Friday, January 25, 2013

Some time off

Due to recent developments, I will be taking some time off from writing (well, here at least) to spend time with my loving husband and our families.

Please take care of yourselves and others.  Smile at random strangers.  Open the door for the person coming after you.  Say please and thank you.

Remember what is truly important (and I'll give you a hint, it isn't rushing out the door  and cutting someone off on the drive to work to get there EXACTLY at 8)

Much love to you all, and thank you for the continued thoughts and prayers.  We are praying for strength and for some time with Noah before he joins his older siblings, Taylor and Dylan.



Tuesday, January 22, 2013

Love you forever

So a few ladies in our grief support group talked about this book, Love you Forever.  So I requested from our local library and picked it up on Saturday.  Have you read it??

The main verse or line of the book is the following:


and I LOVE IT! It's SO true.

I can admit also, that I was sobbing hysterically at the end.  But if you haven't read it, I strongly recommend it.





Wednesday, January 16, 2013

update

I am having a hard time keeping up on here with all of the March of Dimes stuff I've been doing! I am getting VERY excited for our big kick-off party.  Lots of places have donated and if we get 1 new team walker because of the event, I will count it as a success! :)

We were recently asked to be an ambassador family (for March of Dimes) here in WI!


so what does that mean exactly?? 

Well, WI will have more than 1 ambassador family as they understand that we have jobs, etc.  We will be asked to speak at certain events (they've already asked us to speak at the March for Babies walk this year! and to speak at the Chef's Auction they run in the fall!). 

We will tell our story.  

It brings up emotions, etc but it also keeps Dylan's memory alive.  More people get to hear about what an amazing little boy he is, and that is worth the public speaking (YIKES!) and the tears.

What else is new??


Noah keeps getting bigger! Here's us at 22 weeks 3 days :) 

Monday, January 14, 2013

Very Humbled...

I have talked about the group of women who I became friends with while I was pregnant with Dylan a lot.  I refer to them as the Bumpies :) Also known as The September Sweet Peas.

We met on the bump back in Dec 2010 and some trickled in later on.  Regardless of when they joined, a bond was formed.  Some formed very close friendships, BFF's even (E and Nutan, I'm looking at you!)

And yes as you can imagine, a group of 300+ hormonal women can have it's share of drama. But they have ALWAYS come together when a fellow pea was in need. Always. Out of the 300+ of us, 4 of us lost our children.  On Mother's Day, we were sent flowers and a cookie/brownie care package to get us through the day and to remind us that we are mothers.  Regardless of where our babies are.

Most recently, we found out that our sweet little Noah has the same genetic "defect" as big brother, Dylan.  The genetic team here at Children's Hospital of WI wants to run some sequencing testing to try and locate the gene(s) that are causing this "issue/defect" with our boys. This testing is not yet covered by health insurance (which is ANOTHER ridiculous issue) and is very expensive when on top of that you add the pre-testing and IVF to the tab... (AGAIN, not covered...)

So what do these ladies do???

They want Patrick and I to have a biological take home baby.  They organized a fundraiser to help us pay for that possibility.  They made a very touching video of our story that they are trying to get to as many people as possible, they created a facebook page, and twitter account.

I think they started this late thursday evening or Friday morning and they have already raised over $4,000 for us. I have literally been crying since :) It is very humbling to think that people are that moved or inspired by you and your story that they want to help you, or share your story.

Thank you from the bottom of my heart for helping us.  Thank you for sharing the video, thank you for donating, thank you thank you thank you :)


Thursday, January 10, 2013

So...I'm trying

I'm trying to stay positive.  I'm trying to continue on a day at a time. But sometimes that's really hard.  Sometimes I want to just go home, pull down the shades, turn off the lights and curl into a ball and cry.

Not everything happens for a reason.  This isn't a test to see how strong I am... I've been told by countless people how strong I was after I lost Dylan, why would anyone need further proof?

We are getting closer and closer to our dreaded appointment.  The next ultrasound where they will measure our sweet little Noah and determine when to deliver him.  Out of everyone we know (and that's a lot of people), I feel like we are the only ones who dread ultrasounds.  I mean think about it... we've NEVER heard the words, 'Everything looks great guys, congratulations".  We've been pregnant 3 times.

Many of the ladies that were pregnant at the same time as I was with Dylan are pregnant again.  I cannot stress enough how happy I am for every single one of them.  At the same time, I'm jealous.  I feel bad about myself.  I get angry.  I should have been able to post Birthday and Christmas pictures of Dylan.  I should have been able to hit all those milestones around the same time they were with their babies. But no. We got our hopes up then with Noah.  "ok now we will be able to do those things...change dirty diapers at home, not sleep, put the coffee in the fridge instead of the microwave, etc" but again no.

ok see, I just went to the dark place...time to get out.

Dylan helps me with that. I think back about all those smiles. And all that love and I know that he wouldn't want me to sit alone in a dark room and cry.

