It Hurts on the Inside

Seeing the swelling, just a year after the first time, brought a frown and then a shrug of denial.  Swelling didn’t have to mean what she feared. And it was possible that it was attributed to the little knee banging into the coffee table. That had just happened yesterday.  It was possible.

And yet, thinking back to the last week of complaints about knees and elbows “hurting on the inside,” she knew it was most likely another bout of arthritis in her daughter’s joints.  And this time the doctor’s reluctance to officially diagnose the three-year-old with Juvenile Arthritis would become obligation. The shrug in the shoulders became a slump, and the frown softened into sad resignation.

She didn’t tell her husband about the swollen knee for a few days. There was no rush, and the boulder sitting on her chest was easier to bear alone – without having to comfort anyone else.  Besides, the child’s complaints were sporadic, and she still ran and jumped and danced all day and half the night.  No need to get the ball rolling again. No need to face the rhythm of appointments and hospital rooms and stickers and tiny Nicole Miller pajamas provided by the kind, but firm nurses.

They had been hoping that the first swollen joint would be the last.  And for a while, it seemed like that was a possibility.  Only one knee had been affected that first time, and in the eight months since the steroid injection, no other swelling or pain had appeared.  Eighteen  months, the doctor had said.  After eighteen months we can exhale and give her a clean bill of health.

She hadn’t even made it halfway there.  And now it was time to start again.

Sitting in the waiting room as her three-year-old daughter played with the toys, the mother snuck looks at the other children there.  Not really children, they were probably ten, twelve. Awkward and cheeky. And one girl must be at least seventeen; she had driven herself to her appointment.  Hot tears sprang to the mother’s eyes as she watched the probably-ten-year-old rise slowly, painfully from her chair after her name had been called.  The pre-teen’s stiff limp across the hallway and into the examination room caught her unprepared, and the mother bit the inside of her lip to keep from dissolving into tears.  The mother’s nostrils flared, but the tears stayed in.

Please let my daughter be strong, the mother prayed to no god in particular.  Please let me be patient and show her how to bear this with grace.  Please.

Information about Juvenile Arthritis.

About That Unique* Weblog

Adjusting to the car culture, dealing with leaving a career I love, and spouting off along the way.
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100 Responses to It Hurts on the Inside

  1. Ado says:

    Oh my goodness. So-so-so-so powerful. Thank you for writing this. Broke my heart. You are such an awesome writer.

  2. Robbie says:

    wow. beautifully written.

  3. Anna says:

    My heart aches at the thought of a child having pain on the inside. So well-written.

  4. mamamash says:

    So much pain. I’m so sorry.

  5. Lenore Diane says:

    KD, I agree with the others. You wrote this post well. My heart goes out to all who know this as real life.

  6. Carrie says:

    This struck a cord with me. As a mother i know how horrible the feeling is, waiting in a doctor’s office or hospital room…going through tests and trying to read doctors expressions. So hard and you told it so eloquently.

  7. Oh, how I feel your pain! My sweet 6 year old daughter was recently diagnosed with polyarticular JRA as well. My heart is heavy and I carry a lot of pain around internally worrying constantly about what the future holds in store for her and the unknown long-term effects of the powerful drug (Enbrel) that I am injecting her with twice a week. Watching her sullen face as she sits on the sidelines while her baby sister plays soccer games, a sport she passiontely loves, is a hard lump to swallow. It hurts feeling so helpless to help her. And people don’t understand how serious JRA is. They think, “Oh, arthritis can’t be that serious….”.

    But what else do we have if we don’t have hope? Let’s keep the hope that one day they will find a cure and that our children go into remission. We are doing everything we can, everything we know to do. There are children who DO go into remission – and once again can run and jump and dance. Watch this for great hope (eatch to the end): http://bit.ly/xnac01

    All the blessings in the world to you and your sweet little girl. I am RT’ing your wonderful article on Twitter.

    Love,
    Julie

  8. aprilviv says:

    Awwh first time that I am reading your blog. I know how hard it is when our children are ill. Lots of love.

