WHEN A LIGHT OF HOPE SHINES THE BRIGTNESS HELPS MANY
MORE TO LIGH UP
“MY FIGHTING ANGEL”
When I pray with my son, we always thank God for all the blessings that he has given me,my husband, my son and our families and we asked God that when hard times came our way to give us the courage and strength necessary to accept his will. Well finally that day is here…….
In my fourth month of pregnancy, I made the dicision to refuse to have any blood work done to me that would possibly detect any type of syndrome or cromosone problem with my baby, What ever the result would be in my personal opinion it would not change my decision for a full term pregnancy.
Today, I am in my eighth month, one month ago my baby was diagnosed with a syndrome called trisomy 18 or Edwards Sindrome.
During those seven days it took to get the results back from the lab, I asked God that what ever the results were it did not matter because I was going to love her regardless. I also reminded him that I need to have courage for my husband we can each overcome and move forward with her and our lives.
But God put me through the toughest test you could put a mother through and that test was, to turn my child to the care of him. 95% of children with trisomy 18 will not survive more than one year, many of them will only live minutes, hours, days or a few months. No one in this world can tell me how long for sure I will have my daughter with me to enjoy and love.
Today even with the difficulties and pain that this test has been in our lives I ask God to permit us and our families to have the pleasure of meeting her, to hug her, kiss her and love her. I am willing to accept God´s will for her time being.
I’ve had her for 34 weeks and when the feeling of weakness appears she reminds me that I have to fight for her just like she has for me.”Valery” is not with us yet but she has taught me bigger things like the intense desire to fight for your right to live, the opportunity that every mother in this world can give to her child, the right to live no matter what the circumstance are she has taught me that first above all there is God and his children. Today I appreciate more the time and the patience that I need to have with my older son.
Every time I think of telling him that I am busy I am reminded of the brief time i have wirh Valery. We never know when the time for them will be too short and not long enough for them.
We have one more month of fighting but my heart as a mother tells me that we are going to make it even with the syndrome that is not compatible with life. As painfull as it could be saying goodbye to those minutes,hours, days or months will be all worth for Valery and us., because we gave her the opportunity to live, to feel the love of her parents, her little big brother and her entire family that are waiting to meet her. And that time will be unforgettable.
Regarding the pain and obstacle of life we can still learn many things. My daughter has thought me.
That every thing in life has a mission and everyone does the impossible to find it with out even being born yet she has accomplished grater things.
WEBSITE OBJECTIVE
When our daughter valeria was diagnosed with edwards syndrome or trisomia 18, it was really important for my husband and i to find emotional support and testimonies from other parents who had gone through the same circumstances via the internet. This gave us strength, faith, hope and a feeling of encouragement to fight for our daughters life. Unfortunately, the only thing we found in spanish over the internet was medical diagnosis that was not encouraging us.
We hope that our testimony will help spanish speaking parents who do not have access to the english language. We also anticipate that it ignites the fire of hope. We want to help them to understand that no matter if is a day, a week, a month or a year it is worth the trouble to fight for the life of babies diagnosed with trisomia 18.
We hope that our testimony will help spanish speaking parents who do not have access to the english language. We also anticipate that it ignites the fire of hope. We want to help them to understand that no matter if is a day, a week, a month or a year it is worth the trouble to fight for the life of babies diagnosed with trisomia 18.
VALERIA´S BABY SHOWER
LETTERS AND POEMS
BABY IN HEAVEN
ONE DAY A BABY ASKED GOD: THEY TELL ME THAT TOMORROW YOU WILL SEND ME TO EARTH, BUT HOW AM I TO SURVIVE BEING SO SMALL AND DEFENSELESS?
GOD ANSWERED: AMONG THE MANY ANGELS, I CHOSE ONE FOR YOU. HE WILL BE WAITING FOR YOU…HE WILL TAKE CARE OF YOU.
PLEASE TELL ME, HERE IN HEAVEN I DON’T DO ANYTHING ELSE BUT SMILE AND SING AND THAT IS SUFFICIENT TO BE HAPPY
GOD ANSWERED: YOUR ANGEL WILL SING TO YOU, WILL SMILE EVERY DAY TO YOU, AND YOU WILL FEEL HER LOVE AND YOU WILL BE HAPPY.
