Posts tagged ‘Epilepsy’

You’ve got a friend in me.

A special request this evening, from my Bronwyn, to write about the good stuff. She has a fair point. That I am broken-hearted, you know. That Baby Daddy is a complete bastard has also been covered and remains unchanged. There are still good things and good people however, and for them I am truly grateful.

While I was away, as I was for three weeks, my Father and Step Mother offered to look after Daughter Number Two for a weekend to give Baby Daddy a break. So, off she went to be spoiled in ways only doting grandparents can. Son Number One had been telling me how much he was missing his brother and sister, and as his respite house was only around the corner from my parents house I suggested he arrange to visit with Daughter Number Two while she was there. The next day I had a call from Son Number One. “Mum!” he said “We are all together!”. He had arranged for Son Number Two and his carers to also meet up at his grandparents, so the three of them could spend time together. My Son Number One, with all his issues – his ADHD, his Asperger’s, his epilepsy, his chromosomal abnormality – had arranged to get together with his two siblings, so they all could spend some time together. And then, as if that was not enough, he called me to let me know that they were all together. Perhaps it is only the parents of other special needs kids who will understand the enormity of this for me. Maybe all parents can appreciate the gift of knowing you have taught your child something valuable, something useful. My Son Number One, who lives in his one step removed from life bubble, reached out to his siblings and brought them together, and then included me in their reunion. I could not be more proud. I am proud of him, and I am proud of me, because whatever my failings my children understand family and they understand love, and that is down to me.

Son Number One’s carer had only nice things to say about him, when I met her today. Similarly, the carers who’ve had Son Number Two both this time and last, a different couple each time, are falling over themselves to care for him again if needs be. I spent two nights with Daughter Number Two before she headed off for an interstate holiday with Baby Daddy today. Both nights she slept soundly and peacefully, and left me with smiles this morning, secure in herself and in her relationships with both her parents. I think for so long I have been caught up in the day-to-day struggle for survival that I have not paid enough attention to the strengths that have been there, both in my children and within myself. There are good things here, as my Bronwyn pointed out, and I should take as much credit for them as I do for the rest.

While I was away I met with Ann O’Neill, director of Angelhands , an organisation offering support to those affected by violent crime. It was a very positive meeting for me on a number of levels. I was relaying to Ann what I saw as one of my failings; that I have taught my children how to survive and not to live. Her response was that some parents did not even give their children that. That I may not be doing as well as I feel I should be, but that teaching my children to survive was not teaching them nothing. I have watched my children over the last two days and have seen their resilience. They know they are important to each other. They know that they are loved. They know how to make the best of a situation. They don’t lie down and give up. Things may not be quite as they expected, or as they perhaps would like, but they get on with it. Perhaps some of this is in spite of me, but some of it has to be because of me and the things that I have taught them. My children’s resilience is a good thing. Their connectedness to each other, and to me, also a good thing. Meeting with Ann O’Neill, visiting the Angelhands office, hearing about the work they do – all very good things. All hopeful things that speak positively of the future.

My friend Bronwyn, a very good thing also. A definite kindred spirit. Everyone should have one. I am so lucky that I do.

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Take the Pressure Down

Things have been so full on since I returned from my stay with the Current Person of Interest. Before this weekend there has been only one day that I haven’t had an obligation outside the house. It was so bad that late last week Daughter Number Two would start moaning ‘I need to get home’ every time we went somewhere. I was in silent agreement with her!!

 

There were visits to Nana, and Baby Daddy, and appointments galore. There were shopping trips to buy new clothes for Nana which is more challenging than it sounds and which I have yet to finish. I thought that it would be a snap. I love shopping, and I’m good at it. I realised though as I waded through racks and racks of clothes that buying for Nana was a different task. Firstly, I needed to buy something wash and wear as she has been refusing to wear anything that has not been ironed, which is a little beyond the scope of the staff at the Aged Care facility. I saw for myself on Melbourne Cup day how much the whole non-ironed thing bothered her so it will be good to remove one trigger for anxiety if possible. Then I had to get a style and colour that would be acceptable to Nana, easier said than done. And of course it all had to be in the right size. It was just so terribly time-consuming!! I am only about half done, but I have managed to pull together three full ensembles, which I have to drop off to be tagged with her name during the week. Then I will head back into the trenches.

