Hate

Hate is a strong word. I think we should only use the word with caution. Really think about what we are saying before we say it. But what I’m about to say I mean with every fibre of my being. I hate ARX and I hate epilepsy.

I hate watching what the seizures do to my beloved, precious boy every single day. The way his body stiffens and twists, how he cries sometimes before, during and after. How his lips briefly go blue. How it can take him such a long time to unravel and to come out of it. The fact that sometimes we have to medicate some of his seizures and in effect sedate him. I hate that we have to put all these medicines into his little body every day.

I hate the fact that I feel relieved and lucky that he breathes independently and is fortunate not to have oxygen or a tracheotomy.

I hate watching him snooze peacefully, then be ripped out of his lovely sleep by a seizure.

I hate the damage the seizures must do to the good parts of his brain. I hate the fact that he has seizures that we cannot see. Seizures going on his brain that don’t show physically.

I hate that his epilepsy has been described by his doctor as ‘off the scale’ and the moment a doctor or nurse unfamiliar with him see Samuel move or twitch, they want to medicate him.

I hate the fact that these seizures don’t give his brain a chance to develop and allow him to develop and grow intellectually.

But despite all this, everyday I feel so full of love for my boy, my husband and the little bubble we seem to have created in which we feel safe and normal. I love looking at my beautiful boy and stroking his hands, squidging his cheeks and just generally admiring his gorgeousness. I love Samuel so very much and no damn epilepsy will ever dampen that.

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Getting it right

Samuel and I spent the day today with our friends at Julia’s House. I’ve come home feeling knackered, which is probably because I did a lot of nattering (I am a chatterbox to be honest) and having to think even more about Samuel’s epilepsy and trying to explain to the carers and nurses about how we medicate Sam’s seizures.

I’ve talked before in my post Early days about the difficulties in explaining just when is the appropriate time to medicate Samuel with Midazolam (his emergency medicine) and when you just give him a good cuddle and ride it out. It isn’t a perfect science and I’m sure I get it wrong sometimes but it can be so difficult, especially as he really does live up to being a tricky customer!

Samuel started off today really snoozy but then as the day went on he became more unsettled. I was hoping that it might be his teeth giving him agro so I gave him some paracetamol as his cheeks were really pink but that didn’t make much of a difference. He progressed to an afternoon of on and off clustering. If I hadn’t have been there he would have had Midazolam, we all knew that.

But the problem is the grey area within his protocol.  There are some seizures you count, you look at your watch and mentally log, others you just give him a good old cuddle. But should we be ignoring those seizures? Are we pushing the boundaries too much? I think everyone understands that by nature Samuel is a twitchy boy and those twitches (which are in actual fact seizure activity) are inevitable due to the set-up of his brain, but it’s the other things he does, the seizures. How can I expect people to ignore some but count others? We just don’t want him medicated every day which realistically could happen. Samuel has seizures EVERY day.

I think the nurses, well one in particular, could see the difficulty I have and advised me to talk to Sam’s doctors about it to clarify his protocol. The ridiculous thing is I do agree with the written protocol, in fact I co-wrote it with the doctor over the phone BUT it’s about how it works in practice. She said that she felt that it is such a huge responsibility on my shoulders to make sure that they get it right when I leave him in their care.

You see I love Julia’s House, I really do. The whole place, the people, I just love it there. I cannot explain how amazing the nurses and carers are, how kind, lovely and understanding they are. They make me feel normal. Nothing I tell them phases them. I doubt there is much I can tell them that would surprise them or they hadn’t heard before. They must be the best childminders in the world!!! And I can’t begin to tell you just how lovely they are with Samuel. Right from day one, the way they talk to him, stroke him, cuddle him. As his mother who loves him with every grain of my being, watching these people hold him so gently, look after him with so much care. It just makes my heart swell.

If it wasn’t for this situation with his epilepsy and emergency medication I would have left him there on his own after the first day. I trust them, I really do.

