Wednesday, February 27, 2008

Allie's Legacy

It's been three and a half years since our little girl left us. And yet, each day, I am reminded of her presence. This afternoon when "I Can Only Imagine" came on the radio, I could nothing but sit still, turn up the sound, close my eyes, and visualize my beautiful baby. However, there are times when I forget just how far reaching her story was. I don't realize just how many people followed her story, cried for her, and fell in love with her blue eyes. And then, I meet someone in the most unlikely of places who had some Allie love.



Take last night. At the NICU holding my sweet little man and watching my best friend holding her newborn little girl in her arms. I was asking the nurse questions about life in the NICU. I am so unfamiliar with this different world. In passing, I made a comment that I didn't know about the NICU, but was familiar with the PICU having had a daughter in the PICU for a few days. With a slight tilt to her head, the nurse asked, "Did you have a website? Are you ALLIE'S mom?" Yes, that would be me.



For the next few minutes, the nurse would randomly say, "I just can't believe I'm talking to you. I can't believe you're here." She told me that she cried and prayed for Allie.



I've had many of these such encounters--at the top of the escalator of IKEA, waiting in line to meet Santa with Maggie, at fundraisers, and even on a cruise ship. Allie's legacy continues on and her story was so far reaching.

33 comments:

Tracey R. said...

I love your IKEA story.

Allie's legacy means a lot of different things for me, but I am most grateful to your little girl for bringing me my best friends. I can't imagine my life without you and the girls...and I wouldn't know any of you without Miss Allie!

Crazyredhead said...

Jenny I have been following your story from the beginning. At first I could not imagine the pain that you must be going through. Sadly I got a taste of it myself when my son Alex was stillborn in 12/05.

YOU were such an inspiration to me and without knowing it you helped me learn how to grieve and how to remember my son. You were an inspiration once again during my emotionally difficult pregnancy after my loss. I am now blessed with a 5 month old son along with my 5 and 3 year old daughters but there will always be a whole in my heart left by my first son who I never got to know.

Sarah
Derry, NH

Kristina said...

Your story was circled through so many Birth Boards on BabyCenter, PLUS so many other places that I'm sure I don't even know about. I found you on my birth board when you first got PG with Maggie. They posted a thread and everyone was so excited... My birth board for my DD was Dec 05.

Then, I was so compelled by your story I had to go back and read allll the posts from before. Thank you for keeping it up, I'm sure people are still reading through it even now.

Kelly said...

I first heard of your story on www.thenest.com I believe. Your little girl certainly did touch a lot of people all over the world.

Stephani said...

I, too, have followed your journey from right after Allie's diagnosis. I saw you, Andrew, and beautiful Maggie at Rooms To Go a few weeks ago. You were walking in as we were leaving. I wanted so badly to say something but I knew that I would tear up and I wouldn't know what to say.

There is not a day that goes by that I don't think of your family. I have had two children since Allie's passing and I KNOW that I am a better mother because of your sweet angel. I hold my son and daughter a little closer, laugh with them a little more often, and stop to enjoy them...even when they are testing me...because of Allie.

Thanks for sharing her with the world!

Amy said...

I have followed your family for quite a while too. I found your website through Katia Solomon's prayer requests. I think of Aliie often and I love reading about your Maggie.
When I was at Busch Garden's last year I was telling everyone about Allie as we were watching the giraffes' feed.

kmm0305 said...

I had followed Allie's story after reading about it on BabyCenter. In Aug '05 I had a baby with CDH and then met the Miller family online. After following AJ's story for awhile, I saw Jenn mention you. I'm still on BC and came across a thread that Tracey had posted on--now I regularly visit all your blogs and wish I lived in Texas! ;) It is amazing to see all the lives Allie has touched and all the connections she has made.

Kristyn

robinandamelia said...

Definitely far reaching!!

Duchess said...

Jenny, I have followed your story for years...I can remember nights of sitting up, waiting for the daily updates in the days when Allie was undergoing treatment.

