Contemplating a Lifetime of Serving My Child with Special Needs
When you have a child with special needs and a seemingly profound diagnosis, panic can creep in. Each month of little progress seems to slowly dismantle your expectations for the future. Maybe you see progress, but it is painfully slow. “So, what if this lasts his whole life. What then?” I know I am not the only parent who has considered such thoughts.
Mrs. Barbara Tartt seemed like the perfect person to talk with about such fears. I met Mama Tartt (as I affectionately call her) several years ago when we carpooled to a church women’s retreat together. Her daughter, Melissa, has been a treasured friend of mine for a few years longer, and it was a treat to finally meet her mother that day. Barbara is a petite woman with an infectious, joyful personality. Those who come in contact with her are attracted to her kindness, like a moth to a flame. She simply glows with the joy of the Lord.
Barbara and her husband, Orson, have four grown children, and one of them was born with Down syndrome. Matthew is now 37 years old, and Barbara has faithfully cared for him each day of his life.
I knew I was in for a good conversation when I thanked Mama Tartt for taking the time to speak with me and she confidently replied, “Well, my time is not my own.” What wisdom! I couldn’t wait to hear what else she had to share with me.
Responding to a Special Needs Diagnosis
“Matthew was born on the 4th of July,” Mama Tartt began, “just after we had moved to Pittsburg. I already had two young girls, Melissa and Allison. In that time, you did not do early screenings for information about the child before they were born. I found out Matthew had Down syndrome after he was born when I overheard a conversation between doctors in the delivery room.”
“The medical personnel at the hospital were a bit standoffish toward me. They didn’t know how to approach me. Thankfully, even though it was a holiday, my pastor dropped everything to come to the hospital and pray with us.”
“It took time to process it, and the experience was not pleasant. When I envisioned my family, I pictured having a son named ‘Jason.’ This was not my Jason. I asked the Lord to lead me to the right name for the son he gave me. I chose Matthew...it means ‘gift from God.’ I asked for a beautiful child, and God gave me that.”
God’s Hand Woven Throughout
Barbara shared that God had used different parts of her life to prepare her for having a child with special needs. Her younger cousin had also been born with Down syndrome, and he was a teenager by the time Matthew came along. His name is Shawn, which also means “gift of God.” Barbara also had opportunities to work with children with special needs before becoming a mother. By God’s mercy, raising Matthew was not going to be uncharted territory. The Lord knew what He had planned for Barbara, and he intended to get her ready for the task assigned.
One of the most beautiful parts of the conversation was listening to her speak about taking Matthew to church. At first, the venture was challenging. When they took him to be dedicated to the Lord as a baby, she cried through the whole service. Even though it was tremendously difficult, Barbara knew she needed to surround her family with her church community. She brought her children to church every Sunday and would have to sit in the balcony in the last row.
“He was a pistol at church,” she laughed.“He used to fight me every time we went into the building, and then one day he began pulling me into church. I know he has a special relationship with Jesus. You can see it in him during the service. He rubs his hands together when he is enjoying the message. Matthew is considered to be non-verbal. However, he says just one word: Jesus.”
Advice for a Parent Receiving a Special Needs Diagnosis
Mama Tartt’s joy in being the caregiver for Matthew is beautiful, and she is quick to say that she draws her strength from the Lord. When I asked her what advice she would give parents receiving a diagnosis in which doctors indicate that their child might never live life independently, she shared these guiding principles:
Embrace your relationship with the Lord. Be in His Word. Remember that with God, there are no accidents, and this is just the way He wants it to be.
Appreciate the joy your child can bring you. Embrace and accept them. Look beyond the disability and hang on to progress.
If you are married, make time for your spouse. Your children need both of you. Strive to keep your relationship with one another, even expressing your love for each other in front of your children.
Talk to your child. It is utterly amazing how much children with special needs understand, even if they are non-verbal.
Try not to compare your tribulations with others. Rejoice with those who rejoice. Weep with those who weep. Everyone’s trials look different.
Truth to Stand On
As we closed our time together, I asked Mama Tartt to share the verses that have been dear to her heart throughout the years. Without hesitation, Barbara quoted Psalm 71:1: “In thee, O Lord, do I put my trust: let me never be put to confusion.” She explained, “There are times in my life that I thought my mind would blow up. I always go back to this psalm to remember that trusting in the Lord keeps me from losing my mind on hard days.”
“I also pray this passage from Colossians for all of my children,” she continued. “And so, from the day we heard we have not ceased to pray for you, asking that you may be filled with the knowledge of his will in all spiritual wisdom and understanding, so as to walk in a manner worthy of the Lord, fully pleasing to him: bearing fruit in every good work and increasing in the knowledge of God; being strengthened with all power, according to his glorious might, for all endurance and patience with joy; giving thanks to the Father who has qualified you to share in the inheritance of the saints in light” (Colossians 1:9-12).
What a beautifully comprehensive prayer to pray over your child, regardless of their health or abilities! I came away from my conversation with Mama Tartt feeling lightened and hopeful. Her words were a balm to my often worried heart. I found it powerful that she repeated throughout our conversation, “Matthew is such a joy. I just love him.”
While the world might view caring for a child into adulthood as a burden, Mama Tartt counts it all joy. For those of us waiting in the little years and wondering how it will all turn out, I pray we would soak in these words of wisdom from the other side and remember that truly, our time is not our own.
About the Author
Mary Brantley Meade lives in Atlanta, Georgia with her husband and three young children. Her background is early childhood education, and she most recently received a masters in counseling from Westminster Theological Seminary. When she’s not counseling or writing, you can find her enjoying the outdoors with her family.