Asiya Solo - Written by her mother, Shasmeen
When your world is turned upside down, you lose all sense of footing. You grasp at anything that feels like support. Anything that feels certain because in that time you are surrounded by tons of uncertainty only what if, maybe, can be…. ifs, ifs, ifs, and more ifs.
I was a mother of a healthy, fully abled toddler, inquisitive, curious, and free. I remember, she was just starting to say words, and I had the privilege of hearing mummy and her dad hearing daddy.
During March 2017, my world was turned upside down. I was called home from work and when I got home my daughter was lying on the lounge floor surrounded by paramedics resuscitating her, a parent’s worst nightmare… drowning.
She was on life support for about 10 days, and the world of what ifs, maybe, keep praying, hold on, started. At that moment you look at your life and you suddenly realise that life will never be the same again. You look at your only child and she looks like your child, but she does not look like your child because that is what trauma does, it takes from you in a way that I cannot explain.
Asiya was at the rehab for four and a half months, and I never left her side. I would hold her close to me so she could smell me, praying she would remember my scent… The woman that breastfed her, that planted a million kisses upon her sweet face…
She is diagnosed under the diverse umbrella of Spastic Cerebral Palsy Tetraplegia. In short, she is quadriplegic and non-verbal, she has a tracheostomy for breathing as well as a feeding PEG since she cannot swallow. After the diagnosis was confirmed, I now had to research and understand all these specific terms and sayings so that I could be fully aware and involved in discussions between Neurologists, Occupational Therapists, Speech Therapists, Physiologists, Surgeons, Paediatricians and ENT specialists. I needed to learn and understand the medical world and remember to be Asiyas mother.
Accepting that your child will never walk again, sit again, feed herself again, go to the toilet on her own, brush her teeth again, and play freely again is another type of grief and sadness that never leaves you.
Today Asiya is 7 years, we are 5 years into the world of special needs, and we are coping as best as we can. Asiya is the most joyful little human being. She has got an infectious, boisterous laugh, and she has a magnetic personality. She is a bubbly and overall happy child, spicy and spunky. We see many difficult days and, luckily, more joyful days as well. We learn how to create new memories in the world of special needs children daily.
I am writing to ask for financial aid. Asiya got a tracheostomy; she is PEG Fed (Percutaneous endoscopic gastronomy). A flexible feeding tube was placed through the abdominal wall into her stomach. She requires a special positioning wheelchair, a suction machine (she cannot swallow, the muscles are paralyzed) and a bath frame.
Asiya is in a wheelchair that currently is not supporting her because she has grown taller, and stronger and she moves around a lot, this wheelchair is causing more frustration and tension to her body because of her dystonic extreme body movement. She spends most of the time sitting in her wheelchair because we do not have any other safe place to hold sitting upright. This wheelchair, unfortunately, costs R85 000.00 finances which we do not have.
I currently do not have a bath frame, so I do my best by placing towels under her head to support her and a sheet under her back to avoid her slipping around. But with Asiya, everything is whack…because she is just a playful child and thinks lifting her legs to splash water is fun (it is fun).
Asiya is not the average height for a 7-year-old she is much taller, and she is tiny. We had to move to a car seat that buckled her safely into a booster seat. The booster seat not not hold her securely. I dread the drive to school or anywhere else because I need to hold her in the seat as safely as possible, leaving me exhausted, tearful, and frustrated.
Financially it takes its toll because of nappies, medications, pharmacy levies, and medical aid short payments, it is at times hard to see the positive side. We do our best with what we have, but sometimes I feel like I fall short of giving her what she deserves and, more so, what she needs to support her disability. She is never short of hugs, kisses, cuddles, encouragement, and motivation because I am her biggest fan. We just desperately need equipment that feels far reached, causing us turmoil, and the wheelchair is the top on the list of these.
My name is Shasmeen: mother of Asiya Solo the child that survived a near-drowning accident and is left with Traumatic Brain Injury. Thank you for listening to our story, and we would appreciate any financial assistance, however big or small.
If you want to assist Asiya, please email npc@owlhub.co.za to make contact.