The fact is Jenny, only a force of pure good can be as far reaching as Allie. Pure, wholesome, healing goodness. And by writing of her you have done the most generous thing imaginable - you have shared her light with the world. If there is anything this world needs, it is more light. Thank you for helping Allie to shine hers on us all.

Adrianne said...

I too have followed Allie's story from the very beginning. She is exactly one year younger than my oldest and your beautiful Maggie is the same age as my youngest and through all your trials I have followed your grace and courage and to this day every time I see a stuffed giraffe it takes me back to the hospital room and your eloquent description in the beauty in Allie in the night she passed into God's arms.

Thank you Jenny for giving us the gift of knowing Allie!

LisaWV said...

Oh, yes, Jenny! I'm sitting here weeping again for what you went through back then, and what so many of us went through with you. I cried my heart out for such a long time. I always knew that bad stuff happens to kids, that some kids get sick, sometimes even babies die... but always in the abstract. It was literally inconceivable to me that Allie could die, once I "got to know her" through your website. It just seemed impossible that she wouldn't pull through, that in the end the decision to stop treatment was the most loving, sensible, best parenting I have ever witnessed.

I've got a freakin' Ph.D, you'd think I'd be smarter than that, but no... somehow, illness and death happen to "other people" -- "out there" somewhere. I guess we all feel that way until something touches us and wakes us out of it.

I've been the team leader for Friends of Heroes here in Morgantown now ever since, have managed to raise a very modest amount of money and some awareness. It's been an interesting experience, because not one of my colleagues will walk with me. Raising money for kids with cancer is such a MOM thing, and in academia, there's nothing more uncool than a mom. Let alone a mom who can't talk about Allie and what she went through without falling into a flood of tears. I'm the world's worst fundraiser, but I sally forth and do it, badly.

I think it is astonishing what you have done with Heroes for Children. I cannot imagine how painful it must be at times, reliving what you went through, missing Allie. Allie was just six months younger than my daughter, and knowing about Allie has made every moment with Sophie that much more precious... how can it not be? Once you let the fragility of life into the picture, it's hard not to appreciate each moment. So I've had a lot more intense moments of mother-child bonding because of Allie. A lot more fearful moments of "is it just a regular fever? Should I ask them to do a CBC just in case?" moments, too, but more of the good moments than the bad.

I know that you didn't start your blog with the idea that you'd be giving this kind of gift to us all, but you did give us a gift. One of my friends just found out this week that her 8 yo daughter has liver cancer, and because of what you started... the accident of having found you in the first place... I'm now connected to resources that might prove to be useful to her. I might actually do some real good in the world, and that is only possible because of how Allie changed my life.

Life is fragile, love is eternal. Allie's legacy is amazing.

Gayle said...

Wow - it truly is amazing how much of an impact one sweet little soul can have on the world. I too always think of Allie as I was part of the BC Dec 03 boards (my son was born Dec 31, 2003).

I just keep waiting for you to right a book on your experience! ;) I'm certain it would be a bestseller!

Krissy said...

Jenny,
Allie has definately reached all corners. :) I started reading about Allie from a link I got on babycenter. I was hooked from the beginning.
Now I just can't stop coming! LOL Little Maggie is a little cutie pie and I now delight in reading all the adventures of miss maggie.
Thank you for your blog, and for sharing part of your life with all of us out here.
Krissy
From Minnesota.

lifeofadancer312 said...

Jenny--I have been reading about Allie since practically the beginning. Her story touched me and inspired me in so many ways!

I particularly remember the candle light vigil that was held in Texas a few years ago. I went to that and was just in awe of just how many people Allie truly touched.

Mom Of 3 said...

Allie also touched my loves in many many ways. I was pregnant with my second in 04 when I learned about Allie. I immediatly strted to follow your story. Became a member of Friends of Allie, now as a member of Friends of Heroes, I was the team captian for our local team last year and will be this year as well. I will also serve on the Light the Night Commitee this year. All becuase of your sweet Allie. You have definalty raised awareness. She has had a HUGE impact on my life.

Jenn M said...

Ah my dear friend, I think you will have these occurences well into your life. Allie's power is beyond words and the gift you gave us in sharing her will continue on forever.

Love,
Jenn

Kelly said...

