Dear Daddy

I can’t tell you that I love you. But I do. I can’t show you that I think you are an amazing Daddy. But you are.

When I was born you were the first person to hold me and to cuddle me. You were the first person to talk to me. You introduced me to Mummy and from then on we were a team.

For all my eight weeks in NICU you came in all day, every day with Mummy and sat by my incubator/cot looking at me, stroking me, cuddling me. When it was time to do a nappy you were always keen to do it (I don’t think Mummy was as enthusiastic as you), anything to help me. You would always be asking the doctors questions, you were always fighting for me. You’d do anything that needed to be done. You were my voice. My spokesperson. You’d question what needed to be questioned and were never afraid to step in, change the plan or just say no. And you still do this for me, even now.

You and Mummy always say that Topiramate and Dr W got me home. But I think it was you. You never lost sight of wanting me to come home and I think you passed on some of your fight to me.

Mummy talks to me a lot about you when you are at work and we both always really look forward to when you come home. I love that when you come in the door, often before you’ve even taken your coat off, you come over to me and give me a kiss and cuddle.

Mummy always says how lucky she is that you are so wonderful and always ready and willing to share the Samuel-jobs. You share everything and help with everything. It must be such a relief to Mummy when you are home for the school holidays – I love it because I get so many more Daddy-cuddles!

Everyone knows how much I like cuddles, but the best cuddles come from you. When you hold me in your arms I feel so warm and safe. So content. I love it when you sing to me and the way you make up funny nicknames for me.

Mummy might be my nurse and main carer, but you are what helps her do such a good job. You give her the strength and confidence to do what she does. Mummy thinks this might sound cheesy but you are her rock.

You are my hero. My champion. My buddy. My friend. My everything. And I love you very, very much.

With lots of love, Samuel xxx

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Having another

Recently it seems that there are a few bloggers out there, namely Pressure Support, Little Mamma Said and SwanFreddie who have been writing posts that could have come straight from me, it is like they are reading my thoughts. One particular blogger, Hayley from SwanFreddie has particularly struck a chord with me with her post Grief and more recently If only it was a simple decision.

This recent post of Hayley’s looks at her thoughts and feelings about having another child. Hayley’s post echoes a lot of what I’ve been thinking about lately.

As I mentioned recently, we met with the genetics doctors to discuss our options for me falling pregnant again. We are in a fortunate position in that we have a diagnosis, we know I’m a carrier and how to avoid passing ARX on again to another child. We have a lot to think about as a couple about the way in which we want to have another child.

But it’s the practical stuff I can’t stop mulling over. Other ‘normal’ couples, when discussing more children, talk about whether they can afford more, have they got room, can they face sleepless nights again and potty training?

We’ve got to think about all the practical things in quite some detail to make sure that we make the right decision about having another child. We are limited with people to look after Samuel – we literally only have Auntie C and Julia’s House carers (and the latter is organised, booked in childcare). So if I was poorly during pregnancy, when I come to give birth, if the second child is poorly and so on, we have to think about our options for who would look after Samuel.

Samuel will never be able to walk. He will always have to be in a buggy, wheelchair or be carried. I will need to think about that, will it be practical to always put second child in a baby carrier/sling  when we are out and about – what about when they are bigger but not properly walking? Would I be able to carry a big, heavy Samuel if I was pregnant?

Will it be fair for second child to have to come along to hospital appointments and what we do as a family will always be heavily dictated by Samuel and his condition.

What about Samuel? Will having another child mean I will be giving him less, less time, less attention, less of me? I’ve got a big heart bursting with love, so he will never lack there.

I hear comments from people about negotiating with husband about wanting more children and I look at them and can’t imagine that decision being so simple.

If we go down the adoption route, we will have to think about all of this upfront. We will have to prove to the adoption people that we can do this. We will have to prove that we will be able to juggle it all while providing a stable home and a loving family. Although neither of our families or friends (other than Auntie C) look after Samuel (because they do not feel confident to do so despite our offers of ‘training’), they have made noises that they would help us with the second child. They would step in and provide practical help rather than just the (very lovely) cuddles they give Samuel and the numerous pats on the back for us.

