On the move...

Update : It's time to move. I have loved logging into blogger for the last 4 years and writing about our little family. It has been such an important part of my life, and has helped my to focus on what is good about life. However I've found it hard to focus on two blogs at the same time and a business, so I have decided to bring everything together under one roof and have splashed out on a new all singing, all dancing, website - www.emilybealephotography.com

So sadly I will no longer be posting here. I will leave the blog turned on, I would hate to loose all the journaling and photographs and happy memories contained here. But all our new adventures will be posted on the new website & blog. It's all up and running, so I'll meet you over there!

So sorry for the lack of posts here last week. It was the school holidays and I was busy playing with my boys. The rest of my time was spent working on a little project. I'll reveal all when I'm done! Hope you're all well, and thanks for stopping by the blog.

Just playing...

I needed to practice some new camera settings this evening, and needed something to practice on - my boys were less then happy. Tayler struggled to open his eyes.

Nathaniel had to think about it.

Jarom joked around.

But the cake stayed perfectly still, showed my it's best side, and knew that it didn't need to smile at the camera or say 'cheese' for me to take the perfect picture.

Tay...

Recently we stopped calling Tayler 'Tink' for short and started calling him 'Tay'. I guess that's what happens when you get older, you put away the childish things and move on to things that more 'cool'. So today's post is all about 'Tay'.

The progression of (Tayler's) Tay's Muscular Dystrophy is becoming more apparent. We have known this day would come, and have been prepared for it through steady progression of his disability, and the support of incredible kind and helpful medical professionals. But have recently become aware that school need to be on board too. Tayler's teachers mentioned that we would need to meet together to discuss his needs some months ago, however we weren't able to all meet together until today. I'm not sure what I was expecting from the meeting, I guess a little of what happened really. I pictured us sitting and discussing Tayler's increasing needs, with the support of his amazing physio adding weight to the issues that needed to be raised. I didn't realise I would need her valuable input quite as much as I did.

The meeting involved me discussing the list of concerns we have about Tay - poor concentration, extreme tiredness, poor motivation, lack of sociability, falling, tripping, inability to run, reduced upper limb strength, poor eating habits, low self esteem, and his current acknowledgement of his disability. The list is long. And although each item on it causes us and Tayler daily discomfort and distress, I have to say that we work through and cope with each one. Life is good, we are happy. But it was important to talk about each of these areas so that school are aware of how they can help. A very important lesson I learned today. If you don't ask for help, people simply won't even be aware there is a need. It's not that people are uncaring, they just won't be aware there is even a problem. And on the plus side, we wouldn't have been aware that we have another pool of incredibly caring helpful people to support us. More support = a very happy me!

So how can school help? Here's a copy of our action list. I am overwhelmed with their support to say the least. And know that the most important person, the one at the center of all it all - Tayler, will feel the same way I do. This 'to do' list couldn't be better.

Actions (for school & home)

• Staff support for Tayler’s wheelchair use - someone provided to manage & push Tayler
• PE - swimming - Tayler to swim throughout the year
• PE - all curriculum - Tayler to be allowed to do separate activities (report writing, photography etc) for all PE activities (especially summer sports day).
• Laptop - school to provide access for Tayler to laptop & time on computer programs to teach keyboard skills. Also follow-up at home with access to internet based programs.
• School to provide Tayler with extra support/counseling to build self esteem. And support Tayler to build good friendships (Tayler to be with his best friend).
• School to apply for ‘Audit Funding’ for Tayler for LSA support & daily school based exercise program to be established. Physio to write report.
• 6 months time - another meeting (November 2011) to discuss implementation and any changes.
• Me - is there a profession we can have access to for classroom inclusion presentation?
• Physio to follow-up with occupational therapists re: referral, school support (exercise program) & a report from them for ‘Audit Funding’.

I'm sure it will take a while to implement, but I'm hopeful we will eventually get around to doing each item on the list. I'm so grateful for having my boys in such a fantastic school!

Super douper...

Sunday evening Ashleigh came over to play. Nathaniel's best friend is Ashleigh. He talks about her all the time, and loves playing with her. They love to play together, it's so nice to watch them really enjoying spending time with each other. They toddle around in the garden, read stories in Nathaniel's room, and make the biggest messes together in the living room.

Yesterday golf was the game of choice - or rather how many uses can you find for a golf caddy? Ashy got her pretty Sunday dress wet so Nathaniel came to the rescue with a pair of super pj's - he wanted to wear his of course too! It's so great to have good buddies!

The peonies came out in the garden this week. They are truly my favourite flower, and I love the particular variety in our garden. I think I'll have to invest in a few more bushes - different varieties and colours. I'm sure I say it every year, and never actually get around to doing it. This week it's the Chelsea flower show, it always reminds me of mum, she loved it there. I'll have to find out what peonies they have on show. This is my record of this year's beautiful blossoms from my bush. I love macro photography - a different way of looking at something can help you to appreciate it on a whole new level. Ummm - lovely!

