Sheila Harkin’s 21 Story

Sheila’s 21 Story

I grew up in a community of missionaries who were serving on a rural mission station in Africa in the 1970s.  These men and women had made huge sacrifices to leave the U.S.A. to offer services through medical care, education and teaching and showing God’s love.   They lived in conditions that were often difficult.  As missionary kids we spent our time building tree houses and forts, riding bikes, playing in the mud puddles during rainy season, catching chameleons and red velvet bugs, hunting with bb guns and slingshots, and so much more—Sanyati was our home and we loved it!

One of our MKs, Grady Fort, had a booming voice, an infectious laugh, a constant smile on his face and a heart full of love for all of his missionary family.  He loved music and always requested for us to sing “Do Lord” at mission and station meetings.  He also loved to come to our house, put on his favorite record and keep time with the rocking chair.  Grady was several years older than my sisters and I and we would love to run up to the back of the rocking chair and hold it back for just a fraction of a second so that it would get him off-beat.  Grady would yell “Sharon!  Sheila!  Susie!” and come chasing after us!

Grady was the fifth son of doctors Giles and Wana Ann Fort.  In Wana Ann’s book A Thousand Times Yes http://www.amazon.com/Thousand-Times-Yes-Doctors-Answered/dp/1596693835  she shares honestly the struggles and confusion she experienced when Grady was born and they realized that he had Down Syndrome.  As busy missionary doctors in the 1960s serving God in a location far from special needs help and support, this diagnosis was definitely not in their plans.  Here are her words as she describes the work that God did in her heart during Grady’s first week of life:

“God had mercy on me in that moment.  Grady’s condition was not going to change but mine was.  I will never forget the wonderful, comforting presence of the Holy Spirit in my bedroom that afternoon.  God assured me that He was going to make our experience with Grady in our family “all right.”  Those precious women and God’s Holy Spirit ministered to me. 

What I thought would be my suffering turned out to be a deeper walk with the Lord and an understanding of abundant life and joy.  Giles’s prayer that God would make us teachable was answered.  I was afraid that I wouldn’t know how to be a mother of a child with special needs.  I was afraid of failure.  I turned to the Father to help me, because I knew that Giles and I needed His direction on how to raise our new son.  Our boys, of course, didn’t have the initial reaction we did.  They were totally in love with their new baby brother.  Our mission family learned a lot, too, and Grady became everyone’s favorite.  And why wouldn’t he be?  He was a bundle of love from the get-go.” 

I haven’t seen Grady in many years, but my parents and sister saw him earlier this year and said he was the exact same Grady we grew up with—remembering everyone he came in contact with and loving each person.  Grady loved us all unconditionally and we loved him back.  He made an impact on all of our lives and we are better people for having grown up with Grady Fort.

Jen Norton’s 21 Story

Two years ago I was hopelessly stuck in a job I knew was going no where, a grad school program I hated and a lonely single life. After Marley was born Jana called to tell me she had Down Syndrome and my heart began to stir. I have loved Jana and Boomer as a best friend and big brother for more than 12 years now. They have a had a huge impact on my spiritual and personal life. I lived in Thailand and worked with them for two years. Walking thru all kinds of life with them, my heart was broken to hear their shock, devastation and confusion when We found out Marley had Down Syndrome. Because I lived in Thailand, I know the options for education there for a child with special needs are significantly difficult to find! God began to stir in my heart a desire to help special needs students. When Marley was a few months old I went to visit her in Thailand and the moment I saw her I was instantly in love! I knew I had to use my season of singleness to do everything I possibly could to learn how to give the best opportunities possible for Marley and other kids with disabilities. I came home from the trip to Thailand and changed my grad program to Special Education. The next semester I applied for a Special Ed job and began teaching at South-Doyle HS. I am now the SPED department chair. God began to use Marley as the inspiration for the tough days!! I am now able to not only gain experience in all areas of Special Ed, but God has used this opportunity to prepare my heart to minister and show Jesus to the ones the society sometimes doesn’t give a chance. I know that many of my students don’t have a voice and have no one to stand up for them. Marley’s life not only impacted the ministry side of my career change, but also my vision and hope for the future. After I gain experience working with students with all types of disabilities I hope that God will allow me start a program or school in other countries where there is no available opportunities for students with special needs. God used the precious life of our miracle Marley to change my heart and give me a new vision and passion for students #iftheyhadavoice. “Open your mouth, judge righteously, defend the rights of the poor and needy.” Proverbs 31:9

Katrina’s 21 Story

I wanted to leave my story about a child that changed my life that happens to have Down syndrome. She is technically not related to me but I am not sharing her story with you for a tshirt. I just need her story to be heard. You see, 2 1/2 years ago I found out that children born in Eastern Europe who have Down syndrome are normally given up at birth and put into orphanages. Then between ages 4 to 6 they are transferred to adult mental institutions. I had always loved working with children with DS and the thought of them being treated so poorly broke my heart. One day while looking at a website that listed some of these children for adoption, I saw a little girl with blonde hair and hazel eyes that I just knew was my daughter.

