Hi, Leon’s Mummy here…
It’s been a while…
Leon turned 8years old a couple of months ago and let’s just say that the last couple of years have been interesting to say the least. Some of you will know that Leon was formally diagnosed with autism in November 2017 (after a three and a half year wait).
I will be honest with you, it’s been difficult to accept, though we already knew, having that bit of paper with a formal diagnosis makes it all the more real, and throws up all sorts of difficulties.
He is also attending an amazing mainstream school now. He is on roll full time, though his attendance leaves little to be desired, and he has a full time one to one support worker.
We are still having issues with his epilepsy, there may be some answers for his focal epilepsy, namely a venous anomaly in his frontal lobe, but his atonic seizures are still very much a source of confusion, and though they are less frequent currently we have occasions where they are rife and it feels like an ambulance is being called daily.
He is currently awaiting investigations into ulcerative colitis and as they need a surgeon on hand whilst he is under the GA it is taking some time to organise two separate theatre lists.
He also has a rather nasty perforated eardrum, two holes, a nasty infection, three lots of antibiotics and no a probable referral back to ENT due to hearing difficulties it has caused.
So, now you know what’s been going on… and I will be honest, there has been a LOT to deal with…when you add all of the above to the normal appointments ; Craniofacial clinic, neurology, incontinence nurse, neuro disabilities, paediatrician, occupation therapy, orthotics, wheelchair services, and specialist dentist it’s quite difficult to keep track of everything. We manage, we always have and I keep smiling and gritting my teeth through it, just getting on with it and trying to be the best Mum I can to Leon and his siblings.
But Last week…I lost it, I lost myself, my grip on real life, and above all the ability to hold back the tears. It felt like 8 years of shit had just collapsed around me and I was drowning in it. Every time someone spoke to me I cried, I looked at Leon…I cried, Another letter came…I cried, his surgery was cancelled…I cried. You get the picture right? What brought this on…We were in the hospital for a five-day telemetry EEG. Now, anybody who has ever experienced this, you have my sympathy and my empathy as it will go down as one of the worst things I have ever had to put Leon through.
So we arrive on Monday morning after dropping the other children off at school and crying because I wouldn’t see them till Friday. Leon was checked in and the neurosciences guy came down to put the electrodes on. Leon was quite good, he handled it really well. I on the other hand as a wreck. All I could think about was how we were going to keep him in a bed for five days, whether he would attempt to get the electrodes off, whether he would go into massive seizures when they dropped his meds, and how we were going to get the glue out of his hair afterward.
Mark was my hero, between him and my eldest two daughters, they made sure there was someone else there most of the time so that I could leave the room, grab coffee etc and they attempted t keep me sane. I say attempted…because by Thursday morning I had completely lost the plot. Leon woke at 4.50am. It was a bit early so we watched some tv on my laptop and relaxed a bit. By this time it was 7ish and the nurses were doing the handover, I knew that there would be nobody free to sit in with Leon while I escaped so I hung fire and waited for a nurse/ healthcare assistant to drop by. at 8.30 I hadn’t seen anyone, so I stuck my head out of the door and asked at the desk if there was someone free to sit with him. They were all too busy…fair enough, I was sure that someone would come along when they had time, there are some seriously poorly children on the neuro ward and I wasn’t about to take care away from them just so I could escape for ten minutes.
I will be completely truthful with you, by this time I was seriously cranky… I had no visitors due that morning and I hadn’t had a coffee or anything. I still saw nobody until at 9.50am the registrar came in to have a chat and as soon as he looked at me I’m afraid to admit that I burst into tears and completely and utterly broke down. I couldn’t even speak to him apart from to wail that I hadn’t even had a coffee that morning. The poor man didn’t know what to do with me so he left quite quickly and about 20 minutes later a health care assistant came in and said: “Mum, do you need a break?”
I practically flew out of that room, grabbing a coffee from the kitchen on the way out and took the stairs, all four flights of them to get to the outside and the relatively fresh air of the smoking area. It sounds like I couldn’t wait to get away from my boy, and to be truthful I couldn’t…but not because of him or anything he had done, Simply because I didn’t want him to see me in that state. I was snorting and blowing snot everywhere and sobbing like a pre-pubescent child who had just had their heart broken by their first love. It really was a pathetic sight. Do you know what made it worse? Leon wasn’t poorly. He wasn’t having surgery. I knew we would be going home the following day at some point. But at that moment in time, none of that actually mattered, all I knew was I felt trapped and helpless and I was forced to face that my little boy has lots of (unresolved) health issues. That was one of the hardest moments I have ever had in my entire life.
It suddenly came to me, that I have been ‘holding it together’ for the sake of my babies for years, when really, it doesn’t matter if they see that Mummy is having a bit of a cry, or feels a bit sad, or lonely, etc. What matters is that they are able to understand that it is absolutely okay to have a moment of weakness. That it is okay to not be perfectly strong all the time. That we are all warriors as parents, even if we have a day that is a bit difficult to get through.
So…if you are reading this and nodding in agreement. If you are going through something similar and are just waiting for the straw that will break the camels back, take yourself off for five minutes… have a coffee, have a cigarette, a glass of wine…or whatever it is that might just make you feel a little more equipped to deal with the shitstorm you are wading through. Above all else, don’t be afraid to have a good cry and get it out in the open. It does us ALL good sometimes.