing! But also overwhelming.
The amount of pressure we feel as parent /carers is just enormous! It’s unbearable most of the time. My mind began filing all the new information in, tried the reason with it and plan how to action it all. I started to doubt my previous decisions, wondered how my son had deteriorated so much. We seemed to be going backwards. Then his therapist started to tell me how we’d done everything, that I was doing an amazing job, and assured me that priorities aren’t always going to be physio, it is just a small piece of a picture picture. That was it. The tears came falling down. I was overwhelmed once again. Her words were too kind, I didn’t feel worthy of them. But also pointed out to me, just like the spinal appointment, that my son is so complex that whatever we do, he’s still going to struggle. I started to wonder what the point was. Why listen to him scream whilst I do his daily physio when Zachariah is most happy just chilling in the back of the car or in the garden. Isn’t that what I should prioritise? But his therapist reminded me that without it, he would be so much worse. But of course I couldn’t see how he could get any worse, when everything seemed so bad. Hips are dislocating, Scoliosis is worsening, reflux is still bad, epilepsy is uncontrolled, vision isn’t improving. And so it got to the point where I thought this just isn’t enough. I need to find out if there is more help out there. I want a full MOT done, going right back to the beginning to see if something more can be done to help him. Botox was mentioned, I started to think about second opinions.
My mind began suctioning all the information in until I became overwhelmed again! Where do I begin? Who do I start with? Who will support me? These questions ran loose in my mind. I then began to deflate. It’s all gotten too much again. Why is it the tools we put into place to keep on track fall down as soon as we hit a barrier? Why do we find ourselves lost, confused and hopeless once again? I feel we are let down by services not working together, by things taking so long to the point where the parent is chasing, things are missed, funding cuts mean that therapy isn’t given as much as the child needs. But that’s a whole other story. It becomes draining having the up and down approach to parenting. I can’t keep up with my emotions, so who knows how my husband copes with me! My reasoning had disappeared as I found myself falling low again and unable to breathe.
Being a parent/carer to a child with complex needs is such a huge role. It’s parenting with extra roles, such as carer, advocacy, nursing, organiser etc. I feel my mental health has been effected so much that there’s a fine line between happiness and sadness. I am losing myself. I feel unable to commit to things and have become very indecisive when making simple choices in life.Friends especially are left confused by my quick mood changes and last minute plan changes. I am so overwhelmed every single day with a long to do list, appointments, therapy with the rest of my responsibilities, such as running the house that it robs me from truly enjoying life with my son. I want to fix things, I want to do a million and one things at once, I want more control over the care he receives. It’s frustrating knowing exactly what your son needs and not getting it, and then knowing that it may only help a little bit, but that little bit is your hope.
Now I won’t say that this one therapist session brought all this on, it was a build up. Have I taken on too much again? Or was it reasonable to have had this blip today? You see how many questions I ask myself? Questioning my every move and doubting myself all over again.
As the day was almost over, Zachariah was still smiling, he was getting excited watching his Cbeebies as we settled down for bedtime. I looked over at him and entered back into that moment we had experienced in the car. I saw my beautiful, happy boy once again. He was content. I promised him I will never stop fighting for him, nor will I stop trying to make his life easier. I told him that mummy will have overwhelming days, but she will get through them. He laughed. No one knows what he understands, but I know for sure that he knows mummy’s presence and her mood. Being back in this moment connected us once again. There is time for fighting, worrying, fixing, being sad. But there is even more time for happy moments that need your 100% attendance. Today I want to celebrate the happy moments within the overwhelming chaos and worries of life. I want a fresh start and will continue fresh starts for as long as they are needed, as I know that there will be more days like today, days which feel too hard to get through. I will come out of them stronger and more feisty to ensure my son gets the best out of his life.