Can I be honest with you? I do envy people who not only is the decision for them to have another child quite straightforward, they seem to be able to have another child quite easily and then also go on to have two, three, four more. I love being a mother and Samuel’s Dad is an absolutely fantastic father and I have this dull ache in my heart and stomach for another child.

I believe we can do it though. I’m sure we can. We have so much love to give another child. It will be tough, very tough juggling it all. But surely we can handle it? Or could this be the most craziest idea we’ve ever had?

DEAR READER, I realise this may be the only ‘special needs’ blog you read and maybe you only read it because you are fond of Samuel and I. If this is the case, I ask a special favour of you. When I link to another blog post, please do pop over and have a quick read as what the other blogger has written may give you that extra insight into my world and my thoughts. You don’t have to of course, but it might just help you understand me and my ramblings that little bit better.

Is the impossible possible?

A while ago I wrote a post called Today I cried. I’d had the realisation that to have more children I would have to go through the process of IVF or adoption. Both filled me with fear. The fear of IVF failing. What if it doesn’t work and I still end up passing on ARX to another child? What if something completely different goes wrong?

Before I’d written that post I’d phoned up the social services department to discuss our options for adopting a child. The conversation was depressing. I realised that because of Sam’s medical problems and needs, the adoption process for us would be very different for us compared to other people and we would have so much to prove.

I wrote that post because I was frightened that we may never have any more children. I felt guilty for having this defect inside me that can scupper our chances of expanding our family. I felt guilty that I wanted to have more children. Samuel is our world. We will always adore him and do everything for him. We will fight tooth and nail for him. All the way. That will NEVER change. But I have this dull ache of guilt in my chest and in my gut that I just can’t shake off.

But today we met with the genetics expert to find out about our options for having a child. For me to carry the child. We hadn’t seen this doctor for a year since she told us about Samuel’s diagnosis and she told us that we would probably only have him for months. So it was nice to show her that he was still here, still fighting. Still gorgeous.

So the doctor went over some of the bits we already knew about ARX but she really shocked me. We were always on the understanding that if we had had a girl they would be like me, just a carrier without symptoms. But either new information has been discovered or she’s done better research, but apparently there would be a 1 in 3 chance a girl could be fine (like me), 1 in 3 chance that the girl could have mild learning difficulties or 1 in 3 chance they could be as severe as Sam. So I in effect could have had learning difficulties or be as limited as Sam with a short life expectancy. That came as quite a shock. As females we have two X chromosomes, well the defect is in one of my X chromosomes, but apparently sometimes the body does you a favour and automatically draws on the good X and squishes the bad one into the corner. Because it is a development gene and I am thankfully ‘developed’, it wont cause me any problems now. How lucky am I?

So we discussed options. I have a 50/50 chance of producing a good egg without defect. I could fall pregnant naturally then at 12 weeks they can do a test which involves taking a sample from the placenta and find out whether we are carrying a child with the ARX gene. Then we would have a choice to terminate the pregnancy if we didn’t want to continue. It is pretty much guaranteed that if we did have a child with ARX they would be as severe as Sam because I’m carrying a severe mutation. This is not an option for us at all. It is too much of a dangerous gamble. I do not want to pass this on to another child but I couldn’t terminate. At 12 weeks? At 12 weeks I saw Samuel on the scan. Not for us.

So the next option is IVF PGD. They take my eggs and by removing a cell, they can identify which are viable and ARX -free. Essentially it is like removing 1/8 of that persons genes. Then they implant (like IVF). There are no guarantees. I may not even produce quality eggs that they can work with. It might be a whole expensive, emotional waste of time. Also, to be able to do it they need a licence for the specific genetic condition and there is a chance that they may not have a licence for ARX. That isn’t a problem, the hospital can get one, but it can take up to a year for the hospital to get it. We would just have to hope that a couple like us, in our situation has already been down that route and triggered the need for that specific licence.

Next option is egg donation. It is IVF again of course. There is a waiting list and there is a country-wide shortage of egg donors, so it won’t happen quickly.

