21!

Unbelievably, Caitlin is 21 today.

The last few years especially have gone by at a head spinning pace…. at least for me.  I tell my kids that life is a lot like one of those funnels at the science museum:

When you drop that coin in at the top, it goes so slowly, almost lazily around – and that is what a year is like when you are young.  Summer when you are 10 takes a bazillion years.  As you age, that coin seems to spin faster and faster in a dizzying blur of events, work, joys and mundanity, days and moments and then another rotation around the sun has commenced.

 

 

 

 

 

 

The early days of her disease were slow as watch-the-pot-boil and speedy at the same time.  It felt that her childhood was sand slipping  too fast through my fingers while I tried to preserve it for her, make it normal for her.  At the same time, the days were painfully long and slow.  The medicine didn’t work fast enough, the pain lasted too long, the sleep was too short….new medicines didn’t get to trial expeditiously.  It was like treading molasses instead of water….

 

 

The idea of her being an adult seemed way too far on the horizon to even imagine.  At the time, it was a tremendous effort to scrape together the hope to make it through middle school – which is how old she was when I started this blog.

And yet – here we are.

I haven’t written very much in the past several years and it occurs to me that perhaps I am slightly superstitious.  Perhaps, things have been going so well that I haven’t wanted to tempt fate and invite history to repeat itself.

Or, perhaps life has just been moving more swiftly and with the blessing of balancing all the normal balls in the air – work, family, kids’ activities- I haven’t made time like I used to.  Maybe I haven’t needed to share as much as I once did.  And many times, I have felt that I don’t really have anything to say that is worth listening to…. sort of like I am aged out of the club now.  Even though the disease will always be JA, she is not a child anymore for sure!

And yet, here we are 😉

Not wanting to minimize any of the monumental life events of the past several years – I do want to say: She is well.  Very, very, well.

She is a college student finishing her third year.  She has changed her major to Health Care Administration and is still figuring out what that may mean as a career – but is leaning towards PT and I think that would be a tremendous fit.  She has a job that she is good at, working at a real estate company full of young, hip people- and she treats it like a job.  She is more astute financially than I was in my 30’s.  She knows how not to get bilked into extra services at Jiffy Lube.  She navigated the procurement of a passport on her own.  She found a new orthopedic surgeon and consults with him on her own. She has a lovely boyfriend who has been around more than three years and is like part of the family.

She lives at home and it fits in a way I wasn’t sure it could- with her still being respectful with us, but still gaining independence… and still being such an integral cog in our machine that we miss her if she is away. She is immaculate around the house and her car always smells clean – two more ways that she excels above me.  Her organizational skills are both a tribute to me and a lesson-  #goals. She is a lovely young woman. These worries of transition are fading somewhat – because she has picked up adulting with flair.

She does not take medication for arthritis. She has not for several years.  I wish I could explain this…. I cannot.  To say now that she was so sick we worried for her life seems implausible- yet it is truth. And I have no explanation for how the kid who did so poorly that we had to make the decision to replace her hips at age 11 is now, for the time being – not dealing with active inflammatory disease. I have no explanation for a period of unmedicated remission that now spans years…and years.

Not to say that the effects of JIA are not present – the damage of the disease is real.  Her joints, particularly her knees and shoulders, are quite damaged from all of those years.  Activity causes pain and she is mindful that joint replacement is not just in her past.

Her hips are holding – which is a huge blessing.  This summer will be 10 years since her left hip was replaced- and though there have been some instances of micro-movement with the acetabular cup, so far the titanium is doing just fine! The implants show no signs of not being able to go many, many more years.

She still has issues with sleep sometimes…and anxiety.  Just like when she was a child and I couldn’t tell whether her moods and behavior were just normal for the age or arthritis related- I can’t tell now.  I work at a university and anxiety, depression and overall mental wellness are huge issues for her age group. Anxiety is a reality for millions of Americans without a chronic illness, and that may have been the case for her.  But I suspect it has to do with the years of dealing with pain- really severe pain.  I believe that there are some receptors in her brain that still fire on all cylinders in response to having her hip bones crumble away- when the titanium replaced them ten years ago.  Phantom pain response manifested as anxiety.  In any case, she has embraced this reality with the same tenacity and perseverance she did everything else.  She does yoga, and has aromatherapy candles, and walks the dog, and uses a weighted blanket.  She practices self care in a way to mitigate the anxiety…another way she excels above me:)

Overall – she is well.  Very, very well.  I know.  I know how fortunate we are. I know. And I am so grateful to everyone who ever read any of my words, or offered virtual support, or sent a wish or a prayer heavenward with her name in it.  I am so thankful for everybody who journeyed with us in this JA Family! 

I know we are blessed!

What I don’t know is what tomorrow will bring.  We don’t know if this cease fire in her battle will end. I still have fear fantasies about the future and what might happen down the line….

But today – today she is well.

I do know that we are celebrating her now… celebrating that she is 21!! Celebrating the woman she is becoming and the life she is making.

21.

Here we are. ❤

 

 

 

 

 

 

 

 

 

 

 

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2 Responses to 21!

  1. Aunty Mo says:

    Beautiful, just beautiful. I love you guys with all my heart. XX

  2. Stephanie Medina says:

    Thanks for the amazing update! What a story of trials and success. So happy to hear she is in remission and going into the medical field. What compassion she will have for patients and families. She is so lucky to have such a supportive family. Best wishes to everyone.

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