Ivy Bravery Day

365 days =

550 injections
5110 blood tests
4 Intravenous cannulas
72 Subcutaneous cannulas
1 999 call and a life saving glucagon injection
6 Inserted cgm cannulas
9 Hospital admissions
8 Clinic appointments
28, 884 Carbs counted

...and I've lost count of the jelly babies!

Today is 'Ivy Bravery Day'. April 13th, is her diaversary, the anniversary of her diagnosis. This time last year she was so seriously ill that we came close to losing her. Every day I feel blessed for every breath she takes, every smile, every cuddle, every time she says "mummy best" and looks at me with those cornflower blue eyes. I love this little girl more than I can ever express. April 13th her life was saved and ours changed forever.

I will always be more than grateful to the wonderful team of doctors and nurses who worked relentlessly for hours to stabilise her. The team who taught us to care for her and to enable this little girl, full of life, to live her life to the fullest.
This has been the hardest year of my life, I have experienced stress and anxiety like never before. My heart has been broken but with the love and support from our wonderful friends and family,  it has almost healed. I will always grieve for the carefree life that I imagined Ivy would have; she will face the type 1 battle for the rest of her. As her mum I would take it away from her in a minute and take it myself but that is beyond me, until there is a cure she will have Type 1 Diabetes. What I can do though is I can carry the burden, I can fight her battle and I can protect her from the condition for as long as possible. Although  (as many of you know) she already wants to be a part of it, she tests her dolls blood all the time, they all have cannulas and she helps to weigh and carb count  her food! All of which we have never deliberately shown her. She is a sponge and learns so much from her environment.  Sometimes it's impossible to keep it from her!

I had never truly appreciated the importance of medical research; of course I know how important it is but until now I would have read about a breakthrough with mild interest and probably not given it a second thought after I closed the browser or magazine.  Now however I get so excited about stem cells, encapsulation devices, smart insulin, beta cells bionic pancreas'. The list goes on. The breakthroughs being made in diabetic research are ongoing and fabulous. I firmly believe that Ivy will see a cure in her lifetime and we would sell our house if it meant we could give it her.

I want to thank Sam for being my rock. These things are sent to try us and without him I would have burnt out. The best daddy Ivy could wish for.

My friends have amazed me with their love and understanding, with their generosity of time  and shoulders to cry on. Many of them have risen above what a friend can do and unfortunately I have some who have shrunk into the shadows. I am ok with this, I know that friendships are organic and some come and go, I am in love with those who stayed.

This year Ivy made a very special friend, a little boy called Iver, he also has type 1. You honestly couldn't have written  it. His mum is also called Emma! some people are meant to be in each others lives! Ivy and Iver are already firm friends. When they are together blood tests and pumps are normal, the most normal we could ever wish for them to be.

Ivy is a social butterfly, always with friends, she loves them and they love her. They will help Ivy lead a life full of fun. Be them 1, 4, 6 or 17 they already looking after her, they are curious and want to be part of her type 1 life..even.if it is just for the jelly babies sometimes..

Of course our families have been incredible this year,  you can't choose your family but if you could we would choose ours!

This year has taught me a new kind patience. A patience for lack of understanding. Some people don't get type 1, I have heard it all "why haven't  the doctors got it under control?" "When will she grow out of it?" "It's not cancer" "It could be worse". This one I find hardest and want to scream sometimes. There are many horrible conditions,  type 1 is one of them, it is relentless and exhausting for Ivy. At this moment in our lives it is the worst. Day to day it requires constant brainpower and thought, a balancing act between food, insulin, exercise, stress, excitement, growth spurts, teething, illness and the weather. Yes the weather. All of these factors  have an impact on Ivy's life and how she feels!

The last few weeks have had a strange feeling of building suspense. I knew it was coming, I have had flashbacks of how poorly she was. Her little body covered in wires and cannulas, her head shaved on both sides. I have kept myself busy by making her anything I can sew. I made her a magical teepee, a dress,  a new pump pouch and most recently a Sugar Fairy. A fairy to look after her. This weekend, the one where we are giving diabetes the finger, it has reared it's ugly head and due to an infected cannula site Ivy has had 3 days of hyperglycaemia. Her bloods are running high and she has felt awful. She hasn't been able to sleep and yesterday she cried for an hour. I gave her the fairy early and explained that she knew Ivy was feeling sad and wanted to make her feel better. Ivy took her in her arms, sat under her princess canopy in her book corner and cuddled her for 5 minutes and didn't put her down for a further hour. The fairy worked her magic, thank god, she took me hours to make and can you imagine if Ivy just tossed  her to one side? :)

Ivy bravery day will be a day for Ivy. Her day to celebrate how wonderful she is, for the highs and lows (literally) that she faces every day of the year. For her  first Bravery Day, we are going to  the zoo. She loves the story, Hug, about a chimpanzee who is looking for his mummy. Tomorrow she will see Bobo! We want to create a million positive memories for Ivy to treasure. It is a blessing that she was so young when she was diagnosed, she won't remember anything from April 13th 2014. All she will know is love and support from everyone around her. Friends, family even her diabetes team at the hospital; a wonderful team always there listen to me, to guide me, to help me and to fight for the very best she can have. The latest pump. The best in constant glucose monitoring. I even have to be grateful for our GP who never questions Ivy's prescription requests, believe it or not,  some families have to fight for test strips and even insulin..in the UK. It is insane.

We have come through this battle as a family, I am sure the first year will be the hardest but we are smiling. I still get moments of panic and anxiety but I can do this. Ivy is my inspiration. She can do this and she does it with an infectious and positive radiance.  What's not to inspire?  Our little type 1 fighting, icecream loving, superhero. Who will be 2 next month!!

Where has that time gone?

My message for Ivy.

I believe you are every kind of amazing. Unique, clever and beautiful. You are everything positive in this world. Smile every day and love as much as you can. Enjoy every precious moment of a life that was almost taken from you. Type 1 doesn't own you, you can do anything you want in life, go to India when you are 16! I will be terrified but dear friends have shown me that you can do it! Diabetes isn't the only thing in your future. I am so proud of you and honoured to be your mummy. Proud to be able to say we had a bad night because I would take a million of those to million without you. You are our miracle.

I love you.