AND HOW WILL I UNDERSTAND WHEN PEOPLE SPEAK TO ME IF I DON’T KNOW THE LANGUAGE THAT THE MEN SPEAK?
GOD ANSWERED: YOUR ANGEL WILL TELL YOU THE SWEATEST AND TENDER WORDS YOU CAN HEAR AND WITH MUCH LOVE AND PATIENCE WILL TEACH YOU TO SPEAK.
AND WHAT WILL I DO WHEN I WANT TO SPEAK TO YOU?
GOD ANSWERED: YOUR ANGEL WILL PUT YOUR LITTLE HANDS TOGETHER AND WILL TEACH YOU TO PRAY.
I HAVE HEARD THAT ON THE EARTH THERE ARE BAD MEN, WHO WILL DEFEND ME?
GOD ANSWERED: YOUR ANGEL WILL GIVE UP HIS LIFE TO DEFEND YOU.
BUT I WILL BE SAD BECAUSE I WON’T SEE YOU ANYMORE.
GOD ANSWERED: YOUR ANGEL WILL ALWAYS SPEAK TO YOU AND WILL SHOW YOU THE PATH SO THAT YOU CAN RETURN TO ME IN HEAVEN, REMEMBER I WILL ALWAYS BE BY YOUR SIDE…
AT THIS INSTANT, A GREAT PEACE REIGNED IN HEAVEN BUT VOICES FROM EARTH WERE STARTING TO BE HEARD… THE CHILD HURRIEDLY ASKED REPETITIVELY…
MY GOD I AM LEAVING ALREADY, TELL ME THE ANGEL’S NAME. WHAT IS MY ANGEL’S NAME???
GOD ANSWERED: DON’T WORRY THE ANGEL’S NAME IS NOT IMPORTANT; YOU WILL JUST CALL HER MOMMY.
THERE IS NO GREATER TREASURE OR INHERITANCE THAT CAN BE GIVEN TO A SON THAN LIFE ITSELF AND OUR TEACHINGS. THE MATERIAL GOODS AND WEALTH DISAPPEAR IN MINUTES AND WILL NEVER GIVE THEM THE STRENGTH AND THE FAITH TO OVERCOME THE PROBLEMS… ONLY A MOTHER CAN GIVE THIS GREAT TREASURE. NOBODY IN THE WORLD CAN ERASE THE VALUES AND TEACHINGS PARENTS CAN LEAVE IF THEY FOMENT TO THEIR CHILDREN THE LOVE OF A
TODAY MORE THAN EVER I AM GRATEFUL TO MY PARENTS THAT HAVE GIVEN ME THE
GOD KNOWS WITH WHAT ILLUSIONS, LOVE, AND HAPPINESS WE DESIRE ANOTHER CHILD. SINCE THE DAY VALERIA WAS DIAGNOSED WITH TRISOMIA 18, I HAVE PLACED HER LIFE IN THE HANDS AND WILL OF GOD. I AM NOT ASKING FOR MIRACLES. I JUST PRAY WITH STRONG FAITH FOR AN
Valeria and Isabella
My life long best friend, Ximena, and I always dreamed about being pregnant at the same time. These seemed as crazy idea at the time but somehow it incredibly came true. First, I got pregnant then 1 month later Ximena was pregnant. It was even more amazing when we found out that we were both going to have girls. We imagined us taking them out together, teaching them things together, even dressing them the same. We agreed that we wouldn’t allow them to be jealous of one another. We envisioned what it would be like if they fell in love with the same man or if one took the boyfriend away from the other.
When my unborn child, Valeria, was diagnosed with Trisoma 18, I called Ximena to ask for her forgiveness. I told her I wouldn’t be able to see or be near her daughter as I had originally planned. I said that it would be very difficult to be reminded of my daughter every time I saw hers. At the moment, I felt completely emotionally destroyed.
After several weeks had passed, thanks to God, my desire to fight for the life of my daughter
has become very strong even though she may be with us for a short period of time. I feel that I can now care for, hold and hug Ximena’s future daughter, Isabella although she would happen to remind me of Valeria. I came to the realization that some separations lead to deep emptiness that can never be filled but there are also those special relationships that leave you filled with a special type of love to remind you how important that they were to you.
Ximena you can count on me. I will be your side. I will treat your daughter as if she were mine. Every time I hug her she will be a constantly showing me that I should remember my daughter with love and not pain.
A letter from Lily to Mommy
By Danielle Silva
December 2005
Dear Mommy,
They said I would not make it, but you believed in me. You knew I had a purpose however short my life may be. I wanted you to know some things. I loved every moment I was inside of you. I heard every song you sang, every word you said and fell asleep to your heartbeat everyday. Every time you put your hands on your belly, I felt your warmth and love. I could hardly wait to see you! I wanted so badly to be held in your arms and to feel your kisses upon my face. I was so excited the day I was to meet you, mommy you may not have known it, but I was! When I felt your first touch mommy, a warmth and peacefulness flowed thru every vein in my tiny body. I love rocking with you mommy. I love the sound of your heart and the warmth of your arms wrapped around me and the feel of your breath on the top of my head. Mommy, Angels are here everyday. They tell me I must go soon, I told them I do not want to but they say my job here is done. They say God says I can stay, but only for a short time. Mommy when I leave, Please don't cry. God is taking good care of me. My body is perfect here mommy. I feel no pain and I can run mommy! I can run so fast! I can ride my bike and play on the swings. God pushes really high mommy, it is so much fun. God says one day you will be here to push me, I can hardly wait! Don't cry for me mommy. I will miss you but God says I can come and visit. You won't be able to see me mommy but I can see you. I'll be there in your dreams. When you need to see me, close your eyes and I'll be there. When you feel someone touch you on your shoulder or think you hear someone calling you, or you feel the wind blow your hair or a tickle on your cheek, smile mommy because that will be me. One day we will all be together again. But mommy till then, celebrate my life. Rejoice in the time we had together. Hug my brothers a little tighter each day. Take care of my Daddy, he needs you too, you need each other. And every time you see another little girl around my age playing, smile because I am doing the same thing in Heaven. God says he will be with me till we are all together again so don't worry. Okay? I love you mommy! It was an honor getting to be your baby girl. Love, LilyLetter for families
VALERIA´S STORY
During the fourth month of my pregnancy, I decided not to test for AFP, which would detect the odds of my baby having a chromosomal problem. That same day I consulted with my gynecologist becauseI wanted to know if the tests gave a positive answer, was there something that could be done to improve the baby’s health? His answer was that this test basically would serve only as information. I explained to my doctor, that if my baby did have a syndrome or something that would cause mental delay, I was not considering interrupting my pregnancy nor was I going to change my intention to have the baby.
Today, I am thankful I did not take the screen. As it turned out, if it was so difficult for me to find out about the diagnosis of Trisomy 18 two months before having my daughter, how much more difficult would it have been to know earlier about it, and wake up every day wondering if my daughter and I were going to manage to make it until the end. Many babies diagnosed with T18 do not get to be born alive. This diagnosis causes many mothers to decide to end their pregnancies early.
At my second routine ultrasound on June 14, 2006, the sex of my baby was revealed. We were really happy to know it was the girl we always wished for, “Valeria”. At the next appointment with my gynecologist, he told us that they had found cysts in her brain. We felt concerned, but the doctor told us not to worry because in 90% of the cases this fades away in the seventh month of pregnancy. We would have to wait for the time to come to have a second level ultrasound to confirm it.
On the next day, Thursday, August 24, 2006, we went to the hospital for an amnio. We were nervous thinking about the possibility of causing a premature birth which would result in the the immediate death of Valeria. It was a very difficult decision to make, but because of the circumstances we were positive that everything was going to come out well and that we could know if our baby was going to come through it all.
