It's been a very long time since I have written in this blog.
I have missed writing but I have gotten bogged down in this life of mine and sometimes felt that I had nothing to say and the things I have had to say would probably scare you and fear for my sanity!
The last two years have been such a struggle for me emotionally. It began with Jack having to go onto CPAP at night and dealing with the endless struggles that his disability throws up daily and it continues with the ongoing physical issues that Holly is experiencing.
Looking after one child who is unable to walk is tough but looking after two, well that's a whole new level of stress.
Holly can walk, but only short distances before the pain and exhaustion sets in. At times she has had to use a wheelchair and she carries sticks, which is her new normality. Life changes perspective when you are forced to sit in a wheelchair and both of us have struggled with the dynamics of life from that perspective.
I have watched one child lose the ability to walk, I don't want to watch another go through the same!!!
Not only is she struggling to just move but at the age of 21, feeling like you have the body of an 80 year old is tough. Add to that is the complete lack of understanding that most people have as many people just assume she is lazy. Along with this new development in her life she is dealing with weight gain due to her lack of mobility so she is self concious which in turn has heightened her anxiety levels and she is a melting pot of stress.
As you can imagine, that isn't easy to watch either. I want to take it away from her, but I can't and that fills me with a sadness I can't even describe.
We partly have a diagnosis: degeneration in both hips, severe degeneration in the right hip. She has an appointment in Edinburgh to see an Orthopaedic Surgeon in November so we will have a better picture of what can be done then.
In the meantime, I am trying to keep my head above water and keep busy busy busy.
Having 3 dogs helps to get me out and about. The smallest one, Koda, has learnt to steal food and I have now named him the Food Ninja.
In the last two months he has demolished a packet of polos, half the harvest from my apple tree, a jam sandwich, toast, a tuna mayo sandwich, half a baguette and 3 biscuits! A portion of lasagne was saved in the nick of time and I had to chase him down the hall and rugby tackle him to the ground to grab my other packet of polos before he demolished them too. Luckily he has had no ill affects but his breath was lovely and minty!!!
I have had a wood burning stove and a new fireplace installed in my living room which then prompted me to start stripping the wallpaper off....4 months ago! My living room currently has no wallpaper, no curtains but has a very lovely fire!!!
That should all change this weekend when the painter and decorator comes to give it a lick of paint and bring it kicking and screaming into a more modern look. Photos of before and after will follow...I promise!
Jack is now 17 so we are going through the transition from child services to adult services which is making me quite anxious but it has to be done. As of this month, he only has 5 more weekends in the respite unit he has been using since he was 5. Also all his medical needs will have to be transferred which fills me with dread as it means moving back to hospital services in Aberdeen. I know it will be different as it will be not be the children's hospital but I have major trust issues with Aberdeen so I fear it will not be an easy change for me.
Thankfully Jack has had his Vagul Nerve Stimulator replaced a month ago. The operation was a bit tricky and my boy was up to his usual shenanigans and whilst under anaesthetic his blood pressure dropped to 55/15 and he required 2 shots of adrenaline and water boluses to stabilize him and that was before they had even begun the operation! He then spent the night in intensive care as he required some help with his breathing so they put him on BIPAP to help with that.
He is slowly bouncing back but I am not sure that I am!
I have also done a course which has taken up a lot of my time but I have met some lovely people and I hope to keep up with that albeit at a slower pace.
Lastly my Auntie Marilyn, my mum's sister died which came as a huge shock to everyone as it was totally unexpected. I was completely floored by that and feel like I have lost another part of my mum.
The funeral was in her home town of York so four of us went down for the funeral. We all went in my car. The only problem with that is I only have 3 seats and space for a wheelchair so I told my dad that if he wanted us all to go in my car, he would need to get a wheelchair that I could clamp in the back as the fourth seat. He said he would.
True to his word he did and my poor wee sis had the pleasure of the best seat in the car.....not! She couldn't see a damn thing out of the windows and she kept sliding down every time my dad had to break hard, which was a lot, believe me, as I am sure he thought he was a rally driver.
Brenda (wee sister) and I were amazed that his partner Bunty didn't flinch every time he was hard up another car's bum or if he had to pull back in when it proved not safe to overtake. Meanwhile Brenda and I are were in the back doing starfish impersonations with arms and legs waving!!!
Once we arrived in York and regaled the family of our adventures, my cousin Nicola told us to follow her car to her house, where we were staying. They were parked at the back of the house and we were parked at the front. My Uncle Alan came out to see Brenda sitting in the wheelchair inside the car and we were sitting chatting with the back door slid open, no seatbelts on when suddenly my dad took off in hot pursuit of my cousin who had just pulled onto the road up ahead.
I hadn't realised this so one minute I was talking to my uncle, the next I was yelling at my dad as I nearly fell out the car, frantically trying to shut the door and get my seatbelt on and waving like a mad thing at my Uncle who was left standing at the side of the road!
It was a riot!!! My sister was totally mortified at having to sit in the wheelchair but I reckon my mum and Auntie Maryl, if they were looking down on us, would have laughed their heads off!
I have missed writing but I have gotten bogged down in this life of mine and sometimes felt that I had nothing to say and the things I have had to say would probably scare you and fear for my sanity!
The last two years have been such a struggle for me emotionally. It began with Jack having to go onto CPAP at night and dealing with the endless struggles that his disability throws up daily and it continues with the ongoing physical issues that Holly is experiencing.