It is truly amazing how far-reaching Allie's story has been. I started reading your blog when Allie was undergoing treatments - after reading about her on a Disney-related message board. I live in Flower Mound, but the original post had come from a woman in Boston!

My youngest son was born in August of '05, and I've enjoyed reading about Maggie as she's grown right along with Jake. (He's also completely obsessed with the Wiggles!)

Thank you for sharing your girls with us and being such an inspiration!

Fu Girls said...

Allie's Legacy has touched Washington State too. Several friends of mine are touched by your family and Allie's story. Your often in our thoughts. Thanks for sharing Your Girl with Us and Your story

Lorri said...

Jen,

I can't walk by a picture of a giraffe without stopping to remember Allie. Giraffe=Allie. Forever.

Melissa said...

You know, I followed Allies story because I was a Dec 03 mom too. And after Allie past I really wanted to become a bone marrow donor, but my husband was in law school and I really couldn't swing the money!

Well, last week I saw a flyer up at my kids preschool about a drive that had been set up for a local woman.

Jenny, I walked into that hall just holding back the tears, I really didn't think going and swipping my cheek was going to effect me sooooo much, but it did. And the whole time I just thought of your little princess. It never would have occured to me to go do that had I not "known" your family!

I agree I think you should write a book too!!

Mama of 2 P's in a Pod said...

I found the story of your sweet Angel on Pregnancy Weekly. I am grateful you are and were willing to share the story of Allie. It's nice to see Miss Maggie keeping her mommy and daddy very busy. I continue to pray for you and your family and Allie will always have a special place in our heart, she was born a day before my Piper.

snekcip said...

Jenny, Allie was the first child that I "met" that suffered childhood cancer. I can't quite remember how I learned of your site, but I DO KNOW it was HEAVENLY sent. I "WAS" one of those people that saw the "St Jude commercials on TV" and reached for the remote control thinking "if I didnt see it, it didnt exist! Well Allie CHANGED all that! That baby girl has been my biggest inspiration, I have become a BLOOD DONOR (someone who have ALWAYS had a fear of needles), and a registered BM donor! No longer do I reach for the remote, I have saw the faces, I have read their stories, I have seen the heartbreak, I have cried, rallied and learn terminology (NPD,central line,GVHD, etc, however none is sweeter than NED).

Allie has taught me that every little effort helps! Allie has simply PUT A FACE on this tragedy (CHILDHOOD CANCER), Allie has increased my knowledge of this "beast" and most importantly shown EACH of us how to do our part in our fight against this awful disease! I have saw the sad faces of children/parents who was suffering from different types of cancer, however there is nothing sweeter than the faces of this WARRIORS who despite stacking odds continue to smile and enjoy life to the fullest!

ALLISON SCOTT HAS TAUGHT ME, all that in 9mos is astounding, Allie did not live her life in vain, and in YOUR WORDS, Allie will never know hate, she came in this world loved and left this world so very loved" How many of us can claim that? NOT MANY!! Allie Scott you're my forever HERO!!

Elizabeth said...
This comment has been removed by the author.
Elizabeth said...

Allie has touched so many people lives. I know I am a different person and mother because of you and her. As I sit here holding my 4 day old daughter, Allie, named after your angle I today especially am reminded of how special a child she was. I can't wait to teach my Allie about the little girl she was named after and hope we can continue Allie's legacy.

Tracy said...

In Allie's short beautiful life, she touched so many of us. With your words we were able to learn, care, and form friendships that would have never happened. Allie lit a fire under many of us to do more and do better. Thank you for sharing her with all of us.

I believe those Allie moments will come for many, many more years.

Jill said...

Jenny,
It is funny you posted this. I have followed Allie's story since the beginning and she touched so many in her short life.

The reason why this is a funny post (not funny, haha, but funny weird) is because I am a nurse and got a renewal for AJN (American Journal of Nursing)magazine. I was just about to throw out a flyer that was included when I saw that sweet cover picture of you, Allie and one of her nurses. I remember you posting about that picture but had forgotten the power that was in it.

I am always amazed at the strength, courage and love parents of sick children have. You truly love from the depths of your soul.

