the rain in our rainbow

by lani

i haven’t written much about ashal’s difficulties, mostly because i don’t want to give the impression that i’m either complaining about losing a child or complaining about having one.

i guess i just don’t want y’all to think, “my word, there’s no pleasing that woman” … or something like that.

this means that i’ve left out large swaths of our life, because, from the beginning, ashal has had some significant challenges. they’re the nebulous, hard-to-pin-down-in-an-almost-2-year-old kind; no one wants to slap a diagnosis on a kid that little. but, suffice to say, we’ve been to physical therapy, several kinds of occupational therapy, several speech therapists, a pediatric sleep medicine specialist, a pediatric dermatologist, a chiropractor, several naturopaths, and had him tested for everything from restless leg syndrome to diabetes to food sensitivities to cancer based on his confusing array of symptoms. the child drinks 70-100 ounces of water every day, requires constant stimulation to sleep 90 minute stretches, has a spoken vocabulary of two words (but signs over 60), and is terrified of everything from moths to a particular spot in the bathtub. he startles and sobs for hours every day, and his fitful sleep is punctuated with moans. we’ve tested every bodily secretion possible for every problem imaginable, and put him on medications that i would be nervous about giving to an adult. not to mention the gallons of homeopathic preparations and potions that have been poured down his throat; thankfully the kid likes to take medicine.

does this sound like complaining? i really don’t mean it to … the truth is that, with all his difficulties, he regularly brings tears of joy to my eyes with his compassion and sensitivity. he’s the kind of kid who, at less than two, will break off a piece of the food you give him to share with his sister, without prompting. his “gentle hands” would melt your heart, and his dance moves would warm your soul. he puts his signs together into 5 word sentences, and he has a strong desire to please those that he trusts. he’s an empathetic, observant little boy; while you’re cooing pleasantries at him, he’s busy staring into your soul with his giant brown eyes. his smile, while not quick, is warm and roguish. he studies everything from books to birds with keen senses and an analytical mind, immersing himself in his current interest.

all to say, he’s a special kid, and i don’t mean to complain.

but being his parent is a tall job.

we’re stumbling through one day at a time, because that’s what parents who love their children do. it is all consuming, exhausting, always on our mind. we struggle with balancing his myriad of appointments with days off, and we try to catch ourselves when we start seeing him as a problem to be solved. it’s hard.

some practitioners get the job done, and no more. some give bad advice. some are gems, who not only treat ashal but love him, too. we treasure the good, ignore the bad, and pray for the wisdom to know the difference.

tomorrow, we have what is perhaps one of the most monumental of ash’s appointments. it took many months of waiting, but finally, he will have a full developmental evaluation at the doernbecher child development and rehab clinic (cdrc) at oregon health sciences university. it will be a long, full day of meetings with many professionals who, after meeting with us and observing and testing ashal, will meet together and compile as complete a picture as possible of his development.

we are trying not to get our hopes up; we’ve been down many roads before in his short life.

but maybe, just maybe … this time will be different. we’ll see.

Roberts Family-186