“We don’t know why, I’m sorry”. Have you ever heard these words, or similar?
Our son had the most horrific time in 2020.
He had four surgeries (one planned, three emergencies), several trips to A&E, multiple admissions to hospital, numerous brain CT’s and countless other tests.
He has spina bifida, hydrocephalus and epilepsy.
As part of these conditions, he has a VP shunt which controls his hydrocephalus although it always has the potential to malfunction.
His three emergency surgeries were to repair a malfunctioning shunt.
His epilepsy is wildly unstable.
In saying that, the type of seizures Jacob has don’t cause his brain to be starved of oxygen, which we are incredibly thankful for.
He actually has non epileptic seizures (NES) along with epileptic.
His epilepsy is assumed to be medication resistant and he is currently on three different drugs to try and control it.
While they don’t think it starves his brain of oxygen, we are awaiting an MRI to see if there is structural damage/changes within his brain due to how often he has seizures.
We also have to give him emergency rescue meds if it is prolonged.
Why am I telling you all this?
Well, the point is, our child has changed.
My happy, easy going, enthusiastic and sociable little boy has just changed.
It is so hard to put into words, but he has had a massive regression in almost every aspect of his life.
His paediatrician has known us since Jacob was a baby and I pleaded with her to tell me why our child has changed so drastically.
She very gently said “We don’t know why, I’m sorry”.
That was literally one of those moments my knees gave way and I just had to sit down and breathe through almighty pain.
I’ve also been told that I get “tied up with semantics”.
That’s a fair comment, but a formal diagnosis allows access to the right support.
They have now said Jacob has a learning disability (LD).
As a trained LD nurse, I don’t understand this because he was assessed as being of “normal intelligence” (no insult intended, that’s their language not my own) before he began preschool.
LD is usually present at birth or would at least gradually become apparent.
This has been a sharp, quick and steep decline in how Jacob is able to cope with and understand his world.
When I asked if they feel he has brain damage, I was gently told that the outcome to both is the same and we have to change a lot of things in his life.
Knowing WHY something is or has happened means you can start to formulate a plan to address any issues.
You can also start to come to terms with it in whatever way you need to.
NOT knowing why is like being trapped in limbo, and is totally unbearable at times.
So what do I do?
I give myself permission to do whatever I need to feel better at that time.
Honestly, this can literally be asking my hubby or mum to watch the kids so I can take the time to go upstairs, change into PJ’s and hide under my duvet.
I have Multiple Sclerosis as well, so rest is vital to making sure I am able to function, especially when I am under a lot of stress.
Sometimes though it really is a case of trying to hide from it all.
I also give myself permission to openly and actively challenge his medical team to keep trying to find answers so that we can help Jacob as much as possible.
While we are in this limbo, we continue to love Jacob fully and unconditionally.
We will always accept him for exactly who he is, not for who we want him to be.
He is the most incredible little boy and we are so deeply in love with him!
I try to focus on making memories as a family because all three kids (triplets!) deserve a brilliant childhood no matter what hurdles we have to get through to make that happen for them.