Second Chance Blog

 

A Mother’s Love – the Gift of Living Donation

May 8th, 2015

There is nothing comparable to a mother’s love. It’s selfless, always giving and comforting.  But for three local mothers, Julia Moeller, of Lafayette Hills, Jen Lambert, of Lawrenceville, NJ, and Christie Voelker, from Norristown, PA, their generosity was put to the ultimate test when each of them received the news their child was diagnosed with biliary atresia and would need a life-saving organ transplant.

Biliary atresia is a rare disease of the liver and bile ducts that occurs in infants.

Julie and Jade Moeller

Moeller Family

Jade was diagnosed with biliary atresia in 2014.  After that, things moved quickly. Jade was diagnosed with the liver disease biliary atresia, and her family was told that she would need a liver transplant to survive.  In the ICU, Jade had a seizure – making it all too clear that her health was rapidly deteriorating.  They learned about the organ transplant waitlist, and realized how scary the prospect would be to watch Jade fade away before their eyes, while waiting for a second chance at life.  The Moeller family sprang into action and decided that they would be tested to see if they could be living donors.  Living donation is an option for those in need of a kidney or a liver transplant.

Jade’s father, Tim, wasn’t a match. “After two C-sections and going through so much watching Jade be sick, the thought of another surgery was the last thing I wanted to have.  But there was no choice.  I just wanted her to be okay,” said Julia.  “I was tested and I was a match. Going into surgery, I wasn’t even scared.  I knew this was what I had to do.”

Within 48 hours after the surgery, the yellow tint of Jade’s skin and eyes was gone. She had some complications after her surgery – there was gastrointestinal bleeding and one side of her diaphragm was paralyzed – but her health was improving and she was getting stronger every day.

Still being fed through a tube and on a breathing machine, Jade was able to go home after months in the hospital. Today, it’s quite clear that she is a resilient little girl.  She is off of all machines, has caught up to all physical and mental milestones for her age and brings joy to her mother, father, brother Zachary and just about everyone she meets.

Jade is a fighter and just turned 15 months. She’s alive today because of her mother’s love.  “She is the most amazing little girl,” said Julia.  “I don’t feel like I did something special.  Helping her was something that I had to do.  She’s my baby and it’s what a mom does.”

Jen Lambert and Liam Barnosky

Jen Lambert and Liam Barnosky

When Liam was diagnosed with biliary atresia, he had jaundice that persisted for nearly seven weeks. His twin, Finn, wasn’t born with liver disease, and Jen could see how Liam’s health was suffering in comparison to his brothers. After a trip to their pediatrician and many tests later, they were told to take Liam to the emergency room.

Things began to move quickly. After Liam was diagnosed, doctor’s decided to try to do a reparative surgery that they believed would prolong his life. It was only a temporary fix though. The first surgery did help him for several years, but he became ill again and was listed for a liver transplant at 3 and a half years old.  Liam had developed cirrhosis and had a chronic infection.  He was in desperate need of a life-saving liver transplant and couldn’t wait. The family learned about the organ transplant waitlist, and realized how scary the waiting would be. Would he be able to receive a new liver?  Would that call ever come through? They couldn’t sit back and watch Liam’s health fade away before their eyes, while he waited for a second chance at life.

After several months and extensive testing, it was determined that Jen was a match and she prepared for surgery. Liam had a liver transplant on June 20, 2012 and the surgery was successful!  Within a week, Jen was up and walking around post-op and out of the hospital.  Liam was doing great, and has continued to do so for the past few years.

Now at almost seven years old, Liam is an active boy. He plays soccer and tennis and loves them both.  Today, he has no restrictions and is a normal healthy boy.  Jen said, “We try to talk everyone we can about Liam’s experience to highlight the importance of organ donation.  When they see Liam – happy and healthy – I think it helps them understand the significance of it.”

