'19 Kids & Counting' Finale: One Duggar Moving Away
'Don't Be Tardy': Kim Wants To Have More Kids
Family Turns Grief Into Action, Fundraising for March of Dimes
Filed under: Amazing Parents, Health, Celeb News & Interviews
The Spohr family. Credit: Heather Spohr
Maddie's passing captured the emotions of thousands of parents who had followed the Spohr family adventures on their popular blog, "The Spohrs Are Multiplying," written by Heather Spohr and her husband, Mike.
Maddie and her parents had already won the hearts of many devoted readers more than 18 months prior to the toddler's death, when Heather detailed her experiences detailing her high-risk pregnancy with Maddie and the baby's subsequent premature birth.
Maddie had an extended stay in the neonatal intensive care unit (NICU), and struggled with respiratory issues during most of her short life.
Devastated by the loss of their daughter, Heather and Mike continued to write, chronicling their family's story as they journeyed through grief. Her candid and emotional writing has given a voice to families who have suffered the devastation of losing a child.
Named "Best Mommy Blogger of 2009" by thebump.com, these days the writer and photographer shares the joys of raising her second dauhgter, 14-month-old Annabel, or "Annie," and her escapades as a toddler.
But she also wants Maddie's story to live on.
Strong believers that stories heal and inspire others, Heather, 31, and Mike, 35, also command one of the top fundraising family teams for the March of Dimes, a cause very close to their hearts.
Last year, Heather spoke before more than 10,000 people at the March for Babies event in Los Angeles after her family team raised more than $100,000. The Los Angeles couple also founded "Friends of Maddie," a non-profit that supports the families of critically ill babies in NICUs.
ParentDish caught up with Heather recently as the Spohrs prepare again this year to join more than 7 million people across the country in the March of Dimes, March for Babies "Walking together for stronger, healthier babies," events.
The events will take place in more than 900 communities, with most held the weekend of April 30 to May 1, says Peggy Kelly, media relations coordinator for March of Dimes. The goal this year is to raise over $106 million to help fund research and community-based programs to help moms have stronger, healthier babies.
On Saturday, April 30, Annie will lead the Spohr team of more than 50 walkers from her stroller in the Los Angeles event. The family has set a goal of raising $10,000 this year, weeks after the April 7 second anniversary of Maddie's passing, says Spohr.
Maddie Spohr. Credit: Heather Spohr
ParentDish: Why did you create "Friends of Maddie" and get so active in supporting March of Dimes?
Heather Spohr: When Maddie passed away, our world was turned upside down. But because of the blog and the Internet, people rallied to support us in our grief. Every time Maddie got sick or was in the hospital, moms of other premature babies just like me would reach out to offer inspiration and help. One of my best friends I met on the Internet. She has twin daughters who were born 10 weeks prematurely.
I wanted to help bring this powerful word-of-mouth community to help other families who are going through what we did. Once when we were in the hospital, we got a little picture frame from the March of Dimes and I realized that I could harness the Internet community to be an advocate not just for my daughter but for all kids, and the March of Dimes and our charitable organization seemed like the best ways to do that.
PD: You've shared your high-risk pregnancies and extended neonatal intensive-care experiences, then losing a child and birthing a new baby in a very public way on the Internet. How has that transformed you?
HS: When Maddie passed, people on the Internet went out of their way to support us in our grief, with words and sharing very personal stories of how they had lost a child, too. It is very healing and continues to be. We knew we were never alone. I just kept blogging. In some ways it was selfish of me because I got more from these people then I felt I was giving. But I would have gone crazy and felt so isolated without them. You don't know what to do, but this got me through some of the really rough patches. Writing about your life and sharing can be very comforting.
PD: Lots of moms are writing blogs, what's the key to growing such an engaged following?
HS: I think I was blogging before I even knew what blogging was. In 2002, I was young and stupid and just kind of started chronicling my life and our long-distance dating relationship. It kind of lapsed after we got married, but then the whole mom blog thing started exploding on the Internet.
I started this blog when I was pregnant with Maddie because it was a rough and rocky pregnancy and I wanted to keep our friends informed. Also, I was on hospital bed rest so I blogged to fight the boredom. Maddie was born premature, so I started posting updates and also comments on the blogs I was reading to try to learn more about caring for her. It just happened and I was getting 60,000 page views a month every month writing about having a premature child. There were a lot of other moms who were going through this and the Internet gave us a way to support each other and to help each other learn more about what to do and expect.
