Tribe Support

One of the missions we have at the Tribe is making sure others never feel alone. Below we would like to introduce you to some of our Tribe parents and share a little bit of their testimonies with you. We hope that if you find yourself in need of fellowship or direction, you will not hesitate to reach out to one of us. When we ourselves were navigating some seemingly impossible journeys, the wealth of knowledge and support from others who had walked these paths before us was priceless.

“You were called to travel on the same road and in the same direction, so stay together, both outwardly and inwardly. You have one Master, one faith, one baptism, one God and Father of all, who rules over all, works through all, and is present in all. Everything you are and think and do is permeated with Oneness” (Ephesians 4:4-6 MSG).

---

I was laying in bed after just getting home from work when I received the news that there was a 93% chance my unborn baby would have Down syndrome. That was also the day that we learned we were having a little girl! A few months later, the second test results came back confirming we were definitely having a little one with something extra.

We decided on the name Sandra Jo for our baby, but planned to call her “JoJo”. JoJo’s mom did what she did best in situations like these, and she began researching and educating herself on all that having a child with Down syndrome entailed. She educated me in the process as I was doing what I do best – ignoring it. I thought “so what if she has Down syndrome?” I was confident that I wasn’t going to love her any differently. I did not care about the diagnosis; all I cared about was having a healthy baby. Boy, was I ever wrong! JoJo’s something extra sparked something extra in me.

Every good parent has endless love for their children, but this child brought something out of my soul that I didn’t even know existed. She was born five weeks premature. Her mom had labored all night while I was at work thinking it was false labor. I rushed her to the ER that next morning like something you see on the movies. JoJo was born less than an hour after we arrived, and she has been dancing to her own tune ever since.

Since coming into the world, JoJo has had many challenges that should have broken her, yet her spirit remains untouched. She’s happy and smiling all the time. I’m here to tell you – it’s contagious! When it seems like I can’t take anymore because the world is weighing so heavy on my shoulders that I can’t move, she smiles and it all gets better. She giggles and everything that was eating away at my soul disappears. And it’s not just me she does that for – it’s everyone she comes into contact with. It’s truly amazing to witness the power of her smile.

They say God doesn’t give us more than we can handle. Well, I have come to believe that is not true at all. There are times that my heart just cannot handle her and the amount of love she has to offer. It explodes and I cannot stop the tears that come with it. So, my statement is this: God very much gives us things we cannot handle. He sets obstacles in our path that we can’t overcome alone. He brings people into our lives that fill us with joy and love to the point that we break and our defenses are shattered. God gives us what we need no matter if we can handle it or not, and I needed my JoJo. I still do, and I always will. Her extra chromosome was the one that I was missing – the love chromosome.

I am blessed and proud to be the daddy of a child with Down syndrome. I am grateful for all of the other parents who have given me the privilege of spending just a few moments with their special children. These people were put here with us as a reminder and as a blessing. In my opinion, it was to show us that love and compassion are the fix-all. They spread joy and happiness to all they touch.

We are truly the lucky few!

~Steven

---

My son’s story actually started a year and a half before he was born. His mother and I had been trying to have a baby and were having some trouble conceiving. To cover all bases, we were both tested to see if we had any underlying health issues. Lo and behold, they discovered I had a tumor on my pituitary gland. This small little gland at the base of the brain controls every function in the body, including reproduction. Had we not found this tumor, my life would have most likely ended within a couple of years because the tumor was aggressively growing. 

A few short months later, the tumor was removed and the doctors told me that chances were very slim that I would ever have children. This news was very devastating to me, but we did not give up. I prayed a lot, asking God to give me a chance to be a dad. Six months later, He answered my prayer.

Like most other families, we were excited to find out the gender of our baby. I wanted a son, and on the day of the ultrasound, Ethan was very active and showed us all that he was in fact, a boy. I was over the moon! Then the ultrasound tech kept taking measurements and jotting notes in the computer. Since I was a first-time expecting father, I didn’t realize this wasn’t normal. After about 30 minutes or so, she excused herself and went to get our doctor. 

I will never forget the next words that I heard: “your child has all the markers for Down syndrome. If you look here, you will notice the neck, the shorter limbs, and the bones in the nose. All of these signs point to Down syndrome”. Shortness runs on both sides of our families, so I asked if that might be why he was measuring short. She looked me right in the eyes and said “I’m sorry, but I am positive your baby has Down syndrome.” 

