The plans that, fell out of hand, with the rare condition diagnosis of their, young infant, daughter, the causes of the condition, still, not yet, known, translated…
From When Our Daughter Was Born to When She Got Sick, the Trials My Wife and I Weathered, Simply Can’t Get Put into Words, the Original Growth Plans We’d Set Up, All of a Sudden, Fell Out………
At First, it was, Hard for Me to, Accept
When Xiang-Xiang was only six months old, my wife and I noted how she seemed to, be developing, at a slower rate than infants her age, and we’d, hurried up and took her to the pediatrician. After a thorough check, the pediatrician told us she was, normal, we’d both felt, relieved, but, at the age of one, Xiang-Xiang still couldn’t, flip herself over, and it’d, caused my wife and I panic.
To know what had happened, we’d had the pediatricians to conduct a thorough assessment on her, and in the end, we’d received the diagnosis of “Dope-Reactive Dystonia, DRD); meaning, that the pediatrician can only deduct that something wasn’t quite right with Xiang-Xiang’s neuron signaling system, and couldn’t tell us exactly, what was, wrong with her
From the joys of my daughter’s birth, to being told she’d had a rare condition, the changes in my wife and my heart can’t be put into, words, the original plans of her growth, all of a sudden, fell, out of whack. At first, it was, quite difficult for us to accept this, but, being Xiang-Xiang’s parents, if we can’t even, cope with it, who will, give her the help she needed, on this, long road, of her life? Only facing this head on, working hard, to find the cause of her condition, working with the pediatricians to treat her, that’s the only way, we’ll find the right treatments for her, so she could, have a, better life.
illustration from UDN.com
But even so, as I looked at how the conditions of my daughter was very, unstable, I’d felt, helpless, upset, and, because she isn’t health, there are, many accidents, situations that’s, surfaced as she grew up, going to the hospitals became, something too regular, and we’d often, gone for “vacations” at the hospitals too. On top of that, due to how “unique” our daughter’s condition, the doctors couldn’t set up a clear and precise treatment plan for her, and it’s up to us, her parents, to make the detailed, observations, to finding the assortments of information, data online, to help us communicate with the pediatricians; and because of this, we’d taken a lot of time daily, energies too, to stay close to Xiang-Xiang, and documented the changes in her, closely.
Making Her Happy, that’s, the Most Important Matter in Our Lives
Because Xiang-Xiang loved going out, to observe everything around her, we’d often, taken her out for strolls. I would put her in my lap, talk to her, play with her, sometimes, we would watch my wife, busying about, wait until my wife’s done busying, and hugged her. Although Xiang-Xiang couldn’t speak a word, but, from her eyes, we can see, that she was, happy.
Xiang-Xiang is a laughing girl, whenever her tiny needs were met, she’d, started, giggling loud. Her needs may be a sound we made, or a movement, even, that tiny response we’d, given to her, and that giggle from inside of her, can last for a long, long time. We’d also found, that Xiang-Xiang, loved holding conversations, because she couldn’t speak a word, she’d, used the various noises, movements, facial expressions, to express her self, and she’d demanded that we “hear” her from start to finish, and so, we played that game of, “Charades” a lot at home, we all worked together, to guess what Xiang-Xiang wants to, tell to us.
Actually, the needs and desires of a child like Xiang-Xiang is quite, simple, being with those whom she enjoyed being around, it’s, the best thing in their lives, while we’d both, done all we possibly can, to fulfill, the tiniest wishes that our, young daughter has.
To this point, we still have no clue, what’s, caused our daughter to not speak, to not flip on her tummy, to walk, and to, feed herself, but no matter, Xiang-Xiang is our, baby. As parents, our only hope for her, is that she’s, safe and healthy, and happy throughout her life, while we shall, keep on, holding her, tiny hands, to lead her, to grow up slowly, on this, hard road of life she’d found herself to be one, to become, the strongest backup for her, in her life.
And this, is the love, the devotion, of parents with a special needs child, and the cause of the conditions of this young child is unknown, and the parents had, started to, accept that, they may, never find out what exactly, had caused their daughter’s, condition, but, they’d learned, to give her the love, the support she needed, on this road to life, and that, is the most, important sort of support, of love, that any parents can, give to, their, own young.