As full of spirit as the month of May!

Well another month has zoomed past and we’ve been trying to make the most of some of the lovely bright weather. It really makes such a difference when we can get out of the house and enjoy the fresh air without rain covers, waterproof jackets and her equipment getting rather wet! In Autumn and Winter I find it really easy to become isolated without the chance to get out of the house and have a change of scenery so when Spring has sprung we like to make the most of it! I’ve even tried to add a bit of culture and sophistication to my ramblings with a Shakespeare quote at the start! I can assure that normal service will be resumed throughout the rest of the update!

We started the month with a gorgeous stroll around Haigh Hall, this is one of our favourite places because Daisy can get some fresh air, we can get some exercise, the paths are Daisy-friendly and there is a brilliant hygiene suite so we can change Daisy. The latter forms a big part of our decision-making on where to go – if we can’t change Daisy comfortably, safely and with dignity then we’re not going there! This makes your choices narrow but I’d rather line the pockets of places that value and include children and adults like Daisy. I have a feeling that this could become a bit of theme in my updates – I’ll be providing a guide to accessible changing in Wigan! As some of you will know, Daisy got a butterfly garden for her birthday. She had been watching the caterpillars growing bigger and bigger until they all started to make their way to the top of the container. They hang upside down in a ‘J’ shape until they shed their skin and form a chrysalis. I think I was perhaps the most engrossed and could hardly tear myself away from watching them. Once they were all hanging from the top we moved them to the butterfly net ready for when they emerge! Apologies for the biology lesson but it was so fascinating to watch and we would definitely recommend it!On Bank Holiday Monday Daisy went to her cousin Lily’s 3rd birthday party. She loves watching the other children playing and dancing and Daddy helped her to join in with the party games. I’m not sure who was enjoying the games the most but I have my suspicions! Daisy’s cousins are so good with her and try to include her in things – it isn’t forced, it’s just what they are used to and they know how to make her smile or laugh. Giving Daisy the opportunity to interact with other children is really important to us and she’s fortunate to have cousins that she sees so often.
After the massive amount of building work that was done on the bungalow, the garden suffered quite a lot with building materials, rubbish and sometimes machinery covering the lawn and any other available space! This is going to be a long-term project because we don’t really have the funds or the horticultural know-how to sort it all out! Daisy and I decided to take the first step and plant some seeds. She got sunflower and forget-me-not seeds in February when we went to a party to remember her friend Harry. We had been keeping them safe until it was warmer weather. Daddy even went the whole hog and bought Daisy her own little greenhouse. She loved sitting out in the garden this week and was very pleased with our planting efforts…we’ll have to see how successful we are over the next few weeks. We’ve also developed an addiction to duck feeding – it is very therapeutic for Mummy and Daisy enjoys listening to the excited quacking that ensues! We are really fortunate to have a lovely pond just a few minutes walk from our house, the ducks are very friendly and will come out of the water to see you when you are feeding them. It also gives us a reason to get out of the house when we could easily stay cuddled up on the sofa. It can be quite a sedentary life with Daisy; so much time is spent sitting or lying with her that I need to get out for a walk to counterbalance my love of cake, chocolate, ice cream, the list goes on!I just had to include these pictures in Daisy’s update because they show what I strive for everyday – Daisy to be part of everyday life and for her family and friends to love her for who she is. Daisy’s cousins Kian and Lily love to come with me to pick her up from school on Thursdays, they aren’t phased by going into Daisy’s school and can ask really thoughtful and sometimes pretty matter-of-fact questions. I think I’m quite honest with them too and try to make sure that they understand things as well as you can expect any 3 and 4 year old child to! The other picture shows Daisy’s cousin Adeline who loves to help us do medicines and wanted to help Paul to feed Daisy. We thought the novelty would wear off as her arm got tired but she stuck with it and did the whole feed herself. We love them being involved. Daisy’s busy social calendar continued with her friend Joe’s 7th birthday party at The Space Centre. This is where we have Daisy’s parties but it is so busy when we’re in charge of the celebrations that we don’t usually get the chance to all play together. We had a really great time and could help Daisy to explore all the different parts of the room. She loved watching the balls that were glowing in the UV light and nearly got lost in the ball pool with Daddy – it was a bit deeper than he thought! (Obviously it goes without saying that Space has multiple changing