Today We Fight
My daughter Amelia Grace, was born on January 28, 2009 with a previously undiagnosed neural tube defect called an encephalocele. Sometime during her very early development, likely before I knew I was pregnant, something went awry and her skull malformed when the neural tube closed. The neural tube is the primitive spinal cord.
Part of her brain developed outside of her body and somehow during my pregnancy, it went undetected. Her first weeks of life were a roller coaster that I still cannot comprehend.
At three weeks of age, my eight-pound ass-kicking infant daughter went under the knife and kicked neurosurgery in the balls and showed that encephalocele who was boss. SHE was.
The full story here, here, here, here, here, here, here, and here.
My daughter lives. So many do not.
While it’s a rare birth defect, occuring in only about one in every 10,000 births, they’re not widely understood, although all women of childbearing age are recommended to take 400 micrograms of daily folic acid as it has been shown to reduce the instance of neural tube defects.
These are the numbers:
Encephaloceles are a prominent cause of spontaneous abortions before 20 weeks.
An encephalocele reduces the likelihood of a live birth to 21%.
Only half of those 21% survive.
75% of those survivors have varying degrees of mental retardation, the severity of defects higher for those who have the brain herniation on the back of the skull.
My daughter lives. My daughter who is monitored closely by every government agency you can think of and then some tests at or above average. My daughter will take her first steps any day now, the earliest of my children to walk.
In her short life, she has done more than I have in my 29 years around the sun. My Amelia has touched so many.
And that is why I am proud to be a March of Dimes Mom.
Today I stand tall with my daughter and help the March of Dimes, who also researches and raises awareness of neural tube defects, and we are doing my part to fight for babies.
And rather than sit around and gnash our teeth and feel generally bad that so many babies are born prematurely every year, I’d like to do something. I’d like share some things that we all can do.
In the comments, please share your thoughts and ideas and stories and ways to help, and I will try to compile the ways we can help into the post (I will credit you, of course). This will be turned into a page on my sidebar. Please, help us.
Join the March Of Dimes Advocacy List to email our elected officials about laws that will affect our babies.
Donate your used cell phone. They have prepaid down-loadable shipping labels, and while I won’t be sending this one:
I will be sending one.
Certainly you can donate in honor or in memory of someone.
You can start a virtual band to honor a child.
You can do as I plan to do and form a team and March for Babies. (it doesn’t appear that any teams are being started yet, as I tried to start Team Mimi last night)
Volunteer with the March of Dimes.
If you’d like to add the name of a baby who has passed to my Wall of Remembrance, please, leave me a comment or send me an email to becky@dwink.net.
For my friends who have lost babies, I send you here, to A Glow In The Woods. Please go. They can help.
Now I Lay Me Down To Sleep is a non-profit network of volunteer photographers who will come and provide a free heirloom photography session for stillborn babies. You can donate your services, your time, and your awareness.
Many NICU’s accept donations of small clothing, blankets and hats, but be sure to call ahead to make certain and check to see what their protocol is.
Vote here for my stupid blog, and if I win, the prize money will go to the March of Dimes. Blackmail your friends to do the same.
You can donate here to the Ronald McDonald house, who for no cost to the parents, will put a roof over the head of a family of a child who is in the hospital. An amazing charity. Thank you, Rachel.
Operation Smile is another great way to get involved, thank you Liz.
There are so many things we can do. Today, tomorrow and always we can fight for babies.
85 Responses to “Today We Fight”
Leave a Reply
I stand beside you in your fight.
Your Amelia sounds like a wonderful little girl, I am so glad she has beaten the odds and kicked them back to Shinola!!
Big ((Hugs)) and some straight up Gre.y Goo.se.
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Your Aunt Becky Reply:
November 17th, 2009 at 2:14 pm
Tonight, we shall toast to Mimi. My miracle Mimi. Thank you.