That's why I do what I do. That's why I have a March of Dimes team, that's why we raise money for the mission, that's why I donate items to the very NICU that gave us those 2 months. It's all for him.  It's all to keep his memory alive and to do great things in his name.  And I will continue to do it, and hassle people to walk with us.  Can you blame me??

Have you seen this face??

We love this picture of him...he looks like he just figured out his plot to take over the world.

For the month of January, we have some fundraisers going on, you may have heard ;)
Read more here


Monday, January 7, 2013

Let the Fundraisers begin!

To help us raise money for our March of Dimes team, a few people have started up fundraisers :) (because they are awesome and like babies...you like babies right? So go buy something ;) )




Pampered Chef:

Devoted to Dylan Pampered Chef Fundraiser- 
* Any purchase over $60 receives a free mix 'n scraper
* If the show total is under $650, MOD will get 10% of the proceeds and above $650, MOD will get 15% of the proceeds. 
* In addition, for every $150 in orders, Sara Radginski (the PC rep) will donate an additional $10 to MOD. 
*Please feel free to share the link to your family and friends!!



To make sure your order counts for March of Dimes, please click on this link:


Pampered Chef Fundraiser






Thirty-one:

Karen is an Independant Consultant for Thirty-One and she's created a place to order in honor of Dylan. I will donate 50% of my commission to the March of Dimes, Devoted to Dylan Team. She's set the event up to last until January 30th. Once everything is totaled up, she'll send the donation March Of Dimes! :)

There is a special in January to keep in mind as you're ordering, too. For every $31 you spend, you can get an item from the "Your Way" collection for 50% off. Here is a link to the flyer

Feel free to share the link with your friends and family to raise more money and let me know if you have any questions.

https://www.mythirtyone.com/shop/eventhome.aspx?eventId=E2702324&from=MYEVENTS
select "Shop Now" 

and of course our BIG kick off Party with Silent Auction is coming up!!!
$10 cover donation includes entry to the event, a complimentary beer and appetizers



We've already gotten auction items from the Green Bay Packers, Alterra Coffee, Mary Kay, Pampered Chef, lark & juniper, Present music and more to come!!!

Thursday, January 3, 2013

Let's call a spade a spade...

Ok... not trying to get political here because I am not a huge fan of talking politics (ask my husband)

So a few months ago, March of Dimes set up a petition to get the President to light the White House purple in honor of the HUGE 75th anniversary of the mission (also started by ANOTHER president)

Side note, they light it pink for Breast Cancer awareness...

Here's the email I received this morning:


OFFICIAL WHITE HOUSE RESPONSE TOLight the White House Purple to Celebrate 75th Anniversary of March of Dimes and as Symbol of Hope to Preemie Families

Celebrating the 75th Anniversary of the March of Dimes

By Valerie Jarrett
Thank you for taking the time to sign this petition. There is no question that every step must be taken to ensure quality healthcare for mothers and their infants born prematurely. That is one of the reasons why our Administration worked to ensure more women and their children get the health care they need.
As we move towards fully implementing the Affordable Care Act, more women will have high-quality insurance so they can see a doctor and monitor the development of any potential risks earlier than later. The health care law helps ensure women have access to affordable maternity and newborn care, which is vital to maintaining medical support for high risk pregnant women and infants and children with medical needs.
On the 75th anniversary of the founding of the March of Dimes, we are honored to recognize the progress that we’ve made and the progress we continue to make to implement and expand the best health care coverage and research possible to protect our mothers and children.
While we are unable to light the White House purple on January 3rd for the 75th anniversary of the March of Dimes, please see this message from the President of the United States (pdf):
I am pleased to congratulate the March of Dimes on 75 years of service.
Since its founding by President Franklin Roosevelt, the March of Dimes has played a key role in helping our Nation uphold its most fundamental obligation—ensuring the health and well-being of our children.  From combating polio and working to prevent birth defects and infant mortality to raising awareness about premature birth, your organization has been at the forefront of giving our youngest Americans a healthy start in life.  As staff and volunteers mark this special milestone, I hope you take pride in 75 years of accomplishments.
Congratulations, again, and I wish you all the best for the decades to come.
Valerie Jarrett is Senior Advisor to the President and Chair of the White House Council on Women and Girls.


OK so long and short of it is, "Thanks, awesome job keep it up" and "WE have made this affordable healthcare act so women will get better coverage and healthcare"

WHAT????

So how is this NOT hypocritical????

If Women are getting better healthcare, then you don't need to light the White House pink EVER AGAIN either...Right??? But you just did it... Riddle me that please.

This is the same battle that Ronan's mom is fighting with childhood cancers! The administration is not concerning themselves with our babies and children... they are our future! They don't know how to ask for help, BUT I CAN.  And this is what you respond with?? Really? And this isn't a dem/repub thing... this is an issue with how childhood illnesses and diseases are looked at and treated...

I'm disgusted.  I'm glad that my breasts are more important to the administration than the babies in the NICU's across the country.

Rant over, sorry I'm mad.