SPINAL MUSCULAR ATROPHY AWARENESS

Although this is a sewing blog, I would like to include something very important to us as a family. Spinal Muscular Atrophy.

SMA is a genetic neuromuscular muscle wasting condition that took the life of 2 of my babies. My daughter was 6 months old, my son died during the pregnancy, both had Spinal Muscular Atrophy type 1.

If you have never heard of it before, please have a quick look at the website, every person who reads about it is one more person aware of the condition.

http://www.smasupportuk.org.uk  

 

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Summer Holiday and Celebrations 

Here we are,  3 weeks into the summer hols. Husband is booking a few days off work at a time to spread it over the whole holiday. 

We aren’t going away this year, so it’s days out. We have been to see Finding Dory, been swimming pool and been to the beach. 

Thankfully for me the extreme heat of last month, albeit for only a few days, is over, but is supposed to be returning. I do not like it too hot, that horrible sweating and dripping into everything :mrgreen:😱. 

But yesterday we had a big celebration because my 5 year old was baptised. His choice,  I wanted him Christened but hubby doesn’t believe in it. I have been to church on and off, I’m not a regular church goer, but I do believe in the church and what it stands for. I don’t feel the need to attend regularly to maintain my belief. I have a bible at home if I need to read one. 

But son made his own choice after going to one. :mrgreen:

He chose his own godparents as well.  Now he is adopted and until they are legally adopted and “out of the system”  they cannot be baptised. He was 22 months when it was legal and we decided to allow him to choose at a later stage if he wanted to.  

He did, it was yesterday and he chose his own Godparents. My brother, our best friend and his foster parents. :mrgreen:. 

It was a beautiful day,  beautiful service and we had a lovely party afterwards for him. He is such a happy boy and even more so now he has got “God’s bless”  his words. 

Love him so much,  he is amazing but I’m very biased of course. 

Hubby is off later this week, I suspect a couple of beach days ahead but who knows what the rest of the holiday will bring. 

Good old British Summer 

So it’s the end of June. July is just around the corner and we have rain ☔. 

It started off as light drizzle when I got up, turned to heavy rain so I had my boy’s welly boots ready to put on, school shoes in a bag.  As I was chivvying him along to go to the toilet and brush his teeth, the rain eased and was drizzle,  now it’s very grey and cloudy but not raining. 

Everyone jokes about the British weather but it is quite unpredictable. 

I’m not a fan of the stinking hot weather,  I hate feeling sweaty and unnecessary :mrgreen:. But I love seeing blue sky and sunshine summer and winter. 

But I’m going to risk it and hang the washing out anyway. The rabbits are chomping at the bit to be let out too. :mrgreen: 🐰🐰🌞. 

I wonder what July will bring for us. 

Children and heartbreak 

11 years ago I gave birth to a beautiful little girl, I have never wanted anything as much as I’ve wanted children,  especially a daughter. 

When she was 2 days shy of being 6 months old I cradled her as she died. Spinal Muscular Atrophy type one. I hate it so much, mentally she was fine, but it’s a physical condition, it’s a faulty gene issue and it’s genetic. 

http://www.smasupportuk.org.uk or Google SMA. 

We had no idea we were carriers, we hadn’t even heard of it. But there is a 1 in 4 chance per pregnancy if both parents are carriers.  

We found out our siblings are carriers but their wives weren’t so there children have s 50/50 chance of being carriers. 

We had 8 weeks from diagnosis before she died, to get our heads around what was happening. My beautiful, perfect, giggly, bright as a button little girl would probably not see her 1st birthday. 

I sit here by her grave writing this. I’ve just been and put fresh flowers on her grave, the grave she shares with my Grandparents. At least my wonderful Nan is looking after her. I couldn’t ask for anyone better to be looking after my girl than her great nan. 

5 years and 10 days after her birth I was delivering her very tiny baby brother,  who had already died, he had SMA too. 

Around both of my babies I had 3 miscarriages. 

I’ve done all the why me’s,  why us, why them over the years and I’m still none the wiser about why. 

The heartache never ends, you just learn to move ahead with life, because that doesn’t stop, the world around you keeps moving and you have to move with it as hard as it is. Some days are worse than others, birthday’s and Christmas are particularly hard. But significant dates like the date they would have started school etc. It’s so damn hard.

People say “oh I couldn’t keep going/couldn’t cope if anything happened to one of my children”  Does that mean because I do cope that my babies meant less to me than their’s does to them? 

