It has been a long but positive day in Dublin. This was the beautiful view at the pier in Dun Laoghaire where we stopped to get a breath of air after being in the hospital all day. We are continuing to progress, we have from now to Christmas planned out. The main event will be his throat surgery and further testing immediately after to see if it's made any difference to the levels of antibodies in his brain. We are out in a restaurant at the minute getting a bite to eat before the drive home, but it's not going well! Eating out can be an ordeal for Cameron, it presents challenges that get him quite distressed and a lot of the time now as I'm sitting trying to talk him off the ledge, I think to myself "is it worth it!" I know it's been a long day and the journey down in the car is tough for him, he gets very sore sitting and his stress levels increase 10 fold. I know important to try and do normal family things but you do ask yourself is it right to do them when he has difficulty coping.......
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Sadly some friends have terribly disappointed me over the last 2 years, others have supported us so well I will never be able to thank them enough or repay them. My sanity! Ha, well, what can I say! Do I still have it? Who knows!!! Some days I think it's still there and other days I feel like I'm going completely mad!!! Money, well I've had to take a career break to look after Cameron, it's a big decision to go without a salary for a year. But it's thanks to all of you, our community both here & abroad that we have been provided with the means to get Cameron better. My family, couldn't do it without them, they are there at every turn to support me. Thank you from the bottom of my heart Raymond Lemon & Grace McParland & Kerrie Lemon & Campbell Lemon. My darlin, Jonny Lindsay, I thought losing a baby would be one of the biggest tests our marriage would ever undergo, I was wrong ........we have been tested to the EXTREME these last 2 years, but do you know what, we are stronger than ever and I love him with all my heart. I do think that I have lost myself slightly, I'm so swept up in this crusade, sometimes I'm not sure who I am any more. I'm certainly not the person I was before PANDAS . Maybe someday, when things calm down, and we are out the other end of this journey I'll get a chance to get to know myself again..... However, when all is said & done, I'm still taken aback by the fierce determination that comes from within me, that drives me forward to keep fighting for my boy. 💙 Back for another raft of tests! We've had a full day of doctor consultations and now getting more blood taken. He was very good during it, and we're now waiting on the lab spinning it. Because he's in a flare at the minute it's crucial to get his brain serum couriered to Copenhagen for an up to date picture. Throat surgery is scheduled for pre-Christmas :-) Treatment plan progressing Cameron has had a good morning :-) he went into school for 1 hour today with his helper (aka his home tutor). He just sat in class and observed for this morning but we're taking it in baby steps :-)) this is a huge achievement for him! Very proud, very emotional mummy today. Well that's our first PANDAS awareness day event over. Thank you to each and every one of you who came to help & support us, we really really appreciate it. (It was possibly for the best that I was running around like a headless chicken today, it helped distract me from thoughts of last night). It was a great night, the Samba band were class! I'm already full of plans for next year :-) As I sit now, on my own, thinking about the day, thinking about how far we have come, how far we have to go. Thinking about our journey up to this point, thinking about the family and friends who are there to support us at every turn, at every event, every crisis, you know who you are! I'm so grateful for that unfailing love & support, we would not have come this far without you all. Lots of people were asking me tonight, "how to you keep going Natasha?", "how do you do it?" Someone sent me a quote recently that reads "You don't realise how strong you are until being strong is the only choice you have" I whole heartedly concur. Annie is asleep, my darlin is on a well deserved trip to see his 'Wee Country' play, Cameron is with my mum & dad until Sunday. I'm heading to bed now, wake me on Sunday about noon! Nite nite. Xxxx I feel punch drunk today, the morning after the night before. We are making progress, we are moving in the right direction, we have 4 hospital consultations lined up for next week, we are now able to use the knowledge & treatment plan from our USA trips to forge ahead. I've always known there is no quick fix for this condition, I know it'll be another couple of years moving through different treatments before we are coming out the other side. It's just when you have nights like last night you, the full realisation of continuing to manage him while treatment is ongoing is fully laid out in front of you............ A point to remember - he won't allow me to hug him or provide any comfort to him when he's like this. (Go to the video footage page on website to view this clip) Starting World PANDAS day of with a heavy heart..... Cameron had the worst night he's had in over a year last night.......the pain, the distress, the sheer terror & angst, the complete torture that was in his eyes is haunting me this morning. I'm trying to focus myself on the task ahead. But I'm in shock that the horror nights we experienced last year have come back. It's frightening me..... It was so bad I had to call for help, I feel like I've been through a high spin cycle and spat out this morning. These are snippets of last night, I will warn that they are distressing but make no apologies for posting. A point to remember - he won't allow me to hug him or provide any comfort to him when he's like this. (Go to the video footage page to view this clip) Stapling into the wee small hours! Leafleting the local schools today & tomorrow about the event on Friday :-) This is not primarily a fundraising event, it's an awareness event. My mission in life now is to change the journey and make it better for those families coming behind us & in order to do that we need to get the word out there about PANDAS. And it's good to be giving something back for all the support we've received. So pop in for 10 mins, listen to the Samba band, get a glitter tattoo and have your picture taken with a minion - while learning a little bit about PANDAS 💙 Our boy was well and truly cheered up today, when he got to meet Rory McIlroy !!! A selfie for the wall :-)) Life is just too much for him today..........he has spent most of the morning just sitting on the sofa crying..........distressed by everything....... We've had to send Annie to a friend's to stay for the night because he just couldn't have her near him. 'Life with PANDAS' |
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December 2015
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