I knew nothing about Down syndrome, so I spent the days leading up to our high-risk pregnancy appointment at Vanderbilt trying to learn all I could. I did not realize how unprepared I would be for that day. At our appointment, the doctor told us we had a week to decide what we were going “to do” and there was a test they could perform to find out whose “fault” it was that our baby had Down syndrome. Before I could catch myself, I was on my feet leaning over this doctor’s desk telling him he had one minute to get me a new doctor because there was no way we were terminating the pregnancy.

A few short months later, we went in for a regular checkup and ended up being kept overnight. On November 1, 2006 Ethan “The Artist” made his entrance into the world. That was the day my life changed forever. I lost my own identity that day. I am now “Ethan’s Dad”, and I must say, I love that. 

Ethan has been thru so much in his life so far. He had open heart surgery at three months old. He’s had multiple surgeries on his ears, including a tumor removal surgery when he was eight years old. This cholesteatoma invaded through all the hearing bones in his ear, leaving him partially deaf. Recently, he’s underwent additional ear surgery as another cholesteatoma formed in his other ear. Now, with the help of his hearing implants, he hears better than he ever has.

Through all of these trials in his life, Ethan has remained the same. He’s a happy, eager, fun-loving young man. He always greets everyone with a hug, somehow intuitively knowing they need one. He makes beautiful artwork and happily donates his proceeds to non-profits. These are just a few of the reasons why everyone who meets him falls in love with him.

When you think about being a parent, you think about all you are going to teach your children. Little did I know, that I would be the one being taught. Ethan has taught me patience and unconditional love. He has taught me that it isn’t the end of the world when then things don’t go as planned; everything always turns out alright.

My hope, is that everyone gets to meet and feel the love that our kiddos with something extra have to offer. If people would spend just a few minutes with them, they would see the world like they never knew was possible.

It is true, that the extra chromosome that individuals with Down syndrome have is the love chromosome. Ethan may never be able to do all the things that some other kids can, but I guarantee, he can out-love and out-hug just about anyone!

Ethan, I love you more than you will ever know.

~Stephen

---

Romans 8:28 “And we know that all things work together for good to them that love God, to them who are the called according to His purpose”.

This verse has never been more true for me in my life.

December 24, 2011, is the day that changed my life for the better. On this day, I gave up all I had to take a chance on a new relationship with my now husband and his son, Ethan. Ethan was 5 years old at the time and did not know me from a hill of beans. I got to meet him on Christmas morning and we instantly had a connection and have been inseparable since. Did I mention that Ethan has Down syndrome? He has that “something extra” that makes him the marvelous, talented, stubborn, loving, and kind hearted person he is. He also happens to give the best hugs ever! He possesses the ability to know when something is wrong with a person…even when no signs are displayed. If I am having a rough day, a hug from him just melts it all away…seriously!

In my years with Ethan, I have first and foremost become his Mama T (he named me this and it has stuck with me ever since), his teacher, his advocate, his nurse, cook, chauffer, and the list goes on. People who are not familiar with Down syndrome think they are unable to do anything and won’t amount to much in life. Let me tell you, Ethan could teach many people a thing or two about love and giving from the
heart! He is one of the most amazing artists and he never keeps any of the money he raises for himself. He gives the money he makes to non-profits and to those that need it. He is one of the most non-materialistic and selfless people I have ever met in my life. He embodies
the Bible verse 2 Corinthians 9:7 “Every man according as he purposeth in his heart, so let him give; not grudgingly or of necessity: for God loveth a cheerful giver”. And a cheerful giver perfectly describes Ethan….he gives of his money, his time, and his talents willingly and with love.

Ethan has been through so much in his life, from open-heart surgery, to cholesteatoma’s (tumors) that robbed him of his hearing (and almost his life) and now he has 2 Osia cochlear implants that allow him to hear. Through all the bad he has had to endure, he has never let that
rob him of his joy. Proverbs 17:22 says “A merry heart doeth good like a medicine…..” He has the merriest heart and it is apparent to all who have the pleasure of meeting him.

We are beyond blessed to be a part of our amazing Three Twenty-One Tribe where we advocate, educate, spread awareness, and raise funds to help all of our friends with special abilities!

~Tammy

---

November 4 ^th, 2020, I delivered my daughter, Stella Sarai, stillborn at 20 weeks and five days. Her life and death have changed me to the core of my being. The trauma of losing her (and the miscarriage I had earlier in the year at just six weeks along) will forever be a part of me. But over time, the grief that boiled up inside of me – the grief that was always trying to choke me out at every turn – well, it spilled out as goodness. That is how I know that God was with me! I know it for certain because I, Desere, am too weak to convert such pain into love; to expose my own heartache and use it for His glory.

Because of the support of the Tribe, I was able to start making “Blessing Boxes” in Stella’s honor. Since 2021, everyone who loses a baby at the same hospital where Stella was born (Cookeville Regional Medical Center) gets to bring home with them a little box of love from the Tribe. And because of the outpouring of support we have received since starting these boxes, we were able to create a second fund in 2022 to send Blessing Boxes to families outside of CRMC as well. Stella’s boxes have been sent all over TN as well as to MA, LA, and FL. But the best thing to come from this project has been the friendships of other loss parents, and the inclusion of their angel babies in our mission to spread awareness and support.

As Christians, we are called to “Bear one another’s burdens, and so fulfill the law of Christ” (Galatians 6:2 NKJV). That is no longer just a scripture to me. It’s a living, breathing call to action. It’s a pain in my chest that whispers to me there are others out there hurting like me who need to be loved on, taken care of, and advocated for. Pregnancy loss is so isolating because people don’t know how to talk about the uncomfortable; they don’t want to talk about it. That’s where our brothers and sisters-in-loss come in! Because we do want to share about our babies. We do want to include them in our daily lives. And our loss family not only empathizes with all we went through in loss and grief, but in all we hope for in preserving memories.

At some point, I started feeling like I needed to open myself up and share Stella’s story, as well as my own. I was so nervous and fearful of judgement from others about what I was feeling, but I knew how much hearing from other mommas like me had been mending my heart. So, I took the scary plunge and wrote a few different pieces that I posted on social media as well as on a blog for people like myself who use writing as part of their healing journey. Then, about a year and a half after losing Stella I felt led to give a spoken testimony – something so far out of my comfort zone that I still can’t believe I did it, but Stella has given me a bravery I never knew I was capable of! This time, I wanted to be transparent about the PTSD, anxiety, and fear that had been crippling me post-loss (https://youtu.be/wernN1–VdQ). I truly hope you will not have to wrestle with any of these emotions on your grief path, but if you do, please know that you are not alone in them. And whether or not you want to share your own story publicly, you never have to suffer in silence.

Everyone’s grief and healing journey will be different. Mine is a messy collaboration of tried-and-true personal restoration, advice from seasoned grievers, and peace from the good Lord above. I share with you hoping that maybe something will speak to your hurting heart as well. But the most beneficial thing to me, was the support and prayer of others. This is what held me up when I was unable to do so myself.

Please feel free to reach out to me anytime. My prayers are forever with you.

~Desere

---

My name is Brent and I am the Chaplain for the Tribe. My wife and I have three children here on earth and another two who were born into the arms of their Heavenly Father – one who was lost shortly after we found out we were expecting and another who was delivered stillborn during my wife’s fifth month of pregnancy.

We were at the routine anatomy scan when we were told “Stella doesn’t have a heartbeat today”. I was in disbelief. I kept telling the ultrasound tech to check again, all the while saying desperate prayers. And when the only sound that filled the room was sobbing – instead of a little heartbeat, all I felt was pure malice.

Stella was born later that same day. After holding my little girl, I didn’t think I was going to make it out of the hospital. Then, God gave me the vision of our Stella safe in His arms. I am so thankful for my faith in Jesus, and I am so grateful to Him for dying on the cross so that we can live again in Glory. Because of Him, I know I will get to spend Eternity with all of my children.

Seek Him whenever you find yourself facing unbearable pain and you will find peace. Be blessed.

~Brent

---

I am a wife, mom of five children, and a special education teacher. Children are my purpose in this world. I know that the Good Lord gave me this blessing and gift to serve Him. With that being said, raising children and educating special needs children in this modern world isn’t for the weak. When you hear the words, “Your daughter has Leukemia,” your knees hit the ground and you find out exactly how strong you are. You realize how much you need God and the support of others to exhibit this strength.

I should start with a little background. My oldest four children are all amazing boys. When we added our fifth and last child to our family, we were blessed with a little girl. Charlee Sue was the perfect addition to our family. When you have four older brothers doting on you, you are indeed a princess.

