Monday, 9 May 2016

A personal post: Why Moms Cry. by Cally

Why moms cry

This morning my sister reminded me of something I told one of the mums at Bright Eyes. 
It was something that resonated with her and something I've said before to mums I've had in my care. It occurred to me that it might be something worth sharing with other mums- to maybe give the slightest bit of insight into the daily battles our mums face, also: because, I know, that truly lovely, kind and empathetic mums ( of disabled children or not) will understand and empathise with my message.

On many occasions I embrace my role in new Bright Eyes families lives as more than their early interventionist. I am also their external support, their sounding board and their understanding friend in this very new world of raising a visually impaired/disabled child. The parents I see come to me after many weeks and months of doctors, neurologists, genealogists, ophthalmologist, optometrists and specialists. 
They've studied the inside of countless hospital waiting rooms, they've restrained their crying babies arms as she's been poked and prodded. Some have had to sign papers allowing doctors to sedate, cut open, X-ray, brain scan etc etc etc their precious children and then stand near by and watch it all happen. 
They've been given report after report, referral, after referral and have heard opinion after opinion, and everything very scientifically worded and always with a gentle but very negative resolve. 
Some of my parents dig in their child's eye socket to remove false eye balls each evening, some have to fight each day to keep a patch on their baby's 'strong' eye. Most come to me very cautiously and wary. All come in exhausted. On most occasions I am the first person in this specialist area to ever smile and laugh during our first meeting, point out the positives and offer a happy spin on the future. About 5 mins into our first meeting I see something change I their faces. I see, relief. 

From that moment I know we are connected forever. I know I have their trust and I know they will allow me to do what I do, even on the days it seems hard. I know they will always be honest with me and I know we are now a team. Recently I found an SMS sent by one of our past mums. In the message she wrote " I loved you from that first day. Because I knew you could see that there was a big future for my son, just like I could. Nobody else could. I knew you believed. That's why I trusted you." 

The mums I have cry.
They cry often and they cry greatly. 
I do too sometimes. It's OK.

Y( baby girl I currently see) has the kindest, most loving and very proactive mum. She has spent countless hours with doctors and specialists and every time she has to takeY for follow ups and appointments she dreads every moment. But- she goes, she does what she has to and she pulls herself up and keeps moving forward. Recently she was phoned by a doctors rooms to bring her husband in ,leave Y at home, so the Doctor could return some results and 'discuss possible options.' 
She saw me the day before the consult and as she climbed into the car she said " I just cry. I always sit in these offices, hear what they have to say- and I cry." She was exhausted. It was right then that I told her this- to keep her going and to remind her how freaking amazing she is at being Y's mom. 

I told her- Every time you have to do this, every time you have to walk into one of these horrible situations, listen to a negative evaluation of your daughter and take in even more sadness. Cry. Do it. Cry. Sob. Wail. Let every inch of sad flow through you and feel all of it. Cry as much as you have. Cry! Cry because you are going to Remember this- every tear you cry is one more your child won't have to. You take it on, you take on all the worry, anxiety, uncertainty and sadness- you do it so she doesn't have to. 
You Cry so that she doesn't have to.
If there is ever a reason in the world to cry- I'd say that's the best. 
By the time you get home that evening you do everything as usual. You kiss her, cuddle her, play like you always do and go about your life with her. You've had another terrible day. But she'll never know it. 

And That's why moms cry.

With love, as always


Wednesday, 9 March 2016

A visit worth mentioning. My morning at The Baby Therapy Centre. Pta

By Cally.

On monday I travelled to Joburg to visit some early intervention centres I'd come to hear about.

I wasn't really sure what exactly the purpose of my visits were and what I was hoping to achieve. As an early interventionist, working in the area of disability, the overall rule that guides my daily work is; there's always something to learn. Often I take on tasks, start a frenzy of research or nudge my way into every therapist's room in Durban, without a real 'purpose' for doing so, but with a pesky notion ticking in my head- "There's something here! I can learn something here."

I am never disappointed

So- as I pulled up at The Baby Therapy Centre in Lynnwood, Pretoria, I knew I would be learning something. I hadn't realised though- that I would be feeling something too.

The centre is small and modest- as a NPO the budget is limited. Im sure the ladies who work there would love to have the extra money for colourful wall murals, exciting play equipment and beautiful couches in the waiting area- but as it stands, money must be utilised well, where is it needed- on therapy, care and education.
And here is where it gets beautiful!

I was taken on a tour of the centre by (Manager) Karin; shown each room, talked through every process, introduced to each team member and given a wealth of info about the centre.
Their philosophy is simple-  Every child has potential, every child is given support and encouragement and everyone is invested in that child's development.
Therapists work together (OT, physio, speech and music therapists,) Together they plan interventions, discuss ideas, follow through on each other's  practices and hold a real stake in being apart of an early intervention team. It's unselfish and wonderful- and successful.

The centre has 4 components to it- the main building is the therapy centre itself, alongside it is the day care. The day care exists to ensure that the children of full time working parents are able to receive their necessary therapies. There, I met a lovely nursing sister, Heleen,- who showed an unusual mixture of 'medial factualness' and genuine gentle empathy. Next, Chrysalis, resembling slightly more of an early learning/ pre preschool, ensures the slightly older children receive stimulation and care in the next phase of their formative years. Lastly, the therapy pool, set to the side on the property.

The best part of my visit was definitely meeting the staff. Warm,  fresh faced and smiley- all happy, jovial and completely positive about the centre and the children they work with (some of whom no one else will take.)

There were 2 aspects of the day that remained in my mind after I had left the centre.
The first was a phrase Karin had uttered, (without really a second thought or pause for effect.) She had said, as she walked through the day care smiling at the babies;
"We never turn any baby away."
Now- to anyone who doesn't work in this sector, that sentence may sound obvious. If you're a centre for disability- then you should take in any disability! Well, you can trust me on this one- the ability to know what you can and cannot do, how far your skills extend and how much you can really help- is a humbling and vital skill to acquire. Being able to admit; Others can do better than I can- is as much a gift to the parent as it is to the child. So, when Karin said that sentence, I thought; can it be true?

The proof that it is true- is the 2nd aspect that remained in my mind.

They are honest

They are truly doing as much as they possibly can for the children they see.
How do I know?
I've seen the reverse.

The saddest truth I've had to learn in my life so far is that- in the disability sector, 90% of the educators, therapists, social workers and carers who work with young disabled children are; jaded, unsympathetic and self gratifying.

At the BTC this is not the case. The evolution of the centre proves this. First it was a centre providing necessary holistic therapeutic interventions to young disabled babies. Then, as so many families battled to arrange their work week in order to bring their children for their therapies- the day care opened. When the babies began reaching school-going ages and parents reported being turned away from school after school- Chrysalis opened. Today- the children reach9-10yrs of age and must move on. But, parents are still unable to find centres to accommodate their older children, and the inevitability of a dead-end hits. This fact weighs heavily on the shoulders of all the ladies at the centre. You can see it- they all mention it in soft whispers. They all care. They really do care.

That's the part that I felt.

It is with the upmost respect that 
I write and share this account. 
To the ladies at Baby Therapy Centre:
Thank you 
(my hope is rekindled)
You are lovely.

Cally Gibbs
and Bright Eyes