MORE the Merrier

         I have the best big sister in the world, I wouldn’t trade her for anything. But I would have loved a little brother or sister to get to nurture and protect like Linsay did for me. This past year my wish came true and I gained two little sisters and a little brother. No there isn’t another little Brent or Cathy running around out there, my little siblings were delivered to me by MAGIS Syndrome.

         As of right now, there are 4 people in the world living with this gene mutation and last Friday I got meet one them— Princess Jadalyn.

         When I was at the National Institutes of Health at the beginning of November, my doctor informed me that they discovered another patient who had MAGIS Syndrome. She wanted my permission to give my contact information to this family. I instantly agreed and was pleasantly surprised this family lived in West Virginia. I hoped I would get to meet them someday in the near future. 

      The end of November I received the sweetest note from Amanda Childress, Jadalyn’s mother. She told me who she was and a little bit of Jadalyn’s story. Right away I saw what a special and strong girl she is. Born as a preemie, this princess fought for her life as she entered this world, but God gave her a  persevering spirit from the start. In just the 11 years Jadalyn has been on this earth, she has endured more than most people do in a lifetime. She has multi-organ system failure, severe combined immune deficiencies, mitochondrial disease, encephalopathy with lactic, hypothyroidism, dystonia atrophy, and pure autonomic nervous system failure just to name a few things she battles and this just scratches the surface. 

         Needless to say, my heart broke for this little girl, but I was so excited to get to meet this tiny warrior. Amanda and I set the date of February 8^th for my family and me to meet Amanda, Darin, Maleigha, and Princess Jadalyn.

My family made it first to the Olive Garden in West Virginia and were seated. I decided to wait in the foyer to meet the Childress family personally. When Jadalyn walked in I noticed she wore a beautiful dress and it blessed my heart so much to see she obviously wanted to look extra special to meet my family and I. When she realized I was standing in front of the door, her face broke into a smile and she flew into my arms. The connection we made was quick and strong. She brought me a beautiful plaque that said, “She believed that she could, so she did,” because she said, "me and her can do anything." 

She also picked out a special rose for my mom, grandma, sister, and I. Mom got a white rose, Grandma received a red rose, a hot pink rose went to Linsay, and she picked out a yellow rose for me. Each rose blinged out in glitter.

         Right away, I saw the similarities between the Childress family and mine. The number one thing I admired was their faith and love for God. Amanda was the strong matriarch and advocate, giving all of her time and energy to her daughters just like my mother did for my sister and I. Darin was the steady and consistent strength that his girls could depend on as my Dad was for us. Maleigha’s love and protective spirit for Jadalyn mirrored Linsay and I’s relationship. And of course, I saw so much of myself in Jadalyn, who had fought so many of the same diagnosis’ I have but still wears a smile on her face. 

 The prayer of all of us for the night was that our meeting would go smoothly and the conversation would be easy. The Lord went exceedingly above and beyond and we became family. The humor, wit, and strength emanated from Jadalyn’s spirit as she beamed listening to her mother share stories about her princess’ encounters with Jesus glowing brightly as He protected her why she slept. And she grinned when Amanda told us of the angelic guests who have come for dinner that only Miss Jadalyn was able to see and assured her family that he loved them and watched over them. 

         Her childlike faith is amazing and it showed in my favorite story Jadalyn’s father shared with us at dinner. Their church was having an Easter play and Jadalyn went to her Sunday school class. Unbeknownst to Darin and Amanda, the children were watching the play and Jadalyn saw that “Jesus,” was attending their church that night. When Darin and Amanda went to pick Jadalyn up, she was livid with her parents. “Jesus was upstairs and you know how sick I am and you didn’t take me to get my healing! Why did you take me downstairs when Jesus was upstairs with you?!” She exclaimed.   

Eventually, Jadalyn’s parents were able to get her to the man who played Jesus that night. Their friend laid hands on Jadalyn and prayed a powerful prayer asking God to heal the little girl. “We have been able to see Him in absolutely everything, throughout all the hardships and struggles. Jadalyn is so very happy and knows that God is going to heal her.” Amanda shared.

The night ended with pictures, hugs, and plans to meet again soon. It’s been a huge blessing to not only get to meet this sweet girl, but to get to pray for her, because I know exactly what she’s going through. When I came up with the name MAGIS Syndrome, I envisioned patients just like Jadalyn who know they are MORE than their disease and who would maybe become like family to me and this has happened. The four MAGIS siblings have fought many battles, but we’ve had so much joy on the journey as well. It can be a tough disease to live with, but when God gives you people who not only understand, but you can lean on…well, the MORE the merrier! 

When Did it Become True?

         Monday night something amazing happened to me. 