 

In the midst of all the running around Son Number One has still been having seizures. Last Thursday I was out paying bills, grocery and Nana shopping and delivering Daughter Number Two for a Baby Daddy visit when I received a phone call from Son Number One’s school to say he’d had a Grand Mal or Tonic Clonic seizure, only his second in his life. He’s had plenty of others, and in fact had a Complex Partial the day before at school also. This only strengthened my feeling that the changes to his medications were not working for him.  Anyhow, I had to race around grabbing what groceries I could- the cupboards were pretty bare so I had to do some shopping- before grabbing Daughter Number Two and jumping in a taxi for home. I walked in the door, phoned Son Number One’s school to let them know I was home, and they could bring him home now and hung up. The phone rang. It was Son Number Two’s school!

 

He had been beaten up and although they thought he was ok to continue at school for the day he had expressed a desire to speak to me!! I am very proud of Son Number Two because it wasn’t actually a fight he was in. An older student had been picking on a friend of Son Number Two and my son had told the other student to leave his friend alone. The mini thug then turned and beat my son around the head and body. Son Number Two did not retaliate though, which would have meant disciplinary consequences for him also. Anyhow, when he arrived home that afternoon he had various bruises about his person and a bruised , swollen and weepy eye.  

 

The day after was Friday! Praise be! I had to run around like a mad thing for most of the day doing things I hadn’t managed the day before. Although I still feel an inner peace, and did not feel overwhelmed, I slumped into the weekend feeling absolutely shattered. Today is Sunday and I am still exhausted even though I have been getting adequate sleep at night. We still have lots to do away from home next week, but I am determined to make the schedule a little less demanding. There are always things that are outside my control but I am going to try not to run myself ragged this week.

 

That’s the plan anyhow!

You can’t always get what you want…..

 

Sorry for the long time, no post. I was having major technical difficulties which seem to be resolved after a quick trip to the computer shop.

 

As usual things have been moving along at a cracking pace in a ‘the more things change the more they stay the same’ kind of way. The big news for this week is that Son Number One has finally received his admission booking for the MRI and other tests he has to have. This really could not have come at a better time.

 

Last week I was waiting a a bus stop on the edge of a highway with Son’s Number One and Two and Daughter Number Two (thankfully in her pram). Son Number One stuttered that he wasn’t feeling very well before freezing where he was sitting on the bus stop bench. His eyes were open but he was totally unresponsive and turning a greyish bluish colour. This ‘freezing’ is something that I’ve seen before in his seizures but on this occasion it lasted for 20 WHOLE MINUTES. I was starting to wonder if he would ever come back when he collapsed to the ground and started babbling incoherently as he tried to get his bearings. I had sent Son Number Two home with Daughter Number Two and the house keys so I was free to deal with Son Number One. Picture this; 70 odd kilos of 187.5cms tall Son Number One terrified out of his mind because he can’t remember where he is, who he is, who I am, freaking out as peak hour traffic with lots of big trucks roars past two metres away from us. Just for comparison, although I have a few kgs on him I am 165cms tall. I managed to get him to his feet in an unsteady fashion and tried to guide him towards home. To say this was a challenge is an understatement. Because he doesn’t know who I am he will not let me touch him. I was totally focused on getting him away from the main road. Getting him home would be good but getting him away from the highway was my priority. We made slow but steady progress. Halfway between the bus stop and the corner to turn off the highway a small dog being walked on a lead barked. Son Number One only heard a short sharp loud noise. He did not have the capacity to process the noise and it sent him into further terror as he took off running. Thankfully he ran down the sidewalk in the direction we were already heading, but it struck me that if he ran into the traffic there would be not much I could do about it. Trying to grab him only increases his fear . Anyway, we finally made it home. He took about 45 minutes to ‘come back’ to normal. I’m still recovering.

 

As you can see that these investigative procedures have to happen. So the appointment date should be a good thing. And it is. But it does raise some other dilemmas. I have to stay on the ward with Son Number One for all of the time he is there, day and night. Son Number Two will be perfectly fine flitting between his grandparents and his friends houses while I am away.

 

Daughter Number Two is a different matter. She has never ever been away from me overnight or for more than a few hours at a time. She still has a breastfeed when she wakes up in the morning and before she goes to bed at night. I am broken hearted at the thought of spending four days away from her, when she will not understand the reason for my absence at all. I spent hours last night just crying at the thought of it. I am sick of making hard choices. I am sick of never having any easy options. I truly do understand that the buck stops with me, that these are my children and my responsibility but it is hard being a single parent. And sometimes it is REALLY HARD. At the moment it is really hard, and I feel very alone.

 

And by the way EPILEPSY SUX THE BIG ONE!!

