The past two weeks have been incredible in terms of mobility progress with little C, she is able to move approx two metres along the crawling track (by herself!!).. she has limited capacity in terms of how long she can tolerate time on the floor but things are shifting and its a.m.a.z.i.n.g!
It feels like we’re experiencing a miracle before our eyes.. watching her body awaken.. and her ability to intentionally move her arms and legs. It’s no small feat for this little girl, the effort required for her to recruit all the right muscles to propel her forward is full-on.. she struggles and pushes her way to the end of the two metre track. To think that just a few weeks ago, we would put her in the prone position on an inclined floor, and she would not move… her legs would stiffen out behind her and there wasn’t a hint of independent movement. So the changes are monumental in our world right now. Go Chiara!!
I don’t think we’ll ever know the exact therapy or nutritional input, that is making the difference to her development due to our holistic approach… but whatever we are doing must be working! I have many questions in terms of Chiara and her journey, so many still unanswered… makes me think of a quote that our beautiful Yoga Teacher Janet Lowndes gave us at the beginning of our teacher training…
“Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given to you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.”― Rainer Maria Rilke
So I’ve reactivated my FB account (for you mum 😉 ), to a full inbox of updates from the many forums I’m linked into – Cerebral Palsy, PMG Support, Microchephaly Support, Holistic Child forum etc. And, the first post I see from a parent in the Polymicrogyria support forum is “Okay now I have to ask, life expectancy?” so I followed this link down the rabbit hole to find a mixture of answers from parents.. some shared that their child had already passed away, some have been told by their neurologists lifespan up to 5 years of age, others teenage years to early twenties max.. then some brighter news from a man named Glen, the oldest known PMG survivor at age 50… but my search stopped here. I didn’t want to know what type of PMG he had, so I couldn’t compare. When I’ve asked the medical team about Chiara and her future, they have always raised concerns that her type of PMG is bilateral effecting more parts of her brain, as well the microcephaly.. often kids who do better only have one side of the brain affected, and don’t have microcephaly along side their diagnosis. Anyhow it’s a question I don’t want to know the answer to right now…
From a yogic perspective, there is a quote from BKS Iyengar that comes to mind when I think about life span…
‘A yogi’s life is not measured by the number of his days but by the number of her/his breaths’.
Pretty cool huh… bless the ancient practice of Pranyama (Prana = life force/ ayama = to extend or draw out)… which literally extends our breath, and thus our life!