In July our daughter became very ill. She ran a fever, had a positive strep test, broke out in a rash, and then complained of pain in her foot. I spent a week running her back and forth to our pediatrician, sitting up with her at night trying to keep her fever under control, prevent the itchy rash from keeping her awake, and just sick with worry. We ended up spending a full week at Children's Memorial hospital in a quarantined room on the infectious disease floor. After several days of testing, the infectious disease team declared her free of any infection; however, the symptoms had not subsided and we discovered that while there was no infection there was totally out of control inflammation. It was then we learned kids get arthritis, too: systemic onset juvenile idiopathic arthritis.
Coping with her disease has been life changing. I had a very hard time managing the loss of the child she was before she got sick. It was maddening to consider that the child I had spent the past five years watching shine might lose some of her sparkle. I was furious and incredibly frightened by the possibility of her losing her capacity to do. Once we returned home from the hospital I watched her so closely, we drew pictures of where her body hurt every morning, we took warm morning baths to loosen her joints, we investigated medications, and we agonized. I cried myself to sleep, forced myself out of bed, and then into early labor with my third baby.
When we were at Children's her rheumatologist kept telling us her condition would be manageable with the right course of treatment. It sounds horrible. While I sat at her bedside and considered just the concept of managing sickness for her life I became acutely aware of one fact: normal had ended.
I can imagine what normal was to me before July 9, 2011 - the day she presented with a fever. But, I can also close my eyes and hear her crying in pain, confused about why she wasn't getting better, questioning if she would have to use crutches, wondering if she would make it to the potty in time, crying because she didn't. My mind begins to swirl. I can think back to mornings when the first thing I thought about wasn't what my daughter's feet would look and feel like when she got out of bed.
I am trying to embrace our new normal. At the hospital she started Naproxen and Prednisone. In August she began treatment on Methotrexate and we immediately saw improvement in her quality of life. Now, November, her days are mostly good. Often at night she is sore from a busy day of running around like normal. She rashes occasionally, but isn't bothered by it much. She only uses Naproxen when she "needs" it; though, I think she is just growing used to life with pain because she often behaves as if she is uncomfortable but just doesn't want to take more medicine. She runs, does yoga, dances, races her brother outside, and talks about something and everything all day long. So to that end she is normal.
The new normal unfortunately includes a sizable portion of panic and anxiety. Six months ago when she would wake in the middle of the night to go the bathroom and cry it didn't send me into a panic attack. Two weeks ago, though, she woke to pee and had pain in her feet. She came into my room crying and frightened. I think I was shaking when I woke up. I worry that one night we'll wake up and she will be regressing into disease instead of improving.
I spoke with another mother of a newly diagnosed JIA patient the other day and it was oddly wonderful. It's awful to be having this conversation about our children being sick and managing a disease. It was good though to understand her perspective, to follow her train of thought, and to have someone really get it. It was unpleasantly comforting. She was still looking for answers and in a mental space of severe sadness mixed with total confusion. I get it. I am in a more accepting mental space of knowing there aren't always answers but there is a manageable course of treatment in a new normal.
Trouble is my mental space can acknowledge that a "manageable course of treatment in a new normal" sucks.
Peace and Quiet
You know the saying, "Elvis has left the building?" I can imagine it - thousands of screaming women, devastated at the end of a show because the man they never knew they loved so much is officially gone. Of course they liked Elvis. But then they saw him in concert - and they loved him. His voice, his hips, his hair, for Pete's sake his hips! I can imagine the sheer joy, and the sheer disappointment when his departure was announced.
In my house every morning between 7 and 9 a.m. I think there should be a loud speaker announcement much like Elvis'. My loud speaker would announce, "Peace and quiet have left the building!" I would scream and protest when I heard it everyday, I would faint in a whirlwind of tears. I would, I swear I would. If only I had time for such shenanigans.
People ask me how its going with three children. I can really only confirm this: Silence is gone. Its as if one more body shot it right the hell out the front door. When I had two children, there was down time, some quiet. Now down time is like a not-so-distant memory.
I always imagined my life with three + children, though. I never would have quit procreating with anything less. I would have pestered the hell out of my husband had he denied me a third bambino. So to that end - the missing silence is my own fault. The constant talking, screaming, singing, humming, crying, whining, and moaning comes with constant activity. I feel like I have something to do at all times of the day; but, at the end of the day I sit down to nurse the infant, and I can't exactly recall what I got done. I've changed my "to-do" list into a "rolling list of hopeful accomplishments." I think I'm gaining more acceptance of getting less done and being content with having happy, sort of clean kids. The thing is, even though they've taken silence from me, they've given me much more in return.
