Great Expectations: Caregiving Before the Diagnosis


[title text=”Guest post by Julie Jones”]

Originally posted to Have Wheelchair Will Travel and republished here with permission from author.

I get wistful at this time of year.  The August winds are heavy with the scent of spring’s pollen and it takes me back to a time of great expectation:

I was heavily pregnant and waddling around, literally, in the last weeks of my pregnancy with BJ.  Like most first time Mums I was filled with a mixture of excitement and anxiety.  I’d always loved kids and spent as much time with them as possible so my fear didn’t stem from how I would handle motherhood but from the actual labour.  They call it labour for a reason, right?

My days were filled with nesting, resting and mother and daughter outings with my Mum.  “What a charmed life”, I think when I reflect on it.

I laugh thinking of my husband and I chatting with anticipation of meeting our little person.  We didn’t mind if the baby was a boy or girl as long as all went well.  We did of course discuss things like whose nose we’d prefer the baby to get which now seems ridiculous in the scheme of our life.

Have Wheelchair, Will Travel 1

Note the stylish maternity outfit. Last trip to Blue Mountains before D-Day and the car broke down!
I thought I may give birth in a very natural way.

The labour went well, uneventful and relatively short.  That is not to say it didn’t hurt – A LOT!  We checked and our little baby boy came with 10 fingers and toes and seemed absolutely perfect.  Breastfeeding proved a toe curling experience but by the time I left hospital we had got to a stage where neither of us was crying over the process.

I marvelled as I left hospital that we arrived as a family of two and now we were driving home with a new person in our family.  It seemed odd that everyone was going about their ordinary day to day life in the cars around us and yet today was life altering for us.  I felt like waving to them and pointing in the back of our car to show the excitement of our day.  I didn’t of course because that would just be weird.

We had three blissful months of just caring for our baby like any other family arriving home from hospital.  There were the usual things like sleep deprivation; mountains of nappies to change and with every burp a baby sick up.  It was all very normal.

It was around the three to four month mark that the questions started to invade my mind and also the clinic nurse’s.  BJ wasn’t gaining good neck control.  There were suggestions it was due to his reflux and having less tummy time but I started to get concerned.

Each time I’d seek an opinion I’d get the answer I was hoping for, that he was probably just a little slower reaching his milestones.  By this time we had an issue with his sleep, or lack of it should I say.  BJ would happily sleep in our arms but wasn’t sleeping in his bed.  Normal again, right?  So off we went to Tresillian (baby school) to get assistance.  It didn’t seem all bad at Tresillian.  BJ and I slept over and we had all our meals provided, the staff did the first few days of the settling process and then I got involved.  BJ proved determined (a signal of the determination of the future that would work against and for us at different times).

I always joke that he ‘failed’ baby school and we were invited to return for a second week (fairly unusual).  In that week it was suggested we seek out advice from a physiotherapist at a hospital.  We once again received reassurances they could ‘get him right’ with exercises.   I had a sick feeling over this period but would take hope in every positive that was offered and run with it.  Finally we attended an appointment and they advised they felt that BJ had Cerebral Palsy. I didn’t know what that was or how it would impact on BJ or our lives.  He was perfect as far as I was concerned and I didn’t much care for a ‘label’, as I saw it.

I once again found myself driving home from a hospital after a life altering moment while everyone around me was seemingly going about their ordinary day.

I was shell shocked but didn’t really get it.

I’m glad I had those blissful months of just enjoying my baby without the rigours of therapy.  I feel lucky that I didn’t really know the road ahead as I’m sure it would have seemed daunting to a new Mum.  One step at a time was easier.  I always feel good to know that there was nothing anyone else or I could have done to change the outcome.  I had followed the pregnancy books to the letter and know I did my best for BJ.

Have Wheelchair, Will Travel 2The next step was just to get on with it.

We immersed ourselves in the world of early intervention.  We were fortunate, as it turned out, to have a ‘label’, or diagnosis as it actually was.  We could immediately get access to therapy and within a short time had therapists guiding us through a new world.

We have always had amazing family and therapy support which has made an enormous difference to our lives.

I may be wistful about my ignorance at the road ahead during my pregnancy but I am also proud of how far BJ has come.  We have a few grey hairs and wrinkles which I blame on stressful days in therapy or a particularly difficult stage but we have made it through with our sense of humour in tact (most days).

Each day is a challenge but good humour, a positive outlook and fun times spent together have got us this far.

Not every day is easy but my advice to anyone caring for someone with a disability is to look at the little gains and celebrate them.   One day hopefully you too will look back wistfully and see you have come a long way.


have wheelchair will travel logo
We certainly are not the first family with a person with a disability to travel but at times while we were planning our trip it felt that way!
We decided to share the information we found on Have Wheelchair Will Travel while researching our trip along with our great finds. Hopefully there will be something to help you in planning your trip or just the confidence to give travelling a go!
Click here to learn more.


Written by Guest Author
The Caregiver Space accepts contributions from experts for The Caregiver's Toolbox and provides a platform for all caregivers in Caregiver Stories. Please read our author guidelines for more information and use our contact form to submit guest articles.

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