For nearly three years I worked at a small law firm, trying to find my way through foreign legal documents, through jargon, through stiffness, through office antics and odd secretary grudges. It was a 9 to 5 job I worked because it paid more than my previous 9 to 5 job at a hometown newspaper as a reporter, which I got straight out of college in 2004. I graduated with a bachelor's degree from a Midwestern liberal arts college, majoring in English, with minors in Women's Studies, Philosophy and Religion.
My husband David and I, and our college cat, the terror, Shere Kahn, whom I "adopted" at 6-months of age on campus, moved to the small, Midwestern rural town in which my husband grew up because his family was here and we really didn't have anywhere else to go. Before long we were apartment living with Kahn, though we soon added fat, needy Luna, and trouble-making, street-walking Cora Munro (Last of the Mohicans, anyone?) to the bunch.
Kahn, Cora Munro, and Luna (L to R)
Perhaps we should have thought through our choice a little bit better; just like our college decision, it was an opportunity to land some place different, some place new, but, alas we landed here.
We married in a small church a year later and have now been here for nearly 7 years; it's hard to believe time has flown by so fast. We have our lovely little blue house, with the cute front porch and wonderful, warm breezeway in the summertime, and a nice backyard with room for the terrible twins, Atlas and Venus, whom we adopted from our town's No-Kill Animal Shelter. They're now 4, and are as much of a handful as they ever were.
Venus and Atlas, currently looking not quite so mischievous (L to R)
Add in my husband's teaching job, his soccer coaching pursuits, and our toddler daughter, and you get the culmination of our lives.
But, for whatever reason, out of whatever choices I've made to this point, my life has been missing something and I haven't quite put my finger on what's absent. A purpose, would probably be a good answer, since I largely have none, aside from guiding my daughter away from sharp corners, cats' claws, towards PBS cartoons and something edible and healthy, hopefully not (always) cheerios.
Teenie Bird's tiny feet
She is adorable and perfect and whole. She is often loud, hilarious, persnickety, incredibly smart, cunning and persistent.
She is also, apparently, not growing. Or not growing fast, which hopefully for all of you, cuts to the quick of my life. Her growth, or lack thereof, is my life. She has remained at an amazingly small stature of 31" for more than 5 months. She managed to maintain the weight of 22 pounds for quite some time before finally putting two more pounds onto her tiny frame. She can still fit into a 6 to 9 month onesie...and for those out of the parenting lingo loop, that's pretty small. Her tiny feet can still fit into the socks she first came home in- (though granted she has stretched them out a bit) a pair of white booties donated by the hospital stitched with the little, yellow numbers- 2009- the year of her birth.
Peeking out the window wearing her infant-sized onesie,
after her decision to barrel through the house without clothes
For the past year, this little child has fought through challenges, jumped hurdles, climbed mountains and literally put one tiny foot in front of the other in her relentless, tireless pursuit of movement, for freedom. We knew something was wrong when she felt limp in our arms, when her arms and legs had a "floppy" sensation to them. We knew the sensation of holding her was different from other babies, as she always felt like she was falling right through, like water through a sieve.
She was a normal birth weight, 8 pds. 1 oz., and height 19.5", but my 3-day labor was difficult, and it ended with an emergency c-section. I suffered from Bells Palsy, placenta abruptio, and blood loss resulting in three blood transfusions. It was the scariest moment of my life, and I know fear when I see it in my husband's eyes. We still felt like kids, like we weren't old enough to be experiencing such life altering moments. After 2 1/2 hours in recovery due to my erratic heartbeat (I was overwhelmed!), I finally met our little Teenie Bird. Everything seemed perfect, and life moved along in a happy blur. We loved her desperately.
By 13 months I was highly concerned because she had yet to crawl. She simply couldn't pick her tiny frame up off the carpet. So, aside from rolling like a little barrel, or dragging herself army-style from spot to spot, she remained largely immobile and would remain in the same spot we placed her.
