Kingston James Whitmore's Testament

KINGSTON JAMES WHITMORE ~ FULL TRISOMY 13 ~ AGE 29 MONTHS

My 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.

Kingston is nothing like the doctors told us he was going to be like. Yes, he has had his share of medical struggles but what they don’t tell you is how these children are completely capable of loving someone and having an emotional exchange and connection. Kingston is such a fighter and almost never complains (or cries) unless he is in severe pain. He has a smile that lights up any room and you can’t help but fall in love with him. His enthusiasm for life is so evident. He has taught me that nothing is worth complaining about…If he can sit there and smile at me after just having eye surgery, breathing with a trach in his throat, eating with a tube in his tummy, barely seeing or hearing and not have a bad attitude about it, then I sure have nothing to complain about. He is always such a good sport and makes the best of any situation. He has such a contagious joy that you can’t help but become overwhelmed with happiness when you look at him. When I’m having difficult days and feel like I don’t know how much longer I can go on, K reminds me that no battle is too big or too hard for the Lord. He is a motivator and a world changer. He is a constant reminder of the Love that our Heavenly Father has for us. He finds so much joy in the little things that we may take for granted like taking a bath or letting the wind blow through our hair. It’s funny but I actually think the wind is his favorite thing…you let wind blow across his face outside or push his hospital bed really fast down a hallway (so he can feel the rush of the air on his face) and he will laugh for 5 minutes straight!! He has such a genuine love and appreciation for every moment in time…even the seemingly insignificant ones. Bottom line, Kingston James lives a happy and thriving life. He has made me a better Mother, wife and woman in general and he has taught me far more than I will ever teach him. I am honored to be his Mother and as long as there is breath in my lungs I will always fight for him and all trisomy kids. We believe that some day, our Kingston James will be walking around carrying his King James Bible and sharing with the world what God has done in his life! Thank you for allowing me to share his testimony with you. If you would like to see more about his journey, please visit this link at YouTube.com http://www.youtube.com/watch?v=GZINNWrQqjo

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!! 

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~  Vanessa

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