The Real Housewives of Benton County: Elisabeth Parker: Keeping the Faith

I met Elizabeth 4 years ago when she took Baby Class with her first son Judah. Elisabeth has this warm and calming presence. She is a good person. She is a good mama. And.. Elisabeth has been faithful and hopeful during some very difficult trials. Elisabeth has been an amazing example to me of someone who really gets what is important in life and lives with a grateful heart. Thank you for the beautiful person you are Elisabeth. I hope you all enjoy this interview. I learned so much, including some great tips for how to be helpful and interact with a family going through hard times, especially when you really want to be there for them but don’t know the best way!

K-Elisabeth, you have had quite the intense year +. Tell us a little bit about the journey you have been on with Ezra’s health since birth.

E-On the morning of April 20th, 2013 we welcomed our sweet, little Ezra. For a couple hours, all was well with the world. Even after a very intense and painful labor, I was doing quite well, and so was Ezra (or so we thought). I can’t remember the exact moment, or the exact words that first brought news of Ezra’s medical issues, but nothing in the world could have prepared us for the frightening journey we embarked upon that day.

The days that followed Ezra’s birth, days that should have been filled with joy and happiness and getting to know our sweet boy and establishing our family of four, were filled with so much sadness, so much worry. Before I even had a chance to recover from giving birth, we were whisking Ezra away to doctors’ offices and hospitals. At the beginning, the prognosis looked good. I remember optimistic words from doctors like, “He looks great! This all will probably clear up on it’s own.” Followed too quickly by much less optimism, confusion and head scratching…for many months. There were more blood tests than you could possibly imagine, ultrasounds, genetic testing, and multiple sedated procedures. It wasn’t until Ezra’s second bone marrow biopsy at four months old that we finally had our diagnosis: Juvenile Myelomonocytic Leukemia (or JMML – survival rate 50%). In a typical child, the only hope for a cure for JMML is aggressive chemo/radiation and bone marrow transplant (ie many grueling months of hospitalization, followed by many, many more months of recovery and medications and isolation…in a best case scenario). We immediately began the search for a donor (starting out by testing our then 3 year-old-son, Judah, to see if he was a match), Ezra underwent surgery to implant a feeding tube because the doctors thought that he was failing to thrive, and he began an oral chemo regimen to stabilize his blood counts and shrink his dangerously enlarged spleen.

Those were some of the longest and most difficult days of our lives. Our story took a turn, though, at six months old when Ezra’s last round of genetic testing revealed that in addition to JMML, he also has a genetic disorder called Noonan Syndrome. Of course most parents would be devastated to learn their child has a complex genetic disorder…but we refer to it as the best worst news we ever received. For some reason (that is much too scientifically complex for me to wrap my head around), children with BOTH Noonan Syndrome and JMML can go into spontaneous remission WITHOUT bone marrow transplant. And we’re happy to report, that after two months of chemo, more vomit that you can possibly imagine, countless more blood tests, and eight months of keeping him at home, Ezra is JMML-free and we have officially been released from the oncology clinic at Doernbecher Children’s Hospital..hooray!

K-I have to admit that I had never heard of Noonan Syndrome before hearing about Ezra. Tell us more about Noonan Syndrome and the impact that it has on daily life for little Ezra and your family.

E-I’ll admit that I had never heard of it either! Noonan Syndrome can be genetically inherited or spontaneous (like in Ezra’s case). It is considered a rare disease, but could be as common as 1:1,000 to 1:2,500. It is variably expressed and can affect any or all systems of the body including unique facial features (like extreme cuteness;)), small stature and growth problems, heart defects, bleeding problems and blood issues, various cancers, GI problems, vision problems, hearing problems, and a wide spectrum of other issues. Thankfully, Ezra has not been affected by any heart, hearing, or vision issues (although he will undergo routine screenings for those the rest of his life). Obviously blood cancer and blood issues have been at the forefront of our concerns, but he also has had complex growth and GI issues and food allergies. He still has the feeding tube in his belly, but it was used mainly to administer his oral chemo medications after his JMML diagnosis and today at 16 months old he is solely breastfed and enjoys a wide variety of pureed foods by mouth (although he still has a highly sensitive gag reflex which keeps us all on our toes at mealtime). His growth is VERY slow so we have been advised to keep the tube in place *just in case,* but in the meantime, we do our best to pack in every extra calorie possible by mouth to help this little guy gain weight.