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I got chills reading Amelia’s story. I am 6 months pregnant and can’t imagine the strain your heart has gone through.
If there is a March of Dimes patch for other bloggers to post to their own website for donations, that would be great.
Ok, I just looked and I did not see one. Maybe that could be a suggestion for the March of Dimes. Create a patch with coding so that other websites can post it.
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Your Aunt Becky Reply:
November 17th, 2009 at 2:14 pm
That’s a great idea! I’ll snoop around and see if I can dig one up. Thank you.
This year was absolutely the most intense I’ve been through, but when all has been said and done, it’s made me a better person. And I wouldn’t change that, if that makes any sense.
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Incredible story! I’m so glad to hear about your daughter. The resiliency and strength found in children is amazing.
I don’t have my own personal story to tell, but I have a few friends that had babies with complications that resulted in many days or weeks spent in NICU. Thankfully, they all survived and thrived. I will make a donation to the March of Dimes in honor of the children I know who survived.
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Your Aunt Becky Reply:
November 17th, 2009 at 2:09 pm
Thank you so very much.
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kudos!!!
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Your Aunt Becky Reply:
November 17th, 2009 at 2:08 pm
Thank you.
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I also stand with you! Because my daughter was born early I’ve been driven to start a support group in my hospital so that no other parent will have to stand alone
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Your Aunt Becky Reply:
November 17th, 2009 at 1:54 pm
That’s a brilliant idea. Someday, I’d love to do the same thing. You’re an inspiration.
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Maybe volunteering and education? You’ve already listed so many good ways to help. I’ll be sending in a phone.
You’re so lucky- your girl is amazing.
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Your Aunt Becky Reply:
November 17th, 2009 at 1:53 pm
Thank you so much.
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I just got my post up too. Great post Aunt Becky.
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Your Aunt Becky Reply:
November 17th, 2009 at 1:53 pm
I cannot wait to read it. Thank you.
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Amelia received such a gift with you as her mommy. And your blog is not stupid. It’s amazing. Just.Like.You.
K
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Your Aunt Becky Reply:
November 17th, 2009 at 1:53 pm
I swear, I just have allergies. I HAVE SOMETHING IN MY EYE, OKAY?
thank you.
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Your are amazing Becky. I will be tweeting for votes for you today in hopes you win the money for your cause.
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Your Aunt Becky Reply:
November 17th, 2009 at 1:52 pm
Thank you for your help, my friend. Thank you.
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Something about Now I Lay Me Down to Sleep brought tears to my eyes. Amelia is darn lucky to have a strong woman like you as her mom. You’re inspiring.
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Your Aunt Becky Reply:
November 17th, 2009 at 1:50 pm
Now I Lay Me Down To Sleep is an amazing organization and they’re just…I don’t have words for it. Please, spread the word about them. I’m not sure how many people know of them, and it sounds so macabre, but it’s not, not really.
xoxo.
Thank you.
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<3
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Amelia is so lucky to have a mommy like you. What a fighter she is.
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Your Aunt Becky Reply:
November 17th, 2009 at 1:49 pm
I am lucky to have a daughter who has taught me what I am made of and has given the world so much already. I am the lucky one. Thank you.
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I posted about this over on my blog too.
Related to the research MoD does, I would suggest people give to the Ronald McDonald House. It provides a home away from home for parents near the hospitals, so they can spend every waking minute with their babies. They were a blessing when I spent 2 weeks with Gavin in the NICU, at a hospital over 3 hours from home. And they don’t charge a dime for it.
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Your Aunt Becky Reply:
November 17th, 2009 at 1:36 pm
EXCELLENT idea, Rachel. Thank you. I will add it to the list. And thanks for your new URL. I missed you!
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I have my post up as well but I didn’t even think to add the specifics of things to do – you did. Thank you.
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Your Aunt Becky Reply:
November 17th, 2009 at 1:48 pm
I’ll be by later to visit you. Thank you for turning me onto this idea. Without you, I wouldn’t have known.