The partial result of the test that would tell us if there was a chromosomal problem came in on Monday; it was not an easy time. We said a lot of prayers and had faith that everything was going to go well. We prayed for the result not to be Trisomy 18 or 13, since with those two, Valeria’s life would be very short. If it was a fact that the girl was going to have mental delay, it did not matter to me what congenital defects she had. I was going to love and take care of her no matter what, so I wished for Trisomy 21 (Down syndrome). With that diagnosis there is a better quality of life and at least we would know that she didn’t have her days counted from the day of her birth.
At the echo-cardiogram they confirmed the presence of a ventricular septal defect (VSD). The opening was not huge, the cardiologist explained that during the last two months before birth, it could remain the same, close itself or become bigger.
The next step would depend of the result of the amniocentesis. If the result was Trisomy 18, he believed it was not beneficial to pursue a surgery since this syndrome brings with it many other abnormalities that would eventually cause the death of the baby.
The partial result was given the following Tuesday. I went to pick up my son from school, when I came back home, my husband gave me a look and I saw the answer in his eyes. He hugged me and told me, "Valeria has Trisomy 18, it is possible that she will not be born and if she makes it, the majority die in the first week or months after birth, just a few manage to live more than a year." At that moment, I felt pain inside of me; it seemed incredible that I had to accept that my daughter could be born with a mental delay and other problems. I knew I had to accept she may not be born, and if she managed to be born, could not know how long she was going to be with me.
How could I be brave with a diagnosis like that? I cried for several days, and could find no way out. At first, it was very hard for me. I thought there was no sense in taking care of myself, or to take my vitamins, to eat, if it all was going to end the same, she was going to die anyway. So many worries, the uncertainty - knowing what could happen if she managed to live. Would I be able to take good care of her, and would I be able to face all the complications that come with babies with Trisomy 18? What were the odds of her surviving and how long was she going to live? The only thing that we could do was to wait and hope.
We had many questions about the things we should do when Valeria was born; we had to decide if we were going to put her through examinations, surgeries, or a ventilator to help her live longer. From the beginning my husband refused this idea, but not me. I wanted to fight for her life and not doing anything, was like letting her die. How could we allow that?
A few days later, after the visit of a priest close to our family, I understood that Valeria had the right to die a natural and dignified death and that it may be selfish to want to have her with me. I was going to submit her to surgeries and examinations that were not ultimately going to change anything. On the contrary, they could cause her pain and suffering.
Valeria was going to be with us the time that she and her body felt the strength to do it. I am not one to subjugate a baby so weak, small, and defenseless to suffer those difficult moments. What she needed was to feel us close to her and with all the testing we would lose the time to be with her and share our love as her parents. We decided that she had to fight when she had the strength, obviously supporting her with basic care her comforting her in our arms. If she managed to live a longer time, we could consider the option of evaluating the possibility of fixing at least the cardiac defect.
On September 14, we met with the neonatologist. We decided on a plan of action at the moment of Valeria’s birth and he supported us. No intervention would be offered to her. We expressed our desire to baptize her immediately after her birth and to have her with us as long as possible. The neonatologist told us that if it became necessary, they would feed her with a tube. Before the appointment my husband and I asked ourselves what we had to do when Valeria presented episodes of apnea - stopped breathing and changed color because of lack of oxygen, a terrible thing to think about. The neonatologist’s reply was painful for us, “You cannot do anything, just wait for her to begin to breathe again.” I told my husband, how can we watch her while she is dying? The doctor told us, “If you call 911, what they are going to do is to try to revive her with a defibulator. Do you want that for your small baby?” With tears in our eyes, we decided that it was not what we wanted.
By this time, my attitude had changed completely. I was strong and had the strength to fight for my daughter’s life, positive and with the firm belief that we were going to get her to birth and perhaps, Valeria would be able to be with us for a long period of time. I always felt her very strongly. The first days when I was so sad and desperate, I placed my hand in my stomach and she began to move a lot, like if she wanted to tell me, “Mother I am here!”, “fight for me!”, “don’t let your self down!,” and I gained strength. Although babies with T18 present very little fetal movement, Valeria seemed to respond whenever I needed her. When I felt the anguish of not feeling her movements, I sat down, and talked to her and told her I needed to know if she was well. It was incredible, she moved just where I placed my hand, like wanting to touch me. It is a sensation that I will never erase from my heart.
