As you all probably know by now, the March of Dimes is a cause near and dear to the Spohr family. If it hadn’t been for the advances in neonatal care that were made possible by the MoD, we wouldn’t have had our Madeline for seventeen months – she wouldn’t have made it 24 hours.
After Madeline?s premature birth, Mike and I swore we would do what we could to help other families whose babies faced the same battle. Our resolve only grew after Maddie passed, and we fervently support the March of Dimes – a wonderful organization that gave us much support in our time of need.
The March of Dimes’ biggest fundraiser is the March For Babies. There are walks in cities all over the nation. The Spohr family is very excited to once again take part. By participating, we are helping The March of Dimes champion the needs of families and babies in our community and across the nation. The money we raise for March for Babies will support lifesaving research, services, education and advocacy that help babies get a healthy start – babies like Madeline’s sister Annabel, who made it to full term thanks in large part to medical advances championed by the March of Dimes.
Last year, our team March For Maddie, was the biggest family team in Los Angeles, and raised more money than any other family team in the ENTIRE COUNTRY. Across the United States, there were over fifty teams that raised an additional forty THOUSAND dollars, bringing the total amount raised in Maddie’s name to over ONE HUNDRED THOUSAND DOLLARS. Amazing.
We know we’ll never live up to last year when it comes to money raised – although we do want to hit our team goal of $20,000 – but we’re hoping we will still be the biggest team in Los Angeles. Beyond that, we’re hoping that everyone who walked in Maddie’s name last year will walk again. And to everyone who didn’t walk last year, we hope this will be the year you join, or even start, a team.
If you’re in Los Angeles, we would be honored if you would march with us. You can sign up HERE to join the original March For Maddie team. If you are elsewhere in the country and have started a team, there is a linky below to list your team so others near you can join. Not a team in your area? Start one! Or, if there isn’t a walk near you, join our team as a marcher in spirit. And, we are exceedingly grateful to anyone who donates to our cause – you can give by clicking on the March of Dimes widget in the sidebar on the right.
There will be shirts soon for anyone who wants one – I’ll post the link to order them ASAP.
Thank you all for loving our daughter. We miss Madeline so much, but knowing that there are people all over the world that have been touched by her is indescribable. We are all doing amazing things in her memory.
If you have any questions, PLEASE don’t hesitate to email me at thespohrs at gmail dot com.
Marching for Maddie? Please leave your city and team name, along with a link to your team, in the linky widget below.
For a few nights in a row Annabel ate at midnight, four am, and eight am. Mike and I were excited because four hour stretches? AWESOME. But we were cautious because we know that these darn babies love to give their parents a glimpse of restful nights before they yank the rug out from under them.
Well, the rug? It has been yanked, people!
She will still sleep for four hour stretches, but she just will NOT go down at night. I am up until wee hours with her, staring into her wiiiiide open eyes. Here is a dramatic re-enactment:
Most nights you will find me singing her the Go To Bed Song. It goes something like this:
Oh, little baaaybeeee,
Mommy’s going craaaaaazeee,
Go to bed! Go to bed!
OH MY GOD! GO TO BED!
It’s a very soothing lullaby.
It’s not that she’s crying, or unhappy, or hungry, or dirty, or any other problem I can fix. She’s started to realize that the squeaks and yelps she hears are coming from her own mouth, and she LOVES to lay in bed and make all these fun new noises. For HOURS. At TWO AM. And oh man, the noises really are so cute, but I have a feeling they’d be even cuter at two PM. But I wouldn’t know, because she is always sleeping at two pm!
I know Maddie had this problem, where she confused days and nights. But I cannot, for the life of me, remember what (if anything) we did to correct the problem. Other than sing the Go To Bed Song.
My heart always breaks when I hear about the death of a child. In the last eight months, whenever I hear about another little one passing, I can’t help but flash back to when the doctor told us they’d done everything they could for Madeline. I can remember the sound of the blood rushing from my head, how much my throat hurt from screaming. It all comes back to me because another mother has joined my ranks.
Last week, a woman named Shellie lost her beautiful son Bryson in a tragic accident. She is active in the blogging and social media world. She’s a stay at home mom like me, but her husband is in the military, so she is often alone with her kids. I’ve talked in the past about how social media has revolutionized the world of the stay at home mom. When I worked outside the home, I was surrounded by coworkers. As a stay home mom, I didn’t have that constant adult interaction and feedback. There wasn’t anyone to bounce ideas off of or ask for advice. So I turned to social media. Thanks to networks like Facebook and Twitter, I was never alone. I had all my co-workers at my fingertips.
Some people have called into question Shellie’s involvement with twitter on the day her son passed away. She was tweeting before the accident, and then when the doctors were trying to save him, she tweeted asking for prayers. Later, a friend announced that he had not survived. These people wonder how she could have possibly thought to tweet for prayers during such a stressful time. I know exactly how. She wasn’t allowed in the emergency room where her son laid. She was alone, and she took ten seconds to send a text/tweet that reached thousands of people at once.
