Thinking back to those early days...
I got to meet the most precious new Mom and her baby with Down Syndrome this week, and it brought me back to those early days when our James was born... I loved holding this little guy and talking with his Mom as she shared her journey with me.
When James was born 15 years ago, we were just like everyone else...shocked, unprepared, and totally overwhelmed by our son’s diagnosis.
We started on this journey with a feeling of grief... grieving over our hopes and dreams for James...yet at the same time, we were absolutely falling in love with our sweet baby James. I remember those first few days... not knowing what to expect. We had never met a person with D.S.. I remember praying “God please help him to eventually be able to tell me what he needs and what makes him happy.”
We named him James before he was born with lots of hopes and dreams of the contribution he would make to this world. In our days following his birth, we finally turned to the book of James in the Bible... and found that passage that says “Consider it pure joy when you face trials of many kinds...” At that moment, I felt that God was saying “As I give you James, count it all joy now- You have no idea what joy this baby will bring you... trust me... you have followed me for many years... you can trust me on this... by faith...trust that this gift of James will bring much joy... it is part of my plan for you.” I remember feeling such a supernatural peace, grace and joy just flowed all over my soul... and I just settled in to loving and enjoying my baby. After all, he was more than anything- my baby. His D.S. was just part of who he was... he was precious...
As we were settling into our new reality, we realized that he was having trouble sucking.
We were in the Philippines as missionaries. We had good healthcare, however, we did not know anyone who could help us with James’ delay in his “suck/swallow/breath” issues. We took him home and 6 weeks later, he still couldn’t suck and was starving to death. We took him back to the States and immediately they started working with him at the hospital, teaching our little guy how to suck and swallow. It was a scary time for us in that during this 7 week time, his body was shutting down and he almost died so many times. We are so grateful to our doctor and to the staff at Cox Hospital in Springfield, Mo. who valued our tiny little baby, who did everything they could to save his life, and who understood what we were going through. The speech therapist taught him how to suck, and taught me how to help him. We were amazed at what they could do to help him. After he made it through the initial health crisis, they sent us to the Development Center of the Ozarks where they taught us all about Early Intervention. When James got back up to his birth weight, they let us go back to the Philippines. By this time, we were so in awe of how God had saved his life. The thought that kept coming to me was- “I am so grateful that James made it... I would rather have James with the Down Syndrome and all that means- than to have lost him....” After all, my baby was James first... darling baby boy... very loved...valued...precious... little survivor....and he just happened to have Down Syndrome....We were on a new road... a new journey... we were in a new club...one that no one chooses to join. However, we had no idea what joy our James would bring... By the way, my prayer that James could be able to let me know what he needs and what makes him happy is answered every day....We deal daily with the struggles, frustrations and challenges that come with D.S.. These realities do not take away the good times. James is a pretty happy boy and delights us regularly with his antics! My hope is that with our story, other families will be encouraged and that they would be able to see the joy and precious life that God has entrusted with them. We may have challenges... but we have a lot to look forward to!
