Eden and Chewy Tutu, her favorite support buddy.
“Do not grieve, for the joy of the Lord is your strength.” Nehemiah 8:10
This post will be different from any I have written in the past. It is very personal to me and the story has cut to the core of my heart. In June of this year, I wrote a post about enduring the storms of life. I talked about being in those hard, difficult and scary places that you have to push your way through. This is one of those stories.
I am writing this post as an interview with a precious woman I have known for eleven years. Her name is Ann and her eight-year-old daughter is named Eden. Ann and I met during the time when we both lived in Illinois. I was a mentor for a MOMS church group that we both attended. Ann was assigned to my table and we both agree that God had a plan that would continue to unfold even years after we both moved away from Illinois. Ann is one of my spiritual daughters that holds a very special place in my heart. She is also one of the strongest young women of faith I know.
Allow me now to share Eden’s touching story through her mom’s words. I hope your heart will be as inspired as mine has been over these past several months.
Ann, will you give us a recap of how Eden’s diagnosis came about.
Eden had been having headaches on and off for 3 years prior to her diagnosis. Throughout these 3 years, we took Eden to her family physician numerous times without any answers. In August of 2017, the headaches picked up. Eden was having headaches that lasted all night long and they were often accompanied by nausea. Poor Eden would be awake all night crying in pain but then seemed fine during the day and was even able to go to school. Also, for many years Eden would simply fall asleep (at the strangest times during the day). We frequently joked that Eden “just couldn’t hang.” She would often fall asleep on the couch before bedtime or ask to go to bed early. In August 2017 the fatigue became worse. It got to the point that Eden would fall asleep shortly after getting home from school and sleep for hours.
After getting nowhere with Eden’s pediatrician, I decided to take her to an Urgent Care center one day after another sleepless night due to being in pain. I demanded an MRI which we got scheduled but it would be done many weeks later and not that day. We were told they couldn’t do one right then and there!
A few days later, we drove to Michigan to celebrate Thanksgiving as well as my brother’s wedding. Eden and her younger sister were scheduled to be flower girls for the wedding. Sadly, we soon found out that this was not going to happen, much to Eden’s disappointment. While we traveled to Michigan, we felt Eden’s health was getting worse. She stopped eating and drinking and would vomit often. She was very lifeless during the two-day trip. My husband had to carry her into restaurants and to use the bathroom because she was too weak to walk. We called Eden’s GI physician (because we made the choice to leave the current pediatrician) for advice and he said we had to take Eden to the ER when we arrived in Michigan. We arrived Monday night and Tuesday we took her to the University of Michigan children’s ER where Eden was diagnosed with a very rare brain tumor known as Craniopharyngioma.
Looking back, we now know that all these issues had been warning signs of a brain tumor that was about to change our daughter’s life drastically.
How has Eden’s illness affected the family as a whole?
Eden’s Craniopharyngioma has put a good amount of strain on our family. When the tumor was discovered, we were 19 hours away from our home in Colorado. We had 5 other children, a holiday and family wedding to work with while I stayed in the hospital with Eden and my husband bounced between helping with our other children at my parent’s house and coming to see Eden and me in the hospital.
At times, members of our family have been angry, sad, scared and confused.
To date, this disease has caused a great deal of stress on our family. I need to care for Eden daily. My husband and children have sadly needed to learn that I’ll get to them after I help Eden.
However, we have had many positives. One night, after Edens diagnosis, I was watching Eden sleep. I turned to my husband and told him that we needed to choose JOY! Our sweet 7-year-old daughter and our family were thrown this major curveball but we needed to choose joy. (Eden is now 8 years old since this journey first begin.) We didn’t know what Eden’s future would be like after her brain surgery which was just a few days away, but I told my husband we must still choose joy. I said we needed to praise God for the positives because there were so many. We just had to look for them a little bit harder at the time.
Eden’s illness has brought my family closer, even my family from Michigan. Everyone has stepped in and helped us with our children and anything else that needed to be done.