We still talk about her, we might be saying something about my nephew when he was young and she would come into the conversation. He doesn’t remember her, he was 2 when she died, the other nephew was only a baby himself.  

As time goes by other family members forget or something may bring a fleeting memory of her time with us, but for her dad and I,  and her grandparents,  she is always there,  tucked away at the back of our minds, but never forgotten. 

We do now have a son. No risk of SMA with him. We stopped trying,  the risks were too high and after 5 pregnancies it was getting harder. So we adopted him. He is wonderful and gives us a reason to live again. 

New cross stitch project

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My mum bought this kit and asked me to make it for her. That was quite a long time ago.
But family things happened and I’ve only just dug it out again.
So time to get cracking on with it.  I haven’t told her I’ve started it, so I’ll present it to her once it’s done and, probably,  framed.

I shall update as time goes by.

Cushion cover finished

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We have cushions on our dining room chairs, but they are ones with poppy’s on, so my little fella asked if I would do him a marvel avengers one.
I agreed but never told him when I had the fabric for it.

Tuesday I made it, didn’t tell him, but his face was an absolute picture when he saw it.
I struggled with the ties for the chair as I’d never done that before,  but it was pretty easy to do. So I think I’m doing really well with the cushion covers.

Today in Great Britain and my home

Today is the referendum voting day to see whether we remain in the European Union or leave it.
Polling stations opened at 7am, our nearest one is just a few minutes walk from us. Hubby and I have both voted. I feel very strongly about it and have always known which way I would vote. Hubby has only really decided in the past couple of days.

Here’s hoping for a good result.

In other news……
I have made a cushion cover for my little boys dining room chair cushion.

I have a teddy bear to finish making and I have received almost everything needed to start making my bag. One more item needed but I think I’m Ok to start making it before that arrives because it isn’t needed until the end. 

Later on I’ll post a picture of the cushion cover and material I’ve got for my bag.

Got to get my little fella ready for school now.

Have a good day wherever you are.

London

What a day, 5.30 am and my son is calling me to see if it’s a good time to give daddy his Father’s day present,  he is only 5, so we were expecting an early rise.

By 8am we were in the car on the way to London. Son has been obsessed with London for several weeks and keeps asking if we can go. London is only an hour by train but we could never see everything he wants to see in one day.
So we said we would go by car, drive all around London so he could see everything he wants,  then he can choose what he wants to see most and we can do that by train another time
That suited us all.

So Buckingham Palace, Big Ben, Natural History Museum, Tower Bridge, Trafalgar Square, Westminster Abbey, London Eye, St Pauls Cathedral….
All the places he had heard about or seen on television.

He loved it and his face was an absolute picture of sheer joy everytime we pointed out a landmark to him.

I tried to take pictures out of the car window with my phone,  made me look very touristy,  even though hubby drives around London regularly with work and I used to spend a lot of time in London socialising.

But son is one very very happy boy right now, drawing pictures of everything he saw and deciding what he wants to tell his teacher first tomorrow.

I think hubby has enjoyed this Fathers day as much as son has.

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Just 3 of the pictures and they are not easy to take out of the window of a car!

Family and home

Today is my mum’s birthday,  73 today, so at 8am my son and I wandered round to my parents house to give her the flowers my son had chosen and picked from our front garden.
He’s only 5 so nanny loved that he’d wanted to pick his own rather than buy them.
My parents went off to London for the day and according to her text, just now, they are still there, exhausted but happy, but will soon be on the train home.

Meanwhile while I was having my haircut this morning,  hubby and son went out for breakfast!!  Now this breakfast out lark is becoming a regular thing when I’m having my hair cut.

We ended up,  once they picked me up, at the local pet shop,  buying more fish for our tank. We were down to 2 fish and I wanted to get rid of the tank once they both died, we’ve gradually gone from 12 down to 2. But, after thinking how empty the tank looked and how sad the remaining 2 fish seemed (I’m too soft and stupid when it comes to animals,  even fish!) I sort of suggested maybe get a couple more, for our son of course.  So here we are back to 11 fish.

Now it’s getting close to bedtime for my little fella.  He has prepared daddy’s present ready for Fathers day tomorrow, keeping them safe under his bed. I expect to be woken somewhere in the region of 5am, so he can give daddy his gift and card.

Hope you all have a lovely weekend.  :mrgreen: