Pia is a lawyer. She is also a daughter of a lawyer, Senator Rene Cayetano and sister of a lawyer, congressman Alan Cayetano. Her mother- Sandy Cayetano is an off term deaconess in the Church and a close family friend. A month ago, Pia wrote the following:
My son, Gabriel has trisomy 13. Trisomy 13 is a chromosomal disorder of the 13th chromosome. Instead of having 23 pairs or a total of 46 chromosomes, he has 47 because he has 3 chromosome 13. What does this mean? It means, that from the time of conception his genetic make-up is altered.
Trisomy babies have a very low survival rate because they just were not made the same way. Ailments include, heart conditions, kidney problem, recurring respiratory infections, gastro-intestinal problems, poor eyesight, poor hearing and other conditions.
Less than 10% survive beyond age 1.
Trisomy babies are normally expected to have low birth weight. But Gabriel was born 6 lbs and 15 ounces, my biggest baby so far. I bought him a few preemie clothes thinking, he would be tiny, but none of them fit. He didn’t have a crib, he didn’t have toys and had a very limited wardrobe because we were told not to expect him to live. Gabriel is 8 months old today and has lived long enough to know that he is loved dearly. But life is not easy for him. Things we take for granted, like breathing and eating is difficult for Gabriel. He is very susceptible to respiratory infections, he needs oxygen at all times. He has a condition known as G.R.E.D, which prevents him from eating normally. He has to be fed through a tube in his mouth.
But we try to make his life as rich as possible. Since he was in my tummy, he has been listening to music, mostly classical music for babies, nature sounds, nursery rhymes and Christian music. To be sure, he “feels” the music, we place the speakers face down on his mattress or against his pillow. He is surrounded by black and white toys, including flash cards his grandma made just for him. We read to him – nursery rhymes, children’s books and the bible. I encourage his caregivers to sing to him and talk to him a lot. Like any baby his age, he coos a lot, when he is well.
Considering that many trisomy babies don’t make it pass a few hours or a few weeks, I feel blessed that I have had the pleasure of cuddling Gabriel in my arms for many months now. I have seen the joy on the faces of my two girls, Maxie, 6 and Nadine, 3 when they see Gabriel and play with him. Despite our odd circumstances, Gabriel has lived long enough for us to become a family.
We don’t know what life has in store for him. When you have a baby who is fighting for his life and is constantly stricken by yet another infection, you pray for his health and comfort. You don’t want to see them suffer and yet you want one more day, one more year, in fact, a whole lifetime to be with them.
I believe in God and I believe there is a purpose for Gabriel’s life. He was not expected to live and yet he is living. I never thought I would have all this time to hold him, to curl his hair in my fingers, to close my eyes and get lost in his scent or to see his big eyes stare at me and look around his room as long as I have. Every day is a blessing, every day is one more day with my precious son.
Have I discovered the purpose? I don’t know. Maybe, Gabriel’s presence is simply God’s way of telling me, that He is the giver of life and that for now, He chooses to leave Gabriel in our care. If I were to look deeper, then perhaps God is also telling me that there are a lot of other kids out there who are not as ill as Gabriel but because their parents do not have the financial resources to give them medical treatment, they may be physically or mentally impaired for life.
Is it possible that God opened the door for me to have an educational toy store so I can help Gabriel and a lot of other kids like him? I’d like to think so. I am setting up my company in such a way that a part of our sales go towards aiding children in need. I’d like to be able to help more kids get a better education. I’d like to see 6 year old public school kids reading. I’d like to provide great benefits for my employees so they can be better parents. My son’s fight for his life has inspired me to keep on pushing…keep on striving to achieve all these things.
Can I do it all? Probably not all at once. But like we do with Gabriel, we take one day at a time. If he is healthy today, we are happy. Some day, I know I will have the satisfaction of knowing that there are a dozen or so healthier kids or a few more 6 year olds who learned to read, because we took the time to give them something we had. And when Gabriel is gone, I will have the pleasure of knowing that this person, my son, has taught me so much and that through him, others will live and learn.
What We Know About the Syndrome
Trisomy 13 (Pattan’s Syndrome) is a dreaded condition for those who understand something about it and an overwhelmingly shocking discovery for those who are confronted with it for the first time. Our readings show that it occurs in approximately 1 in 12,000 (20,000 according to some) live births. It is so powerfully devastating that 82% of Trisomy 13 cases will not survive the first month of life. Only 5-10 % survive to one year. Only one adult is known to have survived to age 33.
