How to make the most of life

niklepic · 26 September 2011 at 5:07PM

It's been nearly a year since my son was diagnosed with Duchenne Muscular Dystrophy. He's now 6, doing really well and has started on steroids. He has a wheelchair which he uses if we're going to be walking more than a short distance - which he thinks is cool.

OH, DD and I have been spending the last year coming to terms with his diagnosis although DD (13) doesn't want to know details. She knows his muscles are weak and that they are going to get worse but that's about it.

Anyway, I feel like I've spent the last 10 months grieving for the life he should have had but with the help of antidepressants I'm ready to start living life again rather than existing day to day. My son's time with us is potentially limited from anything to late teens to thirties (unless a cure is found soon - trials are going well so we do have our fingers crossed for the future!) and I want to make the most of that time and give the whole family experiences to remember.

What I'm looking for really is ideas. If you were in my position, what would you really want to do with your family to make the time you spend together as fulfilling as possible?

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Artytarty · 26 September 2011 at 5:16PM

Hi! may I say what a heartwarming post?
My 3 kids were neighbours and best friends of a lovely little girl whose time was limited.
She lost a leg and had crutches then a wheelchair .
Anyhow, her Gran ( my next door neighbour) did marvellous things for the children. That little girl had such a full life!
Disneyland Paris was a big one but loads of Pantos at Christmas for all the family, down to small events. I remember well how much we all enjoyed baking potatoes in a bonfire at Halloween for example. She always had loads of craft stuff available so that when my kids called in there was plenty of hands on round the table activity. Baking was another hit.
She thought she was a great singer ( so not!) and they got a Karaoke machine which was fab!
When we think of her we all smile

I hope you have far more time to enjoy than you can imagine.

jackieglasgow · 26 September 2011 at 5:16PM

Laugh. Do lots of things together that make you all laugh. If you lose your boy, the memories of him laughing will be the ones to get you through the days and nights without him. Your daughter wil also benefit from memories of you all laughing together. I can't do specifics, each family has their own way of having fun. X

umdelicious · 26 September 2011 at 5:29PM

Mums been in a wheelchair now for a number of years, and has numerous ailments, takes loads of meds, a few times of days.

Doesn't talk about them, always looks marvelous, young for her age, my parents go on cruises, have mini-breaks away, dinner parties, concerts, dinners out etc. She has to rest a lot during the day, and my father is her carer, cannot manage without him at all, but her inner strength, and will for life is amazing. Before she was crippled, she used to go running (although always had a weak heart, and a couple of other things), work, study for a nursing degree, socialise, etc, and I couldn't keep up with her, even when in my twenties. So much energy!

Makes me cry when I think about her, as don't get to see her often. Its not fair that someone so bursting with life should have this, but yet she embraces life, and doesn't worry about anything. Makes my worries negligible. If i need to talk to someone, she is always there to speak to. I'm crying now, as I don't tell her how wonderful, and precious she is to me. We don't always see eye to eye, but has always been there for me, and is non judgemental. Gonna have to give her a call.

Life is for living, no matter what is thrown in your path. You've only got one, so might as well enjoy it.

gratefulforhelp_2 · 26 September 2011 at 5:33PM

Hugs OP, I have no answers, but what does he want to do? Lots of that where possible? And plenty for his sister too. x

niklepic · 26 September 2011 at 5:42PM

He'd be quite happy to spend all his time sitting playing Lego Starwars on his x-box

He does get tired very quickly so things like soft play and going to the park take a lot out of him. It's heartbreaking to see him sitting on the sidelines and watching others play because his legs got tired although he does enjoy it when he takes part.

gratefulforhelp_2 · 26 September 2011 at 5:48PM

It must be terribly hard, I can't imagine how bad for you.

niklepic · 26 September 2011 at 5:54PM

Not as hard as it was Grateful. Strange how you adapt really - maybe thats the drugs talking lol.

Flora_Poste · 26 September 2011 at 5:58PM

Nik, I would plan it out to a reasonable degree. DH and I disagree because he tends to wing his way through life, going with the wind. But I find you have a more interesting year to look back owith more happy memories if you put a lot of dates in the diary and stick to them.

I have that sort of ' make the most of life ' attitude anywY so I have a kind of rolling sixth month plan of what we are doing. I try and fit in five (FIVE!) holidays a year. Obviously not big ones but lots to look forward to. Camping, which I hate but everybody else loves, staying with relatives, tesco rewards vouchers for a cheap hotel. Then one family holiday in the summer. I also make a big deal out of Halloween, Easter, bonfire night, birthdays etc. Invite friends and family round for a themed tea party, bring your own fireworks etc, make cupcakes. Also drive out somewhere and fly kits on the beach with a picnic or wade in a river and get really muddy. Generally there's something doing every other weekend.

Ask DS to help you plan ahead and be guided by him and his sister. My two would play computer games all the time but I find if they write the plan out then they make sure we stick to it.

And don't forget to take loads of photos!

DollyDabbler · 26 September 2011 at 6:15PM

http://www.make-a-wish.org.uk/
http://sky1.sky.com/noels-christmas-presents/nominate-your-hero-for-noels-christmas-presents-2011
and
http://www.actionduchenne.org/home

I would agree with JackieGlasgow, make life as fun as possible with lots of happy memories.
A work colleague from years ago, her son had Duchennes, joined actionduchenne. The whole family helped to raised lots of money towards research into a cure, and met lots of wonderful people, some of whom also had Duchennes, the organisation was a marvellous support for both her and husband and their son.

niklepic · 26 September 2011 at 6:19PM

Thanks Dolly. We've already joined Action Duchenne and also the Duchenne Family Support Group. They really have been invaluable.

How to make the most of life

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