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Being a single parent, in a marriage

1
Well this is my first ever blog, something I have wanted to do for a long time but not had seconds to spare, but now I am off work with stress and think this may actually help, as I literally have no-one at all I can talk to about all the things going on in my life, no-one that doesn’t turn any moan I may have into something about them.

A bit of back history: I am a married 36 year old mother of an almost 3 year old son, whom I shall call J.  J has Downs Syndrome, which was diagnosed shortly after his birth. My pregnancy had been great,

SelfishMother.com
2
probably due to extreme happiness at just being pregnant, every nauseous wretch was a joy to behold, every stretch mark a physical sign that I finally got my wish to become a mum.  It had taken exactly 5 years of trying to get here, and this was our 3rd attempt at IUI.

J had been breach from around 26 weeks and had no intention of turning. Rather than attempt a natural breach birth or to turn him, I opted for an elective caesarean (I’m not so sure this was the easy option, I really suffered!).  However, he decided he was coming a day earlier than

SelfishMother.com
3
planned so he was delivered on Wednesday 14th November 2012.  And I was complete.

A few hours later, I happened to mention to the trainee midwife that at our 12 week scan his nuchal translucency was thicker than normal, but that this had gone by a week later and my blood test results had come back low risk for Downs. This clearly set alarm bells ringing though as soon after a team of medical professionals were swarmed around him, checking all different sorts of things, taking blood samples from him etc.  2 days later, we were whisked from the shared

SelfishMother.com
4
maternity ward into a private room, and so of course we knew what we were going to hear next. The blood tests confirmed Trisomy 21. Downs Syndrome.

I was heart broken – this is something i’ll probably go into a lot more depth about another time. It seems like a million years ago now. In a nutshell, I went through guilt, anger, sadness, jealousy and worst of all, not feeling like a ’real’ mother. Stupid I know, having a disabled child does not make you any less a mother, just a mother with different things to worry about. I felt totaly isolated. I

SelfishMother.com
5
had friends who were pregnant or had babies around the same time as me, and I was part of an internet pregnancy forum, but now I couldn’t relate to any of them. I shyed away from the world for months.

But above all, the one emotion I felt the strongest was love. My god the love for my baby son was overwhelming. I did feel extreme joy, through the tiredness, the hormones, the terrifying worry, the joy trampled them all.

The worry was that J had a hole in his heart, a VSD. He was well though, breathing ok, but he was very pale and blotchy. At around

SelfishMother.com
6
5 months of age it was decided that open heart surgery was required to repair the hole as it wasn’t healing by itself and if untreated it would lead to heart failure. Just short of 6 months of age, the little trooper had heart surgery to repair 2 holes. It was successful bar a leaky valve, which is still present today but not affecting his health.

He recovered remarkably quickly from the heart surgery. Only stayed in intensive care one night! this was such a traumatic experience though, again something i’ll talk about more another time.  5 days

SelfishMother.com
7
later we were ready to go home from hospital, when some general tests were carried out.  His blood sugar levels were unusually high. The medical staff put it down to post surgery stress and let us go home, but we had to attend our local GP to have them checked. They remained high, and so he was then admitted to hospital. After what felt like months, but was actually only a couple of weeks, we got the diagnosis of Type 1 Diabetes.  Without a doubt this has been the hardest thing to deal with. Its a life sentence, its constant, its a matter of life and
SelfishMother.com
8
death, its a full time job in itself. It controls every action, every time table, every choice we make as a family. I hate diabetes.

In amongt the chaos of all this I quickly had to learn all about Type 1 Diabetes, carbs, insulin pumps, basal and bolus, with an added sprinkling of fretting about the future. How on earth is my son with learning disabilities going to understand diabetes? this is really complicated stuff!

But I boxed up all those worries as my next major life event was about to happen. Returning to work. Yes, just 1 week home post

SelfishMother.com
9
hospital before I was back in work full time. In hindsight I should have been written off with stress then, but as I am sure many women feel, I didn’t want to let down my colleagues or sadly appear ’weak’, absolutely ridicuous to think back now.  So I went back to work as a Housing Officer full time (I’m clearly a glutton for punishment!) and dealt with all the problems of the world it seems, neighbours fighting, welfare reform, mental health, drug and alcohol, anti-social behaviour, poverty…. I could go on listing topics forever.

Thankfully I

SelfishMother.com
10
was starting to meet other mums with kids with Downs and so I felt a lot less isolated and more able to talk openly to everyone about it.  In fact some mums and I started our own charity for kids with Downs in my local area, which has done incrediby well. This has made a huge positive difference, but is also a lot of hard work.  I must admit it was nice to be at work too, having adult conversation. But then it started to become very stressful and has been for about a year and a half now.

