Wednesday, September 21, 2011

In The Club



As a friend of mine once said, hospitals are the great equalizers.  And it's true, everyone needs healthcare.  Rich, poor, ugly, pretty, educated, uneducated and oddly, the healthy and unhealthy alike.  Of course unhealthy people need hospitals, but the relatively healthy need hospitals just as much for the occasional broken arm, mammogram, food poisoning, etc.  I spent a lot of time last year at the children's hospital, it was basically a second home.  And since B worked there too, I was easily voted the spouse that visited work most often.  Spending so much time there I noticed that there were people who were there for relatively small things--the broken arms, the random accidents--and then there were people who you could tell, just by the way they carried themselves, were there for much more serious problems.  And of course usually not their problems, but their children's problems which only made it harder.  Sometimes you could tell these parents by the overnight bags and pillows they brought with them, sometimes it was just a heaviness in their gait and a solemn expression.  Obviously I didn't talk to them to confirm the seriousness of their situation, but it was just something you could see.  On one or two occasions I had the distinct impression of getting the silent nod, the secret handshake, the reverent acknowledgement exchanged from one knowing parent to another knowing parent.  Of course this was only after the somber looking parent took a little closer look at my sweet Lamp in her carseat and then it happened...the scramble to hold the door, the faint smile...I was 'in the club' and once they knew I wasn't just a casual hospital cruiser there was a small, slight, instant thing.  A bond?  A respect?  I don't know...but it was there.  This isn't really a negative or positive thing, just an observation.  It was kinda strange, this realization that I was now in the club.    

A few weeks ago we were at Costco.  We were standing it line for the traditional post-check-out-family-churro, when I happened to look back and see a couple of young girls standing with their mother.  The older girl, probably around 12, was talking to her mom while staring at Lamp.  She grabbed her arm about the same place where Lamp's short arm ends while talking to her mom with wide eyes.  I wasn't mad or anything, kids are especially curious/surprised, and really I do understand.... but it always causes a little flicker in my heart just the same.  After a minute I walked over with Lamp and introduced her to the girls.  It was a little awkward, but I'm still learning how to maneuver and handle these things well.  I just don't want kids to be afraid or even simply captivated.  I want them to see her up close, meet her and see what a cute baby she is.  I want her to be real to them.  Anyway, it was a little awkward but I did it and I was glad.  I hadn't noticed another woman sitting on the sidelines watching us.  At least I didn't notice her until she got up and walked over to us.  She was smiling and immediately reached out for Lamp's hand and remarked about what a cute baby she is.  She then told us about her son.  He was also born with limb differences.  I can't remember the details that she described, but something along the lines of missing fingers and toes, much shorter than average.  But he's great, she said.  He's a doctor now.  She kept talking and I don't remember much but it was one of those hair brushing moments.  I had been 'in the club' before with other people, but this was the super-duper exclusive limb differences club and it was someone in public walking up to us without being phased by Lamp in the slightest.  It was just so nice for once to have someone out in public relate.  A mother who could look at my baby and be reminded of her own baby and just bring us into her little circle of sunshine while she talked about her son.  I hope I can be like that for other people, whether they have kids with disabilities or not.  

Then for Princess Sparkle's back to school night we were standing in line for some food when I suddenly realized the little girl in front of me was missing an arm.  You would have thought I found the golden ticket I was so excited....look at her!  She's missing her arm!  Right away I found her mom and we started chatting up a storm and exchanged information.  A few minutes later we saw an older woman  at the same school event walk by with a limb difference on her right arm, very similar to Lamp's right arm.  What is going on here? we thought.  We have rarely seen limb difference out and about in the real world and suddenly we had 2 in one night?  Not to mention our friend from Costco a week or two before?  Strange as it sounds, it was comforting.  I don't mind being in the club at all, it's just nice being reminded that we're not the only members. 

Have you ever found yourself part of an exclusive club you hadn't really planned on joining?  What did you do to help others finding themselves suddenly in your club?        


15 comments:

  1. I totally understand! I have been thinking a lot about the club that I never wanted anything to do with, but that I'm suddenly a part of. I don't know if I'm in denial or what, but I have yet to really reach out to anyone who has gone through what I'm going through. I guess I just want to get through the rest of the pregnancy and deal with whatever is to come when it comes. Is that horrible?

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  2. When Marcus and I couldn't get pregnant, suddenly we were in the infertility club, somewhere I never imagined I would be. I would never wish infertility on anyone, but it was comforting to come across someone going through the same thing, who could relate, and make me feel less alone or like I was the only one going through this.

    When we got pregnant after a couple of years must admit almost felt sad being kicked out of the club. I was grateful obviously, but I guess in a way I just feel like I will always be able to relate to people struggling to have children, so even now when we have our little baby boy I try to empathize with those still going through infertility and just be there to listen to them when they are having an especially hard day.

    Little lamp is so darling. It sounds like Matt and Marilee had a great time visiting with you guys.

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  3. I understand what you mean--we felt that way when our son was diagnosed with Bipolar II (a condition that really kicked in at age 11). At times, we felt (and still feel) very isolated. Our son is never going to be like the other kids. Even with great medication and a vigilant psychiatrist, his moods will still cycle. Sometimes this makes him difficult to live with, hard for him to keep friends, and negatively impacts his school and job. We often feel judged by outsiders who wonder why we can't control our son they way they can control their kids.

    In these last 6 years, we have developed a strong bond with several other families who also have children with mental disorders (depression, bipolar, anxiety, etc), and we have become listening ears for one another. Sometimes that's all it takes, just to know you are not alone and to hear what is or isn't working for other people.

