Monday, August 09, 2010

Hands


Precious Lamp


The hardest realization of Lamp's condition was when we were told that she doesn't really have any hands.  I know I've been vague on the details, so there it is.  She is missing her left arm except for a little stump at the top and her other arm is significantly shortened with a small hand-like appendage attached.  There is no thumb and the fingers she does have are all fused together.  When I mentioned that she'll be fitted with a prosthetic limb in a few months, it will be for her left arm. 

Almost everything I love to do, I do with my hands.  Paint, sew, play guitar, write, hold my husband's hand....hold my babies.  And even a lot of things I don't like to do require the use of my hands...doing the dishes, folding laundry, vacuuming.  And then there are the millions of little things I don't even think about that I use my hands for...washing my hair, driving, waving, putting in my contacts, drawing the curtains, eating cereal, grabbing the keys, throwing a rock, picking a flower...the list is endless.   I can't imagine a life without my hands.  I'm sure most of us can't.  Yet here I am, a mother to a little girl without hands.  It's a little mind-boggling to tell the truth.  Admittedly my first concerns were selfishly for myself... How long would I be feeding her, dressing her, combing her hair and bathing her?  Now my concerns have appropriately shifted to my little girl...How will she learn to eat or dress herself?   How will she play?  (Deep Breath).  That one hit me kind of hard.  Children play with their hands.  Especially at first.  When babies are first discovering their world, it's with their hands.  I vividly remember when Beanie first started reaching out for the toys dangling above her while laying on the play mat.  It seemed like one week all she could do was look, then suddenly she started reaching for the toys.  Because she could.  Because her hands were just there and it was the obvious and natural thing do to do.  It wasn't s a process I analyzed because I didn't think twice about the fact that her hands made it possible to play...but yet they did.  And I just wonder...will Lamp reach for toys? Will she know that's even an option?  (And her feet aren't a great option either fyi.)

It's strange how your perspective morphs almost overnight.  Things that you were never sensitive about suddenly give you pause.  Not too long ago Beanie came home from nursery on Sunday and her lesson that day had been I'm thankful for my hands.  Now I'm certainly not upset that she had that lesson and she should be thankful for her hands, but I couldn't help but think about what if Lamp was in that class?  I know they would have changed it for her, so I'm not really worried... but there was still a strangeness in thinking about the ordinariness of such a simple lesson, but how it doesn't apply to our little girl.  Or in one of my baby books, the author talks about swaddling babies until they're 4 months of age.  She then suggests you stop swaddling their arms so that their hands are free in case they want to suck on a thumb for self soothing.  And I sorta hoped the next sentence would read Of course if you happen to have a child who doesn't have hands, please disregard this advice.  I know the world can't account for every person who has out-of-the-ordinary circumstances, but there's a part of me that wants recognition for our daughter's life and situation.  And I don't know why... I understand the absurdity of it, but at the same time perhaps it's this lack of acknowledgement, that tells me just how unusual her body is and just how difficult this world might be for someone with no hands to maneuver through it.      

I was going to try and wrap this post up nicely with some sort of positive thought...but not today.  My daughter doesn't have hands and frankly that's just hard.              


30 comments:

  1. Man, you're a good writer. You are able to convey your thoughts so well. (sorry my comments aren't so eloquent). Little Lamp is adorable. I can only imagine what a difficult trial this is. I hope you can feel my love and support (and prayers). Lamp will have a great life to be surrounded by such a loving family.

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  2. I don't know how I happened on your blog, but I have been reading for a little while. I think you are a fantastic writer and mom. Anyway, Lamp is beautiful. I am not sure I have great advise for you. I think it would be so hard to have the thoughts you are having about little Lamp and how she will cope with her life without hands, but I think she is a lucky little girl to have been born into your family because I can tell you are going to be a great support for her. That lesson in your child's church class must have been hard. I hope they took into account that your daughter may be wondering why her sister was going to go through life without hands. Now, as I read your blog I can't help but think of a few people I have known in my life. I knew a man without any hands that was an artist. He drew with his mouth. When I met him he was fascinating to me. He was a wonderful artist and did all his paintings with a paint brush in his mouth. I met him in his home and as he showed me around I was even more amazed by him. He used his feet for everything that his hands would have done. He really didn't even seem to not have hands because of the talent of his feet. I remember thinking what a wonder our bodies are. We adapt to things and our bodies become more than what they seem to be. There is another person named Nick Vujicic who is an inspirational speaker. He has no hands and no feet. If you haven't heard of him you should look him up. I have been watching some of his you tube videos because he teaches how to live life with a good attitude and he is wonderful. See this video http://www.youtube.com/watch?v=XjoN0cF6FiQ.