The noise from each of them is different. My eldest, the Chicken, talks constantly either to me, to herself, to her dolls and toys, or to her imaginary friend, Annie. When she isn't having a conversation with someone, she is performing a new action or dance. She is finding new ways of flipping off the couch, hopping on one foot then the other, dancing like Angelina Ballerina, or telling her brother what to do. Quite often throughout the day she can be heard (over and over and over again) saying, "Mom, look at me!" Her latest trick is sure to follow. She is occupied at all times of the day with her own imagination and will certainly include anyone around. She creates a world of her own, but lights up reality with her every move. She is always looking to learn something new: how to spell Annie, where a truck will tow a car, why a semi-truck is called a semi. She prefers coloring on white paper to coloring books and writes me letters several times a week. At night, she never wants to go to bed without a snack, even though she rarely eats her whole dinner. She can't wait for her dad to come home from work every single day and she still tries to hide from him when he returns. Every morning she asks me, "what is today?" She is thrilled about school, play dates, and the dentist. She prefers peas to green beans, and will ingest an entire can of pears in thirty seconds.
The middle child, the brute we call Mister, can be heard making a variety of noises; yet, he only says a few actual words at 20 months old. He says "Ma! Ma! Ma!" nearly 1800 times a day and at increasing levels until I give him my attention. He communicates through sounds that I have come to understand to be one of the following: hi, dog, dad, come on, hot, book, bowl, baby. He is also a fan of a high pitched scream and grunting sounds that mean something to him but very little to the general population. He laughs and giggles constantly. When he poops he must leave wherever he is or whatever he is doing to find an alone space. Then he sits and grunts and groans all the while making a very stern, concerned expression. He can get very angry, and expresses anger with the high pitched scream, head butting, or loud crying. He is not one for having his diaper changed without a fight and if he's pooped he wants to see it every time. I can't blame him, though, who doesn't look at their poop? He is a truck obsessed book worm who occasionally likes to wear princess shoes and sunglasses. He is in love with his father, but mimics his sister. He snuggles me every morning and gives me wet, sloppy kisses every night. He licks his breakfast plate so as not to leave a drop of syrup behind, each time covering his forehead in stick. If his sister coughs, he coughs. If his sister cries, he cries. When she sits, he sits. When she walks in a circle, he walks in a circle; but, when he plays he plays independently and with focus. He walks with a heavy footed, determined strut. He pants like a puppy and dances with his fists.
The youngest, and generally most quiet, I have yet to give an official blog nickname. He is either going to be Popeye or Ace. Popeye because he often looks at me with only one eye. Ace because his unruly, full head of hair often resembles Ace Ventura Pet Detective's oddly pointy style. Though the smallest, his contribution to the noise factor in my home is not to be overlooked. He is a third baby in a house of noise and he is seemingly aware of that. He makes himself heard by crying very, very loudly - at times shrieking. I think part of the issue here is that because he has older siblings I can't always meet his needs immediately as I'm knee deep in someone else's mess. So he is forced to cry loudly to make himself heard. The flip side of that awfully loud, ear piercing cry is a very happy, smiley boy who coo's and gurgles with the best of 'em. His smile, undoubtedly, cancels out any frustrations from crying. He gazes at the two older kids and is easy going. He likes to be part of the action and has quickly grown accustomed to having his sister's face 2 inches from his own face. He seems less enthused, though, when his brother, the brute, tries to smother him like a human blanket. He needs a swaddle to fall asleep, a pacifier to drown out noise, and he likes to have his face buried in a blanket or my armpit. He has learned his hands are his and he can get them into his mouth if he wants to; but, keeping them there is another story. He can handle a diaper change on a full stomach, but he won't go easily if he's hungry. He can pass twenty minutes easily looking at the window or playing on the activity mat. He's quiet in the bath and loves a massage.
I catch glimpses of silence at night just after the older kids are in bed and the infant is fading to sleep. I relish it for a few minutes until I, too, drift to sleep. In the morning, I wake to "Ma! Ma! Ma!" from Mister, I stumble around my dark room looking for my slippers and then I excitedly peek-a-boo into his bedroom to pull him out of his crib, and into my arms for our morning snuggle. Peace and quiet have certainly left me, but I wouldn't trade what I got in return for anything - PURE JOY.
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