Heather and Maddie. Credit: Heather Spohr
HS: Maddie was seriously the happiest little girl you could ever meet. Our life together was full of adventure. She completed us. I blogged about Maddie's triumphs. I hope now that I can share the joy she brought and continues to bring in a way that will validate and give back something, but also inspire other families and let them know they are not alone.
PD: What do you want your writing to say to other parents?
HS: Really it is simple. Enjoy every minute. Annabel is a lot like me, she can be very stubborn and I could get all frustrated. But I focus instead on her sweet smile because I know life can be unpredictable. There are lots of hugs and kisses in our home and telling each other how much we love each other and appreciate each other. Maddie knew we loved her and we got so much love from her.
For more information and to register for a March of Dimes walk near you go to MarchofBabies.org.
Want to get the latest ParentDish news and advice? Sign up for our newsletter!
Your<span>Voice</span>
Ask Us Anything About Parenting
Recently Asked
TheTalkies:RelatedVideos
-
Dead Linesman's Family Join Silent Protest March
The family of a soccer linesman led a silent march in his honour in the Dutch town of Almere on Sunday (December 9). Across the country, Dutch professional clubs held a minute's silence before matches and teams wore black arm bands in memory of the linesman who died following an incident during a youth competition last weekend.
-
Family: Disband FAMU Marching Band
The family of the Florida A&M University drum major who died in a hazing incident says the school should disband the marching band. Pam Champion, the mother of Robert Champion, said "You've got to clean house. That's the only thing." (May 3)
-
Chileans March for Marriage Equality
Scores of Chileans marched for LGBT (lesbian, gay, bisexual and transsexual) rights and sexual diversity in Santiago on Saturday (March 30). The march brought together families, couples and individuals in support of gay rights in the traditional, Catholic country. A common theme for marchers was gay marriage. No law is currently under consideration to allow same-sex unions in Chile.
-
F.E.A.R. 3: The Ides of March (3/15/11)
Beware! March 15 marks the Ides of March. This is the fateful day on which Julius Caesar was betrayed and murdered by his closest companions including friend Marcus Brutus who was as close as a brother to him. To commemorate the day we share with you a section of a new F.E.A.R. 3 in-game cinematic where brothers Paxton Fettel and Point Man recount their violent and hostile past. The two are haunted by themes of betrayal and family ties as the game progresses.
SitesWeLove
- Site Map
- |
- Staff
- |
- Terms of Service
- |
- Privacy Policy
- |
- Trademarks
- |
- Advertise With Us
- |
- About Our Ads
- |
- AOL Downloads
- |
- Contact Us
- |
© Copyright 2012 AOL Inc. All Rights Reserved.
Aol Family
ReaderComments (Page 2 of 3)
4-29-2011 @ 3:17PM
sisNdan said...It just breaks my heart when I see this tragedy. I lost my daughter 2 years ago. She was burned in a home explosion in a 3rd. world country. My heart brakes for everyone who lost a child !
4-29-2011 @ 9:40AM
Ms. Dixon said...She was a very beautiful little girl. And look at those eyes!! Simply beautiful! May God continue to bless the Spohr family.
Reply
4-29-2011 @ 9:42AM
bluebell said...That kids "looks funny," and likely had a chromosomal disorder. Ask any doctor
Reply
4-29-2011 @ 10:00AM
maria said...You're an ass Blubell
4-29-2011 @ 9:52AM
addy692002 said...@anna "omg" I already stated that I hated saying it like that and that I'd probably look like an @$$ for it... state the obvious much?
Also, did YOU not read her writing on her being in bed rest BEFORE the baby was born? "I started this blog when I was pregnant with Maddie because it was a rough and rocky pregnancy and I wanted to keep our friends informed. Also, I was on hospital bed rest so I blogged to fight the boredom. "
The baby was 17 months old when she died and the mother kept this blog going up to that point and after - do you *honestly* think the mother was on bedrest for more than a -year and a half-?
No offense but use your brain before harassing me for what I stated as my -opinion- which I have every right to, same as you.
Also try reading the -entire- post I made (did you not see that last part? O.o ) before whining about how "heartless" you seem to think I am. I do genuinely feel for the poor woman and her family but damn if a thought crosses my mind it crosses my mind and it makes logical sense to wonder about it.