 

 

Saturday

I woke up feeling anxious this morning. The current person of interest and I had a minor misunderstanding last night. That is really all it was, nothing of any substance. But I had been floating around in a bliss bubble for a few days and I guess it hurts to fall back to earth. I am frustrated with myself about this. Frustrated because I feel like Maxwell Smart in the show’s (Get Smart) credits when he is walking away and all the different doors are clanging shut behind him. Frustrated because my reactions and feelings are so out of proportion with actual events. Frustrated because I don’t want to live a life ruled by fear but it is so much damn hard work not to just curl up and hide. Frustrated that my relationships and day to day life will always be seen through a prism of past betrayal.

 

On the plus side Daughter Number Two slept in until 8am. OH! MY! GOD! This is a miracle and as I couldn’t force myself to sleep until nearly 2am it was much appreciated. Just fyi, for comparison, Daughter Number Two was awake the night before from 11.30pm until 3am. Obviously she was catching up on some sleep but her timing was fab. Because it is Saturday I didn’t have to be up earlier to get the boys to school. It was very good! Decent sleep equals weird dreams and nightmares for me but I am kind of resigned to that being the price I pay. I can’t say I feel completely rested but I feel human and that’s a step in the right direction!!!

 

Also on the plus side; I had a call yesterday from a case management service. They are coming to see me next Thursday to discuss how they can help with support for Son Number One (Epilepsy, Asperger’s Syndrome, ADHD). I am quite exited by this. Like the respite I am hoping that this will mean big quality of life improvements for us all. Now if we could just get the appointment we are waiting on for Son Number One to have an MRI then things would really be falling into place. I do feel like I am managing things better on a day to day basis. I do feel like I am making progress, however slow.

 

So, I’m going to keep counting my blessings, and taking one step at a time. I’ve still got a few things to unpack and organise from my Nana’s and three kids to look after, so that should keep me busy! Cuddles from Daughter Number Two help alot too!

 

 

 

 

It never rains around here….

My Son Number One is fifteen years old today. It hardly seems possible. I’m sure it was only yesterday I was seventeen myself? Son Number One towers over me and wears men’s size 12 shoes. He looks even older than  the fifteen years old he is. Each day is a struggle for him as he faces life with diagnoses of Asperger’s Syndrome, epilepsy that has been uncontrolled for over two years now and ADHD. Son Number One looks like a young man but still needs to grow into his body. It can be difficult when others expect more of him than he is capable of. It can be difficult when he is aware he is different to others his age. For his birthday he has asked me to make him a red lego brick cake. I have given it my best shot and will let you know his reaction in a later post.

 

Number One Son is now older than his elder sister was when she died. This time six years ago Daughter Number One was helping me decorate a Thomas the Tank Engine cake for his birthday. Ten days later she died. As hard as I try I can’t shake that association.

 

My head is aching and once again I have to marvel at fate’s perverse sense of humour. We awoke to wild weather. I packed the boys off to school and bravely set out with my newly two year old to tackle last minute birthday tasks. By 9.45am I’d been informed the schools were closing, so I had to drop everything, take a taxi trip to two schools, pick up two boys and then go back to the shopping centre to continue with what needed to be done.

 

I was very disappointed for Son Number One as I’d organised a pizza party for his class to celebrate his birthday which naturally had to be postponed. He seemed to take it in his stride but it still sucked. I managed to drop and lose $30 in my travels which also sucked.

 

Anyhow, we finished everything that needed to be done and headed for the safety of home. Within half an hour of walking in the door the phone rang. It was a friend of Son Number Two, a rather unfortunate boy to whom I have an almost allergic reaction. He wanted to come over and play. HELL NO! I know my limits and this would have pushed me over the edge. No sooner had I hung up than another of Son Number Two’s friends was at the door wanting to come over. I succumbed to what was seeming like the inevitable, and as this boy is quiet and low maintenance definitely the lesser or two evils. I then lamented my obvious stupidity in not having thought to pack my kids off to friends house’s.

 

I am now finishing this post the next day as the electricty kept going on and off yesterday. After the forth time I admitted defeat. We have awoken today to grey skies with sunshine peeping through. The massive winds have stilled. I fell asleep to howling winds and lashing rain. The house sounded like it might blow away and I was hoping my windows would hold. I woke in the early hours of the morning and was actually disorientated by the quiet. The schools are again closed today, because there is much to clean up.

 

My head is still aching and after another night of nightmares I am fairly shattered. This has been such a busy week and I have felt overwhelmed. The constant low grade headache is a fairly sure sign I am overloaded. The rain has started to fall again and the sun is back in hiding.

 

As I said the electricity was patchy last night. I am hugely grateful we didn’t lose it completely!! Because of the weather the local pizza place was not doing deliveries. As I don’t drive this meant no pizza for the birthday boy at all!! We made the best of it though and I think he still had a good day. Oh! And he loved his cake!

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