Christie and Alex Voelker

Voelker Family

Alex was diagnosed with biliary atresia in 2012. Christie knew that something was wrong with Alex soon after she brought him home from the hospital. His eyes were yellow and even after five weeks, he was not eating enough.  After a trip to their pediatrician and many tests later, they were told to take him to the emergency room.  They moved into action.

Christie’s husband didn’t have the same blood type as their son, so Christie decided to get tested too. She was a match and prepared for surgery. The transplant was a success, but Alex suffered a stroke during the surgery.  As he healed, the Voelker family was unclear if he would have cognitive delays and if he would fully come around.

Today, Alex’s recovery has impressed everyone who knows him. He’s gained weight and has grown a lot post-transplant. “People are shocked when they see him.  He’s smart and outgoing and you would never know what he went through,” said his mother Christie.  “He’s just doing amazing.  He has friends and can play like everyone else now.  He is such a fighter – even as a baby, he was not going to give up,” she said.

Christie has also found a supportive community through creating a Facebook page for Alex called Team Alex. “It’s been amazing to connect with other people who have gone through this.  I can share pictures of Alex and show how successful his transplant was,” Christie said. “People are inspired by his story.  I tell people about it and they get emotional.  It makes them realize the importance of organ donation.”

Mother’s Day, How Do You Celebrate?

May 8th, 2015

It starts in April. Walk by the card section and you can see them…Mother’s Day cards. Some of us will see the display and make a mental note to come back and buy cards. Others will see the cards and will wish that Mother’s Day wasn’t so full of difficult and mixed emotions.  For those of us whose mother has died or whose child has died, Mother’s Day is never easy.

We asked some of our donor families to share what they do on Mother’s Day. We hope that by sharing their words, you will find comfort and support.

“On Mother’s Day, I have a Mass said in memory of my dear, Eric. I also write a note to the Pastor asking that they remember the Mothers who have lost children during the intentions of the Mass–grieving parents are usually overlooked on special occasions. Years ago, on the eve of each Mother’s Day, I started writing notes to my children telling them how proud I was to be their Mother and noting special things that I treasured about each of them.  After Eric passed, I found the note I had written that year tucked in his dresser drawer. It made me feel good that no words were left unsaid.  I will also visit the cemetery that day and place flowers on my son’s grave and say a prayer for all bereaved Mothers that struggle through this day and every day. And, I will still write that Mother’s Day note to my son for love never dies.” Mary S. Donor Mother

 

“On Mother’s Day I make it a point to focus on who my mom was and what she was passionate about. After losing my mom, Mothers Day and her birthday have become times of celebration. We always make a point to do something “Darlene would have loved” those days…. Whether it’s a day trip to the beach, heading to park for the day, or gardening.” Darlene S. Donor Daughter

 

“The title Mom is more important than any other one could ever be.  Never did I ever image that one day I would add on to that title and become a Donor Mom.  That title changes everything.  That title is what makes Mother’s Day so bittersweet.  Because on Mother’s Day one of my children is always missing.  And on that day the hole in my heart feels a little bit bigger.  Each year I am torn between happiness and sadness, always struggling to find a balance between missing my son Collin and wishing he were here and celebrating my three amazing boys who are still here with me.  Quite frankly, it can be exhausting and overwhelming.  We will spend the day either doing something together, or I will settle in and enjoy some quiet time on our deck, enjoying the weather, reading, reflecting, remembering. I have learned to be gentle with myself and give myself permission to experience all of them.” Nicki L. Donor Mother.