Reply
4-29-2011 @ 2:16PM
Mom2 said...Do you realize that many mothers must go back to work when their newborns are 6 weeks old? I did and my child was sick too. The first time she went back into the hospital with respiratory problems she was only 19 days old. For the next 2 years she was in and out of the hospital. Twice when i took her for regular check-ups we had to leave straight from the pediatricians office and head off to the emrgency room where they had already been notified we were coming to admit her again. I used up all my FMLA, went into LWOP (leave without pay) status and was constantly being disciplined for being out to care for my child and having to deal with union issues as they tried to defend me for being out with my sick baby. I even had a supervisor tell me, "I know your baby is sick and all, but you're going to have to make a choice." As IF...!! I also had 3 other children at home to see to, i'e. feed, bathe, clothe, tutor, attend school functions, etc. In the midst of it all, i didn't have time to blog because back then I didn't even know what blogging was, but i did have time to write to my congressman, and the EEOC detailing my experiences because I was being discriminated against because of my childs chronic medical condition which was obviously life threatening. So why are you being so heartless when you actualy opine that a woman with a sick baby ought to do nothing other than stare at the baby for every waking second? believe me, there is not a moment, whether her eyes are open or shut, reading, writing or anything, when her minds eye is not picturing every suffering moment of that baby's life. my child is almost 11 now; she's overweight from the steroids in the meds that saved her life. But she sure is a beautiful sight to see, morning, noon and night. And you know what? I can never get the sight out of my mind when she could not breathe, when I had to leave her alone in her hosiptal bed to go home and care for her brothers, when i had to endure her agonized screams at 19 days of age as she was given a spinal tap, when I could not feed her because when something was in her mouth she couldn't breathe because her adnoids were so swollen she could not get air into her nose. please, have more understanding for mothers with tragically ill babies. Please.
4-29-2011 @ 10:08AM
Louis said...I often read a newsletter called, "The Nonprofiteer" which features a category entitled 'Charity Scandals". People report some very disheartening experiences about how the donations they gave wound up lining the pockets of the people running the organizations. This combined with the media's exposure of many charities ripping people off and paying huge salaries to its managerial staff can really make you think twice about where your donation goods and dollars are going. However, I also do not want to use this as an excuse not to give something back to society or to help those less fortunate. So, on a day to day basis I prefer volunteering my time to soup kitchens, donating food to local food shelters, contributing to volunteer emergency units, or helping people in my own community directly when I know they are hurting. When it comes to nationally known charities, I am comfortable mainly with up front causes like the St. Jude Children's Hospital, the Make-a-Wish Foundation, and sometimes the Red Cross. I NEVER entertain any donation requests that come in by phone or the Internet. Be careful! There are a lot of parasites out there who would put their own mother or child in harm's way for a buck!
Reply
4-29-2011 @ 10:29AM
BIG MAMA CORNBREAD said...WOW!....THE BABY WAS SO BEAUTIFUL...HEAVEN WANTED THEIR ANGEL BACK.
Reply
4-29-2011 @ 10:20AM
addy692002 said...@Sandi I never once said she didn't have her baby on her mind.
Yknow I really, genuinely do understand what you're saying and yes I have known people with sick children and I KNOW it's hell to go through.
What I *don't* understand, however, is why you don't seem to understand this from the OTHER end of that equation which is that it takes a LOT of maintenance to handle the upkeep of a regular blog and amass that many followers - let alone enough followers that they not only read the blog but interact with it enough to be proactive as these people are doing.
I did NOT say this was a bad thing. Especially after Maggie's death, I'm glad that this woman had something like that to put her energy into during such a hard time AND that the something she put that energy into is both good and productive. Doing what she's doing is a good thing.
I'm quite sure that she truly cared about her child and did the best she could given her circumstances; however, facts are facts and the simple fact is that she did somehow manage to maintain a blog for quite some time and that had to TAKE quite some time to do.
The article doesn't really say what else she did - whether she worked or was a stay-at-home mother, etc. I merely WONDER. "Wonder" does not translate into "assume" or "accuse", so just because you don't agree with my opinion or somehow don't understand the actual -wording- of it and decided to fill in the blanks yourselves rather than actually reading the -entirety- of the post itself don't *assume* you know me or my thoughts on the matter (despite my so PLAINLY stating them - THRICE - in black and white here O.o)
I fail to see how it's my fault if you people don't feel like reading the entire post and I'm quite frankly bored with repeating myself ad-infinitum (nauseum...) if you refuse to even compute the words in front of you, so any further comments on my post will be blatantly -ignored-.
Reply
4-29-2011 @ 11:07AM
JC7667 said...Perhaps others are simply transferring their anger and grief at the loss of this beautiful child onto you because they have no other place to put it? I get that you asked an innocent question but a question none the less loaded with emotion. You are not a jerk, just curious about how someone could find the time to blog when dealing with such an all consuming situation. Please don't take the comments on this board so personally. I respect your courage to ask the question.