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The more we get people talking and fighting together, the more we stand a chance of not only kicking some ass but of letting those who are in the trenches know that they are not fighting alone.
Keep beating the shit out of the odds Amelia, the world needs you:)
xxoo
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Your Aunt Becky Reply:
November 17th, 2009 at 1:48 pm
None of us are alone. I know we can do some good, especially if we band together, like we’re doing.
Mimi will continue to kick ass and take names. There’s nothing that kid can’t do. I love that in a baby.
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I’ll have to vote from home.
I love a good list of ways to do good!
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Your Aunt Becky Reply:
November 17th, 2009 at 1:47 pm
What’s even better is they’re not all “GIVE ME MONEY.” Because those I tend to tune out because right now? Everyone needs money. Christmas is coming, yo.
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Thank you for linking those. Although I had gathered the jist of the story from reading you, that was very moving reading the entire story. You are one brave soul and Amelia is one lucky girl!
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Your Aunt Becky Reply:
November 17th, 2009 at 1:46 pm
Thank you. And you deserve a cookie dipped in bourbon for reading it all.
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I freak out when my kid gets the sniffles. I cannot imagine having a seriously ill baby. It breaks my heart to think about what people go through.
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Your Aunt Becky Reply:
November 17th, 2009 at 1:43 pm
I try not to think too much about the bad stuff for too long. Instead, I prefer to focus on doing. Otherwise, I might end up hiding under my bed with the dust bunnies and my kids. I think they’d have pretty serious issues then. I mean, more than normal.
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Thank you – for sharing your heart and for sharing ways everyone can get involved and help.
Thank you.
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Your Aunt Becky Reply:
November 17th, 2009 at 1:42 pm
I cannot help but feel that this was the reason that my daughter was born with her defect, that this was my purpose. I intend to use my voice. I know you use yours. Thank you for using yours, too.
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My little man was born at 32 weeks, just 3lbs 5 oz. That was the hardest time of my life. He also is thriving. I made a virtual bracelet in his honor and we are asking all friends and family members to donate in lieu of gifts for christmas. What a blessing we have in all our little ones.
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Your Aunt Becky Reply:
November 17th, 2009 at 1:41 pm
Our children, here and in the stars, remind us of what is important. I’m so glad that your son is doing well. The virtual bracelet is a great idea and a wonderful way to donate in lieu of presents.
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Becky, you are awsome. It’s really good to know your daughter is doing so well. Thanks so much for this post and for lining up all the ways people can help. If we all work together, we CAN make a difference.
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Your Aunt Becky Reply:
November 17th, 2009 at 1:41 pm
We can and we will make a difference. Together, we will be the change.
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I am so happy to read your little Amelia is such a fighter! I know from experience that neurosurgery is a scary word, but pediatric neurosurgery …. wow.
Hugs to all of you!
JS @ http://motherlawyercrazywoman.blogspot.com/
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I support you. Today I did not blog because I just didn’t know what to say; I feel too ignorant. Although I’ve known plenty of preemies, I (being somewhat thick-headed) didn’t realize what a serious issue it was until you blogged about it and your daughter’s story. I am very, very glad that you brought it to my attention and I’m grateful for the links today, too. This is something I want to know more about. My state scored an “F.”
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You are so awesome. Thank you.
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I posted my Fight for Preemies badge, in honor of a good friend’s twin girls born 14 weeks early. Thankfully, they are doing well. That others might share in that joy is why we write today.
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Your Aunt Becky Reply:
November 17th, 2009 at 9:11 pm
Beautiful. Just beautiful.
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Good job, Becky. Great cause. Love to you and your miracle daughter.
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Your Aunt Becky Reply:
November 17th, 2009 at 9:05 pm
Thank you very much. My daughter, she is a miracle. We’re all miracles, really, aren’t we?
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Lovely post.
