Monday, May 18, 2009

Early Signs

It was Friday, December 21, 2007. The kids and I had gone to a jumping castle gym where they bounced and frolicked for a few hours. Naturally, they all took a tumble that brought some temporary tears but for the most part, they had a wonderful time. We went out to lunch and then ran a few errands that would finish off the last of our Christmas ‘to do’s’. It was an extraordinarily ordinary day until…

I was unbuckling Aria’s car-seat seat belt and pulling her toward me to get her out of the car when she shrieked, “OW! Mama, you just bent my arm!” I was horrified thinking that I had caught her arm in the seatbelt and yank on her in some odd way. She was in tears and I was checking her arm to make sure I hadn’t done something. She recovered quickly and we went into a store and that was that. I thought it was over.

She didn’t complain about her right arm and shoulder again until later in the evening. She was walking around holding her arm bent on her chest as if in an invisible cast, protecting it. Doc checked her thoroughly for a dislocation, a broken bone or swelling of some kind to give us a hint as to what was happening. Naturally, I was devastated and completely confused to think that I might have used a force capable of causing a serious injury. It didn’t seem possible to me because I had pulled her out of the car no different than the hundreds of other times I’ve pulled of the car. It was so strange and unnerving.

Aria is a sunny beautiful little girl full of bounding energy and creativity. Seeing her in tears, whining and complaining was a real departure and it was a little scary because we couldn’t find any obvious cause for her pain. We thought it must be a muscle pull of some kind and that her arm was in an odd angle in the seatbelt when I pulled her out of the car. We gave her a little motrin to ease the pain and that helped tremendously.

The following day, Aria’s arm was sort of limp. She wasn’t using it and it was slightly tender to the touch. We had convinced ourselves that it was some kind of kid bonk and it would take a few days to heal. By the end the day she was moving her arm and showing us that she could lift it above her head without any pain. We were encouraged and optimistic that it wasn’t going to amount to anything serious. The next day, however, we were outside playing when the dogs knocked her down on the hard packed snow smack dab on her sore arm. The pain was excruciating and it took longer to comfort her.

Over the next day, Aria had periods in the day when her arm was very painful and we gave her motrin and it helped. It was strange though because she just wasn’t herself. She was more sensitive and fussy. In the middle of the night she would whimper and moan in pain but it would resolve with comforting and medicine. Still, we couldn’t escape the nagging thought that something was off and we just couldn’t put our finger on it.

It was Christmas Eve and Aria was excited about Santa coming but subdued. She lacked the sparkle and brightness that defines her so completely. Doc and I discussed maybe taking her to the ER just to check what was going on. It is very hard for me to admit that the last place I wanted to be was in the ER on Christmas Eve while it was snowing with my daughter whose arm ached and we didn’t know why. I just groaned thinking of having to spend hours and hours waiting and kept hoping that her arm would just get better. On top of feeling horrible that Aria was so uncomfortable with her arm, I felt the added shame of not wanting to take the necessary steps to figure out what was going on. Doc really wanted to give her a few more days of rest and healing before we took her in to be seen. He really didn’t worry too much about it. I took comfort in that.

It is difficult for me to look at pictures of Aria from Christmas morning knowing now what I didn’t know then. I still haven’t been able to watch the video we made and I cry every time I look at these photographs.

Despite that, we had a wonderful Christmas and Aria seemed to be improving. Her pain was still prevalent but her range of motion was increasing and she seemed less irritable. We decided to go ahead and call our doctor the day after Christmas to have her seen. We wanted an objective opinion of what might be the cause of her pain and discomfort. We wanted make sure we weren’t missing anything and that she was in fact getting better. We were able to get an appointment for the following morning, December 27, 2007. The physician’s assistant gave Aria a thorough examination and concluded that it was more than likely a muscle strain. Although he gave us a referral for x-rays, he didn’t think anything would show up so we didn’t pursue that and instead went home. Over the next several days, Aria continued to improve until finally she didn’t seem to have any pain whatsoever. It was great and she was back to herself again, until…

Friday, January 11, 2008 Aria out of nowhere started complaining that her left arm and shoulder hurt. I could think of no reason for this pain and it was weird. I was worried and exercising a bit of denial that it could be something really serious. Regardless, I wrote an email to 3 of my nearest and dearest friends, whom I call “My goddesses.”

