Abigail - Written by her mother, Kerry
Nothing can be more exciting and frightening at the same time as finding out you are pregnant. Nine months filled with fear, expectations, excitement but most importantly a lifetime of hopes and dreams for your child.
18 January 2011, I gave birth to my second baby, a baby sister, a sibling to grow up alongside a big brother. My perfect pigeon pair, any mom’s idea of a picture-perfect family, at least it was for me.
Abigail was an easy baby up until 10 months when she got sick the first time. Our first hospital visit was grommets, it then became a biweekly occurrence, tonsils, vomiting, blood test, bronchitis and in between that my husband questioning me why she is not reaching her milestones….
At one year old she was not crawling, or pulling to stand, and as her mom my first instinct was to get upset with my husband. I think most moms can relate. In my head I was saying, I am with her all day, I carried her, she is my child surely I would notice my child is delayed. I kept saying stop rushing her she will get there, but she never did……
At 15 months our very first appointment the pediatric neurologist shouted, yes shouted at me telling me that no-one is going to ask at what age my child started walking but they will notice the cognitive delay and the fact that she is “obese” This is when everything started to get real. We immediately started Abigail at Therapy, Occupational, Physio, Speech, swimming and biokinetics. I spent every afternoon driving up and down from appointment to appointment.
It took Doctors four years to diagnose Abigail with Rett Syndrome.
What is Rett Syndrome – It is a rare genetic neurological and developmental disorder that affects the way the brain develops. This disorder causes a progressive loss of motor skills and language. Rett Syndrome primarily affects females. Most babies with Rett syndrome seem to develop as expected
for the first six months of life.
Abigail is now 12 years old and in these 12 years, I have done 23 casualty emergency admissions, had people point their fingers at me when Abigail has thrown herself on the floor in a meltdown; I have watched my mom and dad’s hearts break when told their granddaughter will never function as a typical child; I had to explain to Abigail’s brother why his sister can’t talk to him or why she will never be able to go to the same school as him; I have had to see the terror in my sons eyes as he watched his sister have her first seizure and run through a shopping center screaming for help when Abigail stopped breathing.
Every morning when we wake up its like taking stock, how does she look, is she pale, is she hot, are there dark rings around her eyes, does she have a bladder infection, is her tummy running etc. because if we miss something, it could be to late and it will mean yet again another emergency
hospitalization.
Being a mom is hard, no matter if you have an abled body child or disabled and I say abled and not normal because what society deems as normal is what puts so much pressure on our children today, to be a specific way. It is what creates ignorance, expectations, and fear.
If I had R1.00 for every time a person has told me “God wouldn’t have given you what you can’t handle” or “I don’t know how you do it, I wouldn’t be able to”, I would be a billionaire. I have been asked how “retarded” Abigail is, and I had a young couple stop and watched us during a meltdown while my child was biting kicking and screaming. ( like I am a bad parent who cannot discipline her child). I have watched people shake their heads and stare at her when she is in a wheelchair since walking for long tires her quickly. Those are tough days since people are oblivious and ignorant what it takes to raise a special needs child.
Yes, there are beautiful days too. Abigail has taught us so much; she has taught us how to love unconditionally; how to be loved unconditionally by her; how to slow down and not sweat the small stuff. She has shown us the bravery, courage, strength and all kinds of attitude can be rolled into one tiny soul. But the most important thing she has taught us is anything is possible, never say never. A diagnosis is nothing but a label because she will be the best version that she can be if you give her the opportunity to spread her wings and allow her to grow in a society of acceptance.
I met a dad the last time we were in hospital and he asked me two questions and the conversation went like this: Do you ever accept that your child will never function like a typical child; does it get any easier. I replied, No, you will always feel the loss, the beginning of every year being the hardest when my son changes his school year I think of where Abigail would have been, along with birthdays and big celebrations, but you learn to cope with it better as time goes by.
Now that I am done with my story, I beg you not to say, shame, sorry, this is terrible. We all have our own struggles to face. If you can be anything in life, I urge you to BE KIND because you just don’t know what that person maybe going through. Educate yourself about special needs children. Knowledge is power and maybe just maybe you will have the courage to go up to a special needs child and just say hello, instead of staring and shaking your heads.
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