Barretstown Butterflies

It’s always a great week when you get great results from doctors at an EB clinic, then spend a day at Barretstown with the most beautiful kiddies in the world and finally attend an awards ceremony!! 🤗

2 weeks ago today I attended a routine hospital appointment. It was just a skin review. Dr. Browne, Eadaoin, Katherine and to my surprise the lovely Suzi O’Neill was there. 

Suzi is the new EB nurse that will go on the road to visit EB patients in their home. It’s a very exciting new role for me, plus I know Suzi a long time and I adore her and think she is the perfect person for the job!

Anyway I got to the hospital and I have to say I was a little nervous. I felt I had been doing really well but was very unsure as to what they would say. 🤔

Although for the first time in months I had got dressed to go to the hospital! I was so unwell recently and in so much pain that I just lived in my pj’s and didn’t bother getting dressed. So that has to be a good sign. 🙏🏻

First things first! Time for my weigh-in!! Oooh, I’ve lost weight!! 😳 For most people this would be a great result but not for me!! I need all the weight I can get!! Ok, not a good start, now I’m extra nervous!! 😠

Let’s start taking off some bandages. We start on my shoulders and work our way down. 

For the last few weeks I’ve been using Fucibet, I like to call it my ‘magic cream’! It always works really well on my wounds, although I’m not surprised because the cream is mixed with an antibiotic and steroid so it never fails!! 🤗 The only problem with using that mix is you can become immune to the antibiotic and so it won’t work anymore. So you have to be careful how long you use it for. 😠

Ok, we’re a few bandages in and Dr. Browns seems very happy with everything she sees!! She doesn’t seem disappointed or worried about anything. This is going good!! 🤗

It may have gone really well but it still took 4 hours to get them done. Ugh!! I was wrecked 😴 But as bad as it was I was still able to go for a coffee with my aunt afterwards!! 😍☕️

I’m so glad that went so well!! I couldn’t be happier!! I have a busy weekend coming up so I need to be healthy and able to do everything. Time to rest for a few days now. 😴

It’s Saturday and it’s an early start. To be honest I’m still wrecked from the skin review on Wednesday. But I don’t care, I’m so excited for this day! I’ve been waiting so long for today! 🤗

Today is a Family Day in Barretstown for all our EB families! It’s going to be great, I’ve heard so many good things about it from the DEBRA Ireland team! 😊

I’m up early to get ready. The plan is to be ready when my PA gets here and we can head off straight away. 

I’ve decided to wear a vibrant pink dress with a ruffle on the sleeves. I love it. It’s a lovely, bright, summers dress. I’m wearing a black top under it to keep me warm. Barretstown is based mainly outdoors and it’s an awful day! ☔️

My PA arrives at 10.30 and straightens my hair!! Can’t go anywhere with frizzy hair – not a good look!! 😂 Then we hit the road. 

It’s only about 50 minutes to Barretstown from my house which isn’t too bad and it’s motorway most of the way which is so handy. But once we came off the motorway…OMG is all I can say!! It was the worst road I have ever been on. The potholes, bumps and winding road was unbelievable!!! 😱😱 I can’t put on mascara now!! 👁 Although I should be more worried about my bum right now! It kinda hurts now 😪

But we made it there eventually, thanks to Google Maps!! God knows where we’d end up without Google!! 😊 We got there and parked and we were met by a girl called Sarah holding an umbrella – it was lashing! 😡

It was so lovely there. It was like little schoolhouses were attached together and arts and crafts and other activities were going on inside. It was so sweet. We could hear lots going on inside them. Time to have some fun!!! 

All the families were scattered about so it was hard to go to one section. Some people were at Lego, some were on a climbing wall and I think some were even out kayaking!!! 😳 But soon after we arrived it was lunchtime and everyone came to be main centre. 

The room was packed with either people I haven’t seen in years, people that were completely new to me or the usual suspects!!! I was so excited!! 🤗

I was seated with my girl, Claudia and Gary (her daddy!) and some of the DEBRA Ireland girls and each table/family had 4 or 5 volunteers allocated to them! It was very well set up. We were taken very good care of by Barretstown. 

I couldn’t stop looking around with a huge smile on my face.😍 I was so happy to see so many families in one place. So many amazing people – parents and children. 👨‍👩‍👧

Wait til you hear this…when the kids were finished their lunch the staff of Barretstown jumped up and started singing and dancing. It was so cute, the kids were loving it!! 💗

After lunch Deirdre, the Patient Support Worker in DEBRA Ireland had organised a session in mindfulness. I was really looking forward to that. I’ve been saying I’d love to do it for months now. With all the pain I’ve been in I’d try anything to help it. 

The girl who was teaching the class was called Mary. She seemed lovely, very gentle and softly spoken! She was very keen to help me in any way she could. I also dragged a very reluctant PA along too! 😂

A lot of people came along to the class. It was good to see so many friendly faces there, some I knew and some I didn’t know! The class itself was so calming and relaxing! She taught us how to breath properly, listen to anything that was in the room and avoid our own thoughts and worries. 😴

After the class we went to the main centre and had dinner. There was lots more singing and dancing. Kids and adults were all joining in. It was brilliant to watch! 😂 

Then I just tried to get around to everyone for the rest of the evening. I really wanted to talk to everyone in that room. 

I got to chat to Claud all afternoon. Claudia has just started secondary school and she was filling me in on everything. 

I spoke to Jack Rynne and his dad, brother and sister, I also spoke to Miriam Quinlan, I haven’t seen her in years. 

I saw Gunita and her gorgeous little lady Maria. Maria has just turned 1 and had the same form of EB as me. But she looks amazing! 💗

I spoke to my sweetest little boy Liam. He agreed to be my future husband! 💙 I know Liam and his family since he was a baby and they’re just a lovely family with a gorgeous little man!

Finally, I almost ran around the place looking for Casey and her family before she went to bed. She just the cutest little girl and I love seeing her. She’s such a lively and chatty little thing!! Although I think she was wrecked herself! 😴

So, as you can see I was a little busy!!! 🙄 It was a bit mad but I didn’t care, it was so great to see everyone. I loved catching up with everyone. 

Although I did have to go have a lie down at one point. I was exhausted and I was in a lot of pain. If I’m really honest I was struggling a lot. I was sitting for so long and constantly on the move that it was getting difficult. 

I really needed to go but really REALLY didn’t want to. 😪 But my time was up…I had to leave 😪 Noooo……

Goodbye kisses all round 😘

We left at 8pm and set back on that bumpy road…oh god, seriously???😳 But I was tucked up in my bed at 9.10pm! 

Next up, Hidden Heros Awards Ceremony…

Lots of rest needed for a big day!!! 🤗