A few months ago, Jana woke me up one night after I had gone to bed. I looked up at her and she had tears in her eyes. I became very frightened and asked her what was wrong. She told me that a Thai couple’s daughter (from the awareness center she visits regularly) had died in June from heart surgery complications.
The other day we went to have breakfast with this couple.I had never met the couple but Jana had become friends with them through the Rainbow Room (Awareness Center). The husband is Thai and studied at Georgia Tech in which he got his PHD in engineering. The wife studied in San Francisco where she got her Master’s Degree. They both lived in Atlanta for several years before moving back to Thailand to help their families. Their daughter was born in April (a year early) and actually played with Marley several times at the Rainbow Room. It was very sad to look at pictures of their daughter on their IPAD and see Marley pointing and trying to talk to the girl in the pictures. I have no doubt in mind that she recognized the girl from playing together at the Rainbow Room.
As they took us through their story it made me very sad and very nervous. Their daughter had a hole in her heart and the hole started forming into a valve. They took her in for surgery but after the surgery her heart was pumping blood correctly to the lower part of her body but it was also pumping blood without oxygen to the upper part of her body. Within a few days she became very sick and they had to have another emergency surgery. She did not make it and died. The couple told us that they took her in on a Tuesday for what they thought would be a routine heart surgery and left a week later without their daughter.
I can’t begin to imagine what life would be like without Marley around. I have told you in the past that when she was first born I had a hard time with her disability. I still struggle sometimes with her limitations but her personality now melts my heart. Even when I get mad at her; her little pucker face makes me smile. I know death is part of life, but on the same note, what do you say to a couple that just lost their only child at one year old? I often question God about the events that happen around me, but I have to believe that God can bring good out of this situation. In the past it was very easy for me to say this is life, but now that I have a daughter with Down syndrome I can understand the pain this father must feel. Right about the time that he was beginning to accept this new person and love her; she is snatched away by death. The only good news from all of this is that we spent about two hours talking to them on Sunday and they are very excited about meeting in the future. The reality is that the healing process might take a long time but I believe that is exactly why God placed us in BKK.
My son and has Down syndrome. He was born with a massive ventricular septal defect. His heart was repaired at Childrens National Medical Center in Washington D.C. I’m saddened to hear about your friend’s loss. If your daughter still needs surgery, I couldn’t recommend a better place than Childrens’ in D.C. Dr. Richard Jonas is amazing. Just google him. Many blessings to you and your family. Thank you for sharing your story.
For what it’s worth, I’ve always believed through my darkest moments: “God doesn’t give you anything you can’t handle”.
Sadly it looks like you both are very capable
You’ll be all right, she’ll grow up loved and you’ll reflect back at the challenges in your life as nothing more than fleeting moments in time.