  9. That must have been incredibly stressful!! Great post!

  10. Wow – I teared up just reading it. What we wouldn’t do to take away pain like this from our child. I hope all is well with her and that she stays strong. Thank you for sharing such a powerful and personal story!

  11. dadofthedecade says:

    Oh, I know those cycles well. So very vivid, so real. You’re a hell of a writer.

  12. Delilah says:

    Oh how I hate arthritis. I have it in one of my knees as a result of damage done in a car accident. It sucks, plain and simple. I am often amazed by the strength of my son who has severe special needs. That child has endured more in his 9 years of life than most people do in a lifetime. He is the strongest, most compassionate person and I’m in awe of him. Children are so resilient and so much stronger than we think. Fabulous post!

    • Thanks for this comment. It’s true that children can be so strong, but it’s a learned behavior for most, I believe. Either out of necessity or supportive environments. I just hope I can live up to what she deserves!

  13. hsw says:

    You captured the not telling someone thought process so well, it does feel like a boulder on one’s chest. Great piece.

  14. My prayers are with your daughter. Internet hug!

  15. thank you for writing this post. I knew nothing about this. I will hope for the best for you and your daughter.

  16. Mayor Gia says:

    Ugh! So sad. I also didn’t know anything about this before

  17. Vanessa says:

    That has to be tough – being a mom and not being able to fix things. Is there any chance she will outgrow it?

  18. christina says:

    WHAT?! this is horrible. i had no idea young kids could get this!! my dad suffers greatly from arthritis- i cannot fathom a small child enduring this pain. :( i’m soo very sorry!!

  19. Kathy Kramer says:

    Very well written. I wish your daughter well in her treatment. You, too. I know how it feels when your child hurts (for any reason) and you feel helpless because you can’t kiss it and make it all better.

  20. Very powerful writing. You and your daughter both sound so strong.

  21. Wonderfully written! But I do not like how this made me sad. :(

  22. Ooohhh … Pain is tough to tolerate, and when the pain is our child’s, it’s so much worse. I’m so sorry.

  23. “was easier to bear alone – without having to comfort anyone else” <- That. Excellent piece. Truly excellent.

  24. Susan says:

    this is amazing. so well written and makes me want to hug both you and her.

  25. raisingivy says:

    I’m ashamed to admit that I’ve never even heard of children having arthritis. How awful! I wish I could have it for them. Truly. Beautiful post, and you’re obviously providing a service for those of us who are in the dark. . .

    • I hadn’t heard of it except in passing either. It’s one of the more common diseases, but I think because there are so many different types, that there isn’t a unified push to build awareness. Which is dangerous because the arthritis can aversely affect the growth of joints or speed maturity of the bones resulting in uneven bone structure. (Can you tell we just had an appointment today?) :)

  26. The gift of writing is the power to unburden yourself while enriching others—damn, girl, this hit it out of the park! My stomach still hurts after reading it. Big hugs and best wishes for you and your girl, Erin

  27. dberonilla says:

    Beautifully told, and incredibly sad. Thank you for sharing.

  28. Powerful writing is right. I loved the perspective you wrote this from…as if from the outside looking in. Beautifully done. So sorry for your daughter’s pain. Positive, healing thoughts your way.

  29. I, too, particularly related when you said you kept the possibility of relapse to yourself out of a desire to avoid having to comfort others. I don’t think it’s selfish; I think it’s self-preservation. Sometimes you need to own your own pain before you voice it. No rock-throwing here, friend!

    My daughter endures “growing pains” whenever she hits a growth spurt, & it kills me because all I can do is hold her close & wish the pain away. I can’t imagine what you are suffering “on the inside”, nor what your child is suffering physically. I’m so sorry. I wish I could help.

  30. Safira Ahmed says:

    Ms. Wald!!!! This is Safira Ahmed, I was one of your students at John Dewey High School!!! I had english seminar with you back in ohhh I think it was like 2003/2004!!! With your amazing teaching I had ended up getting a 100 on the english regents! I don’t know if you recall who I am but I would really really appreciate if you got in touch with me I really wanted to catch up with you. You were one of my favorite teachers at Dewey!