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Your Aunt Becky Reply:
November 17th, 2009 at 9:05 pm
She’s a lovely girl, my Mimi. Thank you.
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I’m trying to vote but I’m too stupid to remember my info. I’ll keep after it.
One of the most effective March of Dimes campaigns I ever experienced was sending a preemie diaper with an invitation to an event. Just the image of that size was overwhelming. Perhaps someone, (unfortunately), has one that would create a stunning photograph to further the cause?
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Your Aunt Becky Reply:
November 17th, 2009 at 9:04 pm
I cannot remember any login information ever. Period. I’m not bright.
That’s a great idea. I’ll see if I can dig up that picture. I bet I can. Thanks, yo.
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My son was born at 28 weeks, weighing in at 2lbs, 5oz. He spent 6.5 weeks in the NICU and was sent home at 3lbs, 12oz. He is now almost 12 and a straight A student.
I still have one preemie diaper. People don’t realize how seriously small these babies are until they hold that diaper in their hands.
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Your Aunt Becky Reply:
November 17th, 2009 at 9:03 pm
Isn’t that what really drives it home? Seeing how small they were?
So glad that your son is a success story. Just so powerful to hear all the stories.
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Congratulations March of Dimes mom. Amelia is a miracle and a beautiful child. I just made a MD donation in another child’s name,but it was for Amelia and all the babies that they are working to help.
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Your Aunt Becky Reply:
November 17th, 2009 at 9:02 pm
Thank you. Amelia will do much, I think. She already has.
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Here’s to Amelia.
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Your Aunt Becky Reply:
November 17th, 2009 at 9:02 pm
To Amelia.
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Amelia kicks butt
So do all our little fighters- it’s amazing to see them take on the world and literally win at life from such a very early age.
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Your Aunt Becky Reply:
November 17th, 2009 at 9:02 pm
Makes you wonder what they’re going to do with the rest of their lives.
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Just tonight, when I opened my pantry door and sighed again at the sight of three old cell phones sitting there, taking up space, I thought “I wish I knew what to do with those dang things!”
Now I do. Thanks!
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Your Aunt Becky Reply:
November 17th, 2009 at 9:01 pm
I’ve been trying to figure out what to do with mine, too! Not the blingy one, because I think they’d shoot me if I sent that shit in.
But there you go!
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LOVE the MoD! They are so wonderful.
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I am so glad that Amelia was one of the lucky ones.
My old cell phone will be on its way shortly!
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Found you via Submom at The Absence of Alternatives. Congratulations to you and your Amelia, and thank you for sharing your story. I work in early intervention (kids with special needs, aged birth-5), so a good number of former preemies are on my caseload, and March of Dimes and Ronald McDonald House have helped many of our families. On behalf of them, thank you.
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Thank god you have found a way for me to get rid of these cell phones besides letting my babies eat them! I posted for my preemie daughter today, here: http://gas-food-lodging.blogspot.com/2009/11/blog-for-preemie-my-preemie.html
Your Mimi rocks!
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March of Dimes does slightly different things in Canada (no Fight for Preemies, no marches), but I posted for my preemie yesterday anyway: http://mindyourknitting.wordpress.com/2009/11/17/use-your-words/.
We donated her preemie clothing to our NICU, and on her first birthday we made up 20 parent care kits(one for each bed of the NICU, containing things like toiletries, pen & paper, disposable camera, etc.)and donated them in honour of our daughter and Maddie Spohr: http://mindyourknitting.wordpress.com/2009/10/12/giving-thanks/.
Talking about our experiences with preemies, or children who have birth defects or medical challenges so early in life, goes a long way, I think. Our friends and family were shocked by how small our daughter was (they couldn’t get over the size of her clothes and preemie diapers), and I kept thinking, if you only knew, because there were micropreemies in the NICU that made Abigail look like a Sumo baby. It’s so hard to know what to do to help – but because I’ve made a point of STILL talking about our experiences, I have had offers from people to help with the parent care kits next year. Many people comment that they simply didn’t think about the babies and families in the NICUs of our regular hospitals (we have a major children’s hospital in our city that tends to get the most donations/press/attention – and honestly before my daughter landed there I didn’t think much about NICUs either), so I’m glad to have drawn some attention their way.