We had several meetings with the hospital’s social worker who was a great support for us. She put us in touch with a volunteer photographer for a national organization of photographers who help to create unforgettable memories of babies with a terminal diagnosis. She took photographs of my husband, my son, and myself before having Valeria and we decided that she should be present during the childbirth and the time that we were going to be in the hospital. The social worker gave us authorization to receive visits all the day long without limitations.
During those days, I received one of the best gifts I have ever gotten, the testimony of a family with great strength that had a baby called, Abigail with Trisomy 18, with a story similar to our daughters, it was incredible. From the beginning we took the same decisions, they had the same medical diagnoses, the technician at the ultrasound told them the same thing, (Valeria had posed for precious photos), they also had similarities on the ultrasounds. Reading that story served us a lot, it gave us a light of strength and hope. That was another way to confront these difficult moments. Ever since they gave us that diagnosis, there was a phrase constantly repeated in my mind, “Syndrome not compatible with life” as if the fact that some of the time babies managed to live: days, months or a few years, did not mean anything. Thus, it is just a short time that they are with us; they manage to give us their love, a lesson, and their enormous affection.
I navigated on the internet looking for support from the families with babies with Trisomy 18; I found a lot of pictures of babies that live months and some, a little bit longer than a year. I was hoping that Valeria could be one of those lucky babies. Reading those testimonies change everything on me, I stopped being sad and stopped crying, I cannot deny that there were moments I feared, I believe it was reflected in my face, I remember my mother saying, “You need to cry to feel better,”. I said no, I am going to cry the day Valeria passes away, right now she needs me to be strong.
At some stage in the pregnancy and during the time we were waiting to confirm Valeria’s diagnosis of Trisomy 18, it was very important for us to read testimonies of families who had gone through the same circumstances. When I tried to find Spanish language stories on the internet, I only found medical diagnoses. Spanish is my maternal language. I live in the United States, but I wanted to find information that I could understand perfectly and did not have to depend on anybody to translate what I was not able to comprehend. That’s when the idea to create a web page honoring Valeria was born; this helped me to find a goal for my life and some meaning for our pain. It filled me with emotion to know that our testimony could help other families to fight for the life of their babies with Trisomy 18, as we found support in the testimonies of other people. God gave me enough strength to continue without wanting to look for someone to blame, pr feeling guilty or trying to find the reason why it was happening. He placed in our path sufficient support, prayers, love, and demonstrations of friendship that we never imagined. This helped us and continues to helping us look forward. One week before the birth, I spoke with our friend the priest and asked him to celebrate a mass on the day after her birth to thank God for our baby’s birth.
Finally, it was Friday October 20th, we had an appointment to be at the Hospital at 5:00 a.m., they performed all the pertinent check-ups. When they were monitoring Valeria’s heart, fear invaded me. Her heart was not as strong as we thought, it was going from strong and fast heartbeats to weak and slow heartbeats. They took me to the operating room and began the surgery, my husband’s hands were shaking and he was not able to hold his tears. We just wanted to hear Valeria’s first cry and feel relieved that she was born. We were flooded with enormous joy at 8:11 a.m., when Valeria was finally with us. They checked her very quickly and gave her to us; finally, she was in our arms. They took us to the recovery room where she opened her little, weak eyes, but she was calm. Then they transfered us to the room, were all our family and friends were waiting for us - approximately thirty people wanting to know her. They held her, took many pictures with her. It was very special to see that many people wanting to share this time with her.
At ten thirty in the morning the nurse came, she bathed her and dressed her for the baptism. A few minutes after the bath she began to have episodes of apnea and from that moment Valeria’s heart had weak palpitations. She passed away in the afternoon around 2:45 p.m.
I lost my daughter but I gain a beautiful angel who raised the sky with her opened wings leaving us empty and sad but at the same time filling us with lessons, hope, and the great satisfaction to have had the experience of unconditional love in our hearts … In my life, I will never be able to forget her last efforts to breathe, but at the same time, I will also remember the expression of peace and tranquility on her face.