Father and sons camp 2011...

Only 30 minutes from home, this years campsite was really fantastic. An area of outstanding natural beauty, the the site of an ancient Roman fortress, the boys were really spoilt. Jason captured it all so well in pictures.

My boys look forward to camp all year round. They absolutely love building fires, whittling wood, climbing trees, spending time with their Dad and generally just being boys.

The Set-up - tents and transport.

It's great to have evidence that my boys can work hard. Apparently Tayler loved this job and stayed when all the other boys went off to play to make sure the job was finished.

A little band of brothers. Walks are an important part of camp, and apparently this years's walk was 6 miles long! Jarom exhausted himself, and is taking an extra day to recover, whilst Tayler and Daddy did the sensible thing and only did a very short version of the walk before heading back to the camp site.

Tayler and Jason found company on the way back to the campsite. It's so good to have great friends to share good times with!

Jarom loves carving wood. He has asked for his own knife every year since he started going to camp age two. We promised him that for his twelfth birthday he would be responsible enough to have one - thinking in our naivety that twelve was such a big age and would take much longer to arrive. However Jarom's twelfth birthday is only a few months away, and several cut fingers are indicating that he may not be quite as responsible as we hoped he would be. A promise is a promise, and we need to keep ours, maybe we can find a super safe, and very blunt bladed, guaranteed not to chop your finger off variety of knife?

Whittling away!

The boys love spending time together.

And after all that play, it's time for a nap. Jason found Tayler sleeping in the footwell of the car. Being exhausted and needing a cozy quiet place to bed down Tayler must have tunnelled his way into his particular position.

And now home, the boys have brought with them - dirty stinky clothes that smell of camp fires; cuts and bruses; but lots and lots of great memories! It's what childhood is all about!

Whilst the boys are away, mummy goes shopping...

With Nathaniel in tow, of course! And what did we buy? Nathaniel has been in need of a new coat, his old one was too small (size age 12 months), and he had well and truly worn it out. We spotted this one in our little boutique store in Weston and couldn't resist it. Who doesn't love dinosaurs. Nathaniel tried it on in the store and strutted around in it - he knew he looked good. We thought we'd have a little fashion show when we got home!

Waterproof with a nice warm towelling lining!

With Crocs to match!

I know I may be jinxing the British weather we've been having recently, but it's rarely dry over the summer. I think we'll get lots of use out of this little jacket! Plus Crocs are the perfect all weather sandal.

So that's what we've both been up to whilst Daddy took Jarom and Tayler to father & sons camp. Everybody was happy!

Authentic Battle Damage

A few days ago my boy went over to his cousins home to play. Whilst in the garden the strimmer threw up a stone into his face. He came home and proudly announced his battle damage. He wished the stone had been just little bigger and had hit a little deeper, in order to make a really cool scar.

The offending rock.

I'm glad it wasn't a little bigger. A little harder. Or a little higher up his face. Phew. A close shave really!

I've been spending some time with my beautiful sister and her beautiful daughter this week. I'll be taking pictures today. Unfortunately that means I won't be posting much here whilst I'm so busy. So, I'll see you soon.

Baby Maysie

Last night I went to visit with Kate, Tim and Maysie for the first time since Maysie's arrival. What an absolute cutie that little girlie is. Kate already feels she is a sweet natured little girl because she has been so good - sleeping and eating well. She likes to be swaddled tight and sleeps well either in Mummy or Daddy's arms or on her comfy big feeding cushion.

She didn't seem very impressed with my big camera (we had disturbed her from a snooze and cuddle with her Mummy though).

Ahh, but then she turned on the charm and gave us a cute little smile. At only 24 hours old, we were very impressed.

A quick look over to Mummy for reassurance. What a sweetie pie.

And little wrinkly toes.

I am so impressed with my little sister and how she has taken to motherhood. Timmy too is the most attentive Daddy and husband, he absolutely dotes on his two girls. I am so happy for them, words fail me. I just can't wait to see them again and give that little one a cuddle.

Bedtime...

At bedtime this evening we received the news that my sister Katy has finally had her baby. She was due to arrive on 29th April, and so is almost two weeks late. That is a tradition with us 'Mays' women - mum was late with both Katy & I. I was late with Jarom & Tayler. Kate was late with Maysie. Katy was in labour for almost 3 days, so we are so proud of her endurance and strength. I have to so we were incredibly relieved when the phone rang this evening with the news from proud daddy uncle Timmy - 'A baby girl, born at approximately 6pm Thursday 12th May, weighing 8 lbs and half an ounce. Baby has lots of hair (like her mummy), and both Mother & baby are doing well.'

The boys faces were full of delight when we told them. Another little person has joined our family. We are all so excited to meet her.

We had a little visitor in our garden...

He sat on our fence and looked a little like this ...

He hasn't visited before, so we decided to give him a snack.

This was all we had, besides bird food.

My boys thought this song (also by Insideout A Capella), by their favourite group was a fitting tribute to him. I apologise.