To not worry

Its hard to write something inspiring or positive when you just want it to stop, just for a moment. A moment of no worry for my girl.

That worry infests so much of our lives. She has been very ill since the procedure, and continues to be. It is scary seeing her body working hard to fight the virus that has also infected her parents. We are over the virus in a few days, Abbey is looking at 3 weeks.

She has been so lucky with minor illness this year, just the odd snotty nose. But this, this is scary. Her body does not react like ours has. Back to the doctor to check all is ok, again … her lungs are clear, the virus is moving on.

The experience has us thinking how to cope with the next one. What do we need to change so that it will be easier? Honestly there is not a lot, its more about being ok reaching out to our network to ensure life can keep moving along for the boys and our own respective jobs.

Reaching out has been hard this time, as we are asking more often. Its primarily getting the boys to places they need to be, including school and Scouts. Abbey cannot travel when she is this ill and we need to be present in case. The boys understand if we cannot find a solution that does not overly inconvenience another, it just won’t happen.

Im now resolved that there will come a time when the boys may need to be home schooled with the assistance of their teachers, as we need to be together as a family or they need a break from the outside world.

Its all just moving a little faster than we would like.

Resilience

t’s the development of the resilience muscle that gets any special needs parent through the never ending hurdles. When we think we cannot take anymore, we learn a new strategy to cope. We become exquisite at knowing when the resilience muscle is loosing strength and flexibility. Most times we are so caught up in it all, we miss the signs and at other times so much is thrown at us that we just hope it does not snap.

Right now, I know my resilience muscle is close to snapping. Too much has been thrown at us to deal with it all at our best. From Abbey still recovering but getting better to James coming down suddenly with the flu, camp preparation for Dan and a work expo for the business all this week … I’m just shaking my head.

So we are aiming for making the best of it all. Putting into place contingency plans in case Abbey goes downhill, others become sick and ensuring our plans made months ago will come to some sort of fruition for the family and business.

I’m working on getting some strength and flex back into my resilience muscle.

Hospital queues

Today we are spending the day in hospital to find out what is happening to Abbeys gastro system. Here we wait for the VNS to be turned off before heading to the procedure room. Abbey will be going under general anaesthetic. I have started a newborn wool cover for cloth nappies. Let’s see how much I get done! I’ll post through out the day as we advance along the waiting queues.

Adapting

Activities I dislike doing, but need too when I know a big seizure is coming:

Showering
Brushing teeth
Sleeping
Checking the mail
Being on the phone
Gardening
Cooking

Why?

Because I cannot hear her, cannot get to her fast enough or it can be dangerous (I managed to melt a microwaveable vege steamer a few weeks ago).

Sometimes I’ll brush my teeth in her room.
Sometimes I won’t answer the phone.
A lot of the time my garden dies from lack of attention.
Sometimes I hand bathe so I can hear her.

Adapting is key.

Rangehood holes

Today 2 more medical appointments came in for Abbey. There are a few more days gone to driving, waiting and brain strain. It’s no wonder we just cannot get to small jobs around the house.

It’s ok now. I use to become very frustrated as to why we just cannot get stuff done. Now, I know. It’s what we do to manage our family that is priority, everything else is second. 

The holes around our new kitchen exhaust fan are many months old. Instead of being a reminder of what we should be doing, they have become a reminder of the joy and family time we prioritised today.

It’ll get done when it moves up the priority list or we find ourselves with nothing to do one day! Those days will come, but I don’t want it to be soon. I’m happy to wait decades, because then I know Abbey will be with us.

 

13 years old – we made it

13 years old today.
13 years.
We never thought. 
It’s hard to process we have come this far.
This is not only a celebration of Abbey’s birth day, but an acknowledgement of how far we have come and what has been achieved.
Now we party this weekend with friends who have become family.
She is joy.

Humming Bird Gala Night

It started as a reason to escape for a little while, but ended up being a beautiful readjustment to my reality.

Last night, Abbeys previous carer, Madi and I attended a Hummingbird House Garden Gala Event to raise funds for its continued existence. Every year they need $2million to continue operations. There are 3700 families who need their services, including our family, our Abbey.

If 3700 people donated $37 for 12 months, they are a significant way towards that goal.

It’s as easy as not having 2 take away coffees each week.

A few wines, pretty flower walls, great company and my first live auction made the night magical, and an escape.

The courageous sharing from a Mum and Dad who lost their son last year and what Hummingbird House provided to assist them through that process was too much. A quick dash to the back of the room to cry in ‘private’, but still able to listen to their story, was a slap back to my reality. That will be us one day. Will we be as brave to share our story, our loss, to assist other parents?

For all Hummingbird House give us in support, love, memories and time, we can only try to give back in whatever capacity we can to ensure other parents and siblings have access to this little slice of heaven. This is a very special enterprise.

Update Marijuana oil trial

After Abbeys last neurology appointment we have decided to continue for another three months. She is still experiencing hair loss and gastrointestinal issues which when first mentioned to the medical team, they were surprised and not sure if due to the oil. Now we know another child has hair loss. Why? They don’t know.

As for the gastro issues, this is more complicated. Abbey will be going under a general anaesthetic soon to check her insides. It’s common for kids with CDKL5 to develop intestinal issues around the teenage years. We want to see if we can stay one step ahead for the first time, having some idea of what she is heading into.

The seizures continue to evolve and frighten me, to be honest. Today my girl had 2 big seizures in a row. It’s a first, and I was battle stations ready for hospital. She is ok.

But…

She continues to defy ‘them’ all. My girl reaches out to be cuddled. She loudly protest when hungry. She will walk with assistance. My girl continues to make huge strides forward given all that is happening.

(By huge strides, it really means very small steps in development. It’s consolidation of previous development. For Abbey and her family, we celebrate every massively tiny milestone. Today it was clearly advising she was hungry and ‘talking’ about it for a while after, ensuring we understood she was hungry and we were too slow.)

Photo: Given it all, I’m working on ways to shift the brain to another state. It’s hard to find comfort or escape in quiet activities like knitting or reading at the moment. I’m needing to switch the brain to something new. I’ve taken to cooking recipes that take my fancy, to the benefit of those around me. Last week was pumpkin and pomegranate cake, today was popcorn health balls. Bloody sticky mixture.

My turn for sickness

One extra strength hot toddie.
One bowl of salted caramel and banana ice cream.
New teeny tiny knitting needles. 
Next episode of Versailles.

Abbey has shared her cold with the family. She is now super bright and bubbly, ready for action. Obviously feeling much better.

I’m ready for bed