 

“When my child died, it put a big hole in my heart and I wasn’t sure if I ever wanted to celebrate Mother’s Day again because of that missing piece from my heart. As time goes on I began to heal and realized that even though Curtis is not here next to me, he goes on living in my heart. I love him just as much as my other children. I do miss him celebrating with us and always wish that he was still here and that is alright. So I hold on tight to my other children and go on living because that is what Curtis would want me to do. Now my daughter hosts a cookout and we come together to celebrate and we always remember those who can’t be with us but the love is always with us.” Vivian G. Donor Mother

 

“On Mother’s Day, over the years since Brian died, I have tried different activities, trying to find the “right” one.  I have settled upon one that gives me some  comfort and peace.  I go with a friend who knew Brian to a park, a garden, an arboretum, some place with the beauties of nature all around. We walk along, sometimes talking about Brian, sometimes not. But Brian is always there with us.  This year as I walk I also will be thinking of my mother, who is no longer with us,  but is now with Brian.  She died on April 17th, with my father by her side, holding her hand.  She loved flowers and plants and had an incredible green thumb.  Also,  speaking for myself, I might be sad sometimes when talking about Brian, but I always welcome any opportunity to talk about him.  I believe that is the greatest gift you can give a bereaved parent, sibling or grandparent…saying their child’s name and asking about them.”  Ann M., Donor Mother

 

“On Mother’s Day I accomplish one positive intention. Having something to complete on Mother’s Day helps me to get through the day, and gives me something meaningful to do with my time. Before Mother’s Day arrives, I set an intention for example, ‘On Mother’s Day I will say a prayer in thanks for my Mom’s life,’ or ‘On Mother’s Day I will kiss my favorite picture of my Mom.’  No matter how big or small the intention, completing it gives me a sense of fulfillment. Intentions connected to my Mother help me feel gratitude for and closeness to my Mom, which is what Mother’s Day has been about in the past. On this upcoming Mother’s Day my intention is to have a meal with my grandmother, Nana.  It is easy for a motherless child to feel worthless on Mother’s Day because our Mom is not here to celebrate. Nothing compares to looking into our Mom’s eyes, seeing her smile, and feeling her warm embrace. However I want to encourage you to set one positive intention for Mother’s Day, and accomplish it. I believe that it will inspire you to get through the day, and even experience a sense of content or joy.”  Teyona  J., donor daughter

 

The internet is full of beautiful essays about Mother’s Day. Here are a few that we particularly liked:

Mother’s Day Grief: Life Without a Mother’s Love

http://www.whatsyourgrief.com/mothers-day-grief/

http://www.opentohope.com/what-is-mothers-day-after-mother-is-gone/

Being the Mother of a Child Who Died — On Mother’s Day

http://www.huffingtonpost.com/claire-mccarthy-md/a-child-who-died_b_1511543.html

http://www.opentohope.com/mothers-day-a-happy-and-sad-occasion/

 

How do you spend Mother’s Day?

 

“In Sickness and In Health”

May 1st, 2015

Twenty-seven-year-old Bordentown, NJ native, Ashley Lamb, never thought that life could change so quickly. She worked in social services and had recently become engaged to her boyfriend, Bobby, a parole officer.   In January, everything that she had previously known about her future was now uncertain, as Bobby began the fight of his life.

ashley & bobby 2Bobby, 33, had always been healthy, until he came down with what he believed was the flu. After several days of being sick, he realized that he was getting worse and asked Ashley to take him to the doctor.  The doctor’s office recommended that he go to the emergency room due to the severity of his illness, and he was admitted to Temple.  Doctors could not give him an exact diagnosis – possibly ARDS (Acute respiratory distress syndrome) or AIP (Acute interstitial pneumonia), but they all agreed on one thing – Bobby was extremely sick. As his condition worsened, he had to be put into a medically-induced coma.  After a month of deteriorating health, his family and Ashley were faced with the reality that Bobby’s chances of survival were very slim, and that he would need a double lung transplant to survive.

On March 18th, Bobby was added to the top of the transplant waitlist.  Now out of the coma and preparing for a transplant, he and Ashley decided to get married in the hospital the following day.  Ashley wore a white dress and the nursing staff at Temple decorated the hospital room and brought in a cake.  All of the staff celebrated with the couple and a few family members were able to join them.  Then, something amazing happened.  Just shortly after they were married, Bobby’s doctor told him that they may have new lungs for him.  The lungs were a match.  The next day, he was wheeled into the operating room a newly married man who was about to receive a second chance at life.Ashley & Bobby

Today, Bobby is about 3 weeks post-transplant and is doing much better than doctors had ever expected. He is working with a respiratory therapist and has been able to walk again after being in bed for the past three months.  Ashley, who is staying at Gift of Life’s Family House to be close to her husband, is with Bobby every day to support him through this challenging journey.