The day that Madeline died, I was also using twitter. I’d told all my friends and blog readers that I would be updating Maddie’s condition via twitter – there were simply too many people that wanted to know how she was doing and I couldn’t possibly update them all with phone calls. The morning and early afternoon of April 7th found me updating from next to her bed, in the cafeteria when I was forced to eat, and then from in her bed when the only place Maddie was comfortable was laying on me. When the doctors decided to intubate, which started the chain reaction that led to her code, I was alone with her. Mike was at work, my mom was back at my house walking my dog. I called Mike, I called my mom, and then I updated my friends via twitter – “they’re going to intubate, I’m freaking out.” And then I stood there for the next three hours and watched the doctors try to save my daughter. I was allowed to stay – most parents are not.
In the hours after she passed, my friends took over for me. One friend in particular helped by telling everyone that had been waiting since my last twitter update. She had my blog and twitter passwords, and she posted on my behalf. From there, everything took off – tens of thousands of dollars raised in Maddie’s name for the March of Dimes, financial support for her funeral, and the money to start Friends of Maddie. And the emotional support – I cannot do it justice. Mike and I sat next to each other on the couch, numb, and watched the tweets of love and sorrow pour across the internet. We thought no one would care about our daughter, and so many many people cared. It saved us.
On Friday I was asked to comment for a story that CNN & Headline News did on Shellie’s story. After I cleared it with Shellie, I spoke about how important social networking had been to me and my family after Maddie died.
I say all this to try to express to all those who don’t understand twitter and social media how it can help. It’s the new way people communicate what’s going on in their lives – both good and bad. With every advance in technology, there is resistance. When email was first introduced it was criticized as being impersonal, but it would seem ridiculous now to send vital information via snail-mail. Instead of attacking social media, people should try to understand how it is being incorporated into millions of people’s everyday lives.
Lastly, one of the things that I find most hurtful in the criticisms of Shellie is when people say things like “I would never do what she did” – tweet – implying that they would react “correctly” in this situation. There is no right or wrong way to grieve. There is no right or wrong way to react to the worst news of your life. Unless you actually HAVE been in this situation, believe me when I say you have no idea what you would do. None. And those of us who have been in this situation would never ever judge each other.
It’s easy to hide behind computer screens and leave hurtful comments. But I hope that people will pause a moment and remember a little boy has died, and his family will suffer for the rest of their lives. It is just as easy to treat each other with humanity and compassion. Even if we don’t all agree about social media, we should agree to care for one another.
UPDATE:
A Caring Bridge site has been set up to keep everyone informed of Anissa’s condition and can be found here: www.caringbridge.org/visit/anissamayhew/. There has been encouraging bits of news today but it is still very early. Thank you so much for your wonderful notes, prayers, and thoughts. I know that the Mayhew family will cherish them the same way my family cherishes everything that has been written about our Madeline.
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I am incredibly lucky to have many amazing friends in my life, friends that have surrounded me and held me up the last seven months. Each of my friends has brought something different, something that I never would have known I’d need when we became friends. I am so grateful for all of them, and could wax poetic about them for months on end.
My friend Anissa and I bonded because we had daughters with medical needs. Anissa’s daughter Peyton had leukemia, and Anissa knew what it was like to have a child that was sick in the hospital.
We are the type of friends that can pick up where we left off, no matter how long it’s been since we’ve seen each other.
I’ve stayed at her house, had coffee with her husband, played with her kids. She’s been to my house, met all my family and friends. It makes both of us sick that she never met Maddie, but she has plans to come out as soon as Binky is born.
After Madeline passed away, Anissa flew out from her then-home in Florida to be with me and my family. It was then I discovered something about Anissa that I wish I didn’t know, that I wish she wasn’t good at. Because of her involvement in the Pediatric Cancer community, she has friends who have lost children. She knew exactly how to be there for me. She knew exactly the kinds of things I needed to hear, and she knew how to listen.
Anissa and I have had long talks about life and death. The kind of talks you can only have with someone that has seen it, been near it, faced it, touched it. She has let me unburden myself to her. She has no idea how much she’s helped me.
Earlier today, Anissa had a stroke. She’s in the Intensive Care Unit and her awesome husband Peter is by her side. I would give anything to be there with him, helping with their three young kids, holding Anissa’s hand and telling her jokes. I want to press her hand against my belly so she can feel Binky kick. And if I wasn’t so afraid that she’d kick my ass for traveling against doctor’s orders, I’d be there tomorrow.
I am a lucky recipient of internet love and generosity. I am hoping the same happens for Anissa and her family. You can go here or here to help. Both will be updated with information as it becomes available.
Anissa, I love you and I KNOW you’re going to get better. You’re going to meet my daughter and she’s going to drool on you and love you as much as I do. I am always here for you, and as soon as I can be THERE for you, I will be.
