Wow I cannot believe it’s Christmas Eve already. I’m quite sure someone came to me in my sleep and stole away the last few months. It truly only feels like it’s September and that the kids have just gone back to school.
It’s a stark reminder how quick life can pass you by. How easy it is to get caught up in the stresses and chaos of life that you actually forget to live.
Over the last few weeks a couple of my friends have faced the ultimate pain of losing those they love. Watching them walk this painful pathway has made me think a lot about the way I’m allowing life stress me out. How I’m forgetting that each day is a gift that needs to be lived.
Livvy taught me about the “magic of the moment” but I think that somehow without her to remind me I’ve lost this a little.
My life is going to be busy in 2016, along with my family, my Universty course I have also become active in my local Labour branch. All these things are important to me and will require my time and energy. Yet I also have to remind myself to focus on the magic of the moment.
So as I wish you all a Merry Christmas I also ask you to join with me and as we head towards the new year looking forward with a sense of anticipation.
Be excited for all that’s to come but also remember to carefully find your magic in the moments.
Laugh until your sides ache.
Cry until you hiccup
And love with all your heart.
Find the magic in the moments, create those memories and make each day count.
Throughout our lives we find ourselves becoming parts of communities, part of set groups or to use the sociology term subcultures.
Be it a group of work colleagues , all the technicians together. Be it a parenting group, parents of two year olds please hang here. We come together through shared experiences or passions.
We are never really ever only in one group, different aspects of our lives play into different groups.
Myself I belong to many, parents of teenagers, parents of 12 year olds, foster parents and also the one group I really wish I never had to join parents who have lost a child.
All these groups I am proud to be part of but one thats on my heart right now is parents of children with special needs, especially as I like to call them my Special Kids in the UK family.
This is one amazing group, you find us in all shapes and sizes . We have varying beliefs and certainly different personalities. Our children have different conditions even with the same diagnoses or in some cases no diagnoses.
So what makes this group rather special?
We can bitch and moan as good as it gets but when one of us is hurting we stand along side them.
If you were my friend on Facebook today you would see that my news feed is full of pictures of Minnie mouse. These pictures are our way of showing one of our members that we stand beside her. Most us wish that we could literally be standing beside her tomorrow as she lays to rest her beautiful son. We wish we could swap our virtual hugs for real squeezy ones.
But we cannot,
Life, children and distance keeps us separated. Yet nothing will stop us thinking and sending our love and wishes in support, compassion and remembrance tomorrow.
This same group right now are also sending prayers and healing to children in hospital. Sending strength to parents who are utterly exhausted. Families that are at breaking point.
At times we cannot offer more than the words “I’m here” but believe me over the years those words have meant a great deal.
I am blessed to be a member of this group. For over the last 8 years they have been my strength. I have made friends whose friendship goes over and beyond the fact that we are special needs parents.
When I lost Livvy one of the crazy worries I had in my head was that I would lose these friends. How wrong was I, our children may have been what introduced us but they aren’t what bind us.
Maybe our binds are forged in exhaustion, endless battles with professionals and way to many late nights. Maybe they were joined in the many melt downs and medical jargon and repetitive forms.
Who knows, who cares, regardless of the why there is simply the just is.
I am so thankful to be part of this unique subculture to know and to share my life with these crazy people. At times I am not sure I would have coped without one or many of the group members.
Together we have faced the worst.
I am so grateful that one day many years ago I stumbled upon a small yahoo group. I have watched in grow over the last 8 years watched the number of members change from the tens into the thousands.
Being a member of this group means that although we may be facing uncertain futures with our children. We are never facing them alone.
So am I the only one breathing a sign of relief now that Christmas is nearly over.
I find it all so stressful, the wrapping of the presents the writing of the cards, the remembering of everyone names and the names of their children. It all sends me to the verge of insanity and lets not even mention the Christmas dinner.
At times i have actually felt physically sick with all the stress and as you can imagine stress effects my illness and my body seems to just surrender to any virus’s going around. So far i’ve had the sickness bug twice and the flu, migraines you name it I will list it.
Of course the joy on my kids faces on Christmas morning was worth it. Even the teenagers were happy for a couple of hours.
But I am tired to my bones.
Its been a strange one but a good one, as i mentioned the teens have been bearable, the husband helpful and the two little ones well hyper doesn’t seem to come close to describing them. I admit to wishing they had an off switch over the last few days. Why does excitement have to be so loud and Autistic melt downs well they certainly wasn’t on my Christmas list.
So now I could do with just some down time, I’m slightly fed up of Christmas trees and flashing lights, toys going off randomly, gifts left in the living room as the bedrooms are full to bursting. Bins overflowing and half eaten selection packs.
Kids requiring food at least three times at day. ( I miss school dinners).
Television full of Christmas specials of soaps that i never watch throughout the rest of the year. Films that have been watched numerous times before.
Relatives visiting. (of course they were very welcome).
I just need my order, my routine and just some peace and quiet.
So yes Christmas was lovely but yes I am ready for it to be over.
It’s so peaceful here in South Wales it’s such a uncommercialized area, just beauty in the natural as God created it.
I confess I really don’t wish to go home. I’m at peace in such a way I havent felt for what seems such a long time.
Years ago when we first got married Alan and I had considered packing up and moving away to somewhere like this, but I think the fear of the unknown stopped us and of course the need to be where the jobs was.
Do I regret our decision to be honest I don’t know, with Livvys health issues it was nice knowing that an ambulance could be at our door in less than 10 minutes and that a fantastic children’s hospital was a 30 minute journey away.
Would I move here now?
I don’t think so I’m not sure my girls will be happy to give up the life they have known, the schools, the friends the boyfriends and I’m not sure I could live Livvy’s grave even though I know she isn’t there.
I have really enjoyed my week at the beach and I know my youngest would move in a shot, we have discovered she is a real surfer chick but life here full time would be different.
Maybe if we win the lottery a move may happen or at least a holiday cottage.
Never have I felt so relaxed but i do wonder if I would have been so calm if the teens were with me. Besides a few autistic melt downs it’s been so peaceful and having no one tell me that I am ruining their lives has done me good for a few days.
Oh well all good things come to an end. Homeward bound tomorrow then the evening will bring the return of the monsters we call teenage daughters.
I may have missed them a little but I sure after they have been home an hour I will feel different.