 

A Walk to Remember

April 2nd, 2015

Along with the hundreds of walkers and runners in the annual Donor Dash, there are countless others present only in the hearts and memories of donor families–those loved ones who have given the gift of life after their deaths. In addition to being an important event for its awareness and fundraising functions, the Dash also serves as a healing ritual for the community of organ and tissue donor families.

When words aren’t adequate to express the depth of our experience, it’s time to turn to rituals, says Dr. Alan Wolfelt, director of the Center for Loss. “Rituals are symbolic activities that help us, together with our family and friends, express our deepest thoughts about life’s most important events.”

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There are 3 key components of rituals that make them meaningful: they are public, they follow traditional forms, and they are symbolic in nature. We acknowledge major life events by sharing them publically with friends, family and community. We invite others to witness both our joy in marking a marriage with a wedding, and our sorrow in loss with a funeral.  Ceremonies such as these provide a support system as well as a sense of being part of something larger than ourselves. The Donor Dash is a public event that brings together hundreds of families with a common experience.  Although donation takes place in isolation, at the Donor Dash it is evident that each family is not alone, but belongs to a much larger community; those who generously supported organ and tissue donation at their time of loss.

Rituals usually follow a traditional form. For example, although weddings and graduations vary in format, we know one when we see one. Sponsored walks for causes like breast cancer or organ and tissue donation awareness are newer events, but they, too, are familiar and recognizable. Being part of a tradition can also provide a sense of continuity and connection to a cause. When donor families walk together, they commemorate their loved one by doing something that the person who died would have appreciated; by honoring a cause that they contributed to in the most meaningful way.

Symbolic objects and acts in rituals often contribute the most meaning. Symbols transcend words to express our emotions and beliefs, and connect us with those we remember. Looking out over the crowd at the Donor Dash, what is most noticeable is the colorful teams in bright shirts. These shirts, often with the name and photo of the donor, are vivid symbols of the love that doesn’t end with death. The act of walking together is also symbolic. In facing the same direction and going forward together, we bring our loved ones with us in our hearts and memory. Together we remember them, we honor them, and we bring them along with us into the rest of our lives.

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In grief we often feel alone and isolated. Rituals help us mourn and heal. We hope that the Donor Dash provides a meaningful opportunity for remembering your loved one as well as a better understanding of how grateful the community is for their gifts.

To learn more about the Dash or to create your own team in honor of your loved one, please visit www.donordash.org

Melissa Coleman – A Very Grateful Kidney Transplant Recipient

March 12th, 2015

melissa coleman

“I unexpectedly found out that I had a rare kidney disease called Focal Segmental Glomerulosclerosis (FSGS) after applying to volunteer at Children’s Hospital of Philadelphia in 1996. For 8 years, I underwent a myriad of tests, scans, biopsies and surgeries.  I had to start dialysis in 2004 when my native kidneys failed.  I chose the peritoneal dialysis modality so I could perform it at home and work during the day.  Basically I had two full-time jobs:  saving my life and paying my bills.  After enduring being hooked up to my dialysis machine every night for four years, I was given the gift of life and received a kidney transplant on August 26, 2008.  I consider this date my new lease on life birthdate and am forever thankful and grateful my donor and hero, Sean Clegg, and his parents, Gail and Andy, for giving me this awe-inspiring second chance!

I am honored to be one of Sean’s living legacies and I strive daily to pay my gift forward.  I am extremely fortunate that my personal and professional lives have become intertwined, and am proud to work at Hahnemann University Hospital in the Abdominal Transplant Program, where I’m able to showcase the benefits of transplantation.