    Lamp is going to have a wonderful and full life. She is going to be more than you even think she will. I think her trials in life are going to make her a very special person. I hope the best for her and you. Sorry for such a long comment from an unknown person. I just hope you know Lamp and your family are an inspiration to me.

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  3. lamp is so sweet. I can't wait to hold her and snuggle her. I'm so sorry you have to think about those things for your baby. It really stinks. we love you guys.

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  4. I love the look on her face, almost as if she's in deep thought, just like her mother. She is beautiful...especially without her hands. Every child I've known has been born with their hands, so to see a child without, is to see her true beauty, her true identity.....a daughter of God. I hope you understand what I'm trying to say. Thanks for sharing her with us all because I know this has got to be tough.

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  5. I think you put it perfectly Miggy. It is what it is...it is going to be tough and there are a lot of things you wouldn't have thought of that you'll have to deal with. But, I think Lamp will surprise you. I think she'll be 100 times more resilient that you or I would be. I think she isn't going to know different and, like "I am Laura" said, she is going to be a very special person. I know the waiting and wondering is hard, and you have every right to do that. XOXO

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  6. Tell it girl. I often feel a similar need during conversations and certain blob posts to leave off on an uplifting note. I'm afraid of being pitied or seeming ungrateful. But sometimes I'm sad and hurting or feeling scared, and it just wouldn't be honest to pretend like my attitude is always chipper. I don't think there is a more perfect way to write a post like this; honest, respectful, loving and the real truth!

    I've been so impressed with the way you've welcomed and adjusted to baby lamp and her trials. It hasn't ever for a second seemed insincere. You're one of the best moms I know.

    Btw that picture is freaking adorbs!!!

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  7. I've said it before, and I'll say it again: you are such a LOVELY person (especially your spirit). Your family is SO blessed to have you!

    (I seriously debated whether or not to comment...'cause I do it too much. I couldn't help myself though. You and B are too special to not say anything. The world TRULY is a better place because of you two fabulous folks!)

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  8. I always get inspired when I read your posts. You are just so strong and yet you are very truthful.
    Love ya girl. Lamp is one lucky girl.

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  10. Hi, you don't know me (sorry) ;). I'm an old college friend of Chelsea Mahuika.

    I actually left A NOVEL in the comment right before this one...the longest I've ever left anyone, but I figured it was too much from someone you don't know. So here's my mini novel:

    I wanted to answer a question (and I went through all your comments to make sure it wasn't being repeated), you had about sleep training. Real quick(ish):

    I combine Babywise, and Healthy Baby with my kids. In the very first chapter, in an obscure paragraph, they tell you a very important thing (weird they don't make a bigger deal out of it), you CAN start sleep training your baby at ONE WEEK old.

    The first week you survive, and then you start with the schedule: wake, feed, play/keep awake, nap. That's when I pitch-in some Healthy Baby: don't let them be awake too long, but it sounds like you have all that down (including the soothing).

    The other thing: letting them cry it out. It's also in Healthy that it's OK for them to cry 10-15 minutes when you first lay them down even when they're quite little. (I wish I had page numbers, but I've given my books to friends who are using them right now).

    So with each (I have 3 kids and one on the way) I've read Babywise straight through again, and then I read the age appropriate section (in the middle to end) of Healthy Baby to pschye myself up when we have to do something hard, like let them cry for a bit.

    (BTW My babies are early and have health problems, not to mention the 6 week peak doesn't start until 6 weeks after their DUE DATE...months of sleep limbo...I also have anxiety problems so I can relate...please don't feel that you're lacking some inner strength. We're wired the way we are for a reason, and God can make anything a strength...this I KNOW)

    My oldest I did nothing, he was up every 1.5 hours for 4 months, didn't sleep through the night until 4 years old. My girls have been sleeping through the night since 5-6 months...including the time before their due date.

    You obviously love sweet (and GORGEOUS) baby Lamp very much. You must be an amazing person to have been called to be her mother.

    I have SO much more I wish I could say...I guess I'll just wish you luck. ;)

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  11. Beautifully written and gorgeous baby. Honestly, that face could move mountains.