Trisomy is a condition in which a third copy of a choromosome is inherited. Usually, an individual inherits 23 chromosomes from each parent. Therefore, 23 + 23 equals 46 chromosomes. This is the total number of chromosomes a person should have. In other words, each chromosome is copied and inherited by the child. The child then, has a copy each of Chromosome 1 to 22 from his father and a copy of each chromosome from 1 to 22 from his mother. In addition, he gets one sex chromosome from his mother (the x chromosome) and one sex chromosome from his father – which can be x or y. The total then is 23 pairs.
In Trisomy 13, either the father’s or the mother’s chromosome 13 is copied twice producing a total of 3 chromosome 13. This the Trisomy 13 disorder. When 3 copies are made of Chromosome 18, this is Trisomy 18 or Edward’s syndrome. When there are 3 copies of Chromosome 21, this is called Trisomy 21 or Down’s syndrome. My son Jonathan is a Trisomy 21 case.
One Month After Pia’s Article
Pia wrote this when her jewel of a son Gabriel was 8 months old. Gabriel, the Trisomy baby, a treasure far too precious to really understand, reached the age of 9 months old still the warrior that he had always been. When he was 8 months old, his mother Pia wrote “When Gabriel is gone….” When he was 9 months old, he was gone.
On September 19, when the working mothers were preparing to leave their places of work – 5 pm – to go home to their babies, Pia watched her beloved Gabriel take his last breath. Then, there was stillness in the room, a quietness broken only by the shuffling of feet of the medical personnel standing around the bed. Gabriel, the warrior has taken his rest. The Bible says that there is a time for everything under heaven (Ecc. 3). Even for a warrior, there is a time to rest.
At 8 in the evening of that day, a time when most mothers would already be home and cuddling their babies, enjoying the scent that only a baby can exude, lost in the wonder of having a bundle of joy in their arms, Pia too was carrying her Gabriel in her arms. In a far more significant way, Gabriel was her bundle of joy. Only, the bundle of joy she had in her arms that night had his eyes closed, never to be opened again in this world.
I sat on the one end of the sofa. On my right sat Sandy. On Sandy’s right sat Pia with her bundle of joy and treasure of a son, and on Pia’s right sat Butch, her husband. No, we were not inside a house. We were inside the crematorium. At first, there was silence, broken only by the sound of a soft crying indicative of a sadness that only a loss of a loved one can bring about. I looked around and saw eyes looking at Gabriel and then at Pia. Mother and child. A most incredibly unforgettable picture of love and commitment was there for everyone to see.
Pia had Gabriel’s face uncovered. He was the same sleeping Gabriel that I saw every week for more than 8 months. Pia was lovingly running her fingers over Gabriel’s peaceful-looking face while his father Butch was gently caressing his hair. Sandy took my hand and placed it on Gabriel’s legs. We did this same thing every week for more than 8 months. That night, Pia looked to me like a perfect mother. The sight of Pia holding Gabriel in her arms, shielded from all the harassment and pressures of this world, was to me, the real picture of what perfect motherhood is all about. Gabriel – not to mince words – is dead. He was lifeless at that time. But, in the arms of a mother who gave everything that she had and everything that she was, Gabriel looked alive, so alive in fact that a newcomer to the room would not make any other conclusion. It was a sight of great beauty. Dead but looking so alive in his mother’s arms. Lifeless but looking so full of life and looking so at peace and contented because his mother’s arms are around him. The ugliness of death disappears when the mother of such character is around.
You know, I was grieving but looking at Pia and Gabriel at that time, in such a situation, strangely, I found myself rejoicing. I was teary-eyed but I was rejoicing in my heart. I remember the verse in 1 Cor. 15:54-55: “Death is swallowed up in victory. O death, where is thy victory? O Death, where is thy sting?” Nobody probably saw that sight of faith-enhancing beauty. The lifeless Gabriel in the arms of his mother – a woman of such character and faith – looks more alive than many other children I have seen. O death, in the presence of a mother with love as big as the universe, where is your victory? O Death, with all of your ugliness and sorrow, in the presence of a mother who gives everything she has and everything that she is, where is your sting? Come, people, weep but rejoice with me. Death has been defeated even while in this world.
Pia has told me many times that she is still a person struggling with her faith. The Cayetano blood in her makes her inquisitive and precise about understanding. The lawyer in her makes her ask a lot of questions and sometimes, doubt seeps in as a consequence. But this is what Pia has not noticed. Her Gabriel and his ordeal transformed her into a mother of no mean strength and character. She was a match to every pain and discomfort that Gabriel went through. She hoped when it was no longer possible to hope. She believed when it seemed like a foolish thing to do. She trusted God when there were many unanswered questions. Come one, people of God, weep but rejoice with me. We have seen the grace of God operating in a motherhood that was tested to the limits, stretched beyond our imagination, molded almost to perfection in terms of hope and trust.