4-29-2011 @ 10:40AM
S said...Truly Sad & Happy I cryed after looking at your beautiful daughter She was adorable
Reply
4-29-2011 @ 10:50AM
jimbarry1946 said...There are hundreds more parents out there doing the same thing on "carepages". The tragic stories so often end with the families doing unbelievably good things for others.
Reply
4-29-2011 @ 11:00AM
amy said...God Bless this family and all family who are and who have struggled with a sick child.
Reply
4-29-2011 @ 11:05AM
Barbara said...I am sorry about your loss, I know it is hard. We lost our Granddaughter to Dandy-Walker. Lily Ann will never be forgotten.
God Bless your Family.
Lily Ann 4/28/10 to 11/22/10
Reply
4-29-2011 @ 11:13AM
dotlhs56 said...What an amazing story. Maddie was a beautiful little girl and I know that you miss her. You have experienced the worst thing to befall a parent. May the Lord walk with you. And it is wonderful that you have another daughter. God's greatest gift. May you have peace and cherish your memories. Keep sharing.
Reply
4-29-2011 @ 12:08PM
j said...We just had a baby girl. I'm a 40 y/o selfish American male. I never understood what the big deal was about kids. I would scoff at parents doting on their runny nosed brats. Sneered at Mommy's in minivans turned around figuring out what the hell the lil crap head was doing. Meanwhile slowing down traffic imagine that? Slowing down the traffic. And not to mention just plain in my way in my vastly more important life. I'll drive your arse off the road if you don't move it. We're from Massachusetts.. Well, the worm has turned for me lately. I first lost my job and then was diagnosed with Paget's disease. I then found myself full time day care Daddy as my woman went back to school and guess what?. I WOULDN"T CHANGE IT FOR ALL THE TEA IN CHINA! I now brag about her little victories and constantly talk about her every little accomplishment. I dote and dote. I'm involved in every aspect of her life and see now that parents can help a child learn and even maybe, excel. No pressure, but I know that if she is lagging behind, I will be partly to blame because I couldnt get off my but and read to her or do My baby can read, which she loves. Is it easy? HELL NO. Anything you planned on doing that day you can cancel it. Even if you expect to have a few hours to yourself, forget it. Think she's gonna lay down and goto sleep when you say so? Not gonna happen. Are you gonna have to learn very quickly that what you wanna do is thrid on the list now? Oh, yeahhh. Any aches and pains I have, wait. Gladly.
After reading this I guess I started feeling lucky. Me lucky? Yes, me. For a brief moment I tried to feel what it must be like to lose someone you raised from embryo. That you held and cried over. Something so true and unspoiled and not demented by this world yet. Everything is fun and new and exciting. We as adults have learned life is none of those things as our minds are bound. What a feeling it must be to be set free in your mind. Be able to forgive and love unconditionally. To have no prejudice or animosity, jealousy, well, some of us do. They were only just born though. There must be no deepest depths of despair when caring for an ill child. If I had more thatn a heart to go out to you I'd send it. I know I am weak. I know I am flawed. But take away my baby and i am truly nothing and don't wanna know the world without her. For you to get back on your feet and just live is an accomplishment I doubt I could do. You are musch stronger than I. Much, much stronger. Why don't you run for public office you've already shown enough to me to believe you have courage, character and backbone. Sounds like a person worth their salt on this planet for once. If their is a God, I hope he blesses your family from here on out.
Reply
4-29-2011 @ 12:26PM
t said...ok, im pretty positive that the baby has make up on in its pictures.... not something a toddler needs in my opinion
Reply
4-29-2011 @ 12:14PM
WILL said...What a beautiful girl
Reply
4-29-2011 @ 12:26PM
rthate said...I know what these two parents are going through. I lost bot h my son and daughter ecause of seizures (Yes! Seizures di indeed cause death.) I lost my 27 year old son in October 2007, and a mere six months later, lost my daughter 30 in April of 2008. God took them both in their sleep. They went to bed one night and never to awake in this life again. However, in our case, there were never any fund raisers, people careing..nothing! We had to face the whole odeal (and still do!) alone, with the except of a very few (VERY FEW!). These two parents are very fortunate in having careing people who raised a considerable amount of money for them (it helps, but doesn't do anything towards the grief!).
Reply
4-29-2011 @ 12:37PM
burntbronz said...a baby that beautiful could only go straight back to heaven, where she came from. she touched me, just by looking at her. Thats a special soul, with a special purpose you can see it in her face..
Reply