In addition, this difficult season has also brought my husband and me closer to being, first and foremost, more dependent on God and to seek him first every day. We have also learned how to be strong for each other while the other one is weak and also strong for our daughter and our other children. We’ve learned another level of extending grace to each other.
Our children have really grown up and become more responsible. They’ve been forced to care for each other, make meals, clean up etc. All the stuff I mainly did before. They have also had their eyes opened to see how God works. They have seen with their own eyes how good God can be even in the midst of a horrible situation.
I personally have come closer to God and have also learned to let go of the day to day little things like a traffic jam, a kid spilling their juice or someone with a bad attitude.
Eden with her parents and siblings.
What has been the most difficult thing you have endured since Eden was diagnosed with Craniopharyngioma?
Wondering if we are making the right decisions for Eden.
Can you tell us how this trial has affected your faith walk? Is there a scripture that has become a “lifeline” for you at this time?
It has strengthened my faith walk in a major way. Since all this has happened with Eden, I have seen with my own eyes, how the evil one was after Eden’s life. I saw it many times. I saw how the evil one tried over and over to steal our joy. This confirms to us that the Lord has a marvelous plan for Eden and that makes the devil freak out! I can often see how the battle between good and evil is being played out before my eyes.
The scripture I cling to is found in Philippians 4:13 and states: “I can do all things through Christ who strengthens me.”
Ann, what would you say is your biggest concern now and for Eden’s future?
Just the unknown. Eden needs to have a scheduled MRI every three months (and more often if needed) to check for more tumors as well as hydrocephalus (excess water in the brain tissue). Each time she goes for an MRI, we have to fight against the fear of allowing ourselves to think the worst. We are concerned with the unknowns regarding Eden’s future. These are some of the questions we struggle with.
Will she have more tumors?
Will she have a stroke?
Will she be able to have children?
Will she have adrenal insufficiency? (A disorder in which her adrenal glands do not produce the necessary hormones in her body to function well.)
Sometimes I worry that Eden will lose her joy or even become angry with God. But in the midst of all this, I always say that even though we do not know what Eden’s future holds, we do know Who holds her future.
Eden and her wall of cards filled with love, prayers, and joyful wishes.
Eden sounds the gong upon completion of twenty-nine rounds of proton therapy in Houston.
Eden preparing for a flight to Houston for follow up testing at MD Anderson.
Eden at the Ronald McDonald House in Houston, TX.
What is Eden’s most urgent need at this time?
A SERVICE DOG for Eden! Since Eden is now prone to seizures (either from the tumor or the radiation she received to her brain) at any time, a specially trained service dog is now a necessity! Her doctors continue to stress the need for one. A properly trained service dog would be able to alert us, as well as Eden, of an oncoming seizure. Needless to say, this type of dog is very expensive. They cost thousands of dollars which we do not have…yet. I say ‘yet’ because we are believing that through various fundraisers and the generosity of kind-hearted individuals, Eden will be able to get her dog soon. In fact, Eden has already named the dog that is somewhere waiting to come live with her and become her loyal protector and companion. JOY is the name that Eden has chosen! I think that is a very good choice.
JOY keychain fundraiser for Eden’s service dog.
Ann, please share one of the cutest/ sweetest/ or funniest things about Eden either before her diagnosis or since the tumor was found.
Eden’s wit. She might have a brain tumor, has had to go through brain surgery and twenty-nine rounds of radiation treatment, but she is still sharp and witty!
After her brain surgery and then two weeks in the hospital, Eden’s doctor requested that she and I remain in Michigan for an additional week before clearing Eden to travel back home to Colorado. My parents, Eden and I were in the car. My mom was telling my dad that they should not be discussing a business venture that someone they knew was going to start because it was not public knowledge yet. My dad was in agreement with my mom but added that since it was just the four of us in the car, the information would not go anywhere. Eden was only one week post brain surgery when she chimed into the conversation saying, “well if you aren’t supposed to be talking about it, then why are you talking about it!?” That silenced my parents quickly and we all burst out laughing.