Since this past April when we started leaving the house with Ezra again, our lives have mostly returned to “normal.” We still have a long list of doctors and specialists, but we have seen our schedule go from multiple appointments a week to only a couple times a month! We have been able to space our trips up to Doernbecher’s to every few months…and we are hopeful that trend will continue. Ezra is the sweetest little boy and just rolls with all the punches that come his way. We have every reason to believe that even despite having Noonan Syndrome and all the various medical issues that come along with it, Ezra will go on to live a full and happy life. We have heard of parents, and scholars, and doctors with Noonan Syndrome…so the bar is set pretty high for this kid (no pressure, Ezra).

I want to add that there is a lot of outdated information out there, so for anyone wanting to learn more about Noonan Syndrome, I encourage you to visit http://www.teamnoonan.org/ for some of the most accurate and current information available.

K-You have been in my heart and prayers a lot over the last year. I know that you must have had many extremely emotionally and physically exhausting days. What gave you hope and strength to face another day in the midst of your trials?

E-During the earliest days I was fueled by crazy amounts of postpartum adrenaline and in the weeks and months to follow, a whole lotta prayer. There were days I felt like we were walking through the valley of the shadow of death, but my faith in God, that he would give me the strength I needed, pulled me from the depths of my despair. Because dramatic as that might sound, having an incredibly ill child and not knowing what is wrong with him for months and months, or finally hearing, “Your child has a rare form of leukemia, the survival rate is 50%,” is one of the most difficult things a parent can face.

There were so many scriptures that I clung to like Romans 12:12, “Be joyful in hope, patient in affliction, faithful in prayer,” that I recited over and over. There was our amazing family, church, friends, friends of friends, and even complete strangers who encouraged us and prayed for our family. There was my husband Josh’s co-workers and our wonderful community that raised so much money for Ezra we never had to worry about a single medical bill and could focus all our attention on getting him the care he needed. There was discovering an amazing support group of other JMML and Noonan Syndrome parents (that I continue to rely on on a daily basis). All of these things combined gave us the strength to face each new day.

K-You and Josh just celebrated your 10 year anniversary, and I really could feel your love for each other during our walk and how much you care for each other. What advice do you have for how couples can stay strong while caring for a sick child?

E-I am so blessed to have such an amazing husband and best friend. He is the strongest, most positive, most supportive person I know…I could not have gotten through the past year without him and am so thankful that he is my partner in life. When couples vow, “in sickness and in health…” they probably aren’t thinking about the health of their future children. But that’s what that vow encompasses. I know without a doubt, mine and Josh’s commitment to support each other throughout those trials with Ezra’s health not only got us through them, but made our relationship and our love grow even stronger.

Our advice to other couples facing a similar trial is unconditional love, support, and a whole lot of grace. Caring for a sick child is HARD. It can bring even the strongest person to their knees…and to see your partner at their lowest (and sometimes ugliest) point is not easy. But to love them and support them through it is so powerful. Use each other’s strengths, be each other’s cheerleader, always communicate with each other, do whatever it takes to work as a team. You are so much stronger united than you could ever be apart.

K-What new perspective, inspiration or insights have you received about life over the last year?

E-I’ve learned about a whole other world of sick children. I’ve seen and heard unimaginable things in the children’s hospital and in my JMML and Noonan Syndrome support groups. But I’ve also met the most amazing, courageous and resilient parents and children. It has given me a new appreciation for my health, my kids, and my job as a mama. It has also given me a new sense of purpose. I feel like I have been given this opportunity to educate people about juvenile cancer and genetic disorders like Noonan Syndrome. It is now my mission to spread awareness and help destigmatize these conditions.

I’ve learned how to be grateful amidst adversity and how to celebrate small victories. We are so overjoyed by the fact that Ezra is alive and (relatively) well, it makes each new day just a little bit sweeter. And after a year of so much heartache and worry and uncertainty, we are truly making up for lost time by celebrating every chance we get!

