Who makes the rules that clocks have to change?? It's pants. Months of getting Mikey into a routine of sleeping till between four and five have now been gazumped back to the wake up call that feels like between three and four... and bedtime is whole new issue, NOT GOOD! He may be able to survive on little sleep but I need more than a few hours every now and again. He can't help it and he is instantly forgiven with his gorgeous smile once my eyes start working but YUK! Clock changes need to stop.. for the sake of our kids and their parents sanity. Grump over. Thank you.
A week of mixed feelings and emotions. Need to thank some special people who are my "rocks" In no particular order:
My friends at a support group I belong to Special Kids in the UK www.specialkidsintheuk.org I have made many friends there with parents in similar and different situations, no where else could I talk about some things and receive honest open replies and no walking on egg shells.
Mikey's hospice www.standrewshospice.com for the love care and attention Mikey receives from there and the fun he has and also the support I receive from there. Again an overwhelming appreciation for the emotional and practical support to us both.
Family and friends for being normal I guess. I know some things I cannot discuss with all, perhaps due to me being aware of their feelings rather than my own and not wanting the walking on eggshells response. Having said that I met this week with a friend who has known me since I was a child. Due to life I hadn't seen her previous for six years yet I was able to talk to her about everything and everything. She always was and still is a special lady in my heart and i won't be leaving it another six years until I see her again!
And most of all thank you to my beautiful boy just for being him. I am so lucky he is my son. He humbles me daily to smile and smile even when he is poorly. I could write all day about the Mikeyisms that make him so special but I want the world to know how happy I am to be Mikey's mum and definitely the luckiest mum in the world. Obviously I would change things to make his life easier if I could but I cant so acceptance is key on that part which I guess few understand.
I'm guessing you think where has this all come from in the PhD of Mikey's life, it is in fact in thinking about departure from life and preparing for that which obviously I hope will be a long time away but reality forces certain issues and emotions which I am learning to deal with. Discussions this week have been poignant in the process and I wont go into details but those who have been a part of that this week, thank you for your support, openness and friendships and many hugs for all. xx
...that if you dont turn the oxygen concentrator on it will not turn air into pure oxygen as it is supposed to but will just "alarm" causing the same effect in me.. yup I did it again last night... child asleep, unravel the tubing and mask, turn machine on and "BEEEEEPPPPP!!" This is not the first time so I should know to check... somehow looking at the little light that comes on too isnt going to make it work but that is what I do.. I am just about to go get the emergancy cylinder and then I realise... SWITCH IT ON AT THE PLUG!!! Perhaps due to tiredness or being a little emotional?? Nah, just me being me! Lol. No point to the post, just a snippet of life in our house last night. :-)
...literally but hey ho! I don't get how it is easy to be all happy and sad and back and forth through these emotions in short spaces of time, surely one must outweigh the other. Not sure my waffle is making sense. The move in schools is so far so good and Mikey is happy little bunny. It helps that his new LSA knows him very well and he adores and responds so well to her so I am very optimistic that this part of his life is a successful move and although the changes in routine is going to confuse him a little, he will come through smiling all the way as he does so well! Yet on the flip side a meeting this morning brings home reality of his health issues. I wish I wasn't so good at burying my head in the sand, then such things may not be such downers. Don't get me wrong the meeting was a success with prospects of new provisions being put in place to help him and me with his changing needs. But to hear sentences out loud like "life limited" and"health needs have been on a plateau but are changing" do get to you. The idea of the meeting is to get the "virtual" team together and discuss ways forward. Always a great idea as when so many people involved who are working to help Mikey, it is important they all work together even if not literally to make him happy and developing within his potential, which is where the virtual word comes from. So I came away happy that we are getting help needed but my head literally hurt with the reality of what is happening to my boy. But as I always say, Mikey keeps smiling so I have to, but sometimes you have to allow yourself to feel the negative emotions or you would pop...I am just aware that I am allowing myself these negative feelings alot more than I used to... perhaps it is part of the process of accepting our lot but its not good. I need to be happy and strong. If I crumble, my boy has noone to be strong for him. I know when he comes home tonight and smiles at me all will be well again, as it has to be and besides which, with a smile like Mikey has for me every day I can no longer feel sad, just pure love for my lil man.
... there are so many parents of special kids have to fight to get their children what they need... hence the word NEED and not want (and the latter is usually the case too!) I'm not even talking super dooper sensory equipment that costs an arm and a leg, am talking everyday rights to services and equipment which help our children. OF all the battles, a recent one has been very important for Mikey's well being. I won this battle (much to my and many others) surprise, don't get me wrong, I would have kept battling for this particular provision but it hasn't turned out to be as long winded (or expensive) as was perceived.. though nine months is still a long time of the stress and saying the right things to the right people in the right order meant it was a tough one all the same. When i recently learnt of the victory I was jumping around the room. Now the results of this battle will come into place a week today. It means big changes for my boy (and me) I know the right decisions have been made but apprehension comes with change. Not only the motherly worry but the practical and emotional effects on Mikey in this huge change in environment and routine. He is perhaps more resilient to it all than I am going to be and i hope will cope well with it all. Needed to blog my emotions as kind of a roller coaster for me and perhaps fortunately my lil man is clueless to the impending changes. Should I be able to explain to him I would but I cant find a way to make him understand. I ask for vibes that the changes do not shock him too much and that he settles into a new routine with ease. Just wish I could tell him what is going on to ease any confusion he may have and hope above hopes the positives outweigh the negatives.... which I am sure they will. But it's my job to worry so allow me to indulge.