KINGSTON JAMES WHITMORE ~ FULL TRISOMY 13 ~ AGE 29 MONTHSMy son, Kingston James Whitmore, is 29 months old and living with Full Trisomy 13. When he was just six days old, the geneticist came to our room and gave my husband and I his diagnosis. We both were overwhelmed with devastation and felt like we had just been hit by a MAC truck. Shortly after receiving this news, the Neonatologist came in and told us, “We aren’t going to do anything heroic, but we’ll keep him comfortable…Floral Haven (the local cemetery) has free infant burial plots and we have people from our Child Life department who would like to help you during this process.” Neither one of us could stop crying...We just held each other and sobbed in utter disbelief. We almost couldn’t believe what we were hearing. We told them that that wasn’t good enough and that whatever any of our other healthy kids would need or get, that that is what we wanted done for Kingston. Much of this came as a shock to us because prior to Kingston’s birth all that had been confirmed was that he had holes in his heart. We had toured our local NICU and prepared for heart surgery but little more than that. Although they did say there was a possibility that Kingston might have a chromosomal disorder they didn’t really think that was going to be an issue and because I had an emergency appendectomy when I was 8 months pregnant with Kingston there was not enough time for me to recover from that and still be given any type of accurate genetic testing. I had majored in Special Education just ten years prior to this. Little did I know how all that time God was preparing me for such a time as this…
I remember crying in Kingston’s room in the NICU asking my husband if he had thought about what he might say at Kingston’s funeral if he died. He paused for a minute and then said yeah, I thought about it but I don’t think we can focus on that…because if that’s what we think about, that’s the direction we will go in. I agreed 100% and since that day neither one of us has ever looked back. We weren’t in denial about the diagnosis but we knew that God’s Word supersedes man’s word. We are spirit filled Christians and chose to stand on God’s promises. The scripture, “Psalm 118:17 – I shall live and not die and declare the works of the Lord” has been what we have claimed for Kingston. In his 29 months of life he has been hospitalized somewhere around 320 days. Kingston has literally defied death multiple times. The most significant time that seems to stand out in my mind was two months ago when he got hypernatremic dehydration while in the hospital. Our Dr called Kingston’s room and said, “Kingston has life threatening dehydration. Call Victor now. He is probably not going to make it.” We called all the family in, pulled our kids out of school and began to pray just like we always do. I cradled his body, hovering over his hospital bed until he was stable enough for them to let me hold him, all while praying and speaking to him that he was going to live and not die and declare the works of the Lord! I reminded him that he was a warrior and that his Daddy and I were his battle buddies…that we would make it through this together. Long story short, he defied death and has left the physicians at our local children’s hospital stunned and speechless. All glory be to Jesus Christ!!
My advice to anyone just given this diagnosis for their child would be to decide what you are going to believe and stick to it. Focus more on how to LIVE with your child (no matter how short the time may be) instead of focusing so much on how to let your child die. No matter what the doctors give as a prognosis or what the nurses report or what tests state…you are the parent of your child and God’s Word says that YOU have the final say over your child. Claim what you believe and do not waiver. It has not been an easy road for us, BUT I believe it is our faith in Jesus that has gotten all of us this far.
We would like to thank Lori for sharing her amazing son with us. All of these amazing children have a testament to share, whether they touched this this earth for minutes, days, years , or only through their mothers womb. Never give up hope!!