January 12, 2008
We didn't go sledding yesterday, which was a huge bummer. I was totally looking forward to it. I don't know if Aria is going through some kind of growing pains or something. She's complaining that her "arms are bent". This time I have no idea what the matter is.. I can't trace back to any incident or injury that may have tweaked her arms. She says its both her arms..When I touch her shoulders, they hurt..when I touch her elbows, they hurt..when I pick her up under her arms, that hurts. She's all over the map with her emotions related to it too..I find this really do I address it and take her seriously without feeding into it if it’s partially a 4 year old attention getting thing and how do I downplay it without ignoring her because something definitely is off. She can be a whiney 4 year old but she's not a manipulative 14 year old! She's just not herself and that is the indicator to me. Poor thing woke up yesterday in tears and she was like that most of the day! poor thing.. icecream helped and watching the wizard of oz..also playing ponies with her and a nice hot bath but other than that she was a puddle!
Here's hoping for a much better day!!

Over the weekend it was the same old story. Aria had moments when she seemed as if everything was fine and others when she would wake up in the middle of the night screaming. I told Doc that come Monday morning, if she wasn’t better, I was taking her back in and having her seen by our regular doctor.

Monday morning rolled around and Aria had not improved enough for me to let it go. Once again she was more irritable and fussy. She just wasn’t herself at all. I called our doctor’s office and was told that our doctor could see her on Thursday and just as I was about to arrange that appointment I said, “You know what. That’s actually not going to work for me. I’m really worried about Aria and I need her seen today. Is there any other physician available today to evaluate her?” I remember my heart pounding in my ears and suppressing tears as I said that. I was told that another doctor could see Aria later in the afternoon. I took the appointment and later that evening I wrote an email to my sister Sue.

January 14, 2008
Things here are just ok. Poor sweet Aria is dealing with something.
At Christmas time, her right shoulder was really bothering her as you
well know but Friday she started complaining that her left shoulder
hurt. She is now walking around with her left arm bent as if it’s in a
cast..she is totally protecting that arm and shoulder. Poor thing.
She is SUPER sensitive...can hardly pick her up without her
crying..We went to the doctor today..of course during the exam she is
able to straighten her arm..put it over her head and
I agreed it was a bravado thing..a few times she flinched so the
doctor knew something was up but at least ruled out a dislocation,
bone spur etc..Sooooo, we had some lab work done...she had to be
poked 3 times in order for them to find a vein. Poor thing...Then, we
had x-rays done of her shoulder.. I am so trying not to worry about
the really scary shit like bone cancer or rheumatoid arthritis but
there it is in my worry center! We're hoping it is just a weird
manifestation of growing pains...joint swelling etc...but still, poor
thing.. the kids were amazing..true champs...all of them. We were
doing the doctor thing for over 3 hours! They were wiped by the time
we got home but still I could not be more proud of them. It is such a
stressful thing because one minute she is fine playing "jokes" (this
is a little game she and I play..this is her idea of telling me a
joke; Hey mom, "I'm going to eat the poop!" to which I die of fake
laughter and respond, "Aria, I'm going to eat the pee snow!" It
deteriorates from there!!!) So, one minute we're telling jokes and
then the next minute she's whimpering and crying in pain and the next
minute she's playing with Rianna..Up and Down and Up and Down!! Dr.
Robinson, a colleague of our doctor was actually reassured by
that..She took that as a sign that something is very real but isn't
so consuming that she can't distract herself. I was reassured with
that perspective. So, basically the work we had done today was all
the Rule out stuff..Please keep her in the light! I arrived home and
was consumed with thoughts of the millions of unknown mothers the
world over who are dealing with very real tragedy at this very
moment...very real illnesses..very real injuries..very real
injustices..that are happening to their children. I feel so deeply
for them and at the same time feel so incredibly grateful for our
health and well being. I feel incredibly humbled too.. Life is such a
fragile, fragile, fragile gift!

I'm chilling with a glass of wine, waiting for Doc to get home. He
drove over to Seattle today and should be home soon. There's weather
going on out there so as soon as he's home, I will breathe a huge
sigh of relief!

I'm still processing our conversation.. I have to say, that I am just
so amazed by you and Jim. Truly, Doc and I admire you so very much
and look to you as our mentors in so may respects and for so many

Love to you! ~j

The following morning, Tuesday January 15, 2008 at approximately 10:45 am, Doc called me with news that in an instant shattered life as I knew it. I was no longer the same person and I was thrown upon a foreign path that left behind everything I thought was real and forced me into a new world of “What Is.”

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