    Hang in there. You are an excellent advocate for all children with limb deficiencies because of your beautiful Lamp and will help bring awareness and compassion. You're not alone. :)

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  4. Among residents and doctors, "the club" is referred to as "chronic kids." As in, "The patient in 204, he's a chronic kid." Or even, "I have 10 or so chronic kids in my practice."

    I've never thought about the term before today, it's just something everyone uses. But it's probably not the most respectful way of addressing a child. I think the whole "child first" idea (ie, not "A Down's baby" but "A baby with Down's" is really important and often overlooked in a busy medical environment.

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  5. Losing a child club. I know what you mean about feeling a bond. You can't really "know" unless you are in the club, no matter what club it is. Take care of that cute little family of yours :)

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  6. Holly--No it's not horrible. I hope everything is OK though...take care!

    Chelsea--I had no idea you guys had been in that club. I've had quite a few friends in that one, some of them are still there and it's hard. And we had a great time with Matt and Marilee! If you're ever in TX you know who to call...

    Melissa--Bipolar. Definitely a challenging club. Especially since it's not something as obvious as Lamp's issues. I bet there are times you wish you could go around wearing a "my kid is bi-polar so leave us alone" t-shirt. When I think of mental illness, especially with children, that's when I feel like it is so important not to judge others...we just don't know.

    Alissa--I agree with what you said about the need of being 'child first' oriented is important, in medicine and in life in general. Remembering he's not the down's kid or the difficult kid or whatever but a kid first who happens to have a, b, or c.

    Gwen--The hardest club of all. I'm glad you have found support through others who KNOW.

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  7. Linda P.5:35 PM

    This was a very special post, and you know what I thought? Hey! San Antonio isn't so cursed after all! Look at the encouragement you received and gave to some very special people.

    I am in the club of parents who have special needs children who are now young adults, and who are trying to plan for their adult children's present as well as their future. It is definitely a difficult road at times.

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  8. great post. i'm part of the MS club. because i'm vocal and love to talk about it (most of the time) i get emails from random people asking for tips and who want to hear my story. when i respond it generally leads to a new friendship, helps give the other person a better outlook (because people can be so negative about it) and it also helps me figure myself out better.

    i'm curious-because i have young kids-how do you think it's best for parents to respond to our kids questions and comments when they see someone different (especially when that person is standing right there)? i'd love to hear your thoughts, examples, etc.

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  9. We just moved from San Antonio but while we were there, we loved it (we're Army). I just need to point out that you made your three Club friends in! San! Antonio! so yay for San Antonio! AND "traditional post-check-out churro"? Reallllllllyyyy? Hmm churros are pretty San Antonio-specific so I'm seeing another yay for San Antonio in there somewhere ( :
    I think you'll like it. Oh and Fiesta Texas is really great for little kids. If you get a year-long pass you can just go after dinner when it's not hot and enjoy the little kid rides and the lights and music.
    God bless you and keep you!
    Tracie

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  10. I apologize for going off topic with the Fiesta Texas comment. I just have been wantiing to tell you to go ever since you moved there.
    On-topic: my club is invisible. It's Moms Who Should Have a Baby Born in November but Lost the Baby to Miscarriage Instead. Because I'm invisible I can't find the shoulder I need to lean on. I'm so glad you have found others who are encouraging to you and your family. It's a wonderful thing to have people who understand you and want the best for your daughter.
    Tracie

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  11. I remember the first time someone talked to our baby like she was a normal baby. We were in an elevator and the woman next to me started baby talking. I must have had a terribly shocked look on my face, because when we made eye contact she just said, "My nephew has a trach too." Trach club.

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  12. You know I think we're all in (or have been in) one "club" or another. Some have a uniform you can never take off and some don't come with one at all. I think we've all had moments where we think, "Wow, if this person only knew how hurtful her words are right now...," and then, sometimes we've been the one to say those hurtful words to someone else. I can only say that I've found great comfort when I'm able to talk with a fellow "member" where there's no obligatory explanation. Sometimes I don't say anything because it seems like no matter how long I talk, that person would never, ever "get" it (obviously not to the level of a "true knowledge" but at least to the point of "believing on my words"). Worse is when it's dismissed as not being that bad. Am I making any sense? I'm a little tired.

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  13. What a sweet post. Even though I am not in the club, just know you have lots of supporters and lots of prayers being sent to your club!
    Speaking of your club have you heard of this site? http://kidzorg.blogspot.com/

    I just read about it on our local news website. It looks pretty fun and interesting! I love reading your sweet blog and all of us Bartons over here in Utah send our love your way!

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  14. I'm glad you talked to the girl at Costco. I probably would have really wanted to do that but not had the courage to. I bet it made a big impact on more than just that girl!
    You better be careful- if you announce your club to other people they may start taking drastic measures to join your awesomeness:)

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  15. This particular blog post and how you ended it asking if anyone had unexpectedly joined a club that they hadnt planned on joining....thats the exact phrase I have used time and time again since losing our daughter in October last year, that dreaded club membership I received. Parents who lose children. We have five and she was our oldest, and it is refreshing to find other people who can relate to you in some way thru these "club memberships" however I dont find myself having to explain things to onlookers, I have those uncomfortable moments when clients or strangers ask my about my children, how many I have, what are their ages, what do I say? How do I phrase it? Will she always be the age she was when we lost her? I understand you, I "get" you. I just found your blog today and you are a dear.

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