We switched pediatricians after she turned a year because I felt there was a lack of initiative in the doctor's care; she simply didn't think anything was wrong, and insisted to me that Teenie Bird must learn to crawl and walk on her own. We disagreed, and it was probably one of the most important decisions we've made to date- we knew our daughter, and we knew something wasn't right. The moment we walked into our new doctor's office, the pediatrician immediately said Teenie Bird was dramatically delayed and she would like to have her evaluated by therapists with Easter Seals, an organization which helps people with disabilities live fuller lives.
Lo' and behold, the therapist agreed with the second pediatrician's opinion and said "Your daughter has low-muscle tone throughout her body, even in her mouth." Interestingly, the therapist said anyone who holds her experiences the sensation of "muscle slip-through", where you feel as if the child will slip right through your arms despite your efforts to keep a hold on her.
After more meetings and evaluations we learned Teenie Bird was far more intelligent than her age, often scoring well beyond the typical cognitive capabilities of a 1-year-old, but she was well behind in other areas. Her mouth strength was rated at that of a 4 to 6-month-old child, causing her to gag, choke and throw-up simply because she couldn't manage tough or chewy food; milk and juice often dribbled out of the corners of her mouth, since she was incapable of properly pursing her lips to swallow liquid, and was still months away from handling an open cup or drinking from a straw.
Physical therapy was started immediately and proved to be as hard on me as it was on her. I could hardly stand her cries, her screams as her muscles were forced to crawl, then to stand, and to walk without her ability to do so on her own. At that time, life was hard on her and me, as I would leave my job, take her to PT, where she would kick and scream for an hour, before returning her to the sitter and I would return to work, to my desk to wallow in my Mom-guilt. It was emotionally draining to say the least and we prayed for positive results for all her hard work.
Following two months of weekly therapy she finally, triumphantly and tearfully raised her torso off the ground and began to crawl. I thought I would never see the day, I thought I would never smile so much, or laugh so hard.
At 15 months of age she finally, for the first time, stood up on her own, though her posture was poor, with her little butt sticking out, knees locked in and her chest resting on the coffee table. She simply wasn't strong enough to stand on her own yet.
Mom and Teenie Bird, 15 Months, in April, 2010, standing proud!
It seemed a long time, but really it was only 7 months, when at 22 months of age, she took her first tenuous steps between her father and me. To our great joy she walked a few slow, tiny steps while trick-or-treating on Halloween, 2010, and by November she really gained ground fast and began walking throughout the house.
Trick-or-Treating at Grandma's wearing her Ewok costume
October, 2010
Post-pumpkin carving
Though we have ongoing concerns about her vision and her lazy eye and the staring spells we've witnessed her having, which may be what they call "silent seizures", today she walks freely, (with the help of tiny ankle braces under specially made tennis shoes), but walk she does! Two months ago she was reduced to twice monthly physical therapy sessions. Following a meeting with her therapists just this week, it was recommended she be approved for continuing services provided by the State of Illinois through Early Childhood Connections, which included a recommendation for attendance at a twice-weekly, two-hour Developmental Playgroup for 2-year-olds, who may or may not have disabilities, put on by Easter Seals. Their focus now is on her conquering stairs, climbing up and off the couch, jumping and running.
The therapists and pediatrician are still unwilling to go beyond saying she has anything but low-muscle tone throughout her body. I just wonder if we aren't eventually going to hear more about hypotonia, the definition of which is, essentially, low muscle tone, but to date the doctors seem unwilling to go so far as to officially diagnose her with hypotonia.
So this is our story- it's complicated, it's sad, overwhelming, but it is also joyful, funny and pure. Our life is our daughter, and she is ever-changing, conquering her own little challenges every day. We can't wait to see what her tomorrow holds. Please join us on our journey.
Teenie Bird, reading her library books, March, 2010
Concise and well written. I'm along for the journey!
ReplyDeleteThanks, Mom! Thanks for reading! Love you!
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