Friday, January 04, 2013

Love Conquers All






The scene was this:  A Friday, late afternoon trip to Hobby Lobby for a quick return and purchase.  My shopping experience didn't take long, but the line took forever.  For. ev. rrrrrr

It was one of those deceptively short lines where there's only 2 people in front of you.  But those two people.... sure know how to take their sweet time with a bunch of returns and stuff the cashier has to call for help and back-up  and before you know it you've been standing still for 20 minutes.  Yes, 20 minutes.  The sad thing is, the line next to us was just as packed and just as slow.  There was no escaping.   I had Lamp with me and as she had already wreaked havoc on the floor with the candy on the bottom isle I seated her in the back of the shopping cart... a new experience for her.  Being the small fry she is, she is always sitting up front, buckled in.  She sat in the back grinning from ear to ear.  She would scoot to the front of the cart, then scoot to the back....then wiggle side to side and watch the cart wiggle with her.  Completely entertained.

After a while the lady behind us noticed her and said, Well she's as happy as can be... just entertaining her self.  Like most 2 year olds Lamps ears perked up at the attention and she started showing off in her usual Lamp ways.  Oh my?  How old is she?  She can talk so well!  And on and on.

When it came our turn with the cashier we had our own not-quick returns and purchases--oh yes, we were those people too.  As I continued to wait for price checks and store managers I thought I would give everyone a real treat.   I turned to Lamp and said, Would you like to sing a song for everyone?

Yes.

OK.  What song would you like to sing?

Wheels on the bus.

OK.  Go ahead.

At the top of her lungs (like you've seen her before) she sang the wheels on the bus to two crowded lines at Hobby Lobby.  You should have seen it.  In fact, you should have felt it.  Frustrated sighs gave way to giant smiles and laughs.  People in both lines were laughing and smiling and pointing at Lamp (in a good way).  She brought joy to a group of weary shoppers, her mama included.  She continued singing until we were all checked out and ready to go.  By the time we finished checking out the mood had shifted dramatically.  As I picked her up to leave she started shouting good-bye! while waving wildly with her sweet little arm.  Good bye, good bye, good bye!  Over and over again, loudly and with joy.  And many, many shoppers in those two never-ending lines waved back with smiles on their faces and good-byes ringing back just as loudly.

I laughed, snuggled my daughter and said, And that's why I love taking you shopping.

******

And then my mind drifted back to a dark day that seems forever ago.  A day when a doctor looked at our baby though an ultrasound machine and told us the difficult news of her very unique anatomy.  Misshapen, deformed, bones missing altogether.  Those words left us reeling and in an instant, a happy future was erased.

What I know now and what I want others to know is that an ultrasound machine while great at predicting genders and certain medical issues, is horribly, woefully, unspeakably inadequate at predicting futures.

There is no machine, no technology so advanced that could have ever predicted how amazingly joyous our lives would be with Lamp in it.  She is a wonderful, bright, happy ray of sunshine to all those who know her.  That probably sounds a lot like your kid right?  Lamp is a person first.  While her body is a integral part of who she is and will certainly shape her earthly experience,  I think this brightness and joy has little to do with her limbs.  She is who she is, and there's not a machine in the world that could have showed us that.  This goes for typical, healthy children as well.  And life in general.

Through FB groups and emails sent to me, I've met some mothers and heard their stories about learning that they are carrying a child who will be missing a limb (or  2 or 3...) or face other limb-different issues.   Most of these moms are coming to terms with this news, searching for answers and seeking connections to others who know.  I remember those times, I was those moms.  However, I've also heard stories of well meaning friends and family members who advise these mothers to terminate their pregnancy based on nothing more than a couple of ultrasounds.  What I can't wrap my mind around is how can this same world that is so open-minded and accepting of differences, be the same world that advises people to dispose of babies, of human beings, because they're different in the first place?

To any friends and family of someone who has recently received some difficult news during an ultrasound, please be supportive and loving and most of all please open your heart.  You would never think of walking up to the mother of a child with special needs and telling them, You know...you really should have aborted that one.  So please don't ever consider saying that to a mother expecting a child with special needs.  Forget what you think you know, and instead prepare your mind and your heart to become expanded and enlightened.