I asked a Pastor from Taguig to read for us Psalm 23. I read Ecclesiates 3 I spoke to the family, to everyone, even to Gabriel. We prayed, some of those in the room prayed. All this time, Pia sat there, her arms wrapped around her baby, her treasure and gem that she was about to let go. On the farthest end of the room, unnoticed by everyone, I saw the two nurses or midwives who took care of Gabriel. They stood there quietly but their heaving shoulders showed me the extent of their grief. They, too, have come to think of Gabriel as “their Gabriel”. They realized that they were about to see someone they have cared for go away, never to be seen anymore in this world of sorrow and tears. Gabriel’s helplessness during the time of his confinement was not that evident because these ladies saw to it that their loving arms would provide Gabriel the care, attention and love his frail body always required.
Then we saw the attendants of the Crematorium waiting in the other room. I sensed Pia;s uncertainty as to what to do next. It would be a pain of untold proportions to just entrust your precious baby to strangers to do the final act required for him. I was her Pastor and Gabriel, too, had become a part of my life. I immediately knew I must do something I have never done for anyone in my 29 years of being a pastor.
I approached Pia and told her “Pia, nobody will hold your son but me. When you are ready. I’ll take him from you”. Finally, it was time, Gabriel’s face was not covered. He has got a nice shirt and short pants on. It seemed like he was attired for a journey. I went to Pia again. She raised her hands and offered Gabriel to me. I took him in my arms. His dad kissed him on the forehead. Pia said “Good bye Gabriel, we love you so much, Maxie and Nadine love you so much. We all love you very much”. There were no dry eyes that night.
With Gabriel in my arms, I walked slowly out of the crowded room. I knew then that people’s tears were falling uncontrolled as I was walking out with Gabriel in my arms. I was quite, no tears but there was that joy of knowing the grace of God that was so powerfully comforting and assuring. Before entering the other room. I stopped and whispered a few words to Gabriel. ” I am sorry Gab, the best of our love can give you only this much. But I know you understand”.
In the other room, I did not allow the attendant to touch him. I have decided that after I take him from his mother’s arms, no stranger will touch his body. Nobody did, I am a veteran pastor. I say this without meaning to be proud. I am describing my developed ability to shield my heart and mind from the painful ministerial duties that I have had to perform all these years. At that time however, I allowed myself the rare experience of having the “luxury of grief”. I held Gabriel in my arms, close to my heart and stood there without moving until finally, I had to let him go. Pain wracked my body A deep hurt was running through my mind. Not a pain of hopelessness but a pain of having known the meaning of Trisomy 13 in the life of Gabriel. The “luxury of grief” is to be really in pain but to rejoice because of the higher meaning of life. When we see beauty beyond the pain and sorrow, we can truly weep but rejoice.
Joy in the Midst of Sorrow
Surprisingly, as I was walking back to the car with my son Paul, the pain in my heart was disappearing quite fast. I was giving way to joy. I remember what I saw for 9 months. Gabriel’s condition provided his mother Pia the rare opportunity of extending love in the full sense of the word. It was a love that demanded every part of her being. This is what separates Pia from other mothers. She had a chance to love deeply when there was nothing encouraging from the medical point of view. She suffered deeply for her precious treasure of a son. She gave the best everyday notwithstanding the reality that death was a visitor who might just barge in any day. Pia had a full motherhood although Gabriel stayed only for 9 months.
Gabriel’s condition challenged Sandy’s (Gabriel’s grandmother) faith day after day. Gabriel’s condition changed my own perspectives of pain and suffering. Come, weep with me for joy. The joy of not allowing Trisomy 13 to win. The joy of seeing the ugliness of death being transformed into a sight of such magnificence and beauty that I will not forget it anymore. Pia holding her treasure of a son, her bundle of joy inside the crematorium was a sight I was privileged to see. To the very last minute, Gabriel was loved to the fullest. The joy of knowing that Gabriel reported to God all the wonderful expression of love that he has received while in this world.
Butch and Pia have not really lost their Gabriel. They have just offered him to God. I was privileged to have made that offering.
This world is not my home I’m just a-passing through My treasures are laid up,somewhere beyond the blue The angels beckon me from heaven’s open door And I can’t feel at home in this world anymore. (Old Song)