         Not at a writers conference or in a church service, although equally amazing things have happened to me during both of these events. While making dinner this thought crossed my mind…I’m a writer and a speaker. In the comfort of my own home, completing a mundane task, it became true. I have a degree in creative writing, I’ve managed my personal blog over a year, I have had articles published on websites, and received rejection letters. I have attended three writing conferences, won a writing award, written plays for my church and been blessed to speak at several different venues since I was 16 years old. And yet when people ask me what I do, I stammer trying to find a simple answer that explains my complicated situation, while not giving my life story. I don’t know why I didn’t feel I could just simply answer, “I am a writer and a speaker.”  

 I believe the reason is that it had not yet become true to me. My heart did not allow itself to believe this fact. But for some reason in the stillness of doing an everyday task, I claimed the calling and purpose God has placed on my life. Standing in my kitchen, what I believed God called me to do someday, became who I am today— My name is Whitney Lane Ward and I am a writer and a speaker. I am a writer who is working on several manuscripts in hopes these stories will be published someday to encourage others who have diseases that there is hope for their future. The world may have convinced them a disease will only give them a life of misery and “can’t,” but my words will show them they will have a life filled with joy and “cans.” I am a speaker who just launched my inspirational speaking website, MORE- https://whitneylaneward.weebly.com. Wherever God opens doors, I will share with anyone who needs to be reminded of this truth: God created them to be MORE.  

When did it become true for you? When did your calling and purpose become MORE than what you hoped to do in the future, but settled over you to define who you are? Let’s encourage each other! Let’s uplift each other in the fact that we all have worth and meaning. Let’s reassure each other that we were put on this earth to accomplish something.  I invite you to comment and share with others so they will know that moment is possible and they will be able to someday say- My name is...and this is who I am.

All Life is Worth Celebrating

I have already been faced with the question if I’m planning on bringing life into this world because of my disease.

I’ll never forget the day when the genetics counselor at the National Institutes of Health, (NIH) sat me down to discuss my newly discovered gene mutation. With a serious face, she asked this question- “Will you want to have children if you could potentially give them this mutation?”

My response was equally serious. “Yes, I do,” I told her. “I have lived a great life and if my child has this same gene mutation, they will live a great life as well.”

Having MAGIS Syndrome has made me passionate about many things. I’m passionate about the fact that I am MORE than my disease. I’m passionate about the fact that MAGIS has given me a story to share. I’m passionate about my life mantra that I’ll define my disease and surpass every limitation it sets in my path. Most importantly, I’m impassionate about life.

I believe without a doubt that life begins at conception. Whether a life is a six-week baby fetus or a 100-year-old person, that life should be celebrated. Whether my baby gains my gene mutation or another illness for that matter, their life will have meaning. 

     If my mother’s doctor knew I had a gene mutation when my mother was pregnant with me then there’s a good chance my parents would have been sat down to discuss their “options.” Had they believed in options and not wanted a child with extensive health issues, then there’s no doubt what they would have chosen. But look what they would have taken from me. You see, six years ago God began healing me of this disease and I’m the healthiest I have ever been, getting to experience things I never dreamt I’d get to do. I've gone on six mission trips, three of which have been overseas, I graduated from college with a Bachelors in Creative Writing, I’m a Sunday School teacher at Rubyville Community Church,  I work out at the gym, I’m going to writing conferences and meeting amazing people who share the same passion for writing, and I’m a volunteer for the Immune Deficiency Foundation where I can encourage other people who have immune deficiencies that there is hope in the midst of their circumstances. My doctors can only agree there’s no other explanation to my health other than I’m a miracle. So had my parents believed choice was better than life look what they would have taken from me- A life full of opened doors. A life full of opportunities. A life full of victories.  

I know Mothers and fathers who find out they are going to have an ill child have many reasons of choosing other options instead of life and I believe it’s because the focus is on the pain and the “cannot” their son or daughter will experience in life. But the focus should be on the joy and the “can’s” they will experience in life. I can say this because I am a CAN who could have been a CANNOT.”

Believe me, I don’t understand why a person in a supermarket aisle is dying from cancer, but the person right beside them in that same aisle is perfectly healthy. My mind can’t comprehend why an adult with a disease has a wonderful quality of life with a long lifespan, but a child with that same disease dies before they even have a chance to live. It boggles my mind and I probably won’t have the answers this side of Heaven. But here’s what I do know… the life of that person who had cancer and the life of that child who died way to young had purpose, meaning, and worth.

Scripture even proves it in Jeremiah 1:5 which says, “Before I formed thee in the belly I knew thee: and before thou camest forth out of the womb I sanctified thee, and I ordained thee a prophet unto the nations. I mean How amazing is that?! We have a purpose, meaning, and worth even before we are conceived! Way before we are even a thought on this earth, we are a thought to God.

The time will probably come in the future where I will have life growing inside of me, a son or daughter who could be born with MAGIS Syndrome. Whether my child never lives to be placed in my arms or whether they live to give me grandchildren they will never doubt this fact: Their life had a profound impact on mine, their life gave mine worth, and their life was celebrated.