Marleigh One Love

**Raffles are now open!!!!**  If you want to purchase a ticket (or 2 or 50) you click on the “add to cart” button for which ever item you want.  It will then open a new window where you can change the amount of tickets you want to purchase.  If you are not done shopping, click “continue shopping” and follow the same process until you are ready to check out.  If you are done, you can “check out” either with or without a paypal account.

We will close the raffles Friday, August 5th, at 11pm so that we can make sure we have all tickets in the appropriate place before the raffle continues in person at Marleigh’s party on Saturday.  If you will be unable to pick up what you win, you may have to pay a shipping charge so that we don’t lose research money due to shipping.  Please highly consider buying raffle tickets to help babies born with Alveolar Capillary Dysplasia…research is our only hope to help save babies born with this horrible, deadly disease.

Wow!  It is so hard to believe that Marleigh’s 1st birthday is around the corner.  We continue to miss her like crazy but know that we will one day see her again.  That helps survive through the really hard days where it’s hard to keep putting one foot in front of the other.  With her 1st birthday coming up, we want to continue her legacy by increasing awareness and raising money for research.  Since Marleigh passed away, there have been some major breakthroughs in the ACD world including an infant receiving an artificial lung and a test that can detect some forms of ACD in utero!!

We will be having a fundraiser for her birthday to raise money for research on August 6th at Oak Hollow Park in High Point, NC.  It will take place from 10-2.  There will be food and fun crafts for children including sand art, cake walks, tie-dyeing and more!  There will also be raffles for the adults including a massage, artwork, pocketbooks/bags, water park tickets, Tweetsie tickets, spa weight loss packages, UpperCase Living gift card, restaurant gift cards, oil changes, and more!!  We will be posting pictures of the items to be raffled so you can participate in the raffle from where ever you are!

Please check back soon for updated ticket pricing and pictures of raffle products!!  We hope to see you there!

We will also be raffling 2 weekend stays at the beach (One for Carolina Beach, NC and one for Cherry Grove, SC), and photography sessions.

The grandparents and extended family of Marleigh are asking friends and others interested to “give up” one Christmas gift this year in Marleigh’s memory.

Rather than receiving one gift from a loved one, ask for money instead and give a tax-deductible donation toward the research on Alveolar Capillary Dysplasia (ACD)
at Baylor College of Medicine in Houston, Texas.

Our first goal is to raise $5,000 in order to establish a restricted ACD account at Baylor. You will receive a receipt from Baylor for your tax-deductible donation. Learn more by reading the brochure here. You may also download a donor gift form here.

Well it’s been a week since we posted.  Things are getting back to normal at the Sanders house.  Addi has been going back to daycare on occasion.  We have gotten haircuts.  Steph is relaxing, while still on leave.  I have begun to go back to work.  Our friends, family, and coworkers have been great through this time.  I can’t say life has gotten any easier without Marleigh, but it’s nice to know how many people are still thinking about our family.

We have decided to put together a book to memorialize the love for Marleigh.  This Is My Message To You: A Book For Marleigh will consist of artwork, drawings, poems, and words of love.  All proceeds from the book sales, which will be available to purchase on this site, will go to ACD (Alveolar Capillary Dysplasia) research being done at Baylor University in Texas.

So if anyone who has followed Marleigh’s journey would like to contribute material to be published in the book, submit your work here.  Please make sure that the material is original, as we do not want to deal with copyright infringement.  Any and all work is welcome, and we will do our best to get all contributions in the book (depending on how many we get).  Steph and I would like to go ahead and thank everyone who contributes for this book for our little girl.  We will keep everyone up to date as to how the book is progressing.

The weather outside fits the mood inside.  Steph and I just had a quiet ride to the funeral home to pick up Marleigh.  I couldn’t help but think this rain was coming to help wash away our sorrow.  I wish the rain would wash away the sorrow.  Marleigh didn’t come home in her car seat today.  Instead we picked her up in two small blue felt bags with the small ropes tied tightly around the opening of each bag.  The only way I felt I could keep her safe on the way home was to pull those ropes just a little tighter.

