Behind the scene’s…….. life with Chiara
It’s true what they say… having a child with special needs is a blessing. I never understood it before Chiara came along.. but there is a shift of perspective to the way you go about the every day. You start to celebrate such small victories in her development, and become present in the moment.
It’s heartbreaking to think too much into the future, the what if’s, the why’s….will she walk, talk, go to a main stream school, run in the park with friends, will she marry, have kids of her own… who will look after her if I’m not around… who will care for her if her need’s are higher than the norm.. am I doing everything in my power to provide the ultimate start for her…etc etc
Parenting can be tiring (& amazing!), but at times parenting an extra needs poppet takes things to another level. It’s rare for Chiara to sleep right through the night, so attending many clinics such as phsyio, neuro, pead, developmental med, genetic, osteo, neurology, unsettled babies, orthotics, emergency… on the back of broken sleep, (and the fact she rarely travelled well) was exhausting, not to mention being thrown into the deep end of scientific terminology and new “labels”.
Hospital and doctors visits are not just a few times a year, they are many times a month. We have to change splints, boot’s and bar’s, her body positions regularly, as well as urgent 3am bath’s to try and quickly soak off her cast’s if they have caused extra pain.
Due to her hypertonia, she moves in-between moments of being like a floppy rag doll – to super stiff. One mum shared with me that dressing her daughter with PMG, was like trying to dress a barbie doll – rigid and stiff and very difficult 🙂 Chiara does not sit on her own, roll, stand or close to meeting any of her milestones. We often have to position parts of her body for her, oh the little darling.. there is so much work to do.
The amount of admin is remarkable, paperwork and bills stack up, and in my spare time I can’t stop myself from researching new therapies, trying to help her use her body, her limbs…. I’ve joined many FB groups of other parents with PMG kids, some pass away early, others develop slowly, it’s a real mixed bag.
Plus I google too much – it’s a double edged sword.. I need to read as much information about this mysterious Bilateral Polymicrogyria in order to work out additional therapies, but when I come across things like (Partial paralysis of the face, tongue, jaws and throat. Difficulties in speaking, chewing, and swallowing. Grand Mal seizures, often very serious. Joint deformities. Tendency to drool. Mild to severe mental retardation. May not live past first few years) I feel overwhelmed.. so much of my mind is occupied with worry for Chiara, but this won’t help her.. or me for that matter so we must keep moving…
Life is all about the present moment, and if ever there is a person that can help you sit firmly in the present it’s Chiara – with that disarming smile, and her uncanny ability to look at you like she’s been here before. So it’s one day at a time, right here… right now.. we roll up our sleeves and keep moving!