So that’s it. Oh and a few other figures to chuck about. Samuel is the only child in the country they know of with such a severe form of ARX. Samuel is one of only 30 children (past and present) to have been known to have ARX worldwide.

How do we feel? Better now then we did when we left the office because we’ve had the chance to process it all. But we have options. Yes all our options are difficult, long, emotional with no guarantees. But we’ve got to try, haven’t we?

Mum

It’s Mothering Sunday tomorrow. My second with Samuel, for which I feel very privileged. I think by now regular readers will know how I feel about my role as a Mum. But I thought given the day it is, I should tell you something about my Mum. She’s a bit daft. She’s quite quirky. She sometimes drives me bonkers. She is very, very fond of Alan Titchmarsh. But she’s my Mum and I absolutely adore her.

My Mum had a very rough start in life. Her father died when she was only five and that left her in the care of her mother. Her mother was not designed to be a mother. She suffered from schizophrenia and manic depression and while of course that doesn’t make her a bad person, she couldn’t help it, she wasn’t maternal or particularly interested in the care of my mother.

My Mum was essentially brought up by the nuns who taught her and cared for her at boarding school. They were strict (and she did get expelled from a couple of schools, so wasn’t an angel), but they did show her love. My Grandmother (who I never met) would often tell my Mum that she was ugly and no man on earth would love her and she would never have children. She told lies to my Mum and about my Mum. She hurt my Mum both mentally and physically. My Mum did have relatives who cared for her, but they didn’t want to intervene for fear of being banned from seeing her. My mother was born in 1946, so Social Services wasn’t like it is today.

But then when she was aged 25 she met my father and her real life began.

Me, Samuel's mum, as a baby - remind you of anyone?

I’ve grown up always knowing, never ever doubting how much she loves my sister and I. As we grew up she swamped us with love. Even when I had hideous dress sense and probably looked a state, she’d always tell me how beautiful I was, how I was her beautiful girl.  Many cats, rabbits and friends of mine along the way have benefited from her natural maternal love!

Sure, she probably made the odd mistake, she’s not perfect, but that’s only because she’s human. She showed my sister and I what it was to be a mother and the enormous capacity we have to love as mothers.

She’s a Grannie now. Yes a Grannie with an ie at the end. She has two Grandaughters and well, you all know Samuel. She adores the children. She talks about them all the time to anyone who would listen. She is very proud of her family. She makes the children lots of beautiful handmade things and I know that in every single thing she makes, even the bobble hat to match Sam’s cardigan, so much love and care has gone into it.

When things were tricky when Sam was in NICU she was there on the phone for me to cry to. I told her my worst fears. I’m very frank with her about his condition, I don’t sugar coat anything. She rings up all the time to see how we are and how the boy is doing. She wants to know every detail about how our appointments have gone.

I tell her a lot that I love her. We always end our phone calls by saying ‘I love you’. If I ever lost her, my heart would break beyond repair. She’s my Mum.

(My Dad’s pretty cool too, but that’s for another day.)

Today I cried

Today I cried for the children I will not have. For the pregnancies that I will not experience.

I cried because I will never experience that feeling again of a new life growing inside me.

I cried that my body, otherwise healthy, could make a child so ill, so poorly like Samuel.

I cried that if we want more children, we can’t just decide to have them. We might have to negotiate with adoption agencies. We will have to prove that we can make it work.

I cried because we can’t just look to the future knowing that we will have more children. That we will definitely be parents again.

I cried that my husband, who was born to be a father, can’t have another child of his own. A child that will look like him, have his nose and his eyes.

I cried because I feel guilty that I want more children when Samuel should be enough.

I cried because I have so much love inside me to give another child. We both have so much love to give.

I cried because we can’t just have another child like other people can and just make it work like other people do.

I cried because of the raw pain in my heart and stomach that I feel when I see Samuel have a seizure and all I want him to do is look at me and smile.

I cried because I know if we start the adoption process it will be long, drawn out and painful. Having to go over again and again about Samuel’s condition with different people.

I cried because one day we could lose Samuel and I will no longer have a child here to hold.

I cried because I just want us to be a mum and a dad. Forever.