If someone would have told me in 1996 when I was diagnosed with FSGS that I would be living such an awesome life post-transplant, I would have thought it was crazy and far from reality. While waiting for my transplant, I dreamed of traveling and getting my passport stamped once again.  The gift of life that Sean has given me has allowed me to fulfill this dream. In 2011, my Mom and I were able to go to Paris to celebrate my 40th birthday and to visit Israel in 2012.”

melissa coleman 2

Melissa currently works at Hahnemann University Hospital and is a steadfast volunteer with Gift of Life Donor Program along with her donor, Sean’s, mother, Gail Clegg.  We are grateful every day for this awesome pair who work tirelessly to promote organ and tissue donation.

 

Family Support Blog Series: Gearing up for Camp – Grief Camps for kids

March 10th, 2015

Gearing up for Camp – Grief Camps for kids

Kimberly Rabago, MSW

Soapbubbles-SteveEF

Even though the weather tells us differently, summer will be here before we know it! In the coming weeks most parents start thinking about what activities and camps they plan on sending their children.  However, if you have recently experienced a death of a family member, getting organized and researching camp programs may seem like a difficult task.  Plus, you may question whether sending your child/children to a camp to talk about their loss is a good idea.

When we think of traditional camps, we tend to think of swimming, making new friends, arts & crafts, camp songs and roasting marshmallows at the fire. Funny thing is…this is what usually happens at a grief camp!  Just like a “normal” day camp experience, a grief camp offers children a space to play, share their stories and make new friends with other children who are living similar loss experiences.  Even though, as hard as we try as parents to make sure our children are coping well, many children do feel isolated from their peers as they cope with a loss.  Attending a grief camp offers kids an opportunity to be surrounded with children coping with similar or the same type of loss, which allows them to feel less alone in their grief.  Along with that, they also may gain validation from others that how they are feeling is normal based on what they are experiencing.  While there are traditional elements to a grief camp, there are unique activities they offer:

  • Age-based support groups usually facilitated by a professional trained in grief and loss;
  • Team building exercises to reinforce that they are supported during this difficult time;
  • Memorial or remembrance ceremonies to honor the person who died. These can be a balloon release or a stone personalized with the name of their loved one to add to their home garden.

When making a decision about a grief camp for your child/children it may be helpful if you come together as a family to decide if there is any interest in attending. Most camps have professionals available who a parent can speak to and ask questions before signing your child/children up.  The overall hope when sending your child to any camp is that they are able to connect with others, have fun and be able to be a kid. The goal of a grief camp is the same.  Sometimes, following the death of a family member children feel as if they are now “in charge” of the family or shouldn’t have fun anymore.  Allowing them to meet others who share similar stories can allow them to be a kid again and be very helpful in their healing process.

Here are some local camp ideas. If any of these camps sound appealing, please call and speak to someone affiliated with the camp. Please note that neither the writer nor Gift of Life Donor Program have any affiliation with any of the camps listed below.

 

Pennsylvania

Camp Millie – The Center for Loss and Bereavement, Skippack, PA

http://bereavementcenter.org/

Camp Charlie – Safe Harbor, Abington, PA

http://www.abingtonhealth.org/services-specialties/childrens-health/resources/safe-harbor/#.VP4PqDJ0y2w

Camp Erin – Jamie Moyer foundation

http://www.moyerfoundation.org/

Camp Courage: Millville, PA

http://bereavementcamp.org

Camp Chimaqua – York County, PA

http://www.hospiceandcommunitycare.org/_additional-pages/camp-chimaqua.html

 

Delaware

Camp New Hope – Delaware

http://www.delawarehospice.org/programs-services/family-support-services/new-hope/

 

New Jersey

Camp Firefly: Medford Lakes, NJ

http://www.moorestownvna.org/web/frontend.php/page/index?pageld=MjE=

 

 
 

© Gift of Life Donor Program, 401 North 3rd Street, Philadelphia, PA 19123
    800-DONORS-1 / 800-KIDNEY-1

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