We did end up giving him Midazolam in the end. He did need it to break the cycle he’d got himself into. But although it’s always disappointing when he has to have it, I really did feel we achieved something today. They saw what he does. They witnessed what his epilepsy can be like and they saw how much I want him to be awake and alert as much as possible. They saw the difficult situation I’m in, the hard decisions I often have to make about medicating him and I really felt that they were there behind me, supporting me.

Why is no-one cuddling me?

The nurse was keen to make me see that it isn’t a test of me. It’s not about right or wrong or whether we are looking after Samuel correctly. It’s about us all being in the same team and understanding how we can care for Samuel together.

We will get it sorted. We must. I’ve already put forward some dates to have community sits which is where carers come over to the house to look after Samuel. I will be home, just for the time being, but do have every confidence in them, Samuel and me, that we will get there.

There is a sign up in Julia’s House that says ‘Julia’s House is a happy place’ but it is more than that. Julia’s House is a happy, loving, caring, supportive, cuddly, fun, positive, sunny, friendly place. The sun ALWAYS shines at Julia’s House.

Story of survival

When Samuel was in NICU we would regularly have a nurse called K. I really liked her, she had a great sense of humour (which really helped given the situation) and she was very kind and seemed to be very fond of Sam.

I think we’d been in NICU two or three weeks when the head consultant Dr MK asked us to have a chat with him. He told us that they were becoming increasingly concerned about Samuel’s condition and the fact they were finding his seizures so hard to control. At that point he was on a Midazolam infusion and totally out of it. Dr MK told us that we needed to prepare ourselves for the possibility that Samuel would not come home. Ever. We would either lose him to the seizures or that they would be so impossible to treat he would have to be permanently sedated and remain in hospital indefinitely. As you can imagine our already shaky world crumbled.

My husband got angry. Not at the doctor but at the unfairness of it all. At the women, pregnant women he saw outside the maternity unit in their dressing gowns smoking. We were both very emotional. We went back out to Samuel’s cot and K sat with us for quite a while before telling us her story.

She hesitated at first, I think she was unsure whether it was the right thing to do. But I’m so glad she did. She told us of her baby boy J, who had been born 24 years previously. He had a rare brain disorder, I can’t remember if she told me what it was or whether he had a diagnosis,  but she said it was bad. His brain was in a worse situation than Sam’s. He also had a severe cleft palate and in effect was missing his top lip. She was allowed to take him home, but everyone knew it was for ‘family time’ before he passed away. It was almost certain that her boy wouldn’t make it. If I remember correctly, he lived for around 8 months.

As she told me this story I kept staring at her thinking, but how are you here, walking, talking, how have you made it through? But the point is, she did. Her experience led her into nursing, she was a hairdresser when she had J, but after what she went through she wanted to help other babies, so she became a neonatal nurse.

K told us that things we said in the meeting with the doctor, the things that my husband had got angry about, she had said the same things herself all those years ago. She told me that I must not feel guilty, however hard it is, I must not feel guilty. She said that I must always remember that I brought Samuel into this world and whatever happens I will give him a life full of love.

Throughout our time in NICU when things got really bad and I had really dark thoughts I kept reminding myself that K’s been through this and she survived. She somehow made it through and she had worse odds than we did.

The fact that she wanted to help other poorly babies made me admire her even more. I don’t think I’ve got it in me to do that. Being a NICU nurse you see just how damn cruel nature can be. Our friend Auntie C, also a NICU nurse, has told me many stories of children she’s nursed and the different conditions. I don’t think I could deal with that cruelty every day.

When we finally got Samuel home, my husband and I made a deal. That we would truly treasure Samuel. We would enjoy every moment and celebrate the boy he is and try not to mourn the boy he will never be. We made that pact in memory of J.

Although he has surprised the doctors that he’s still here and seems to be doing ok, we know that we will outlive Samuel. He wont make old bones. But we’ve got this far and he is a fighter.

I know there will be parents reading this that have lost their babies. Samuel is 16 months and maybe their little ones didn’t make it that far. But I promise each and every one of you that we hold and squeeze him so tightly every day and know how lucky we are to still have him here with us.

Whatever happens in the future, somehow we will survive. We have to, as Samuel will always be here in our hearts.