Dear Owen - A year after coming home

Dear Owen,
                       Today we celebrate your one year Anniversary of your "Homecoming" The day when you finally graduated from special care. After 12 weeks and 5 days it was certainly a long time coming. At times during those "dark days" It seemed like a unreachable dream, But each time my hope started to fade you would fight harder and surprise us with your determination and turn that corner that needed turning and my hope would reappear.

I have learnt so much from you and from being your Mummy. You "Rocked My World".  When I walked with you down that narrow path between life and death, it couldn't help but to change me. It is hard sometimes when you feel your own personal world has changed so much to understand how the wider world has stayed the same. I admit I do, at times, find it hard to feel compassion for people with problems that are so easily solvable, if only given a little bit of time an effort. I just wish more people could understand  what you have taught me that "life is  a gift."  so don't waste it. Don't get me wrong I am a willing sympathetic ear to those who choose to confide in me. Another thing this whole experience has taught me is the true meaning of Empathy. 

I am amazed at your strength my little warrior, you inspire me to keep strong.
I am not saying to you that every day will be a battle, But I am afraid to tell you, but it is true you will have to work harder to do things that others take for granted.

When I think of how far you have come during this  first year  home, I am immensely proud. This time last year you seemed so fragile, coming home on oxygen at the start of the cold and flu season. I remember feeling so protective over you (.. and rightly so) Doctors, consultants and nurse all warning me, even if you caught so much of a sniffle it would most likely bring you back in hospital and could have severe consequences.  With hand gel at the ready, minimal public outings, visitors told to stay away if even a hint of feeling unwell and a rain cover acting as a shield. we spent as much of the winter in hibernation as possible.
Spring finally sprung, and we said our final goodbyes to the oxygen cylinders that filled our house.

It frightens me that Mummy won't always be able to protect you. Sometimes I worry people will find it hard to look past your disabilities and focus so much on what you can't do. They will miss the joy that you bring and not care about all that you have accomplished.
They will focus solely on your differences.
Maybe not always directly, Some people may hurt you with words. An inappropriate comment, Jokes told at your expense or cruel words muttered. Either way these words will hurt.

Yes My Owey, mummy is always pushing you to try harder, she is always dragging you to appointments and to therapies and opps class.. but if you want to know a secret.. my favourite thing in the world that we do together, is to snuggle!!! I especially love our little chats and that smile of yours.... What can I say about your smile.. Its the most beautiful, magical thing.. And I know for sure that your smile will always make others smile.

So my Owen, what  a busy year we have had. I can't wait to see what adventures are we going to get up to next?

Love You Lots Always
  Mummy
xxxx

Busy, Busy, Busy!!!

Wow... I sit here at the laptop, glass of wine to the right of me... I last posted here over a month ago!!!

What a crazy, sometimes stressful but mostly insanely busy month that has been.  This has truly been the first time and the first chance I have had to sit down and write.

 It feels like Owen has had zillions of appointments this month.

• Physiotherapy and Occupational Therapy has been stepped up to a block of weekly  intensive sessions for a month.
• Opportunity Class has now become twice weekly.
• Owen has had a initial community paediatrician appointment.
• Owens equipment has arrived and a rep from the company has visited to fine tune it.
• Owen has been assessed for further equipment, which will be again mainly positional. A squiggles set with is a padded support system with lots of Velcro, cushions, wedges. foam tubes to help Owen get in and maintain healthy positions  during floor time.
• Owen is being assessed for a sleep system again to help maintain healthy positions while sleeping.

All that while doing all Owens normal routine of massages, stretches and play therapy. Don't get me wrong, I am not complaining.
I will go into more detail of a few of the above as and when I can, bear with me on this one.

Also the rest of the family have kept me very busy.
Bethany has been looking around all of the local secondary schools as we are in the process of applying. This has been very stressful. Bethany particularly has been feeling the pressure.
 
Work has been particularly busy and stressful for Alex during the past month.

On a lighter note I have also been busy planning Lillys' 6th birthday and her birthday party this coming Sunday.


So as you can imagine, yes I have been very busy... so I apologize for my absent and will try harder to keep this blog updated.

Thank you for your patience.

xxxx