I think of you and Allie so very often and am loving reading the antics of Maggie. She is about as cute as they come :)

Anyways, your family has honestly touched so many people in so many places...I am in S. California! You show such resolve and love for one another, it's wonderful! Thank you for sharing your family with the world :)

Every Day is a Party! said...

Jenny... I had been following your story from when you were pregnant. We were on BabyCenter together and both expecting at the same time. I had a lot of Allie love and even to this day, when I get frustrated with my son Lucas, I think about Allie and your heartbreak and I just hold my son closer and realize that I am blessed.

I was so glad to finally find your blog here and still look at it occasionally. Though we dont know each other at all, I just feel like you are my friend. I know thats queer. But I love watching Maggie grow up. She is absolutely beautiful and you are a wonderful mom and human being!

God Bless You!

Every Day is a Party! said...

While I am here... How is Dana doing? I miss her blog as well. How are Sam and Ethan?

Meri

lilmissladybug3 said...

Far reaching?...you said it. I too, can not see a Giraffe and not think of your sweet girl. :o)

You and your family are a sense of strength and hope to so many.

Allie lives on, Jenny.
God Bless.

littleoldladyinashoe said...

I unfortunately did not know Allie until reading about her on Julians carepage.
There isn't a day that goes by that I don't think of Allie along with Julian now.
I don't understand why this happens to children and don't think I ever will, but I will always remember 2 special angels.

I always think of my Grandma when I hear "I can only imagine" as it was her son in the band and she was so proud of that song. She knew it would be a hit even before she died and it was popular.

Now I will be thinking of Allie also every time I hear it.
Thank you for sharing your special little girl.

monicac2 said...

I first learned about Allie from a post on http://www.frisco-online.com People were being asked to pray for a local boy named Colby, who was born with HLHS, who had been careflighted to the hospital unexpectedly. Someone posted in that thread and said, "While everyone is praying, please also pray for this little girl named Allie," and provided the link to Allie's website.

The moment that I clicked the link to Allie's website, my life changed profoundly. Like others who posted above, I was aware of pediatric disease and death, but only in the most abstract and general way.

I was so incredibly moved by being allowed to share in your journey, and so inspired by your courage in the face of the unthinkable, that I was forever changed. Allie's death made me come to grips with many fears that I struggled with my entire life. Her journey with leukemia brought an awareness of childhood illness, particularly childhood cancer, to my life. I have since made donations to the Pediatric Cancer Foundation, the Leukemia and Lymphoma Society and, of course, Heroes for Children, among other charities. I have also run in HFC's 5K and walked in the Light the Night events. None of these things deserve any special recognition, but for the fact that they are a direct result of one little girl with sparkling blue eyes.

Since I live in the same general area as you, while Allie was alive I always felt that her life and her story was a precious gem that was shared amongst local residents. I will never forget the first time I was surfing the Internet and landed upon a blog written by someone half a world away and seeing Allie's picture there. I literally gasped! After that point, I began to understand the far-reaching impact that Allie had on the world!

Another incredible moment came when on the blog written by the mom to "Amazing Jacob", who lost his life to cancer. Jacob's mom is incredibly inspirational and, some time after Jacob's death announced that their family would adopt a little girl. I almost fell out of my chair when she told everyone that their little girl, whom she truly believes is an angel sent from Heaven, would be named ALLIE.

Amazing. Sorry to write such a long post, but I just want you to know that your baby girl is so loved. God bless you.

mum1228 said...

Yes, very far reaching... I still remember waiting for your updates while at work. I was at work when I read your blog after Allie past away. I remember hoping no one at work would see my crying. I also first heard about Allie from the BC Dec 03 boards. My son was born 12/28/03. You are an inspiration. Take care!!!

baby mama said...

I too followed Allie's story from her diagnosis on because of BabyCenter.

I still think about Allie occasionally when I see giraffe stuff.

Recently, my friend's daughter was diagnosed with AML (she's 8 months old) and is now living in the Children's Hospital in Milwaukee so I've been thinking about Allie a lot more.

Continued blessings to you and your family.