J is absolutely the most amazing and brilliant little boy I

SelfishMother.com
11
could wish to have. He is a ray of sunshine, the easiest child I could have wished for considering all he has been through in his short life. His learning difficulties are severe.  He has no words, or sign language yet. He cannot walk yet but he is getting there, and he is different in many ways to other kids with Downs around his age. Whilst indeed he is very placid and calm and loving, he definitey isn’t ’always happy’ as many kids with downs are so often and annoyingly described. It would be weird if he was! J has huge sensory processing issues
SelfishMother.com
12
and his paediatrician (and me for that matter), are sure he also has autism or autistic spectrum disorder. We are awaiting an official diagnosis.

We are currently in the ’statementing process’ which means getting medical and educational professionals to decide which school is best for him to go to.  I went from being determined to get him into a mainstream school as I was adamant I did not want him to be segregated from the rest of society and typical children, to wanting him desperately to go to the Specialist Teaching Facility so that he can be

SelfishMother.com
13
in a much smaller class, with much more one to one assistance and without the pressure of National Curriculum and academic achievement.  So thats my current fight.

But, my relationship with my husband, a good man, a doting father, is not so great.  The 2 of us had been the strongest team, we have been through so much together over the last few years but things started to fall apart.  He’s never been a particularly great husband.  He is totally oblivious to what I go through, what I am fighting for day in day out. He works part time, from home and

SelfishMother.com
14
has a lot of time for himself.  He looks after J 2 and a half days a week.

He is a selfish father. In the respect that he feels he is entitled to hours of playing video games when J sleeps and as soon as I get home from work and at the weekends. I don’t have a problem with him having some ’me time’ but he doesn’t have any thought that I might deserve some too. He never thinks about giving me a break. I never have a lie in, despite me working full time I am the one that gets up early on the weekends to take care of Jacob. Despite me working full

SelfishMother.com
15
time, I am still the one that gets up in the nights and stay up if J’s blood sugars are high or low and needs comforting.  He doesn’t appear to worry that J may die in the night like I do.  He often calls any time that I have to myself, like an hour for having a bath (I know, how very dare I), whilst he looks after J, ’babysitting’. No darling, thats parenting! Argh!

Now you are probably thinking, well more fool you for allowing this to happen, and you are right! I have created a monster by allowing him to get away with this for so long. Its

SelfishMother.com
16
happened because I haven’t had a second to spare. Its happened because my life is really bloody difficult and sometimes its just easier to choose the life where we don’t argue, where I do everything myself because its easier and quicker.  But is has finally come to a head now and I’ve had enough.

Now I’m deciding what to do with my life. I am off work with stress. My employer has been brilliant, said they couldn’t believe I hadn’t been off before to be honest and have told me to take some time to sort out my life once and for all.

Decisions,

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17
decisions. J will go to school part time starting in January. I can’t wait, for his sake. He will be having proper, educational input from qualified people every day. I am sure J will love it and will thrive.

I’ve been off for 2 weeks so far and J has been doing so much more in that short space of time. He has learned to stand alone, so walking won’t be far off. He has been trying to say and sign the word, ’More’.  He has learned to play with toys for their purpose, he hasn’t just been stuck watching Peppa Pig or playing with beads (his

SelfishMother.com
18
favourite thing to do). I should be overjoyed, and I am, but I’m also feeling immense guilt and sadness. Would he have progressed much more if I hadn’t been working full time? Did I choose money over quality time with my son, thinking that providing for him materialistically was more important than full time love and attention? Should I ever have trusted my husband to do the things I couldn’t because I was working, have we both failed him utterly?

So what to do next?  I love my husband. Will he change? Probably not, Its not like I’ve never told

SelfishMother.com
19
him how I feel. Do I leave him? If I leave him i’ll pretty much have to quit my job or at least drop a significant amount of hours and money.  He always says the right thing but never actually does it. I don’t want to quit my job, I love it, I’m well thought of in my field. I cannot afford to drop any hours, my husband works 10 hours a week at most, and brings home less than £100 a week. I should also mention that he suffers from severe depression and anxiety, so this is why I have been lenient with the way he treats me all this time. In many ways
SelfishMother.com
20
its like having a second child. He demands a lot of attention. I don’t often have the energy for it I’m ashamed to say.

So basically I feel like everything is riding on me. I pay all the bills. My husbands money pays for groceries only. J’s medical health rides on me. My husband doesnt even know how to change his insulin pump cannula or how to programme it. J’s education rides on me – my husband wouldn’t have a clue about what I’m having to do to get him into the school unit of our choice.  Its not that I haven’t involved him, he just leaves

SelfishMother.com
21
it to me. It’s not something he would worry his pretty little head over.

J though, the light of my life. The strongest person I know. Never been phased by all the trauma he has been through. He loves his daddy so much. Daddy cuddles make everything better. I couldn’t deprive him of that.