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  12. I can relate to feeling like your daughter's life and body should have some recognition, just as much as any other child.

    I had a similar moment to your daughter's lesson in nursery. Once when Jake was in Sunbeams, he was having a hard time wanting to stay in Primary. I couldn't understand it because he had always loved to go. So I joined him to see if I could figure out what it was that was bothering him. The first song that they sang was one of those "get your wiggles out" songs...like "Head, Shoulders, Knees and Toes" or "Once There Was a Snowman"...something like that.

    It was then that it hit me. He would never be able to stand up with his buddies, and touch his head, shoulders, knees and toes. Something so simple, and yet SO taken for granted by so many, was something my son would never, ever do.

    I immediately began to cry, and had to leave the room for a few minutes. My first instinct as a mother was to march up to that music leader after class and ask her to never sing that song again...because think of how it makes Jake feel.

    But then, as I looked at him, trying his hardest to do the motions in a way that worked for him, (all in his own 3 year old way) I realized that he will always struggle with these kinds of things, but he will also ALWAYS find a way to do it. Even if it's a bit different. He has been and continues to be one of my greatest teachers.

    Your beautiful Lamp is going to learn to do all of these things. I know she will. It may not be how you or I are able to do them, but she will figure out a way that works for her. And she will inspire everyone that she meets.

    And because she has you, a mother who will celebrate every step of her journey and love her simply because she's yours....she will fly!

    As if this comment wasn't long enough...but I just have to say how glad I am that Chelsea linked to you a few months ago. I think that sweet little Lamp will have much to teach me. Thank you for sharing her story.

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  14. She is so lucky to have you.

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  15. Little Lamp,

    I love you. You have made me cry. You are reminding me of all things good and beautiful and real in life that get fuzzy from all the dirt and grime of everyday living. Thank you.

    Your mommy and daddy are amazing and YOU are beautiful. You have a difficult but beautiful, wonderful life ahead of you.

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  16. I wasn't going to leave a comment, but then I zoomed up to leave your blog and saw the picture one more time and just thought to myself, "Man, that baby has some good kissing cheeks!" I love round, soft baby kissing cheeks. She's really beautiful, and you write beautifully. I'm sorry that her life is going to be so hard without hands. Good thing she has such a great family.

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  17. Vicky farrow12:18 AM

    Hi. I found your blog from Grandma Honeyand couldn't not leave a comment. My daughter who is 9 has a good friend who has one normal arm and hand and the other side is a stump just above her elbow. She was born this way it is not from an accident. Now this girl astounds me, she has adapted and can tie her shoe laces, open food packets, she recently came indoor rock climbing with us and was up the top before the rest of us. I understand that Lamp has both limbs involved but I just had to let you know that anything is possible.

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  18. KrystaAlexandria8:46 AM

    I did not read through more then the first paragraph yet, but was wondering if you were given a name for your LO's condition. My son has radial club hand of his left hand. While my son's condition isn't severe, what you have described sounds like more intracate forms of radial club hand.

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  19. Lamp is unsinkable, just like her mama.
    I'm sorry you both have to go through something so hard to find out how strong you are. I pray that you all will be strengthened to bear it and that it will never feel TOO hard.

    so much love,

    erin

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  20. She is completely beautiful by the way!!! Those cheeks!!!!! I want to kiss them!!!

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  21. A friend shared this post in Google Reader. I don't have much to offer other than to say your daughter is beautiful and precious, and I wish you both the best of luck.

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  22. I've never seen your blog before, but was moved by your thoughts penned so beautifully about Lamps. I actually know a mother & her 2 children all born with a similar condition. If it helps, the mother has done amazing things in her life. Her adult son has just completed his mission & their daughter who had the worst of that condition, not only served a mission but got sealed last month in the Temple.

    Disappointment & anxiety for these new set of challenges is hard & as in all parenting come many tears. The good news is that we live in a time where the resources available to us are tremendous & the people you meet along the way are "angels" in your midst. The power of the Atonement is so infinite and real when you allow it to manifest itself through your faith & reliance on Him. May you always know that there are wonderful & plentiful blessings in store for you, Lamps & your family. One day at a time. Line upon line, precept upon precept. Here a little, there a little. Through small things GREAT things will happen. Trust me on that.

