Hello epilepsy, our old friend

You’ve come to attack my baby again.

Totally out of the blue Kanye started at some time in the night, (I couldn’t focus on the clock) having small tonic clonic seizures- he had 6 in total by 7 am this morning. I tried to remember the last time he had seizures. Had it been 5 weeks already? No. It was only just recently he had them. I think.

I stumbled around when I got up trying to find the remote to put tv on for the kids ( by the way I seriously think manufacturers need to think about putting a ‘find remote’ button in the tv or tivo/skybox/freeview that then beeps when you push it so you can find the remote- the phone has it; the remote should too) racking my brain trying to figure out why he was having seizures.

Maybe he’s getting sick? Again ? I guess it would be falling in the 2 week zone of being sick and he was really hot last night of course I couldn’t find the thermometer- I can never find it when I need it.

Ahh!! he’s just been unwell. A light turned on in my head. Maybe it was the antibiotics? He finished them 2 days ago and while the pharmacist and neurology nurse said this type of antibiotic wouldn’t interfere with his anticonvulsants, I seriously think they do. Its why I’m so hesitant to put him on antibiotics when he’s sick; every time he’s finished them he has seizures.

Who knows though? It’s a totally unknown for now.

Of course- harper slept pretty well last night but did i? I think you know the answer! I kept hearing Kanye seize and Andre kept rolling him into recovery position.

I can’t wait for his bed to arrive. Did I mention that yet? No? Oh well the occupational therapist from beacon house came to see us and she’s put through a referral to enable nz- the people who gave us the shower chair and his mobility chair – for a new bed for Kanye.

I can’t have him falling out when he has a seizure anymore. The last lot he cut his nose on the bookshelf.
So sometime this week or next a new hospital bed will arrive that has rails with padding so is he seizes he can’t fall out. After last night I’m really looking forward to it. He needs something to hold him and apparently this bed can be lowered or raised to suit needs.

When I took Marley to school this morning the angry beast decided to show its lovely face (he’s still so handsome when he’s mad). I had asked him to stop crashing his scooter into the school picnic table- he didn’t listen.
So I then said ‘I’m going to count to 3 and you’re going to stop- if you don’t stop when I get to 3 I will take your scooter away’. He didn’t stop so I took his scooter and said I will not be bringing your scooter this afternoon, for your behaviour- we don’t crash or break things that don’t belong to us and we don’t try to break our own things.

Well, he cried and wailed.

I didn’t have the energy to placate him so I went into class put all his stuff away- he eventually came in with tears in his eyes, he looked at me and I said ‘let’s turn this around hey?’. As i helped him with his jacket he stared me right in the eyes and growled looking pretty angry but upset at the same time. So I said ‘Marley, I’m leaving now, have a good day, I love you’ I gave him a kiss and as I walked away he followed me saying ‘I don’t love you’ I continued without looking back at him, his teacher took his hand as he seemed to get the point that I didn’t care about his tanty and started crying for me not to leave. I just walked away. I honestly didn’t have the energy for it.

I walked towards the supermarket to get coffee beans, as I did- the sun was shining on my face but a bitter icy wind blew. I shut my eyes momentarily to soak the sun and wind in. I could hear the trees blowing in the wind and for a moment time stood still.
I was so tired it almost felt surreal but in that moment it was peaceful and I didn’t feel refreshed but instead more relaxed and ready for a nap. It’s one of those moments, where you almost step out of your body and just take a breath.

I’m no super woman or super mum- things get to me or on top of me, but I do try to do what is best for us as a family. I do what works for us not what people think I should do or what others are doing. We are a unique family in that we have Kanye and Marley with ptsd.

I take advice and suggestions but ultimately I’ll do what’s best for us. I do have strong opinions on some things but that’s me, when it comes to parenting I’m not just one of the crowd following along. I put boundaries and rules in place for my kids because they need it, I have routine because they need it, I create traditions for a reason. This gives them a sense of security and belonging- they area learning about themselves in a space where they will be accepted and loved. They are learning what’s acceptable and what’s not (though sometimes it feels like I’m banging my head against a wall and nothing is going in).

Lack of sleep doesn’t help me and sometimes i feel I want to walk away but that is fleeting. I love my family and while the chaotic-ness of some days is less than appealing the point is that I get through It intact; that I get the family through it intact. (Not quite sure where I was going with this- bit off topic- I’m tired. I must have put this in for a reason)

There’s always so much to remember and think about- my mind never seems to shut off and I discovered last night in one of my wakeful moments when Kanye was seizing that I grind my teeth! Not cool. I had always wondered why one of my teeth has an angle one side at the top, my upper canine has been grinding it down.

So today I blip early, the rest of my day is devoted to making sure Kanyes ok, the baby is taken care of, some of the housework gets done and most importantly I take it easy on me.

So here is a picture of the all encompassing clouds to the east and around the port hills this morning. Fluffy coldness