Monday, August 02, 2010

Life with Lamp




The other day we were on a family walk.  I was staring down at Lamp in the stroller and I commented to B that I don't really notice her limbs anymore.  I don't even really see them...she just looks like Lamp.  Later that week were we all out for lunch and there was another family there with a baby who was close to Lamp's age...they were just 4 days apart I found out.  As we were looking at their baby I commented to B how strange it was to see a baby with long limbs.  It's not that their baby looked weird by any means, but I was used to a new normal and those long limbs were not in my new visual vocabulary at least when it comes to newborn babies.     

Sometime later I had a conversation with a good friend.  Her daughter has a hemangioma over her eye and while other people notice it, she said she never thinks about it.  She never even sees it, until a stranger or someone she's never met will ask her daughter what happened to her eye, and then she remembers, "Oh yeah..."  She then went on to say how it is when you love someone...you love all of them and you don't see  the flaws or differences that others might see.... in your eyes it's just your child or your husband...the person you love.  That really made sense to me, but probably not something I could understand as well until Lamp came along.  So really, she's just my Lamp.  And the only thing I'm really dealing with right now is the typical newborn stuff.  And overall it's going pretty well if I do say so myself.  

But just around the corner is the rest of her life.   

When people say things like the first 3 months are the hardest I know that's true in a crazy-sleep-deprived-newborn way but well that's not exactly true for Lamp.  In some ways these newborn days might be the easy times.  While we're going to be meeting with therapists and other people to help her work with her limbs, I worry about things like will she be able to hold a toy in 6 months?  A completely foreign but very real concern.  She may be fitted with her first prostetic limb at around 6 months as well--which is medically amazing, but parentally daunting.  Right now she's my beautiful baby...and she will always be beautiful, but there will come a time that when she'll notice she's different, when her peers will stare and ask lots of questions, and when other kids might tease.  I don't like thinking about that stuff and truthfully it doesn't worry me a lot, but it's there.  

So right now it's just the normal adjustments from a 1 kid to a 2 kid family.  I'm trying to figure out her different cues and what she needs and when.  I'm trying not to loose my mind with my 3 year old.  I'm trying to live in the moment and enjoy these days for what they are... uncomplicated.          


12 comments:

  1. Wow. Reading your words is like taking a peek into my very thoughts. My little guy is almost 7, and he was born with Spina Bifida.

    I remember those early days so very well, and also feeling like those were the easy times. I completely feared the day that he would realize that he was different from other children, and was absolutely terrified of the day that other children would realize it, and point it out to him.

    I didn't see him as any different from our other children. But as time went on, I realized that he didn't see HIMSELF as different, he just saw the way he DID things as different. Does that make sense?

    I remember people constantly asking about the shunt in his head, and I always thought it was a bit strange because after the first week or so, I never really noticed it. They saw his little clubbed feet and with sadness in their eyes and voices, immediately asked if he would ever walk. Interestingly enough, after having Jake, walking just seems so low on the list. He doesn't walk on his own. So what?

    I guess that's the blessing of being a mother. I didn't see those things when I looked at him. I saw my baby, my toddler, my boy.

    I see the looks of pity in others eyes when they see him coming in his wheelchair, and then they meet him and I see that look in their eye change. I see them see him for who he really is. Not just a boy in a wheelchair. I see a look of awe. Because he is pretty awe.some (if i do say so myself ;)

    It's funny because we now have an 8 month old baby girl, and I'm almost shocked when I see her doing "normal" baby things like crawling, scooting, rolling..etc... After having Jake, I had forgotten those were things babies could actually do ;)

    Because you love Lamp for WHO she is, she will know that even though her body may be a bit different from others, she can do anything! She will have so much to teach others. So much!!

    Enjoy these sweet days with your babe.

    Okay, so sorry for leaving this book on your blog. I've been a reader for a few months and only commented a couple of times, but today's post just really struck a chord with me.

    And now....I'm done.

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  2. This was fabulous. I LOVE your insights. You are a woman to admire, and I sincerely wish I knew you in person! At least I know B, and that helps :) This world is a better place because of your family. Serious. Thanks for sharing your heart with all of us.

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  3. I really enjoyed this post. Lamp will know that you love her no matter what. Truthfully when I saw her picture I thought, nothing is wrong. She looks like a newborn baby to me. So beautiful.
    Love you and thanks for sharing your thoughts.

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  4. i can't get over how cute she is. i can't wait to meet her!

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  5. Anonymous1:24 PM

    Dear Miggy,

    Life with Lamp IS SWEET, SO SWEET... I can attest to that. She has a beautiful and sweet spirit. I know, how can one say that about a newborn infant? But it is true, we were there and witnessed this very thing. And I noticed she seems to be happy... happy with her family, happy in her new home, and happy with her body. And we are are happy too, happy that she is ours. And she is a beautiful baby as well! Absolutely beautiful. I am glad we were able to come and help out a little. When my friends have asked how it went, my reply is always the same. I say " It was a sweet time, a sweet, sweet time." We felt a peace that permeated your home my dear, and I count being there as one of my life treasures.
    We LOVE LAMP, and we LOVE BEANIE and we LOVE YOU & B. Keep up the good work! I love the picture of her you posted.

    All our love,
    GG & Papa

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  6. Every time I read about your experiences with Lamp, I well up with tears. Thank you for sharing.

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  7. thanks for sharing. i have a special needs daughter, who, from the outside might look completely normal to others. other than a few mannerisms, she is physically developed perfectly.

    she is also mentally 'normal' (is there such a thing!?) but she has a neurological disorder called rett syndrome that, when she was about 2 1/2 took away her ability to talk and use her hands in a functional way, among other things.

    sometimes the future scares me to pieces. right now, at 3 1/2 she can still seem somewhat normal to others, but as the days go on, that gap widens exponentially.

    there are days i think about it a lot and other days we just go through the motions and the fact that my 3 year old doesn't say a word to me or that i'm spoon feeding her all her meals and getting her dressed and helping her do everything just never crosses my mind.

    and so far the experiences others have relayed to me are that she has taught them more (or their children more) than they could have ever thought possible. i think sometimes it just takes someone who is a little different to open up our eyes and realize that, no matter what we look like and no matter our abilities, we really are all just the same.

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  8. Tharker--Thank you so much for your comment. That was really great to hear. I'm glad that made sense, especially to someone who's been there, done that. And that whole 'look of pity' thing is probably what I'm dreading the most....so difficult.

    Adrie, Heather, Care, GG and SaltH2)--thanks for the love and support.

    And MJ--wow. You have such a great attitude as well...it amazes me any of us survive parenthood and child rearing (including the children themselves) and then even more so when I think about children with special needs. 3 cheers for moms is all I can say.

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  9. Beautiful post Miggy;) What a peaceful, thoughtful time this must be for you! I hope the "ease" of all this never ends;) She is beautiful. Can't wait to meet her.

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  10. Little Lamp is a beauty. I'm glad I got to meet you both- now I can come out from lurking.
    Lamp is a special little girl who has a very special family.
    Your perspective is so inspiring.

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  11. What a beautiful post! And a beautiful picture! I wish I could meet Lamp in person. Maybe you guys will just have to go on a road trip through St. Louis sometime. We'd love to see you all. I am glad to hear that you are surviving the newborn days well. She truly will be a light or a lamp to all who meet her, I am sure!

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  12. she is so adorable. i want to nuzzle those cheeks!

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