Summertime

We have had a busy summer.  Reagan is so amazing and is becoming more grown up every day.  She’s into the three-year old challenging phase.  She asks why all the time and even talks back every once in awhile.  Just the other day she spit (yes spit) on the kitchen floor!  This little expression of rebellion caused her an extended time out, no pool time and she had to clean up the spit.  Who knows where this behavior comes from.  Honestly though about 90% of the time she’s an amazing, wonderful little girl.  I love her more than words can describe. 

She is also quite the swimmer, we swim almost everyday.  She LOVES swimming lessons and really can’t get enough of the water.  We now sit on the deck at swimming lessons and don’t have to be in the pool with her any more.  Last week I found myself thinking and wishing for two little blonde three year olds in the pool.  Reagan would love Eden and they would be best friends.  I hope and pray that she will remember her sister.  Scott and I are working very hard to keep Eden’s legacy alive.  And some day Reagan will understand how much of an impact Eden made in her short eight months on earth.  I love Eden more than words can describe and miss her every day.

 Our fun activities this summer:

 

7/20/13 Tough Mudder!  Yes Mommy and Daddy are crazy!

 

 

 

6/22/13 HeartBeat 5000 remembering sweet Liam and a visit at Cedar Summit Farms

 

 

 

 

6/15/13 Nature Valley Grand Prix Kids Bike race!

 

6/13/13 Cannon Falls unsuccessful bike trip (3 flats and 2 crashes- Reagan was NOT hurt)

 

6/1/13 Baby Steps 3K

 

And swimming, swimming and more swimming....

An empty crib



Before

 

After

 

 

 

To most these are just before and after photos.  To us this was a major step in our journey. 

Two cribs.  That’s the way things were meant to be. We needed two cribs to fill with two babies. Our sweet baby Eden didn’t get to use her crib.  Eden never came home, she never used her crib.  We spent 26 months staring at one empty crib.  We couldn’t bring ourselves to take Eden’s crib down. The symbolism felt too scary.  We didn’t think we’d ever be ready.  That doesn’t mean we were ready today it just means we were able to do it.  As we removed bedding and screws we were silent.  Reagan’s chatter of one thousand questions filled the air but Scott and I were silent.  Tears filled my eyes but I looked at Reagan and smiled.  She is so amazing and makes the pain more bearable.  We miss Eden every day and we will never forget her.  Our journey is long and never ends but step by step we slowly cope. 

You may know a family like us.  One who has lost a child.  You may wonder why they are still sad or why they still celebrate birthdays.  You may wonder but don’t judge.  This journey is our own, no one can tell us how to do it or question the process.  Different families do this journey differently.  The one thing you can do is to love them. 

Reagan's update

I've said this at least one thousand times but Reagan is truly amazing. Not a day goes by when I don’t look at her and think about how far she’s come and how incredible she is. God is so good to us and to Reagan. We are a true testament of His amazing grace. 

I haven't provided an update on Reagan for awhile so thought I would share some milestones.  Reagan is SO busy, she never stops unless she’s sleeping.  

Mother's Day picnic at Minnehaha Falls

March for Babies 2013

March of Dimes is an organization that is near and dear to our hearts.  Not only are we the Ambassador Family for this special 75^th anniversary year, but the research and innovations that March of Dimes has supported were live-saving to our girls.  Without surfactant therapy our girls would have never made it out of the delivery room.  We were honored to be a part of this year’s special March for Babies.  We have developed wonderful relationships and have been able to tell our story over and over again.  I’m certain that Eden is happy knowing that her mom, dad and sister are still honoring her every day.

 Amanda giving an interview to KSTP. Check it out here

 

An experience in Washington, DC

Last night we returned from Washington, DC where I was honored to be a part of an amazing group of individuals called Supermoms Against Superbugs.  The Pew Charitable Trusts organized this advocacy group to lobby on Capitol Hill against the overuse and misuse of antibiotics in our food animal production.  Superbugs and drug resistant bacteria are a very real problem; a very real problem for adults, but an especially critical problem for the tiniest and most vulnerable preemies.

Antibiotics should be saved for these preemies.  Reagan and Eden would not have gotten so far in their NICU journey had it not been for antibiotics.  And antibiotic resistant infections could have killed them before they had a chance at life.  I was so very honored to be able to speak before Representatives, Advisors, Senators and other influential members of government.  Reagan and Eden’s story was heard by a few hundred people in a matter of two short days. My hope and prayer is that their story was heard loud and clear and will be remembered when decisions are made.   

Visit www.SaveAntibiotics.org for more information about why the FDA, Congress and the White House need to take action to preserve antibiotics.  

Scott and Reagan were able to travel to Washington, DC with me and we made it a mini family vacation.  Reagan did great on her first official flight and we had so much fun as a family.  We walked many miles and saw lots of sites.  See the photos below!

Cherry blossoms Mom!

Tidal Basin to see the cherry blossoms

I love puppies!

Reagan's favorite thing- jumping off stairs!

Alexandria- Old Town

Washington Monument

Capitol

The White House

Reagan's first flight

Briefing that I spoke at- Representative Louise Slaughter from NY is  sponsoring an important bill to remove antibiotics from animal production

Sweet Eden

March is difficult for us and I think it always will be.  Our sweet Eden passed away two years ago today- March 30^th, 2011.  This day is that day our lives changed, the day our sweet pea went to heaven with Jesus where she is no longer struggling.  What I wouldn’t give to have one more day with her. 

Reagan has shown a big interest in Eden lately.  We talk about Eden all the time but recently she’s been asking when Eden is coming home and where Eden is now.  One day while she was sitting quietly on the chair in the living room she asked Scott- where is Eden.  Scott said it was painful to explain that Eden was in heaven with Jesus.  We realize that perhaps Reagan was far too young to have real memories of Eden but we continually hope and pray that she has some memory of Eden and some special twin connection.  As we “disconnect” from all technology today and focus on Eden we will be sharing memories, looking at photos, doing special crafts and spending time together as a family.  Though we are very transparent about our lives we hold this day March 30^th as sacred.  A time to be at peace, a time to be still and remember.  We also turn our eyes to our Lord God who guided us through this journey. Without God’s grace and love we would be lost in a dark place.  Thank you Lord for getting us through another year. 

Kangaroo Crew

A Cessna Bravo jet.  Eden’s first official flight was on a Cessna Bravo jet two years ago today.  She of course didn’t know because she was sedated and paralyzed but it was the most terrifying experience of my life.  Eden didn’t tolerate the transport ventilator so she had to be bagged for the entire flight.  I sat in a tiny jump seat in the back of the plane watching and praying- I barely breathed during the entire flight. 

The flight was so difficult for Eden but it was her only chance at life.  We gave everything for Eden and have no regrets.  We had a beautiful eight months with our sweet pea.  Eight beautiful months that we can never re-live.   We love you more than anything Eden.  Thank you for changing our lives and the lives of many others.