To any mother who may have recently received some difficult news at an ultrasound, please know that that's just one small piece of the whole picture.  You will certainly experience grief, as you should, but leave room for joy.  It will be there, I promise.  In very unexpected ways.  Now I understand that there are families with very trying and difficult special needs journeys, but I haven't met one who would change a thing.  That is why I do these spotlights, because through it all the love is there.  Always.  

And you know what they say about love.
It conquers...what was that again?
Oh yeah, All.


I hope to have our spotlight series back in full swing again next week!  Thanks for all the love and support...and please if you or someone you know would like to be a part of the series, email me or have them email me, directly at thislittlemiggy at gmail dot com.  

57 comments:

  1. you are a treasure. thank you for sharing your Lamp with the world like this. your blog was such a comfort to me when I, too, was that mama with the "bad" news, when I heard those same words ("deformed, missing") after an ultrasound. honestly, Ulysses has burst open my world in a wonderful way. I feel blessed that he's given me the opportunity to challenge my ideas about things and also to get to know some great people. . . like you! you're the real deal, Miggy, and I'm thankful for your honest and thoughtful posts.

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    1. April-thank you. I feel the same way about you...so glad to know there are kindred spirits on this journey. Can't wait to meet in person one of these days.

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  2. Beautiful post Miggy! I wish everyone could read it. Ten months ago, at age 45, I gave birth to my 5th child. She is 14 years younger than her closest sibling and has two little nieces who are older than her. So yes, I am a grandma. My doctor recommended amnio and extensive pre-natal testing, but I chose to have only the standard exams and tests. Why? Not because I was afraid of "bad" news, but because I didn't want to listen to negativity from others. I knew that we loved her and wanted her regardless of any physical or mental differences. I read your blog and the special needs spotlights throughout my pregnancy. Although my daughter was not born with any special needs, I was well-prepared for that possibility. Thank you for your beautiful blog! By the way, I found you through Kym who is my sister-in-law's sister.

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    1. Melanie--that's amazing! And yes, people in the medical field can sometimes be the worst offenders--I can understand why you wouldn't even go there. Luckily there are also a lot of great Dr's and nurses. Our Dr. was great, our nurses were great and I'm glad we had that experience. I know that's not always the case. (And huzzah for connections--though we've only met once, I love Kym!)

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  3. Anonymous6:08 AM

    My grandson has Down syndrome and had to have open heart surgery at six weeks old. Then at eighteen months he was diagnosed with leukemia. My daughter says if there is one thing she wishes she would have known at the time is that "it will all be all right." When you are going through all the tough news and scarey diagnosis it is very difficult to see the light at the end of the tunnel. We have a happy, wonderful and oh so loved nine year old that we can't imagine life without. As his grandmother my advice is to take one day at a time and enjoy every single second of every single day and know that it will all be all right! (Archie's NaNa)

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    1. Thank you for your perspective. Beautiful!

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  4. Thank you for such a wonderful post!! This post is exactly how I feel...my son was born with a bilateral cleft lip, and I will never forget watching that ultrasound and hearing the diagnosis. I spent the following months researching and reading everything I could about it, trying to find any scrap of information to give me hope that this wasn't so bad. I read many blogs and articles where people said over and over that it really is NOT a big deal, but at the time that seemed incomprehensible. Now, the joy I have in my son is incomprehensible!! It's true that it is not a big deal but to someone in that situation it is hard to make them see that truth. :) Thanks again for putting these thoughts into such well-written words!!

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    1. Yes--an ultrasound with bad news IS tough. No two ways about it. I wanted to make sure any mama reading this does not think I'm blowing it off as no biggie...but yes, in the end we love then as much as any mama's love their littles and that's the key. :) Thanks for your thoughts.