For 2 years we have tried to adopt this little girl. She was 5 years old when we started the process and now she is 7. Her mother left her at the hospital the day she had her and has never come back for her. She has no relatives that are willing to adopt her or visit her.

We flew to Russia in July of 2012 to met her. At first she was angry with us for taking her away from her outside playtime. Once we went outside and blew up a big ball though she decided we were ok. During our visit I was able to teach her some sign language (ball, book, more, cracker, again, dog, horse, monkey) She picked it up very quickly and was very excited that we were trying to communicate with her. We had been told that she did not speak but on the second day when I asked her if she wanted to look at the book or play with the ball she signed and said book.

On our last visit with her we tried to sneak on the playground and just observe her with her group. She was way across the yard when we came out but we could hear her yelling and screaming for us. She ran right up to me and grabbed my hand. They tried to pull her away to go back to the group but she was not going to have it. She knew we were there for her and she liked that feeling. She soaked up all the individual attention we came her that visit and kissed and hugged us goodbye.

We thought we would be back in 3 months to have court and then bring her home. Little did we know that the Russian government would shut down all adoptions leaving this little girl to grow up in an institution.

We have been telling our story everywhere so that people will not forget our sweet Natasha. We have been to DC to ask congress for help. We are praying that the meeting between President Obama and President Putin will bring about change and a way for Natasha to come home instead of growing up in an institution.

If you would like to see what we are doing and like our FB page please do so. You may share with anyone willing to listen. I have also included a link to our video showing just how amazing Natasha is. No matter what the outcome is she will have always inspired me to do more for those who have something a little extra special going on and she will always be my daughter in my heart. Thanks for allowing me to share her story here.
https://www.facebook.com/pages/300-Broken-Promises/455788397829850

Marcia Rigamonti’s 21 Story

Thank you for your honesty and willingness to let God change your thought processes. The most beautiful and completely unbiased compliment I ever received was from a young man, about 15 or 16 who had Down syndrome. I was all dressed up for a concert at our church and he came up to me and gently touched my shoulder and in a voice full of awe, quietly said, “Beautiful!” I almost started to cry because of his unsolicited open heart. Another young woman in our church who has Down syndrome gives the best hugs and greetings to everyone. I find myself hoping that she will “pick me, pick me” to give her next hug to. Her heart is full of love for everyone.

Cherish Every Moment

A few months ago, Jana woke me up one night after I had gone to bed. I looked up at her and she had tears in her eyes. I became very frightened and asked her what was wrong. She told me that a Thai couple’s daughter (from the awareness center she visits regularly) had died in June from heart surgery complications.

The other day we went to have breakfast with this couple.I had never met the couple but Jana had become friends with them through the Rainbow Room (Awareness Center). The husband is Thai and studied at Georgia Tech in which he got his PHD in engineering. The wife studied in San Francisco where she got her Master’s Degree. They both lived in Atlanta for several years before moving back to Thailand to help their families. Their daughter was born in April (a year early) and actually played with Marley several times at the Rainbow Room. It was very sad to look at pictures of their daughter on their IPAD and see Marley pointing and trying to talk to the girl in the pictures. I have no doubt in mind that she recognized the girl from playing together at the Rainbow Room.

As they took us through their story it made me very sad and very nervous. Their daughter had a hole in her heart and the hole started forming into a valve. They took her in for surgery but after the surgery her heart was pumping blood correctly to the lower part of her body but it was also pumping blood without oxygen to the upper part of her body. Within a few days she became very sick and they had to have another emergency surgery. She did not make it and died. The couple told us that they took her in on a Tuesday for what they thought would be a routine heart surgery and left a week later without their daughter.

I can’t begin to imagine what life would be like without Marley around. I have told you in the past that when she was first born I had a hard time with her disability. I still struggle sometimes with her limitations but her personality now melts my heart. Even when I get mad at her; her little pucker face makes me smile. I know death is part of life, but on the same note, what do you say to a couple that just lost their only child at one year old? I often question God about the events that happen around me, but I have to believe that God can bring good out of this situation. In the past it was very easy for me to say this is life, but now that I have a daughter with Down syndrome I can understand the pain this father must feel. Right about the time that he was beginning to accept this new person and love her; she is snatched away by death. The only good news from all of this is that we spent about two hours talking to them on Sunday and they are very excited about meeting in the future. The reality is that the healing process might take a long time but I believe that is exactly why God placed us in BKK.