  31. TriGirl says:

    Oh, that is rough on all of you, I’m sure. I hope you’re able to control it most of the time.

  32. Thank you for sharing such a powerful post. (When my son was born with Down syndrome, I read some powerful memoirs written by moms of Down syndrome children. And I stayed away from all those scary, depressing everything-that-could-could-go-wrong-with-your-Down-syndrome baby books!) I wonder if you are working on a memoir! You are a talented writer!

    • Blushing now. It’s one of the great things about the reach of the internet (and it can be horrid sometimes, too). Sharing stories helps others so much. And it helps the writers as well. Thank you!

  33. Well written … and having dealt with pain and health issues with my own children … I can absolutely relate …

    • It’s sad to realize how many people deal with unfair situations involving their children. But it makes me feel lucky, in a weird way, also. Hearing other stories, and dealing with my own, is healing in many ways.

  34. Is there anything worse than watching our children hurt? Your words were well-chosen and powerful. Thank you for sharing them.

  35. sisterhoodofthesensiblemoms says:

    I have tears streaming down my face. I don’t know how to describe it, but the third person made this that much more powerful. I’m so sorry. You don’t have to disclaim that this is not life threatening, life altering is enough. And you voiced the thought of every mother (Well, of me, at least). “I kept it to myself so I wouldn’t have to comfort anyone else.”
    Oh, you have pierce my heart this morning with your powerful writing. A hug to you momma. Ellen

  36. Oh wow. I didn’t even know that this exists. I’m going to read more on the link you provided. I had no idea children could get arthritis. How awful for the child and for the mother too. We never want our children hurting. You convey so much with your writing. It really puts the reader in your position and makes him/her feel everything you are feeling. That’s a wonderful skill to have if you want to reach people.

    • Thank you so much for saying that. I never knew it existed either, and it’s relatively common! Of course, reading posts like yours this week, makes me feel like I’m far into this side of lucky. You did good.

  37. Julia says:

    What a beautiful and powerful post. Thank you for sharing.

  38. Very thought provoking. Thanks for sharing.

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  40. I do agree with Ellen. The third person voice made this piece that much more powerful. I’m sitting her wiping the tears from my eyes, just imagining my own experiences with arthritis being felt by someone as young as three. I just can’t wrap my head around it, for you and for her.

    • Thank you so much for that. I haven’t had arthritis, so I can’t even relate to what she feels. Thankfully, it doesn’t impede her movement yet. I appreciate your comments and response!

  41. WOW! Third person made this VERY powerful! You are so very talented. Thanks so much for sharing this with other parents. Your raw honesty brings comfort:)

  42. Rachel says:

    I second the “One hell of a writer” comment. And those last lines made think of this song I stumbled across a few months ago. http://vimeo.com/30288013

  43. Very well written, just the right amount of detail.

  44. sisterhoodofthesensiblemoms says:

    This got me again. Tears are falling. This writing is just so damn good. (I wish it wasn’t about you, though.) Thanks for linking up. Ellen

  45. Azara says:

    My co-worker’s daughter was just diagnosed with this last year at the age of 10.Thanks for helping me understand what they’re going through.

    • Oh that makes me so sad that she was older when it was diagnosed. I hope it hasn’t been too painful. My daughter has it relatively easy since only two (maybe three) joints have been affected so far. Sending good thoughts to your co-worker.

  46. This was beautiful. Ellen and I so appreciate you sharing this. Your writing is so simple but powerful. I echo a lot of the comments above. Beautiful. Powerful. Sweet. Erin

  47. my mother has arthritis–rheumatoid, systemic, pervasive. It hit when she was about 20 & now she’s past 70. It’s brutal – and even more so at this young age. What a heart-breaking story.

    • Thanks for stopping in, Deborah. We’ve been very lucky so far – with joint-specific flare-ups. And as some others have pointed out to me, medications are so much more effective now, and less awful in their side effects. I still hope we manage to avoid them altogether.

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