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  5. I believe in this deeply! it turned out like nothing the thousand and one ultrasounds indicated to us. And the divorce rate they included. I think people even ourselves underestimate our ability rise. Lamp puts you in the sun so to speak, you get alot of attention, good and bad, and I am sure the comment I could never do that...Well they have no idea, you now do however! Loving your rockstar family from afar. good stuff Gueck.
    autumn

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    1. Love you too lady! Thanks for continued love and support from afar!
      Hugs to your family as well...would be so fun to get our broods together someday.

      ps--aren't you guys leaving the deep south soon? where to next?

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    2. Back to New York City for three months, then off to Australia for a year..basicly we are running away from responsibility. And towards a life long dream.

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  6. Lamp is going to change the world some day! I wish I was there that day. What a doll she is.

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    1. Thanks Terese. Much love to you!

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  7. Beautiful post. She is sure a cutey.

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    1. Thanks Gwen! (One of my fav. names, btw...) :)

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  8. Perfect! And I've just recently been put in touch with a mom who, among other things, was told that her precious boy is missing bones in his arms. Can't wait to send her this link.

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    1. Rebekah--If your friend is up for it, please send her my email. I've talked with many moms in her situation over the past couple years and was lucky enough to have some moms to talk to myself when I was prego with Lamp. We can email, talk on the phone, etc... so just have her email me at thislittlemiggy @ gmail dot com.

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  9. pallavi10:36 AM

    I am a silent reader to your blog and I love it..I wait for every single post of yours.

    I come from a country where babies r aborted just because it is a girl...I am so proud to see people like you and I just feel all hope is not lost...You are an amazing mom and I love how much Joy you have in your family in spite of the challenges...You are an inspiration to everyone..

    I have a 9 month old daughter and first three months were hard whenever she used to fuss...may be due to bonding issues..dont take it in the wrong way but after reading this post I feel if you can do it, I can do it...I gotta stop complaining about little things in life..everything in life is just how you look at it...and as you said when there is love, everything will be fine...
    P.S : I agree with you...both your kids have extra awesomeness.

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    1. Thank you pallavi. It makes me sick to my stomach to hear about babies being aborted for any reason, but especially for things like gender, disability. I didn't want this post to turn political, because it was about supporting mothers of children with disabilities, but frankly abortion is not even about politics for me. Aside from issues of health risks to the baby/mother, or incest/rape--abortion is and will always be morally wrong. And especially so when it's a baby that a family wanted, but didn't like the gender, etc. Thanks for saying what you said, I for one will never back down on that position myself, no matter how politically incorrect it may seem.

      Also-a fussy newborn IS hard. Don't beat yourself up for having a hard time. Your hard is not my hard, and vice versa. Find the joy, but acknowledge the difficult too. :)

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    2. pallavi11:08 AM

      Miggy,

      Sorry, I didn't mean to sound political with my comment..anyway, I totally agree..abortion is not about politics..
      Your writing is beautiful and I wish I could have been more clear ..

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  10. Amen Sister...Beautifully Said...It is so true. Our sweet little children have such powerful spirits for those who are willing to look beyond the physical.

    A little story from my friend, about an experience she had a month ago with her son:


    "Ok I have to share my experience I had today with my FB friends..... A lady approached my son and I in the mall today and asked me if I minded her asking me some questions pointing to my son with Down Syndrome. She spoke for a few min and then asked if I felt guilty bringing him into the world when I knew he would b a drain on the limited resources. Right as I got speechless feeling like I would cry it was a little miracle the lady went on to say...... I'm just thinking of all the people around the world who won't have food tomorrow to even celebrate Thanksgiving. :) at that point I gave her a short but oh so sweet history lesson on Thanksgiving and pointed out that not everyone in the world would b celebrating and that even my son who she thinks is too stupid to live knows that. So happy thanksgiving to all those who understand what it is we r celebrating:)"

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    1. Anonymous2:29 PM

      This story made me cry! All God's children deserve life! Whether you believe in Him or not!)

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    2. OLRS--Speechless. I can't imagine how your friend must have felt. All I have to say is ignorance is a much bigger drain on society than a disability could ever be. Much love to you and her.

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  11. Such a great post, love it!