So this must be what its like to be a single parent of 2 children. Its difficult and you can’t just give them away when it gets too hard.  Nor do I want to.  I need to find strength from somewhere.

 

 

 

 

 

 

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- 5 Sep 15

Well this is my first ever blog, something I have wanted to do for a long time but not had seconds to spare, but now I am off work with stress and think this may actually help, as I literally have no-one at all I can talk to about all the things going on in my life, no-one that doesn’t turn any moan I may have into something about them.

A bit of back history: I am a married 36 year old mother of an almost 3 year old son, whom I shall call J.  J has Downs Syndrome, which was diagnosed shortly after his birth. My pregnancy had been great, probably due to extreme happiness at just being pregnant, every nauseous wretch was a joy to behold, every stretch mark a physical sign that I finally got my wish to become a mum.  It had taken exactly 5 years of trying to get here, and this was our 3rd attempt at IUI.

J had been breach from around 26 weeks and had no intention of turning. Rather than attempt a natural breach birth or to turn him, I opted for an elective caesarean (I’m not so sure this was the easy option, I really suffered!).  However, he decided he was coming a day earlier than planned so he was delivered on Wednesday 14th November 2012.  And I was complete.

A few hours later, I happened to mention to the trainee midwife that at our 12 week scan his nuchal translucency was thicker than normal, but that this had gone by a week later and my blood test results had come back low risk for Downs. This clearly set alarm bells ringing though as soon after a team of medical professionals were swarmed around him, checking all different sorts of things, taking blood samples from him etc.  2 days later, we were whisked from the shared maternity ward into a private room, and so of course we knew what we were going to hear next. The blood tests confirmed Trisomy 21. Downs Syndrome.

I was heart broken – this is something i’ll probably go into a lot more depth about another time. It seems like a million years ago now. In a nutshell, I went through guilt, anger, sadness, jealousy and worst of all, not feeling like a ‘real’ mother. Stupid I know, having a disabled child does not make you any less a mother, just a mother with different things to worry about. I felt totaly isolated. I had friends who were pregnant or had babies around the same time as me, and I was part of an internet pregnancy forum, but now I couldn’t relate to any of them. I shyed away from the world for months.

But above all, the one emotion I felt the strongest was love. My god the love for my baby son was overwhelming. I did feel extreme joy, through the tiredness, the hormones, the terrifying worry, the joy trampled them all.

The worry was that J had a hole in his heart, a VSD. He was well though, breathing ok, but he was very pale and blotchy. At around 5 months of age it was decided that open heart surgery was required to repair the hole as it wasn’t healing by itself and if untreated it would lead to heart failure. Just short of 6 months of age, the little trooper had heart surgery to repair 2 holes. It was successful bar a leaky valve, which is still present today but not affecting his health.

He recovered remarkably quickly from the heart surgery. Only stayed in intensive care one night! this was such a traumatic experience though, again something i’ll talk about more another time.  5 days later we were ready to go home from hospital, when some general tests were carried out.  His blood sugar levels were unusually high. The medical staff put it down to post surgery stress and let us go home, but we had to attend our local GP to have them checked. They remained high, and so he was then admitted to hospital. After what felt like months, but was actually only a couple of weeks, we got the diagnosis of Type 1 Diabetes.  Without a doubt this has been the hardest thing to deal with. Its a life sentence, its constant, its a matter of life and death, its a full time job in itself. It controls every action, every time table, every choice we make as a family. I hate diabetes.

In amongt the chaos of all this I quickly had to learn all about Type 1 Diabetes, carbs, insulin pumps, basal and bolus, with an added sprinkling of fretting about the future. How on earth is my son with learning disabilities going to understand diabetes? this is really complicated stuff!

But I boxed up all those worries as my next major life event was about to happen. Returning to work. Yes, just 1 week home post hospital before I was back in work full time. In hindsight I should have been written off with stress then, but as I am sure many women feel, I didn’t want to let down my colleagues or sadly appear ‘weak’, absolutely ridicuous to think back now.  So I went back to work as a Housing Officer full time (I’m clearly a glutton for punishment!) and dealt with all the problems of the world it seems, neighbours fighting, welfare reform, mental health, drug and alcohol, anti-social behaviour, poverty…. I could go on listing topics forever.

Thankfully I was starting to meet other mums with kids with Downs and so I felt a lot less isolated and more able to talk openly to everyone about it.  In fact some mums and I started our own charity for kids with Downs in my local area, which has done incrediby well. This has made a huge positive difference, but is also a lot of hard work.  I must admit it was nice to be at work too, having adult conversation. But then it started to become very stressful and has been for about a year and a half now.