Stories of People With Down Syndrome Changing Lives

If They Had a Voice - Character of Marley

If They Had a Voice – Character of Marley

Send us your stories about how a person with Down syndrome has changed your life.  If we choose your story for our 21 Stories section then we will send you a free t-shirt.  Stories cannot be about relatives.  Thanks and we look forward to hearing from you! on twitter @jackjanamarley #iftheyhadavoice

From TN to BKK

From TN to BKK

During college, Jana and I met at Sevier Heights Baptist Church in Knoxville, TN.  From the very beginning Jana told me that she wanted a man that truly followed God, and to teach overseas.  When she told me that, I didn’t really consider what she said, because she was so BEAUTIFUL, and I would have done anything to get a date with her.  So after a year of dating, we got married, and finished our graduate degrees before heading to Bangkok, Thailand.  

 Our first five years teaching at ICS (www.icsbangkok.com) was a very smooth transition for us as a couple.  We worked together ministering to the students we both taught and coached.  All of that changed on March 19th when our daughter Marley was born. 

The day Marley was born, I went straight to the nursery and held her for well over two hours. I just held her and cried because I had never experienced such a love for anyone or anything in my life. I think the Thai nurses thought I was crazy because eventually they told me I needed to go be with my wife.  Three days later, before we left the hospital, the Pediatric Doctor told us she thought Marley might have Down syndrome.

My reaction: Are you freaking kidding me?  I immediately had a panic attack and they took me down to the ER.  Thoughts were racing through my mind: How could my perfect daughter have Down syndrome?  How could they not know for sure?  How could the general ultra sound- that said we had a one in eighteen thousand chance of having a child with DS- be wrong?  Why was God punishing me?  How could I live with a daughter that was going to be rejected by everyone… including myself?

I entered into a deep depression for the first year of Marley’s life. My wife was so concerned about me that I started taking anti-depressants and seeing a counselor.  I contemplated leaving my wife, or giving my daughter up for adoption, and suicide.  I would lie awake at night thinking about my future, and searching for a reason to live.  I believed everything negatively the world told me about Down syndrome, and viewed it as a curse on my family. The entire time I worried about how this would change my life!  That is when I realized that my relationship with God was not where it needed to be, despite the fact that I had gone to a Christian University, been ordained in a Christian Church, and moved overseas to teach at a Christian school.

Years ago, before my father died or Marley was born, my father told me,

 “ If you wanted to fix a problem, then do something about it”. 

 That is what I did.  First I stared reading through Psalms to find comfort in the Scriptures.  Next I started researching and calling every family I could find that had a child with Down syndrome.  I owe a great deal to these families because they were willing to talk to me despite the 12-hour time difference between Bangkok and EST.  I also started forcing myself to interact with my daughter.  She was desperate for me to start loving her, and continued loving me until I broke down and did the same.  And finally, I talked to God.  I talked to Him just like He was sitting in a chair beside me.  I was open and honest about the entire process, and then I began finding peace.

 Healing is a process, a journey, and that is what prompted me to make this video.  I would have never experienced this life changing transformation if Marley had not been born.  It is true, there are difficult times having a daughter with Down syndrome. But it also true, that she is very much like any other child. Marley smiles, laughs, plays, is able to meet many developmental milestones (albeit her own pace, with her own style), makes mistakes, and most importantly- completes our family.  She literally brightens my day every time I see her. 

 The “Medical Community” focuses on so many of the challenges associated with Down syndrome, that we developed this unnecessary fear -just because it is different.  The truth is I am a better person today because of my daughter, my daughter that has Down syndrome. I am thankful for a wife that was willing to push me to change, and support me when I struggled.  Mostly I thank God for Marley.  I remember praying while waiting those first two weeks to get her confirmed diagnosis, “God if you heal my daughter, then I will give up my own salvation”. God didn’t need my salvation- that was a gift from Him to me, just like Marley is a gift to us.

The reality is that I am still saddened that Marley has Down syndrome, but I am beginning to realize that God can bless us regardless of our circumstances. I will never be able to fully understand why Marley has Down syndrome, but I do know she has made a difference in my life, my wife’s life, and in the lives of so many in our community. 

Please share our website and video with your friends, because children with Down syndrome can change this world in ways we cannot.

From TN to BKK

We Have T-Shirts

We Have T-ShirtsIfTheyHadaVoice Shirts

We have ordered 100 t-shirts to help with our If They Had a Voice Campaign.  (AS, AM, AL) Will you help us raise awareness about Down syndrome and purchase your #IfTheyHadaVoice T-Shirt today?

Shirts are 10.00 US Dollars Each / 5.00 US Dollars For Shipping / Total 15

If you are interested in ordering a t-shirt then please email me about payment and processing your order.

[email protected]

Remember that 9 out of 10 never get the chance, but what if they had a voice?

Speaking Engagements

Most Summer and Christmas breaks we travel to America to connect with family and meet with Marley’s various therapists.  Usually, while traveling, we speak at different churches and functions.  If you are interested in us sharing our story with your community (church, conference, etc) then please email us – [email protected]  We start planing our schedule early every year so please contact us in advance.  Thanks again for your support and we look forward to sharing our story with you and your community in the future.

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