Looking after one child who is unable to walk is tough but looking after two, well that's a whole new level of stress.
Holly can walk, but only short distances before the pain and exhaustion sets in. At times she has had to use a wheelchair and she carries sticks, which is her new normality. Life changes perspective when you are forced to sit in a wheelchair and both of us have struggled with the dynamics of life from that perspective.
I have watched one child lose the ability to walk, I don't want to watch another go through the same!!!
Not only is she struggling to just move but at the age of 21, feeling like you have the body of an 80 year old is tough. Add to that is the complete lack of understanding that most people have as many people just assume she is lazy. Along with this new development in her life she is dealing with weight gain due to her lack of mobility so she is self concious which in turn has heightened her anxiety levels and she is a melting pot of stress.
As you can imagine, that isn't easy to watch either. I want to take it away from her, but I can't and that fills me with a sadness I can't even describe.
We partly have a diagnosis: degeneration in both hips, severe degeneration in the right hip. She has an appointment in Edinburgh to see an Orthopaedic Surgeon in November so we will have a better picture of what can be done then.
In the meantime, I am trying to keep my head above water and keep busy busy busy.
Having 3 dogs helps to get me out and about. The smallest one, Koda, has learnt to steal food and I have now named him the Food Ninja.
In the last two months he has demolished a packet of polos, half the harvest from my apple tree, a jam sandwich, toast, a tuna mayo sandwich, half a baguette and 3 biscuits! A portion of lasagne was saved in the nick of time and I had to chase him down the hall and rugby tackle him to the ground to grab my other packet of polos before he demolished them too. Luckily he has had no ill affects but his breath was lovely and minty!!!
 |
| The Food Ninja....picture of innocence! |
That should all change this weekend when the painter and decorator comes to give it a lick of paint and bring it kicking and screaming into a more modern look. Photos of before and after will follow...I promise!
Jack is now 17 so we are going through the transition from child services to adult services which is making me quite anxious but it has to be done. As of this month, he only has 5 more weekends in the respite unit he has been using since he was 5. Also all his medical needs will have to be transferred which fills me with dread as it means moving back to hospital services in Aberdeen. I know it will be different as it will be not be the children's hospital but I have major trust issues with Aberdeen so I fear it will not be an easy change for me.
Thankfully Jack has had his Vagul Nerve Stimulator replaced a month ago. The operation was a bit tricky and my boy was up to his usual shenanigans and whilst under anaesthetic his blood pressure dropped to 55/15 and he required 2 shots of adrenaline and water boluses to stabilize him and that was before they had even begun the operation! He then spent the night in intensive care as he required some help with his breathing so they put him on BIPAP to help with that.
He is slowly bouncing back but I am not sure that I am!
I have also done a course which has taken up a lot of my time but I have met some lovely people and I hope to keep up with that albeit at a slower pace.
Lastly my Auntie Marilyn, my mum's sister died which came as a huge shock to everyone as it was totally unexpected. I was completely floored by that and feel like I have lost another part of my mum.
The funeral was in her home town of York so four of us went down for the funeral. We all went in my car. The only problem with that is I only have 3 seats and space for a wheelchair so I told my dad that if he wanted us all to go in my car, he would need to get a wheelchair that I could clamp in the back as the fourth seat. He said he would.
True to his word he did and my poor wee sis had the pleasure of the best seat in the car.....not! She couldn't see a damn thing out of the windows and she kept sliding down every time my dad had to break hard, which was a lot, believe me, as I am sure he thought he was a rally driver.
Brenda (wee sister) and I were amazed that his partner Bunty didn't flinch every time he was hard up another car's bum or if he had to pull back in when it proved not safe to overtake. Meanwhile Brenda and I are were in the back doing starfish impersonations with arms and legs waving!!!
Once we arrived in York and regaled the family of our adventures, my cousin Nicola told us to follow her car to her house, where we were staying. They were parked at the back of the house and we were parked at the front. My Uncle Alan came out to see Brenda sitting in the wheelchair inside the car and we were sitting chatting with the back door slid open, no seatbelts on when suddenly my dad took off in hot pursuit of my cousin who had just pulled onto the road up ahead.
I hadn't realised this so one minute I was talking to my uncle, the next I was yelling at my dad as I nearly fell out the car, frantically trying to shut the door and get my seatbelt on and waving like a mad thing at my Uncle who was left standing at the side of the road!
 |
| Best seat in the car!!! |
It was a riot!!! My sister was totally mortified at having to sit in the wheelchair but I reckon my mum and Auntie Maryl, if they were looking down on us, would have laughed their heads off!
Oh, Lynne, it's been a time and a half for you and Holly and Jack. The transition stuff is scary sugar and the thought of moving into adult medical services.............. Peter has no major health problems, but I have had at least one consultant thinking I am a neurotic mother.
ReplyDeleteBut, humour is what keeps us going. I promise to try and write you another letter soon!!!
I'm so sorry. It's good you can keep a sense of humor. I often think of my parents looking down on us from heaven and enjoying what they see.
ReplyDeleteLove,
Janie
I am laughing my butt off at that vision of the car fiasco! Your sense of humor is just amazing and that's how you get through all of this stress. I pray that something can be done for Holly's hips. She just doesn't deserve that kind of pain at 21. Hugs to you! xx
ReplyDelete