The ride home seemed just a little quieter.  Steph and I  sat in silence and held each others hand.  There are just no words that can fill that silence.  I looked over and Steph was crying and it took all I had to hold back the flood of emotions that I’m not sure will ever come out.  Finally the silence was broken by Steph.  ”Where are we going to put her?” she said.  How do you answer something like that?  She needs to be in her crib, in our arms, or anywhere other than in those tiny little bags.

We haven’t decided when we are going to take Marleigh’s remains to Bald Head.  That part of letting go is something that will take some time.  How much?  I have no idea.  It will come eventually and Marleigh will be able to swim with the dolphins just like her mommy would want her to do.  Daddy loves you Marleigh.  I miss you more than words can say.

Our little angel, Marleigh, passed away yesterday around 4:30pm.  We had all of our immediate family come to Marleigh’s bedside to tell her goodbye.  We learned moments later that her lung biopsy was positive for alveolar capillary dysplasia, so at least that confirmed to us that we were doing the right thing by letting her be released from her pain and suffering.  Then Ricky and I were given the chance to hold our baby girl.  We were able to sing to her, read her books, and tell her not to be afraid.  It was very peaceful and they assured us she was in no pain.  It was the hardest thing we hope we ever have to do.  No parent should ever have to say goodbye to their child.  That has always been my biggest fear in life.

We have decided to have Marleigh cremated.  We will not have a formal service but when we feel we are ready for our final physical closure, we will take her to the place where we got married and spread her ashes into the ocean.

After looking online for more information on Alveolar Capillary Dysplasia (ACD), we have found a university that is conducting research on this disease.  We have spoken with the person in charge of the research and they will be adding Marleigh’s lung tissue from the biopsy to the study in hopes of finding a cause for this fatal disease.  We hope that some of the information from Marleigh’s journey at Baptist will help other families and possibly even ours if and when we decide to have another child.

We would like to say thank you so much to everyone for your continued support, prayers, visits, donations, gifts, offers, and overall generosity.  We cannot begin to tell you how much you have helped and will continue to help us through this extremely difficult time.  We have made so many new friends, gotten in touch with old friends, and even talked with strangers throughout Marleigh’s life.  Everyone’s support has been amazing and “thank you” doesn’t begin to express how thankful we are.  We are very blessed to have Marleigh in our lives even though her time with us was way too short.

May you rest in peace, little angel.  We love you to the moon and back, infinity and beyond, and always and forever.

We decided to get a hotel room last night to be close to the hospital.  Before we went to bed, we made our nightly phone call to the hospital and were told that Marleigh’s heart rate had dropped into the 90s and her blood pressure numbers weren’t reading on the monitor.  We asked the nurse if this were her child would she want to be there through the night.  Her response was “yes.”  They had everything laid on the counter in case she coded.  They weren’t really expecting her to make it through the night.  The nurses were able to get a hand and foot print for her baby book as well as a locket of hair.  Somehow she managed to have a dirty diaper and I was able to help the nurses change it and have never been more happy about wiping poo.

She has required more fluid to keep her heart pumping but there just isn’t any room for it in her tiny body.  She’s leaking out fluid around her nose and her body is completely stiff.  She continues to fight somehow.  Her heart still isn’t filling up like it should and her chest x-ray continues to be whited out.  Marleigh’s sats have stayed up in the mid-80s to low-90s all night.

I want her to keep fighting but yet I want her free of pain.  I am still hoping and praying for that miracle to come.  Marleigh, we love you more than you will ever know.  You are the strongest little girl ever.  We are still hoping for that miracle.

10:30am

Today looks like the day we’ve been dreading.  Dr. Petty came in a little earlier and spoke with us.  The hole has gotten too deep, and too hard to crawl out of.  The staff is preparing Marleigh so Steph and I can hold her.  We don’t know if Marleigh will be able to tolerate moving around, but we need to hold her one last time.  As parents, we never thought we would have to face such hardships.  No one should ever have to face this difficulty in life.

Marleigh has put up a valiant effort, but she shouldn’t have to live through this pain.  We don’t want her to have to suffer any longer.  We want to fight for her so hard, but it’s not fair for her to have to live through this.  Marleigh we love you so much.  We have loved you since Christmas day ’09 when we found out that you would be coming into our lives.  We have loved you for the past 27 days as we stood by you and watched you fight for your life.  We will  continue to love you long after you have left us.  There will not be a day that goes by you will not be on our minds.  Rest well little one.  All of our love is with you.