After her death, we held her until 7 p.m. Her small lips were still red in color. When the nurses arrived to get her, I did not want to give her up. I embraced her harder, and harder until my husband requested me to let her go. I had already pushed back the hour to hand her over four times! We decided with the social worker that they would cremate her on Sunday and when leaving the hospital we could collect her, but that night I had anxiety and started to cry. I asked my husband to go the following day with our family to the cremation and pray for her. It seemed to me incredible that we had not thought to be with her at those moments, but in fact, we were still stunned. That night, in the middle of my sadness I thought about her, how was she doing, how she felt without her father and mother. Would she be able to see us? Finally I fell asleep, and there it was, when I found the answer to all my doubts… when I open my eyes after having fallen into a deep sleep I could see my daughter Valeria in the middle of clouds of a clear and beautiful luminosity, with an expression of happiness and peace. Someone was holding her singing her to sleep with a lot of love and tenderness. I could not see His face. He was seated and dressed with a long and white mantle. I felt that Valeria wanted to show me where she was so that I could sense calm and come to accept that over there she was happy and that she could not be in a better place.
Today, I am thankful I did not take the screen. As it turned out, if it was so difficult for me to find out about the diagnosis of Trisomy 18 two months before having my daughter, how much more difficult would it have been to know earlier about it, and wake up every day wondering if my daughter and I were going to manage to make it until the end. Many babies diagnosed with T18 do not get to be born alive. This diagnosis causes many mothers to decide to end their pregnancies early.
At my second routine ultrasound on June 14, 2006, the sex of my baby was revealed. We were really happy to know it was the girl we always wished for, “Valeria”. At the next appointment with my gynecologist, he told us that they had found cysts in her brain. We felt concerned, but the doctor told us not to worry because in 90% of the cases this fades away in the seventh month of pregnancy. We would have to wait for the time to come to have a second level ultrasound to confirm it.
On the next day, Thursday, August 24, 2006, we went to the hospital for an amnio. We were nervous thinking about the possibility of causing a premature birth which would result in the the immediate death of Valeria. It was a very difficult decision to make, but because of the circumstances we were positive that everything was going to come out well and that we could know if our baby was going to come through it all.
The partial result of the test that would tell us if there was a chromosomal problem came in on Monday; it was not an easy time. We said a lot of prayers and had faith that everything was going to go well. We prayed for the result not to be Trisomy 18 or 13, since with those two, Valeria’s life would be very short. If it was a fact that the girl was going to have mental delay, it did not matter to me what congenital defects she had. I was going to love and take care of her no matter what, so I wished for Trisomy 21 (Down syndrome). With that diagnosis there is a better quality of life and at least we would know that she didn’t have her days counted from the day of her birth.
At the echo-cardiogram they confirmed the presence of a ventricular septal defect (VSD). The opening was not huge, the cardiologist explained that during the last two months before birth, it could remain the same, close itself or become bigger.
The next step would depend of the result of the amniocentesis. If the result was Trisomy 18, he believed it was not beneficial to pursue a surgery since this syndrome brings with it many other abnormalities that would eventually cause the death of the baby.
The partial result was given the following Tuesday. I went to pick up my son from school, when I came back home, my husband gave me a look and I saw the answer in his eyes. He hugged me and told me, "Valeria has Trisomy 18, it is possible that she will not be born and if she makes it, the majority die in the first week or months after birth, just a few manage to live more than a year." At that moment, I felt pain inside of me; it seemed incredible that I had to accept that my daughter could be born with a mental delay and other problems. I knew I had to accept she may not be born, and if she managed to be born, could not know how long she was going to be with me.
How could I be brave with a diagnosis like that? I cried for several days, and could find no way out. At first, it was very hard for me. I thought there was no sense in taking care of myself, or to take my vitamins, to eat, if it all was going to end the same, she was going to die anyway. So many worries, the uncertainty - knowing what could happen if she managed to live. Would I be able to take good care of her, and would I be able to face all the complications that come with babies with Trisomy 18? What were the odds of her surviving and how long was she going to live? The only thing that we could do was to wait and hope.