Nanna

For some reason lately I’ve been thinking about my Nanna. I don’t know why.

My Nanna was my Dad’s mum and she died about seven (ish) years ago aged 84. Towards the end she was in a nursing home because she had dementia and could no longer care for herself.

I only ever knew one set of Grandparents and I adored both my Grandad and Nanna. But my Nanna is more prominent in my memories. She and Grandad lived in Hove near Brighton and we use to spend a lot of time there when we were children. I loved Brighton. It was always my dream to move there. I was going to buy a Citroën 2CV and marry an artist or a sculptor and live in Brighton. Well that was my dream when I was 17.

My grandparents in their younger days

My Nanna use to do a lot of baking and I often wish I’d taken more notice when she tried to teach us how to cook and bake. She was a very good baker. She liked to listen to Stevie Wonder in the kitchen while she was baking. We played I Just Called to Say I Love You at her funeral.

I  know she frustrated my Dad a lot. She was daft sometimes, interfered and would insist on dressing my sister and I in girly frocks when my parents wanted us in jeans and dungarees.

My Nanna adored her family. She was one of seven siblings and she was probably the only one who gave so much to her family. She would regularly babysit for her sisters and was always doing things for her family. At her funeral one of her nephews told me that he was so jealous of my Dad and uncle that they had parents like my Nanna and Grandad.

My mum never really wears makeup but my Nanna did and always looked lovely. When I was a child I’d watch her put her makeup on and do her nails. I wish she had been here to see me at my wedding.

She was so very proud of my sister and I. She loved us very much. She use to tell us stories of her childhood, when she met Grandad and when she was in the Women’s Royal Air Force during World War 2.

I believe she would have loved Sam. She would have been overjoyed that she had two great-granddaughters but I know Samuel would have won her heart. She would have done everything she could for him.She would have really enjoyed how cuddly he is and even though she was always very smart and well dressed (I only ever saw her in trousers on a Friday when it was housework day), it wouldn’t have stopped her getting on the floor to play with him (if her old bones allowed) or give him a good squeeze.

My Nanna’s name was Olive May and I miss her.

The other boy

Warning – this could turn into quite a slushy post…

I just wanted to say something about the other boy in my life, Samuel’s Dad.

It’s not just me on the Samuel adventure, but Sam’s Dad is such a fantastic father and does everything for our boy. ImageWhen he’s home from work he shares everything with me and has a real bond with the boy.

I think I would find the situation so much harder if it wasn’t for my husband being the man he is. He has a heart of gold and watching him with Sam, seeing how much he cares for him is wonderful.

I am so lucky that he is my boy’s Dad and Sam couldn’t ask for a better father.

That’s all I wanted to say. I have two gorgeous boys in my life which makes me one very lucky girl!

Sometimes I feel like throwing my hands up in the air
I know I can count on you
Sometimes I feel like saying Lord I just don’t care
But you’ve got the love I need to see me through

Sometimes it seems that the going is just too rough
And things go wrong no matter what I do
Now and then it seems that life is just too much
But you’ve got the love I need to see me through

When food is gone you are my daily need
When friends are gone I know my saviour’s love is real
You know it’s real

You got the love x6

Time after time I think Oh Lord what’s the use?
Time after time I think it’s just no good
Sooner or later in life, the things you love you lose
But you’ve got the love I need to see me through

You got the love x12

Sometimes I feel like throwing my hands up in the air
I know I can count on you
Sometimes I feel like saying Lord I just don’t care
But you’ve got the love I need to see me through

The other boy in my life

Warning – this could turn into quite a slushy post…

I just wanted to say something about the other boy in my life, Samuel’s Dad.

It’s not just me on the Samuel adventure, but Sam’s Dad is such a fantastic father and does everything for our boy. When he’s home from work he shares everything with me and has a real bond with the boy.

I think I would find the situation so much harder if it wasn’t for my husband being the man he is. He has a heart of gold and watching him with Sam, seeing how much he cares for him is wonderful.

I am so lucky that he is my boy’s Dad and Sam couldn’t ask for a better father.

That’s all I wanted to say. I have two gorgeous boys in my life which makes me one very lucky girl!Image