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.

 

Whatever Goes

Cooking meals still continues to elude me, in terms of recipes that don’t require dedicated prep time or just deciding what to have. My brain is overloaded and the need to eat or feed the family is a huge stress.

I know how to cook. I love to cook.

Its the medical care of Abbey that makes it hard.

Recently, cooking sausages took about 40 minutes as I had to stop and start the stove top to attend seizures. Last week I melted a microwaveable vege cooker, with the vegetables mixed in with the melted plastic as Abbey had a long seizure and I stuffed up the timing on the microwave.

We use Lite n Easy some weeks. Some nights we do platters of food and everyone gets their own.

We do so much more pre made stuff now that can be heated or put in the oven. It removes the potential of setting the house on fire while we attend seizures.

But what we eat must be healthy as we are all in this together and it’s hard. The boys are learning how to prepare salads. Dan is learning more about microwave cooking and basic oven usage.

It’s getting easier to find the balance between our previous home made yummy meals and pre cooked ,mass produced Lite n Easy. We are lucky we have options that are flexible to suit our daily needs.

It was my need for continuing to try and keep the norm that was making it harder.

Tonight it was a picnic on the floor with crackers, dips, cheese and meat while watching Black Panther.

Chaos

We are full steam into the chaos!

Midnight vomits, missing pump machines, drug changes, seizure weirdness and the normal family needs.

Abbey is not wanting to engage the past 2 full days at hospitals and doctors. She is also unwell with a cold. It’s long days in a wheelchair waiting to see the next doctor. Today she has been jabbed 3 times for bloods, hormones and flu vaccine. She survives with massage and a comfy bunny to sleep on.

Mum and Dad survive with exquisite organisation, coffee and secret hand holding for support as we watch our daughter manage this unfair load.

Tonight we will take a family moment with make your own pizza and a movie.

Clearing time to Clear the mind.

CDKL5 is continuing to challenge my time as I medically care for Abbey. From seizures to hair thinning to skin integrity maintenance to managing the admin and therapists/doctors to just having fun, it is doing my head in. Every day what I think is or should be normal ‘sky rockets out the window’. When I think I have a grip on our new ‘normal’, it shifts again.

So the past few days have seen us say yes to new things and no to old thoughts. Coming to accept a new normal as often as we are, is challenging in itself.

And by a new normal, I mean a new routine, a new rythmn and new worries. It’s changing very fast.

Goodbye to stressing about getting housework done.
Goodbye to feeling guilty for not calling family or friends.
Goodbye to decisions in my business that don’t empower or help me thrive.

Hello to, Wally, our new robotic vacuum cleaner.
Hello to asking for assistance and giving little gifts.
Hello to socialising with empowering women.
Hello to cocktails nights.

It All Happens At Once.

Any special needs family will agree that trying to accomplish anything more than just caring for your children, can be futile. However if we choose to take on a project, with extensive planning around the needs of the children, it will always go off kilter.

After 18 months of planning we have started the front wheelchair deck out front. And it has not gone to plan, who would have guessed?!

On the morning of digging and moving dirt a week ago, the contractor cancelled 20 minutes before starting. James scrambled to find someone else, with no success. He has a week off work to start the foundations, it needs to happen.

Much to his delight, James hired a small excavator to move the dirt and break rock. All week he has been a ‘real’ tradie.

As you know we have also started the marijuana trials, which have been weighing heavily on our hearts and minds.

Today, the seizures are the same. We are onto day 2. Abbey is quite cranky and sleepy which we think is due to the cold and the continuous snotty nose.

We are also watching Abbey closely as there is a contraindication with the drug, clobazam she is taking with the marijuana oil. It can cause excessive drowsiness, leading to shallow breathing. It is possible we will need to decrease clobazam to keep going with the oil.

And to add to this, her liver enzymes test came back high. She will be tested again in a month to ensure no upward movement. If it increases, we may need to stop the trials. In this time I will be finding out why and how to prevent.

Today is the last day of James holidays. The big machine has come in. The original contractor has kindly donated his time to do the final beautification.

Do I need a cleaner?

Our time is packed full. We are not busy to be busy. I work every moment to be as efficient as possible. It’s a logistical juggling act to provide Scouts for the boys, wage earning for James, small business for me and caring for Abbey. All activities are constantly assessed for their benefit, and they all continue to rank highly for our mental and physical well being.

As such I finally accepted that the last sliver of what a normal life is to me is gone. I have held onto it for so long as a beacon of normality. This weekend was a ridiculous example of how this is no longer healthy.

For those who have followed this journey for a while, will know I looked into getting a cleaner to assist. Well, I’m back to this point.

The housework took 5 hours on the weekend, instead of the usual 1 to 2 hours due to seizures, Nappy changes, getting ready for school plus all the normal family life stuff. With so little down time or family time, we need to make a change.

I have spent 2 days researching, and the cost is too much. So I’m left wondering how to cheat at housework but maintain cleanliness?