A little hand holding please...

[SurvivalOfTheUnfittest]

My gorgeous husband kissed ds1, aged 5, ds2, aged 3, and I, tonight, told us each that he loved us and went to play football, as he has every Thursday for the last 10 years.

38 minutes later, I had a call from his mate to say that he was having some kind of fit. By the time I arrived at the pitch, he was receiving cpr. Eventually we agreed they should stop at the hospital. He was 39 years old and the best daddy and husband one could hope for.

I'm lying here, wide awake, totally numb, and trying to think how to tell our beautiful boys that their super daddy didn't make it home.

I don't know when I'll be back on here., as I'm supposed to be trying to sleep, but just needed to say the words above.

Thank you.x

I too spent an evening reading your blog entries. You paint such a great picture of your DH and your marriage. I agree with truly that you are an extraordinary parent. Your boys will grow up feeling loved and secure. I hope you have the great RL support you deserve. x

Just read through this now and will read your blog you have been so strong and brave for your 2 boys you sound like a fantastic mummy.
Hope ds2 is ok OP

Thank you all. If the boys grow up feeling loved and secure I will be very pleased.

Tonight I've listened to too many sad songs whilst ironing in front of last night's recorded X Factor. I am very worn out and yet need to find the mental strength to get ds1 the help he needs to get him sorted physically again. I have spent the last three years feeding him up and he now looks like a child on a famine advert. I rang the dietician on Friday but she didn't ring back. I think ds1 probably needs a calorie supplement and I'm so worried that he will not have the strength to fight off the winter bugs without a bit of weight back on him. He is also describing a lump on the I side of his neck/throat so I wonder if he might actually have pharyngitis. Either way, I will get him checked at the GP tomorrow to make sure.

This is when I need dh to be around to calm me down and tell me everything will be fine (even if at times I thought he was being too blaze and too uninformed to make a true judgement!) I had half an hour off today and drove along thinking to myself that I hope one day my luck will change. Then I was hit by the horrible fear that I am trying to bury. The boys may have a 50% chance of inheriting dh's heart condition and it may mean they need a heart transplant as a teenager. The problem is that because the local pathologist was not looking specifically for particular heart issues (past a cause of death), we don't know the cause of it. It may have been bad luck and it may be hereditary. We won't ever know unless one of the boys develops it. Somehow I have to learn to live with this fear, but it really hit me like a punch in the stomach today. This might only be the very beginning of everything, rather than moving along the path towards the end of our traumas.

Sorry for the downer on a Sunday night but I just needed to put it in writing. I have talked to my DM and to a friend this evening, but it's late and quiet and bloomin' lonely right now. What I need is a list of things I need to do so I can regain control of things a bit. That and some sleep. If anyone fancies looking after ds2 when he is mostly waking for the day at 4:30a.m at the moment, you'd be more than welcome!!

Oh survival that is such hard stuff to have going around your head. Sometimes you have to just try to shut down those future thoughts and find one thing you can look forward to tomorrow. Hope both boys sleep well and ds1 's throat is ok. Xx

Sending you lots of hugs. I agree with Saffron try and focus on the here and now, no-one ever knows what lies around the corner and if we tried to think a out the what if's all the time we miss the little moments of happiness happening right now.
I cannot begin to imagine how frightening and scary it must be for you to think about what might be but please take some comfort in that although medically the exact cause may not be known the tests have shown an area for future checks to be focused on and your boys can be monitored as closely as possible.
Stay strong and take care- hope you have a good week and the boys are better x

Thank you both for replying. I've shut the door for now on those thoughts about the future that I can do nothing about. Have my second session of counselling tomorrow so might bring it up.

The week is going by pretty well. Ds1 is doing half days at school to get him back up to strength and I've managed to get dates for 5 of the hospital appointments I have been waiting for for both ds. At least now I can arrange childcare and know when I get to have the conversations that have been going round in my head. I've got to travel to our regional children's hospital 3 times in 6 days which seems a bit ridiculous (as it is about 50 minutes' drive each way! The train journey was quicker when I tried it in the summer but took a lot of arranging and wasn't much cheaper by the time I'd paid to park etc..). It'll be a miracle if I end up at the right hospital with the right child at the right time (with someone somewhere looking after the other one!!) I'm not new to all this but dh was always willing to come if I needed him to or to at least be responsible for the other ds if not needed a the hospital.

The boys are both being a bit aggressive again this week but so far I have mostly managed to head it off. I had 90 minutes off this afternoon while db and dfil looked after the boys together and indulged in a little (bargainous) retail therapy. I've also finally had the time this morning to clean the house which always makes me feel better. My blog is done for the week (though not published till probably tomorrow night) and the world is looking a bit brighter. Ds1 is still looking awfully skinny, but he is eating pasta and chicken for practically every meal (at his own request!) and my homemade 'freefrom' gingerbread men in between. We can't do any more at the moment as his tummy is still a bit fragile so I can't rush the fattier foods.