K-Often times when you see someone you care about going through a difficult time, it is hard to know how to help. I often feel like I might say the wrong thing or that I won’t know how to really help someone. I’m sure that there are times when you want life to feel normal and to just have normal everyday conversations with people instead of continually talking about your trials. Do you have any tips or dos and don’ts based off of your experiences?

E-When someone is in survival mode in the middle of a crisis, it IS hard to know what to do or say. Here are some basic do’s and dont’s:E

  • DO reach out to your friend/family member when they are facing adversity…calls, texts, Facebook messages, etc.
  • DON’T be silent because you’re uncomfortable or don’t know the right words to say. For your friend/family member to feel disconnected from their support group when they’re facing adversity is so much worse than the tiny possibility that you might say something wrong to them. A simple, “I’m so sorry you’re going through this,” or, “I’m thinking about you/praying for you,” goes such a long way.
  • DON’T be surprised if you don’t receive a reply right away…or ever. People in crisis don’t have much time or energy to devote to anything but survival.
  • DON’T let your own pain and sadness over the situation get the best of you. It’s hard for someone in crisis to feel like they are also responsible for comforting you when they are the ones in survival mode.
  • DO offer to visit, but don’t be surprised if this is not for the best. Sometimes it’s a matter of a person being too sick to be exposed to outside contact. And sometimes the situation may just be too overwhelming to process in the company of others. This one varies from person to person, so just try your best to follow whatever cues your friend/family member is giving you. And for sure respect any safety restrictions that may be in place, regardless of your desire to hug and love on and see your friend/family member face to face.
  • DO ask if there’s anything you can do to help. The answer might be no, but it never hurts to ask. If the answer is yes, always follow through! (We found ourselves saying ‘No’ a lot, sometimes it’s just hard to accept help! But, we never refused a gas or restaurant gift card…those are two fool-proof ways to help just about anyone!).

K-I know that you are a person with a lot of talents and interests. What are some things that you are passionate about?

E-So much of my identity revolves around being a mother, and now especially around being the mother of a child with special medical needs…the best job and biggest blessing in the world. But there is more to me than that:)I love art, architecture, and interior design. I love crafting and working with my hands. I am obsessed with simplifying and organizing. I love writing on my blog every now and then. I am so passionate about music and travel. Some of the most exciting, fulfilling times of my life have been performing (mostly singing) in various settings and when I traveled throughout Europe either with choirs, during my time studying abroad in college, or with my husband before we became parents.

K-What brings you peace and happiness?

E-Peace comes to me through my faith in God…through prayer, meditating on scripture, singing hymns, and in nature. I am at peace nursing my children (Judah until he was two and Ezra now at 16 months)…there is something sacred about that special, quiet time of closeness and bonding with your children. Having such a loving and supportive relationship with my husband brings me peace as well.

 Happiness comes to me through spending time with my family and living in such a beautiful part of the country and in such a wonderful city. Family bike rides, walking through the farmers market on a sunny Saturday, enjoying local foods and beverages, hanging out with my hubby after the kids have gone to bed, the Beavers winning, reading books with my boys, singing, and traveling all bring me so much joy.

Rachel Harrington - August 26, 2014 - 12:06 am

From my experience, I would change the last bullet to *don’t* ask what you can do to help. When people asked me that I would say, “We are doing okay. We don’t need anything.” What worked better for me was when Jesse said, “we are starting a meal train. Is Monday, Wednesday, Friday enough? Or do you need more?” (Note the Love and Logic strategy of giving a choice where both outcomes are acceptable. :) ) Or when my mom asked me to think about when she could fly down and then just bought a ticket anyway. Or when Katy said, “I want to do a garage sale and give you the money. You don’t have to help. I just wanted you to know.” I could go on and on about my family, my coworkers, and my friends. You get the idea.

Elisabeth - August 27, 2014 - 8:51 pm

You’re totally right, Rachel. It was awesome when people said, “We’re going to set up a Caring Bridge, fund, meal train, etc. for your family…” because people like my husband and I have a hard time accepting help, and that way, we couldn’t say no :)

Elisabeth - August 27, 2014 - 8:52 pm

You’re totally right, Rachel. It was awesome when people said, “We’re going to set up a Caring Bridge, fund, meal train, etc. for your family…” because people like my husband and I have a hard time accepting help, and that way, we couldn’t say no because they didn’t ask :)