When I am in the thick of it I can't really think about it too much. I have to keep putting one foot in front of the other and move through each day as it comes. It's not until afterwards that I can fully process and reflect on our journey.
It seems though, for every challenge faced there is also something to be grateful for.
It is good to keep one's eyes wide open and look for joy I think. Yep there are times when this is a challenge but if I don't try to find joy then I will drop my bundle for sure!
So the highs and lows of November.
- fasting and feeling 'hangry', feeling worried about getting a midline instead her usual longline but said midline insertion going in beautifully. These Dr's are amazing. They are truly gifted at working with kids and helping them to cope. They reallly work hard to care for and accomodate the kids.
- blood sugar levels all over the place and finger pricks every few hours but a diabetes test that was clear-for now.
- being angry and scared about having a new procedure. On the day this was scheduled however, the hospital had their annual Christmas fundraiser. It was a great distraction for us and a busy, exciting day with lots of good things-holding baby animals, exploring a firetruck, a reptile show, krispy kreme donuts, wonderful performers, photos with Marina Prior, The Collective, Damien Leith, Paulini.
- a somewhat traumatic insertion of a nasal feeding tube for night feeds but putting on 3kgs weight in 2 weeks!
- being nearly 12 and processing feelings about living with a life shortening chronic illness-a challenge for us both. So proud at the knowledge our girl has developed about cystic fibrosis and in awe at her ability to articulate her feelings. She is wise beyond her years and she teaches me so much every day.
- enduring blood tests but having stable medication levels
- missing home and being away from family but having a surprise visit from the coolest people ever!
- being 'stuck in hospital' but reading lots of books, going to the hospital school, visiting the starlight room and finding an old friend from a previous hospital admission, afternoon physio in the gym, being spoilt with gifts and mail from family and friends and getting a pass out on our last day to have a special pancake lunch with beautiful friends. Thank you beautiful friends.
- missing school friends but logging onto your class blog to 'chat' with them and having your teacher let your friends ring you up on his mobile.
- feeling overwhemed and daunted by the future and what this journey of living with cf will bring but knowing in our heart that we are loved and supported by our beautiful friends and family and cf team who go above and beyond to care for our girl. So very grateful for their care and dedication.