Conner a precious miracle, an amazing creature sent to Carl, Brenden and myself, one cold snowy January day. From the second he entered our life, I knew in my heart he was so incredibly special. His first smile, his first cry, even his first breath, he was, and remains beautiful. Conner is such a sweet, loving, and happy boy whose smile lights a room. His eyes have an amazing twinkle that makes me melt. Conner was the picture of health, so strong, so beautiful. He has given us countless hours of smiles and cuddles and a lifetime of love.

      When Conner was 6 1/2 months old he was unable to sit up, even with assistance and unable to grasp or reach for toys. Intermittently his head would droop down and we couldn't explain it. As a concerned parent and pediatric nurse I voiced my concern to his pediatrician. It was recommended that Conner be evaluated by the county's infant and toddler program; although everyone thought he was just fine. As nurses tend to do, perhaps I was over-reacting, all children develop differently. Conner had made little progress the following three weeks, so I made the appointment.

      At the time of his evaluation, the county team thought he was perfect physically. He has learned to sit just a few days before the appointment and he was showing to be physically advanced for his age in strength. He could bear weight on his legs and push up so high when on his belly. The team did recommend that Conner have an eye exam because he was not reaching for toys and he was looking down so much. Everyone thought this was just a shot in the dark, especially because he is so social. He will see me across the room, and without even a word, his face beams with smiles.

       I took him to the pediatric ophthalmologist at age 7 1/2 months. She immediately observed the cherry red spots. She informed me that she believed he  had either Tay-Sachs or Sandhoff Disease. I was simply blown away, for I knew what that meant. Not being Jewish, I never thought to worry about such diseases. We were sent immediately to John Hopkins to see a pediatric genetic ophthalmologist. She confirmed the cherry red spots and discussed the two diseases with my husband and I. We were so saddened, so heartbroken, so devastated. We had many dreams for our little boy, and in one quick moment, they were crushed. I remember vividly the exact moment when I learned my precious son was going to die.

      A few days later, Conner turned 8 months old. We had a birthday party for him, when he got his first taste of cake. He loved it!!! This was important to me because the next day was our appointment with Dr. Tifft (geneticist and D.C. Childrens). This was the day, I dreaded. I knew Conner was going to die, but now I was going to have to hear it officially from a specialist.

      When Dr. Tifft first saw Conner, she thought he looked amazing. She wouldn't have known that he had Tay-Sachs. During the consultation, I tried to remain strong and composed. I fought so hard to contain the tears. I was telling myself that I must remain strong for Conner and my family. I tried so hard, but soon succumbed to the overwhelming emotion.

      Conner is now 9 months old. He continues to do well. He can sit up for sometimes 5 minutes unassisted and is lighting up our lives with his cute crinkle nose smiles, as I call them. That's when he smiles so big that his nose get this perfect little wrinkle in it. Some days are better than others, his strength is variable. He is cutting two more teeth, to bring his total to four.

      We all love him so dearly and it is hard to imagine life without him. Unfortunately, life has dealt us an affair hand, and it appears that our time with him is limited. This is a harsh reality that I must face head on. I must do what I feel is right in my heart and attempt to overcome this adversity and heartbreak. I am his mother, I carried him inside of me, I gave birth to him, and our bond is a very special one. Conner has only been on this earth for a short 9 months, and already he had touched so many lives. Conner is a truly special and wonderful child whom has helped us to recognize the greatest of gifts "life". Life is truly a miracle and much too short.

      I am plagued every moment of every day, that there is nothing I can do to make my sweet and innocent baby healthy. It is a cruel reality that I will have to sit by and watch a part of my heart and soul die. I cry and pray everyday for Conner. I am going to make whatever time Conner has left on this earth filled with family, wonderful memories, and most of all, love. I do not have the luxury of time with my son.  I can do nothing but follow my heart and make the absolute best of whatever time God grants me. My mission to honor Conner is to educate all populations on these terrible diseases, so they may be eradicated.