J is absolutely the most amazing and brilliant little boy I could wish to have. He is a ray of sunshine, the easiest child I could have wished for considering all he has been through in his short life. His learning difficulties are severe.  He has no words, or sign language yet. He cannot walk yet but he is getting there, and he is different in many ways to other kids with Downs around his age. Whilst indeed he is very placid and calm and loving, he definitey isn’t ‘always happy’ as many kids with downs are so often and annoyingly described. It would be weird if he was! J has huge sensory processing issues and his paediatrician (and me for that matter), are sure he also has autism or autistic spectrum disorder. We are awaiting an official diagnosis.

We are currently in the ‘statementing process’ which means getting medical and educational professionals to decide which school is best for him to go to.  I went from being determined to get him into a mainstream school as I was adamant I did not want him to be segregated from the rest of society and typical children, to wanting him desperately to go to the Specialist Teaching Facility so that he can be in a much smaller class, with much more one to one assistance and without the pressure of National Curriculum and academic achievement.  So thats my current fight.

But, my relationship with my husband, a good man, a doting father, is not so great.  The 2 of us had been the strongest team, we have been through so much together over the last few years but things started to fall apart.  He’s never been a particularly great husband.  He is totally oblivious to what I go through, what I am fighting for day in day out. He works part time, from home and has a lot of time for himself.  He looks after J 2 and a half days a week.

He is a selfish father. In the respect that he feels he is entitled to hours of playing video games when J sleeps and as soon as I get home from work and at the weekends. I don’t have a problem with him having some ‘me time’ but he doesn’t have any thought that I might deserve some too. He never thinks about giving me a break. I never have a lie in, despite me working full time I am the one that gets up early on the weekends to take care of Jacob. Despite me working full time, I am still the one that gets up in the nights and stay up if J’s blood sugars are high or low and needs comforting.  He doesn’t appear to worry that J may die in the night like I do.  He often calls any time that I have to myself, like an hour for having a bath (I know, how very dare I), whilst he looks after J, ‘babysitting’. No darling, thats parenting! Argh!

Now you are probably thinking, well more fool you for allowing this to happen, and you are right! I have created a monster by allowing him to get away with this for so long. Its happened because I haven’t had a second to spare. Its happened because my life is really bloody difficult and sometimes its just easier to choose the life where we don’t argue, where I do everything myself because its easier and quicker.  But is has finally come to a head now and I’ve had enough.

Now I’m deciding what to do with my life. I am off work with stress. My employer has been brilliant, said they couldn’t believe I hadn’t been off before to be honest and have told me to take some time to sort out my life once and for all.

Decisions, decisions. J will go to school part time starting in January. I can’t wait, for his sake. He will be having proper, educational input from qualified people every day. I am sure J will love it and will thrive.

I’ve been off for 2 weeks so far and J has been doing so much more in that short space of time. He has learned to stand alone, so walking won’t be far off. He has been trying to say and sign the word, ‘More’.  He has learned to play with toys for their purpose, he hasn’t just been stuck watching Peppa Pig or playing with beads (his favourite thing to do). I should be overjoyed, and I am, but I’m also feeling immense guilt and sadness. Would he have progressed much more if I hadn’t been working full time? Did I choose money over quality time with my son, thinking that providing for him materialistically was more important than full time love and attention? Should I ever have trusted my husband to do the things I couldn’t because I was working, have we both failed him utterly?

So what to do next?  I love my husband. Will he change? Probably not, Its not like I’ve never told him how I feel. Do I leave him? If I leave him i’ll pretty much have to quit my job or at least drop a significant amount of hours and money.  He always says the right thing but never actually does it. I don’t want to quit my job, I love it, I’m well thought of in my field. I cannot afford to drop any hours, my husband works 10 hours a week at most, and brings home less than £100 a week. I should also mention that he suffers from severe depression and anxiety, so this is why I have been lenient with the way he treats me all this time. In many ways its like having a second child. He demands a lot of attention. I don’t often have the energy for it I’m ashamed to say.

So basically I feel like everything is riding on me. I pay all the bills. My husbands money pays for groceries only. J’s medical health rides on me. My husband doesnt even know how to change his insulin pump cannula or how to programme it. J’s education rides on me – my husband wouldn’t have a clue about what I’m having to do to get him into the school unit of our choice.  Its not that I haven’t involved him, he just leaves it to me. It’s not something he would worry his pretty little head over.

J though, the light of my life. The strongest person I know. Never been phased by all the trauma he has been through. He loves his daddy so much. Daddy cuddles make everything better. I couldn’t deprive him of that.

So this must be what its like to be a single parent of 2 children. Its difficult and you can’t just give them away when it gets too hard.  Nor do I want to.  I need to find strength from somewhere.

 

 

 

 

 

 

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I am a full time mother, wife and housing manager at a Housing Association. I also run a charity group for kids with downs syndrome. My son J has DS, type 1 diabetes and probably autism. He is the best thing that's ever happened to me. I'm also an obsessed fan of Twin Peaks.

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