We had many questions about the things we should do when Valeria was born; we had to decide if we were going to put her through examinations, surgeries, or a ventilator to help her live longer. From the beginning my husband refused this idea, but not me. I wanted to fight for her life and not doing anything, was like letting her die. How could we allow that?
A few days later, after the visit of a priest close to our family, I understood that Valeria had the right to die a natural and dignified death and that it may be selfish to want to have her with me. I was going to submit her to surgeries and examinations that were not ultimately going to change anything. On the contrary, they could cause her pain and suffering.
Valeria was going to be with us the time that she and her body felt the strength to do it. I am not one to subjugate a baby so weak, small, and defenseless to suffer those difficult moments. What she needed was to feel us close to her and with all the testing we would lose the time to be with her and share our love as her parents. We decided that she had to fight when she had the strength, obviously supporting her with basic care her comforting her in our arms. If she managed to live a longer time, we could consider the option of evaluating the possibility of fixing at least the cardiac defect.
On September 14, we met with the neonatologist. We decided on a plan of action at the moment of Valeria’s birth and he supported us. No intervention would be offered to her. We expressed our desire to baptize her immediately after her birth and to have her with us as long as possible. The neonatologist told us that if it became necessary, they would feed her with a tube. Before the appointment my husband and I asked ourselves what we had to do when Valeria presented episodes of apnea - stopped breathing and changed color because of lack of oxygen, a terrible thing to think about. The neonatologist’s reply was painful for us, “You cannot do anything, just wait for her to begin to breathe again.” I told my husband, how can we watch her while she is dying? The doctor told us, “If you call 911, what they are going to do is to try to revive her with a defibulator. Do you want that for your small baby?” With tears in our eyes, we decided that it was not what we wanted.
By this time, my attitude had changed completely. I was strong and had the strength to fight for my daughter’s life, positive and with the firm belief that we were going to get her to birth and perhaps, Valeria would be able to be with us for a long period of time. I always felt her very strongly. The first days when I was so sad and desperate, I placed my hand in my stomach and she began to move a lot, like if she wanted to tell me, “Mother I am here!”, “fight for me!”, “don’t let your self down!,” and I gained strength. Although babies with T18 present very little fetal movement, Valeria seemed to respond whenever I needed her. When I felt the anguish of not feeling her movements, I sat down, and talked to her and told her I needed to know if she was well. It was incredible, she moved just where I placed my hand, like wanting to touch me. It is a sensation that I will never erase from my heart.
We had several meetings with the hospital’s social worker who was a great support for us. She put us in touch with a volunteer photographer for a national organization of photographers who help to create unforgettable memories of babies with a terminal diagnosis. She took photographs of my husband, my son, and myself before having Valeria and we decided that she should be present during the childbirth and the time that we were going to be in the hospital. The social worker gave us authorization to receive visits all the day long without limitations.
During those days, I received one of the best gifts I have ever gotten, the testimony of a family with great strength that had a baby called, Abigail with Trisomy 18, with a story similar to our daughters, it was incredible. From the beginning we took the same decisions, they had the same medical diagnoses, the technician at the ultrasound told them the same thing, (Valeria had posed for precious photos), they also had similarities on the ultrasounds. Reading that story served us a lot, it gave us a light of strength and hope. That was another way to confront these difficult moments. Ever since they gave us that diagnosis, there was a phrase constantly repeated in my mind, “Syndrome not compatible with life” as if the fact that some of the time babies managed to live: days, months or a few years, did not mean anything. Thus, it is just a short time that they are with us; they manage to give us their love, a lesson, and their enormous affection.
I navigated on the internet looking for support from the families with babies with Trisomy 18; I found a lot of pictures of babies that live months and some, a little bit longer than a year. I was hoping that Valeria could be one of those lucky babies. Reading those testimonies change everything on me, I stopped being sad and stopped crying, I cannot deny that there were moments I feared, I believe it was reflected in my face, I remember my mother saying, “You need to cry to feel better,”. I said no, I am going to cry the day Valeria passes away, right now she needs me to be strong.