My children were always healthy, other than typical childhood ailments. During Charlee
Sue’s Kindergarten year, she became sick and I couldn’t put my finger on what it was. She had
allergy symptoms, low grade fevers, nausea/vomiting, leg pain, bruises everywhere, and eventually knots in her neck. I took her to the pediatrician three times in two months. The doctor kept blaming it on Covid and being a kid. My mom instinct knew this wasn’t the case and I kept following up. One day, her teacher walked her to my classroom because she was so worried about her. She was so fatigued that she couldn’t even hold her head up off the desk and had intense dark circles under her eyes. I knew we were waiting on bloodwork to come back from the pediatrician that she had drawn the previous day (that I had to push for). When the lymph nodes in her neck started swelling and bruising right in front of me, I decided not to wait on her doctor. I loaded her up and took her to the closest ER. After bloodwork, Charlee was
immediately transported by ambulance to Monroe-Carroll’s Pediatric Hospital at Vanderbilt. My husband, Jeremiah, met us there.

They kept telling us they thought it was a form of Leukemia, but I kept praying for them to be wrong. By 6am on October 21, 2021, after running tests on her all night, our sweet Charlee Sue was diagnosed with B-Cell ALL (Acute Lymphoblastic Leukemia). Our whole world was turned upside down. I had left the room to call and check on my boys. When I came back in, my husband told me the doctor had come in and confirmed the diagnosis. I went to the bathroom, hit my knees, and had a meltdown crying into a towel so my daughter would not hear me. After a bit, I prayed for strength for my child and strength for us. I knew my feelings and emotions at that moment were insignificant compared to the fight she was about to have to endure. I wiped my tears, sucked it up, and went back into the room with Charlee and my husband while we absorbed the news and listened to the doctors. All I can say, is my husband is a rock and we both needed him. That’s a hard load for him to carry – always having to be the strong one for all of us.

Her blood cells upon being admitted were 86% blasts. This means her blood cells were 86% overtaken with Leukemia cells. Upon further testing, the team was relieved that the cancer had not spread to her spine or brain stem. We had to tell our four boys by video phone afterschool that day that their sister had cancer. To see your children hurting and scared, but not be there to comfort them is another challenge all on its own. We had a great support system with my parents, his parents, and my sister-in-law. They took care of our boys and our entire hometown also supported them. She was given blood and platelets, was put to sleep to have a port put in, endured intense chemo, and took lots of medicine. She spent 18 days in the hospital on this initial admission.

Despite the worries, hardships, and tears, the blessings poured in. By the next day, my Facebook was covered in “Team Charlee” profile pictures for everyone we knew, and even people we didn’t. People sent mail, money, food, gifts, and things we didn’t even know we needed. Money was raised, and our bills were paid. We knew those first couple weeks that we were in for a long gruesome road ahead, but we were not alone. The biggest comfort to me was two cancer parents that I had never met who reached out to me. I relied on them so heavily the first few months. They knew exactly how I felt and gave me hope. They told me what to ask the medical team, what to expect, and what we needed. God knew I needed these parents.

I then did what every mom and teacher does, and educated myself on everything there was to know about B-Cell ALL. My husband provided comfort to us both, but especially Charlee. She has always been a daddy’s girl. Our sweet Charlee Sue has endured many hospital trips, ambulance rides, lots of different kinds of chemo, lumbar punctures, ng tubes, and I could go on and on. She has been in the hospital more than some people will ever experience in a lifetime. I watched my beautiful, blonde curly-haired baby girl lose all her hair, lose weight, and become so sick. She is truly a warrior princess. She endured all these things, but never lost her smile. There were days we had to work extra hard to make sure that smile was still there, but she never lost it. We did everything we could think of to support her. We went bald with her, we played with her, we held her, and we always showed up as a team. She needed us both and we needed each other.

Her total treatment is 2.5 years. She is currently in maintenance and was able to go back to school this year. She still has roadblocks from time to time, but we can see the light at the end of the tunnel. Her fight started on October 21, 2021 and she will take her last dose of chemo in December 2023. Our Charlee Sue is destined for greatness and will influence many people in her lifetime. She already has. She is the toughest person I know. This battle will just be part of her future testimony. If this sweet, innocent little gal can kick Leukemia’s butt like a champ, then any of us can endure anything put in our paths. She always smiles and never complains. She inspires me to be strong every day.

The other parents I have met in this journey are what provided me the most comfort. They give you suggestions, love, emotional support, and hope. I have tried my best to provide this to other parents. Anytime I hear of a new diagnosis of a child with cancer in our area, I reach out. I try to be the support to them that others have been for me. If you need support, I would love to talk with you. Sometimes it helps just knowing someone is going through the same battle as you, and that you are not alone.

~Autumn

---