Eden has always been witty but since her surgery, that wittiness has become even more apparent! She is very sharp and I often ask her in a joking manner, if the neurosurgeon replaced her brain with that of a twenty-year old’s brain.
Eden displays her humor shortly after her brain surgery.
If there has been a silver lining or a hidden blessing in this difficult season, what would that be?
This silver lining has been a total wake up call for us. We don’t take anything for granted. NOTHING! We have also learned to let go of the small things and I now often say “it is what it is” and move on.
Ann, is there anything else you would like to say or add as we conclude this interview?
I’d like to note that I really amped up my worship with everything that happened with Eden. There were times that I couldn’t pray because I was crying so much, so in those times I would just have my worship music on and sit, listen and cry. Eden loved the worship music too. We started “worship song of the day” and would post a song on Facebook every few days if one of the worship songs spoke to one of us.
When I was too upset to pray or praise God, worship music stood in the gap for me. One of my and Edens’ favorite songs is “Peace be Still” by The Belonging Co.
I also want to add this. Shortly after returning home from Michigan, my husband Brent admitted to me that he was angry with God. He blamed God for all this. He couldn’t understand how I was continuing to praise a God who gave Eden this tumor. As a result, he also became angry with me because of this.
I requested prayer from a few friends, asking them to pray for Brent and to help me navigate through this with him. He called me a hypocrite for praising God and worshiping the God that did this. I stayed the course and remained thankful for everybody’s prayers. Brent saw that I did not waver with my faith. He finally realized he was wrong (in his thinking) and as a result, it has brought him closer to God.
Without a doubt, I don’t think Brent would be where he is with his faith today if it wasn’t for (Eden’s) diagnosis.
Eden with mom and dad at MD Anderson in Houston, TX. Eden underwent weeks of proton therapy here.
Ann, please finish this prayer:
DEAR GOD, TODAY… I give you my day. Please help me to choose joy and to see how good things really are. Please help me to break the habit of talking about my problems and instead to talk about my joys. I want to choose joy and see your goodness (to us) even when life gets messy. If I am having a hard time in finding joy and all your good, Lord, please, I ask you to help me.
Choosing JOY for the journey one day at a time.
So here you have it my dear readers…the story of a sweet little girl who is dealing with some big stuff right now. This is Eden’s journey but I know she and her family are not traveling alone. If you would like to follow Eden and her story on Facebook follow this link: Eden’s Journey
Eden has a Go Fund Me page set up for the cost of her service dog and still needs $5100.00 to reach the goal. For more information or to donate towards the funding page for Eden’s service dog, please follow this link: Eden’s Joy
If you would like to purchase several of Eden’s JOY KEY CHAINS you may contact Eden’s mom via email at Choosejoy777@yahoo.com
To all my dear readers, thank you for taking the time to read this story. I ask for your prayers for Eden and her family as they continue to navigate through these unknown waters. And if you feel a nudge in your heart to help in any way to help Eden reach her dollar amount goal for her dog, I thank you in advance for your giving hearts. God bless you, everyone.
Photo Credits: All photos in this blog post have been used with permission from Ann Bernard.
Note: This blog post was written by Rosie Williams and first appeared on Nuggets from the Heart. This blog post, either in part or in its entirety, may not be copied, duplicated, edited or appear in any other publication without the written approval or permission from the author. For full copyright and disclosure information, click here. For questions regarding the use of this blog post, you may send an email to Rosie Williams by clicking here.
Ann is a dear friend of mine and she has always shown God’s light through every adversity. Not surprising that she would choose Joy as they walk through this valley experience with Eden. God will surely get the glory!! Love you my friend and believing God’s best for you all!!
Thank you, sister, for sharing this story about Eden and how to choose joy in every situation.
What an incredible story of being tested by fire. I am praying for this dear girl, her mother, and their family – may their faith not fail!