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Your Aunt Becky Reply:
November 19th, 2009 at 1:07 pm
That’s so true. The major hospitals get all of the attention. The NICU where Mimi was was an extension of a major children’s hospital, but it was teeny and got none of the glory. And the hospital by my house has an even smaller NICU which I’m sure no one even imagines has any small babies. Very good call. Very good call.
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This is one more reason why I love you.
My nephew was born 18 years ago with a severe cleft palate and cleft lip birth defect. He has had nine major surgeries on his mouth, sinuses and face, to include bone grafts and steel tooth implants — in addition to eleven “minor” follow-up surgeries.
He just got a Letter of Assurance from West Point — just to show you how hard HE kicks ass.
OPERATION SMILE is another great way to make a difference.
XOXO –
Liz @ twentyfirstcenturyhousewife.blogspot.com
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Your Aunt Becky Reply:
November 19th, 2009 at 1:04 pm
Now THAT is kick ass. Rock ON! Your suggestion was added. Thank you.
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You’re a good egg. We cook dinners regularly and breakfasts occasionally at our Ronald McDonald House. We’re trying to start an annual concert series/fundraiser for them, too. We play volleyball and walk for Babies to raise money. We try to do stuff. But whenever we meet the kids we “helping” it never, NEVER feels like enough. Never. Appreciate the heads up on the cell phone thing. We didn’t know about that and have about 3 generations of phones each lying around.
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Your Aunt Becky Reply:
November 19th, 2009 at 12:48 pm
I’ve been trying to figure out what to do with mine too. Kind of excited to do something with mine too. NOW I need to do something with my old PDA that has no power cord.
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I’m all for healthy babies! Shipped my old phone off today!
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Your Aunt Becky Reply:
November 19th, 2009 at 11:42 am
I have to ship mine off next week! Yay for healthy babies!
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Thank you, Becky. You and Mimi are an inspiration. xoxoxo
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Your Aunt Becky Reply:
November 19th, 2009 at 11:37 am
Thank you very much. Mimi is my inspiration.
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mumma boo Reply:
November 20th, 2009 at 8:30 am
Easy to see why.
Now please go smooch those inspiring cheeks for me. Thank you!!
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Your Aunt Becky Reply:
November 22nd, 2009 at 8:48 pm
nom nom nom nom
SMOOTCHED!
Going to get new cell phones tomorrow.
I’m right behind you . . . all the way.
Here is Isaac’s story: http://mylesstraveledroad.blogspot.com/
His mother is lovely . . . and her pain is still so raw. Can he be added to the wall.
Off to vote . . .
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Your Aunt Becky Reply:
November 19th, 2009 at 10:45 am
I added Issac to my wall. Thank you for thinking of him. You are a wonderful friend.
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I run the IT department at a casino and I literally have hundreds of old cell phones I need to do something with. Thanks for hooking me up with a good cause.
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Your Aunt Becky Reply:
November 19th, 2009 at 8:21 pm
Now THAT is awesome!
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I’ll see what I can do besides vote for you. You’re the best!!
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I mentioned it in another post just the other day (because I am woefully behind in my blog-reading, so you’re hearing from me a lot right now), but Project Linus at http://www.projectlinus.org/ is an organization that donates security blankets to hospitalized children and their families. Not only do children get something soft and homemade, but families who lose a child have something meaningful to take with them. Anything handmade is accepted; doesn’t have to be fancy. You can do something simple, creative, and inexpensive and really help a child or grieving family. (I’m not associated with them in any way, just really touched by their mission.)
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