Thinking of you Survival, and look forward to reading your blog when it is published. Xxx

Hold hands

Hopefully all the hospital appointments go ok and your counselling session is helpful.

Counselling is going well, but is very tiring and leaves me tired for the rest of the day (as it happens early in the morning).

I thought that Christmas songs in shops were going to be hard to hear, but the blooming adverts on tv are worse because they sneak into my lounge when I'm 'up' and make me sob. How many times will I have to hear 'I'm feeling tired and I need someone to rely on?' on the John Lewis advert before Christmas actually arrives? I have the most amazing bunch of people around me that I could possibly ever ask for, but they aren't dh, and they can't take away my worry and concern for the boys, no matter how many wonderful shopping trips and birthday meals out they plan. I don't mean to sound ungrateful, as I'm really, really not. It's just it's not him planning them, and it should be. I don't want a birthday next weekend. At least the boys will distract me at Christmas. Next weekend is just something to endure this year.

(I don't feel like this all the time - in fact I've had a wonderful afternoon off with lovely friends and laughed a lot. However, I just felt the need to write the above. I really hope my RL friends don't read it as they so desperately want me to have a happy birthday and I don't want to let them down).

On a brighter note, my blog is on the front page of the MN bloggers network again today. I've decided to concentrate on decorating ds2's room and on wrapping presents etc.. for the next few weeks, rather than writing my blog and I feel a bit relieved that I've made that decision for now. I may be on here more instead!

You are so lovely OP worrying about having a happy birthday for your friends but please don't feel pressurised to. It would be lovely for you to have a happy day but if its a hard day if you have to stop to give yourself a few minutes that's ok you do it how you can.
I'm glad the counselling sessions are going ok although they must be so draining hope you are able to have some time to relax afterwards? Take care OP x

Thank you. I get about an hour after co selling to get home, compose myself, reapply my make up and collect ds2. The tiredness sets in at about 4pm!

Co selling?? Counselling!!

Hey Survival, I've just been catching up. Oh. My. Goodness. You've had a crazy time of it recently - again!

Just wanted to let you know we're still around and listening.

Thanks Foxy.

Hope the counselling helps.

The counselling must be really draining but hopefully it is helping a bit - whatever that means. You obviously have lovely, caring friends and also a great big hole where your DH should be. That must make every celebration and milestone very hard.

Hello Survival
Please dont consider me weird but I've been lurking and following your story since the beginning. I took the time to read your blogs recently and you are amazing strong and such an eloquent writer. I just wanted to say so!

I hope that you are doing ok this week.

Another one thinking of you. X

thinking of you

Thank you all. I'm sorry for the lack of posts. I have: celebrated my birthday (and it went very well); built ds1 a cabin bed (and swapped a load of other furniture around upstairs so that ds2 also has a new bed); been through occupational health which was pretty hardcore, and which has worn me out this week.

I have continued the counselling which I think is helping and have managed to erect and decorate a real Christmas tree with only the boys as assistants! (That was really hard, especially ironing in front of it on my own afterwards). Tonight, I have written the rest of 90 Christmas cards, printed out my letter that I wanted to include in place of personal messages, and done all the envelopes.

I have been asked to become a Foundation Governor for the boys' school and today I have received the most amazingly generous gifts from a MN Secret Santa, which has made me feel very humble.

I have attended several more hospital appointments with the boys and have discovered that ds2's previous sleep study results (from 2 years ago) were originally misinterpreted. He has several indicators that are 'borderline significant' and will be having another sleep study in a few months time. I am very relieved that someone finally believes me, but was very overwhelmed by the fact that if I had followed their advice originally to turn off his mattress monitor, then there's a chance he might not still be here now. I also wished that dh could have been here to hear this news with me as it was a journey that we took together.

The boys have been very angry with each other in the last couple of weeks, but I feel this is more 'normal' than fighting me. We have spent time together decorating stars and baubles ready for a lantern walk with Guy's Gift, our local children's bereavement charity that has been supporting the boys. I have also joined The WAY Foundation (Widowed and Young) and I feel a huge sense of relief that I have found a group of people who are going through similar things. I wouldn't wish it on anyone, but it is always nice not to feel alone. It is also nice to hear from people on there who are several years ahead of me.

I think I need to try and calm down a bit now as I'm not sure this level of activity is sustainable and I don't want to be ill for Christmas. I have booked a massage for the day that the boys go back to school in January (a present from my brother for my birthday) and I will look forward to it through the busy Christmas period.

Love to you all at this busy time.