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  12. Anonymous1:44 PM

    Lamp's body is not perfect? I've never noticed......

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  13. enjoyed this post immensely- you need to read the tome "Far From the Tree" by Andrew Solomon-

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  14. What a sweet and cute little girl you have. She is a blessing. Some people can be so cruel.....I have a special needs son.......but they just don't get the joy that these sweet babies can be.

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  15. Thanks for this, I often want to shout the same message from the rooftops!!

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  16. Beautiful.
    And it comes right from your heart. Just as those could 'feel it' when Lamp sang, I could feel it when I read this today.

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  17. Lamp is a teasure, probably because she has a wonderful family who loves and accepts her for who she is. :0) Thanks for sharing

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  18. Lamp truly gives light. I wish you shopped at my Hobby Lobby. I like how you said, " What I know now and what I want others to know is that an ultrasound machine while great at predicting genders and certain medical issues, is horribly, woefully, unspeakably inadequate at predicting futures."

    A relative of mine gave birth and is raising a child conceived in rape. Abortion did not cross her mind. Every child is a blessing, and we are lucky to have such child in our family tree. No, it's not an easy road, but there is joy along the way. End of anti-abortion speech.

    You know what, many of us will lose various abilities as we age, so those naysayers should shut their mouths.

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  19. Amy it's been a long time but I am so happy I stopped by your blog. You are doing a wonderful thing, sharing your joys. I often feel that in general when someone is expecting they hear EVERY bad story or about how your life changes with children. They need to hear more of the wonderful stories, and the love. You are awesome. Keep going! xo
    Emily

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  20. Anonymous2:35 PM

    Love love love your family!!!

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  21. Above my son's bed I stenciled, "Ability is not determined by Disability" and we live by that everyday. So too, does Lamp..why..becuase life is wonderful, and full of song, and she can make everyone's day brighter just by being alive. Truly Lamp pales disability with her light.

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  22. Anonymous1:40 PM

    What a joy is she?? Surrounded by and giving so much love.

    I can't help but also remember the video that you once posted of the confident and beautiful young woman with limb differences but was living life fully and independently. What an inspiration and wonderful example of how the future can look.

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  23. Beautifully written. Love. PS I think about you often, as Aria and I are in the same stake and have been connecting. Thanks for the motherly inspiration.

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  24. Love, just love! Thank you!

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  25. When we had our bad news ultrasound we were given three options: We could terminate the pregnancy, we could provide "comfort care" after he was born and just let him die, or we could proceed with a series of three open-heart surgeries to prolong his life. Honestly, at first all three options seemed horrific to me, but it was a matter of seconds before I knew that we would, of course, fight for his life. After his first open heart surgery when he was just 4 days old I questioned that decision. Was I making him suffer just so that I could have some extra time with him? Would his quality of life be worth all of this? I have since come to realize that children have a remarkable ability to find joy. My son is the happiest baby I know! Like Lamp, he makes everyone around him smile. I agree with everything you wrote. Thank you for sharing these experiences. I sure love your girls! They really are special.

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  26. beautiful words, I so love popping in to read!

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  27. I check out your beautiful blog from time to time and have never commented! This, however, is just too wonderful not to comment on. The Hobby Lobby story has me grinning from ear to ear....what an amazing sight I bet that was! Your daughters are beautiful and are so happy!!! They must have wonderful parents!! :)

    *How many times can one say beautiful and wonderful in one comment?! Lol!

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  28. I was going to write "beautiful post" but then I noticed how many others did... and I'm still going to do it. Because it really is a beautiful post!