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  23. I understand what you are feeling. My daughter was born with shorter arms. Her left is 4 inches and her right is 12. She has four fingers on each hand. Dressing her was an entersting challenge. But not impossible. It has been a joy to watch her grow and learn how to do things her own way. (Its also been a tug on a mom's heart as well) However as I look over the years we have had more joy than sorrow. This past June she was beautiful bride! Hang in there!

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  24. What a beautiful post expressing the complex emotions you have. I stumbled on your blog today and I'm glad I did. You have a beautiful little baby.

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  25. There are so many things I take for granted in life! This post about the blessing of hands made me cry because I haven't been outwardly grateful enough for my hands! What an extrodinarily difficult thing to not have hands.

    The other day I was at Babies R US in St. Louis and the cashier girl (about mid-twenties) was missing most of her left arm. She only had a stump and one or two short fingers that ended just below the elbow, I think. I couldn't help thinking of Baby Lamp when I saw her, and I was impressed that this cashier was able to function so WELL with the arm she was given. She was able to pick things up with that little stump of a hand and she just went about her business like anyone else. I found it very uplifting to see that she could function so well. And I couldn't help but think, well, if she never knew any different, then it probably never seemed strange to her!

    Just a thought.

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  26. Hello. You do not know me, but I came across your blog through a post by Molly Jackson. I am so deeply touched by your story and the love you have for your little ones. I just wanted to pass another blog along to you of a family that was in my old ward in Fairborn, OH (you are in Cincinnati, right?). They have biological triplets and have since adopted 4 special needs children and are in the process of adopting 2 or 3 more special needs children (all internationally). One of the boys has limb differences (2 very short legs) and is now walking with prosthetics and special shoes, another of the boys has arthogryposis and is unable to use his limbs like most of us (he uses his mouth for drawing) though he is slowly learning to put weight on his legs and walk. They just brought home a daughter from Bulugaria who has limb differences in at least one of her legs. I am not sure on the others they are adopting, but I thought you might be interested in their story:
    http://fromthetrenchesofadoption.blogspot.com/
    The mom, Valerie, is incredible! She home schools all of these kids and was voted the Dayton Mother of the Year at I believe 24 years old. It's amazing. And I know she would love to talk to you about your sweet girl.
    Once again, thanks for sharing your story!

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  27. Anonymous6:27 PM

    Hi, I was looking up info. on microgastria and came upon your blog. My daughter will be 21 in April and she has microgastria. She has had eight surgeries and doing good.She had the Hunt-Lawrence pouch when she was seven months old. Only one arm is very short( the right ) and no thumb and curved fingers. She has had alot of othere things wrong too ( her eyes, back, liver, lungs ect. )With everything wrong with her, she has alot right with her too. She has been a blessing, I thank God every day for her. Reading your blog, I have had and still have sometimes the same thoughts and feelings you do. Your doing a great job with Lamb and I know she will do good things with her life. My daughter has done better than even the doctors thought. At the time of her birth the had only been 22 recorded cases world wide. Scary times. I think we are given these children for a special reason, I don't know what, but,there's nothing special about me, but I am a better person BECAUSE of my daughter. She was raised knowing that she can do ANYTHING anyone else can,and she does and more. I know from my own daughter, Lamb will do just great, some because of her, and some because of who is raising her. She has a really strong mom and dad.

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  28. Anonymous11:54 PM

    hi, a friend of mine sent me your blog today. I know this was written two years ago, but i relate to what you say. My son was born four months ago with TARS. He has a rare genetic blood disorder that he doesn't create platelets, and the radius bone in your arm doesn't form. Well, in my sons case, he didn't get any arms. He does have hands, but we don't know how functional they'll be. but i've ended my days with the same thoughts on his arms. I try to be positive, but it can be hard some days. In our case we found out on the day he was born about his limbs. I've only read a few of your posts, but I would give anything for them to have noticed it on an ultrasound. Nothing can really prepare you for something llike this, but like you we take it day by day. I can't wait to read on about little Lamp. I know she's probably surprised you like my little boy has already surprised us tenfold.

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    Replies
    1. Hi Anon. Oh wow...that is a lot to handle. And I'm very grateful we did have the preparation of an ultrasound...I can't imagine....

      I'm glad things are looking up. If you ever want to talk or need more support please feel free to email me and we can chat, even talk via phone. thislittlemiggy@gmail.com

      Hugs!

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