Monday, November 25, 2013

Hey


Last weekend was the annual pilgrimage to Dallas for Lamp's Dr. appointments.  This was the first time I ever attempted the trip with Lamp solo as it's not as easy to travel with a kid who can't feed herself snacks or even handle a sippy cup on her own in a carseat.  But it went well!  I'd like to thank the makers of Camelbak and our in car DVD player for making this trip possible.   (We use a camelbak strapped to the back of the chair and then clip the straw to the side of her car seat so she can access water all by herself.  Genius.)  It was a good trip.  We drove safely, met up with some friends, saw the good Dr's of Scottish Rite and like most kids Lamp was thrilled with the novelty of bouncy hotel beds and the phones found next to the beds.  She had a lot of calls to catch up on.

Two things stand out for me about this trip.

#1.   I heard from a good friend of mine that Lamp was bragging at church about going on a trip with mom all by herself.  Just her, no sister.  I had to laugh since in reality she was missing sister something fierce for those 2 days.  We had to face-time at least twice a day, call and talk to sister at least 2 more times and yet I she still lamented how much she missed her sister.  Over and over again.  She even made up 2 different songs to express the full range of her longing.  Nice try Lamp...you may talk a big game, but you're just a mushy puddle of sister love when it comes down to it.  Their reunion might as well have been filmed in a field of yellow daisies, while they run to each other in slow motion.  Reunited and it feels so good...        

playing beauty salon in sisters room yesterday


#2.  We met up with our friend and fellow limb difference-r Jessie.  You may remember we met Jessie and her mom on our first trip to Dallas--we've kept in touch ever since.  Jessie is a big 10 year old girl and has similar difference to Lamp.  It's great for Lamp to have a bigger friend and role model to look up to.  We really adore Jessie and her family.  While Jessie has similar differences, she does not have a longer arm or hand at all and this time around Lamp seemed very interested in that point.  At dinner she said, Why doesn't she have a longer arm like me?  How is she going to eat?  I was like, are you, YOU out of all people, asking how she's going to eat?  Talk about the pot calling the kettle black.  Uhhh, she's going to eat with her feet like you do occasionally kid.

Here's the thing, this isn't the first time she's called someone else out for the way they look--she's a kid and she has her curiosities and questions too.  Although I know the irony is thick when our beautiful armless wonder points to the sweet and elderly woman at church and says, Mom!  She looks like a witch!, I also know she's just another 3 years old for heaven's sake.  And even 3 year olds with missing arms have something to say about the way people look.  Fortunately the sweet and elderly lady is also deaf.  But when she started asking about Jessie's limb differences I was a little surprised.  She knows what kids say about her and she knows what we tell them.  What happened to her arms?  She was just born that way.  Not only that, but she's seen Jessie plenty of times and has even seen her eat.

On the way back to the hotel she again asked, Why doesn't Jessie have a long arm like me?  I want her to have a long arm.  Confused, I turned down the radio and asked her why.  Then she said, I want Jessie to look just like me.  And as we chatted for a couple more minutes it became clear that she wasn't concerned for Jessie, she didn't feel that somehow Jessie was missing what she was supposed to have, Lamp just wanted to see someone exactly like her because she never sees that.

I get that baby girl, I so get that.  In one way or another aren't we all are looking for people like us? Be it interests, political views, musical taste, intellect, religious beliefs, whatever.  I just take it for granted that visually speaking I see people like me every single day, every where I go.  

But in one way or another we also all have to learn the same lesson.  I think The Rolling Stones said it best:

You can't always get what you want. 
But if you try sometimes,
You just might find, 
You get what you need.  

Hard as it is to hear those little realizations, I'm really not too worried.
I think she'll get what she needs.

Do you know how I think you get what you need?  Gratitude.  From what I've seen in her 3 short years, the girl has gratitude and that will get her places.  Maybe not the same places that walking legs and power chairs will take her, but I think she'll be OK.  In fact, I know it.  On this week of Thanksgiving, I'd love to hear how gratitude has gotten you what you need, and maybe even sometimes what you've wanted.

Hugs.

*****

Life is slowing down around here... because it is finally hitting me.  We are having a baby.  And slowing down feels good and it feels right.  I love this blog and will continue to write what I can, when I can.  But I'm really taking the pressure off myself for the time being.  2-3 posts a week.  If that.  If I'm feeling ambitious or chatty, maybe more.  Love you guys and Happy Thanksgiving!  

7 comments:

  1. lovely post. You are an excellent parent to your children.

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  2. Anonymous4:18 PM

    Autism is a devastating diagnosis. After we were given the autism diagnosis at the Childrens Hospital, the doctor recommended genetic testing because some serious syndromes start showing themselves as autism in the early years. Thus began almost a year of testing on both our daughter and us, her parents. It turned out she had two mutations; one for Rett syndrome and one for Juvenile Parkinson. Rett syndrome would render all her limbs useless and take away any speech, trapping her inside her body. Juvenile Parkinson would be similar. The continued testing was to see if she would get these diseases. This year of not knowing if she would get these horrible diseases was the hardest year of my life. I was always crying, regardless of having started taking an antidepressant, and still going to my full time job. And once my daughter was cleared of either disease, I realized that autism, as challenging as it is, is nowhere near as bad as some other ailments that other children and parents are dealing with. I have so much gratitude knowing we came back from the edge of the abyss. I can’t believe I was once depressed about autism.
    Mel

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  3. Gosh that picture of Lamp on the phone could not be more priceless. :)

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  4. Happy Holidays to you and your beautiful family Miggy! Can't wait to see new baby sister. Best wishes!
    Donna in MA

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  5. Anonymous1:52 PM

    Oh, what a wise and nice mother Lamp has got! I try to learn from you.
    Märta in Sweden

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  6. Oh my heart, I love that she made up songs about how much she misses her sister!

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  7. Everything in this post lifted my heart. I love Lamp- she is one of my heroes, and so are you my dear Miggy. I am so grateful for you and your precious family- you have all taught me so much.

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