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  29. Love love love this post. I am 33 weeks pregnant with my second and {to make a long story short} we had an ultrasound at 30 weeks that showed there may be abnormalities in our little girl's brain - a symptom of various different problems. However, a follow-up MRI showed a seemingly healthy baby and that the ultrasound measurements were very inaccurate. But those few days when we thought our little girl might be born with special needs were an interesting roller coaster of emotions. I had read your blog before and read the special needs spotlight and I have to say I think those really affected my perspective on the entire thing. I never thought "why me?" and mostly focused on how I could prepare our family to love and nurture this little girl God was giving us and help her reach her fullest potential. I felt so much love for her in those few days it was really overwhelming. I just want to say thank you for your blog and for highlighting what an amazing blessing our children are, no matter what "problems" or challenges they may come to us with. And the truth is, ALL children will present us with challenges of one sort or another, whether they can be seen by the naked eye or only by the heart. ;)

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    1. I love comments like this. I'm so glad things are looking up, but regardless I'm even happier that you were able to feel that overwhelming love for your little one no matter the circumstances. Of course it's OK and important to grieve and be sad for losses (loss of a healthy baby, loss of what you thought your future would look like, etc) but I'm glad the love came through too. Good luck to you and I hope all goes well with your sweet family.

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  30. I happened on your blog from Pinterest (for your gauze feather blanket- which is lovely by the way) And came upon this post. Your daughter is beautiful, you are inspiring. But my absolute favourite part is the point you make on how accepting we all supposedly are of differences And then turn around murdering our babies for potential abnormalities. The closest I come to experiencing this firsthand is a beautiful niece with down syndrome. And she is a shining light for so many. at just three months old, she has touched so many hearts And brought such joy to so many. my heart aches thinking of all those families who have chosen to deprive themselves of the happiness their child could have brought them if they had not chosen the "easy" way out. That is my long way of saying thank you for sharing your story, And for helping so many through difficult And confusing times. Amazing And beautiful And inspiring And a reminder of what this life is truly all about.

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  31. I was assigned to read this blog for a Writing and Rhetoric class. I saw it as busy work. Never been a big reader. But this post really touched me. I want to say thank you Miggy for sharing your beautiful stories. I used to work with autistc children years ago. Though I don't have family members with "special needs", I've experienced the blessing of experiencing moments of difficulty coupled with moments of great joy. I'm not a parent, but I hope to be someday and I'm inspired by your wonderful look on life. I hope that I can be as wonderful a parent as you seem. Thanks Miggy.

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  32. Anonymous7:28 PM

    Thanks for your insight on the inconclusive results that a machine can make. I love how you said that an ultra sound never could have predicted the joys, the sorrows, and the miracles that one experiences through trials. A machine just shows the black and white. As people, we as well sometimes only see the black and white of disabilities and we miss the "wheels on the bus" moments that happen even amidst frailties and physical weaknesses. Life isn't determined from what a machine says. Thanks for being an inspiration to the rest of us.

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  33. Anonymous9:38 PM

    Thank-you for your words Miggy. Your optimism of life is contagious and encouraging to all Mothers, not just those that have received an ultrasound similar to yours. It's a delight to hear about your adoration for your daughter; she is a God-given gift and an example to us all.

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  34. That was a beautiful story. I love kids with special needs, the have such a strong, loving aura to them and truly they know how to love regardless of what the circumstances are. All of my experiences with them have been positive. I can't imagine what it would feel like to hear that my child would be born with a disability (being single and all) but I know that there would be a reason for it. There ALWAYS is. Thanks for the post!

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  35. Anonymous1:25 PM

    Thank you so much for your blog Miggy! It truly is an inspiration and has opened my eyes to the beauty that can be found in the world, especially the beauty that can come through what was originally expected to be a trial. Your daughter is absolutely precious! Thank you for the post!

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  36. Your blog is absolutely beautiful and inspiring. I have really enjoyed reading it. Thank you so much for sharing this. It has definitely opened up my eyes to everything (as I have commented before). Again, thank you for your optimism and encouragement!

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  37. I love reading your blog! Your posts inspire me so much especially this one. Your daughter is so precious and is blessed to have a parent like you. Thank you for sharing.

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  38. I'm really impressed by the way you can make a potentially bad or awkward situation into something funny. I have been reading through some of the spotlights and I like the question that asks if someone has had a funny experience that they would like to share. I believe our attitude (or view of life) can shape our lives and can affect us individually for the better or the worse. I'm impressed by your positive views and your care for others by creating a way for others to share their various life experiences. Thank you for your posts!

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