rooms for Daisy and her friends – a BIG thumbs up!)Before we had Daisy we both used to have Wigan Athletic season tickets but it has been too tricky to do this for the last four years. We have taken Daisy to the odd match but all the planets need to be aligned to make it work…dry weather, not too cold, Paul not being at work and Daisy being well enough! Instead we usually have to gather round the radio and listen to the commentary on Wish FM. We decided to take her to the last match of the season so she could see us lift the League One Champions trophy! We had a space on the disabled paddock next to our old seats and had a great view. Unfortunately, we managed to pick the hottest day of the year and spent the whole match in the full glare of the sun. Daisy was really good but couldn’t manage in the sun for the whole match and had to keep nipping under the stand with Daddy to cool off!After 8 days in the net, Daisy’s butterflies had all emerged from their chrysalides. We watched them fluttering about before releasing them in the garden. Some of them were more reluctant than others and enjoyed soaking up the sun on the shed. As we released them, we thought of Daisy’s friends who aren’t with us anymore especially her lovely friend Shaun who had passed away that week. We’re going to do this every year for her birthday.Daisy attended her second football match of the month on 13th May. She was supporting the Latics Legends against the Dutch Masters all to raise money for Joseph’s Goal. We had a great time and Daisy managed to stay in her chair for the whole of the first half. Usually she gets really cross when her chair isn’t moving and wants to be picked up – this is getting harder as she is heavy to hold while you’re standing up. She was even sporting her new ‘Little Latics fan’ t-shirt!Daisy’s been rustling up more of her duck food for her little friends at Old George’s Pond. She really loves our little walks there in an afternoon and the ducks come out of the water and surround her buggy so she can hear the quacking and flapping! We took Daddy with us so he could see how much the ducklings had grown.We are trying to get a bit fitter at the moment. It’s quite tricky because when she’s not been well or when she’s not sleeping at night, we often give into the lure of quick food and little treats. We’ve been going for long walks because Daisy’s loves the fresh air and it gets us both moving! We nipped to Costa for coffee, teacakes and Daisy’s morning milk before going to Haigh Hall. We’ve walked around there in many different directions but decided to see how long it took us to walk from the Hall to the Plantation gates (which is by the hospital). It was five miles in total and took us 70 mins – we enjoyed the exercise but just hadn’t realised how much uphill there would be on the way back!! Daisy had a long sleep afterwards because being pushed for five miles is really tiring!!On 20th May we were invited to the opening of Oxygen Freejumping in Wigan. Daddy had a brilliant time on the trampolines and was either reliving his childhood or entering midlife crisis mode! We watched from the cafe and pretended we didn’t know him when he was flinging himself around, doing flips in the air and launching himself into a giant airbag! We took the approach of ‘if you don’t ask then you don’t get’ and spoke to the staff to see if they could let us sneak Daisy on to one of the trampolines. They were really helpful and reserved a trampoline next to the cafe while we carried Daisy over. She really enjoyed it and they were making a fuss of her (which she always likes!).With the glorious weather that was wholly unbecoming of a bank holiday weekend, we had some lovely days out together. We got some more use out of our annual Chester Zoo passes (fabulous changing room there by the way!), had a lovely wander around Orrell Water Park and even dared to go out for a meal together!! It was so lovely to have no worries about how many layers she needs or getting her back to the car before the rain starts!In half term we were contacted by the physio from Derian House to see if we were interested in using the hydro pool. We haven’t been able to take Daisy swimming since her tracheostomy was done because school don’t allow it and any local pools are too cold for her. Derian want to start to have special sessions for tracheostomy children so we jumped at the chance! Daisy absolutely loved the feeling of freedom and weightlessness she had in the water and especially loved the floatation bed they have there. We’re thinking of saving up for one ourselves and seeing if school will let her use it there. We’ll hopefully be able to use the pool at Derian on a more regular basis now.Our review of all things maytime ends with a visit to the Sea Life Centre in Manchester. Daisy’s big cousin Ruby helped Daisy to do some of the art and craft activities and stamped her logbook as we went around each area. We were really impressed with how helpful the staff were at the rock pools – the lady got a glass dish, brought the animals to Daisy and let her touch them. It really meant something to me that they made an effort to interact with her and involve her in the activity.Well that’s another month in the life of Daisy Alice. Hopefully June will be as full of smiles and adventures x

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