At some stage in the pregnancy and during the time we were waiting to confirm Valeria’s diagnosis of Trisomy 18, it was very important for us to read testimonies of families who had gone through the same circumstances. When I tried to find Spanish language stories on the internet, I only found medical diagnoses. Spanish is my maternal language. I live in the United States, but I wanted to find information that I could understand perfectly and did not have to depend on anybody to translate what I was not able to comprehend. That’s when the idea to create a web page honoring Valeria was born; this helped me to find a goal for my life and some meaning for our pain. It filled me with emotion to know that our testimony could help other families to fight for the life of their babies with Trisomy 18, as we found support in the testimonies of other people. God gave me enough strength to continue without wanting to look for someone to blame, pr feeling guilty or trying to find the reason why it was happening. He placed in our path sufficient support, prayers, love, and demonstrations of friendship that we never imagined. This helped us and continues to helping us look forward. One week before the birth, I spoke with our friend the priest and asked him to celebrate a mass on the day after her birth to thank God for our baby’s birth.
Finally, it was Friday October 20th, we had an appointment to be at the Hospital at 5:00 a.m., they performed all the pertinent check-ups. When they were monitoring Valeria’s heart, fear invaded me. Her heart was not as strong as we thought, it was going from strong and fast heartbeats to weak and slow heartbeats. They took me to the operating room and began the surgery, my husband’s hands were shaking and he was not able to hold his tears. We just wanted to hear Valeria’s first cry and feel relieved that she was born. We were flooded with enormous joy at 8:11 a.m., when Valeria was finally with us. They checked her very quickly and gave her to us; finally, she was in our arms. They took us to the recovery room where she opened her little, weak eyes, but she was calm. Then they transfered us to the room, were all our family and friends were waiting for us - approximately thirty people wanting to know her. They held her, took many pictures with her. It was very special to see that many people wanting to share this time with her.
At ten thirty in the morning the nurse came, she bathed her and dressed her for the baptism. A few minutes after the bath she began to have episodes of apnea and from that moment Valeria’s heart had weak palpitations. She passed away in the afternoon around 2:45 p.m.
I lost my daughter but I gain a beautiful angel who raised the sky with her opened wings leaving us empty and sad but at the same time filling us with lessons, hope, and the great satisfaction to have had the experience of unconditional love in our hearts … In my life, I will never be able to forget her last efforts to breathe, but at the same time, I will also remember the expression of peace and tranquility on her face.
After her death, we held her until 7 p.m. Her small lips were still red in color. When the nurses arrived to get her, I did not want to give her up. I embraced her harder, and harder until my husband requested me to let her go. I had already pushed back the hour to hand her over four times! We decided with the social worker that they would cremate her on Sunday and when leaving the hospital we could collect her, but that night I had anxiety and started to cry. I asked my husband to go the following day with our family to the cremation and pray for her. It seemed to me incredible that we had not thought to be with her at those moments, but in fact, we were still stunned. That night, in the middle of my sadness I thought about her, how was she doing, how she felt without her father and mother. Would she be able to see us? Finally I fell asleep, and there it was, when I found the answer to all my doubts… when I open my eyes after having fallen into a deep sleep I could see my daughter Valeria in the middle of clouds of a clear and beautiful luminosity, with an expression of happiness and peace. Someone was holding her singing her to sleep with a lot of love and tenderness. I could not see His face. He was seated and dressed with a long and white mantle. I felt that Valeria wanted to show me where she was so that I could sense calm and come to accept that over there she was happy and that she could not be in a better place.
The day God calls me I will go with the greatest expectation of finding her, again.
Now my husband, son and I will continue with the light she lit in our hearts. A kind of love made with tears of eternal love.
Zimbron family.
www.trisomiavaleria.org
These beautiful photos were taken by Andrea Hillis for Now I Lay Me Down to Sleep.
These beautiful photos were taken by Andrea Hillis for Now I Lay Me Down to Sleep.