My son has 8 Surgeries from birth to 3 years old
by Ana from Madrid
All the passages below are taken from Pablo Martinez’s book “A Thorn in the Flesh,” published in 2007.
The thorn
I was expecting my third baby. According to the ultrasound scans and the prenatal tests carried out throughout the pregnancy, everything was fine and the boy would be born healthy. The waiting period before the delivery went fine, and the delivery took place without complications, but when the baby was born, just two or three minutes after seeing its precious little face, I began to sense strongly that something was going wrong. Nobody said anything to us, but the look on the midwife's face and some of her comments were eloquent enough.
Doctors began to arrive and look at the baby and after a few minutes they told us he wasn't well but no explanation of the problem was offered. Finally a paediatrician showed up in the delivery room and informed us that the baby had several malformations that were probably associated with more complications in the internal organs, which was serious, and would require surgical intervention, and he'd know more when he got the results of the tests.
From then on everything became even more complicated. He had an emergency operation in the first twenty-four hours and for a month and half, after several surgical interventions, his life was hanging from a thread. He didn't respond; the surgical wounds did not heal. He was in neonatal ICU for two weeks and each visit to the ICU was a prelude to the fact that at any moment the worst could happen: he might die. During that time there were moments in which we found ourselves mentally preparing for the burial of our son. On one occasion, after an operation, the surgeon told us: `Medicine is not an exact science; we don't know what is wrong with your son, only that things are not functioning properly, something is escaping us, his whole organism is failing and I have a bad feeling about it. If you are believers, all that's left is to pray.' My husband asked him: `Are you telling us that he's going to die?' And the answer was: `This is what I've been trying to tell you from the start.’
From the time he left hospital at almost two months old until now, our son has been put through surgery eight times. It remains difficult and we continue to worry about how he'll grow up and whether he'll be a normal boy physically. And the obstacle course isn't over yet. He's still awaiting surgery, although his life is not in danger and he lives a normal life.
The first reactions
Right after the birth and for the first few days we experienced a lot of confusion and a feeling of intense suffering. Confusion, because we didn't have enough information, and we were afraid for his life. It was necessary to perform an emergency operation and run many tests, and for me the wait was unbearable. We felt an intense suffering, which affected us to the point of being almost physical, along with the constant idea that the baby was going to die. I remember that I spent several days in constant tears; I was overwhelmed as if I were living in the middle of a nightmare. Owing to the fact that right after delivery he was taken to neonatal ICU, I became totally obsessed with them allowing me to see the baby, to touch him and hug him because I felt that if he died I wouldn't be able to bear the idea of not knowing his little face. My physical recovery after the delivery was set back quite a bit, which I imagine was due to my sadness: I wanted to disappear and die, or wake up and see that it was only a bad dream.
From the start I had a terrible feeling of guilt that didn't leave me until months later. Even today, I sometimes have to battle with this idea. To think that I might have done something wrong during the pregnancy, that I might have taken something I wasn't supposed to, that I might have done something that I shouldn't have ... I felt that I had to ask forgiveness for not having a healthy son and, in fact, at the beginning I did just that. Between the tears I would say to my family: `I'm sorry.' Everybody, the doctors, my family, would tell me that it wasn't my fault. But, despite the evidence, that thought tortured me very much.
If nobody is at fault, then why? This question, which arose from the depths of my pain, was very present during the first few months. Why did it have to be my son, why me, why a baby ... ? All the `whys' were left unanswered. Silence. Today, I have accepted that silence. But I no longer ask myself why. I've learned not to do it. I know there is no answer.
Departing from the hospital without my son, leaving him in a serious state and coming home without him in my arms, produced in me a feeling of total emptiness, and from there the sadness went on to be intense, brutal and devastating. Seeing his things, his bedroom, expressing milk every three hours in order to keep up my milk supply just to pour it down the drain ... I truly wanted to die; I couldn't sleep; I wasn't even able to rest for a minute and I scared myself thinking of terrible things like going to the kitchen, taking a knife and committing suicide. Once, this feeling, this thought, was so intense that I became afraid because I really thought I'd go through with it. I was beside myself and would constantly wake my husband up and cry with him. I scared myself. The idea and the thought of wanting to die were constant. Not improving, I had to get medical help in order to get some sleep and also for the depression. As soon as I did get some sleep, I improved a little bit, but the intense suffering lasted for almost two months.
When the major crisis was over, we brought home the baby, who was now two months old. During these past three years, we have returned to the hospital numerous times to continue with the surgical interventions. There have been other operations in which things have looked quite bad and have become complicated in surgery or where things didn't turn out right and it was necessary to intervene once again ... it even seemed like the norm for our son that things would not work out the first time. Despite the calm and joy of having our son with us, feelings of anger, distress and enormous sadness arose within me that my little son should have to suffer so much.
The spiritual battle: prayer, the key to our experience
At first, in the midst of my stupor, I only asked God `why' repeatedly, but I don't think that it was a question looking for an answer. It was a clamour. It was the verbal manifestation of my inner sadness and my falling to pieces. It was the expression of a totally broken heart.
After the first few days, when I could finally think with a bit of clarity, I began to pray intensely. I prayed alone and with my husband. I prayed at home and at the hospital. I prayed asking for help and for support, not asking for any explanation. I simply knew that the only one who could do anything for my son was God. I remember that we would go to visit our son in the neonatal ICU and we would pray while holding his hand. I remember that it was clear to me that I had to pray to God asking him to heal my son. I simply felt that I had to do it. I had to ask God time and time again to have mercy on us and let us keep our son. Like David with Bathsheba's son, pray and pray and wait for God to do something: in this case we asked that he should heal our son.
I remember that one day in the midst of intense suffering I said to my father: `Dad, don't pray for God to do his will and for us to accept it. Pray for God to do a miracle and heal Daniel, and not take him away.' Later I said to him humbly: `Please, Dad, pray fervently that he should live. If he dies, then we'll pray to God to be able to accept it.'
I especially remember the day that we were told his life was draining away, and that we should prepare ourselves because he was going to die. After crying all afternoon, my husband and I finally reacted and told each other that we must pray and pray. Together with our family and a lot of other people, we asked God to perform a miracle. I trusted in God that he could do it. I would tell him during those days of struggle: `God, grant him his life.' God's performing a miracle and saving Daniel was experienced by me as a victory for his love and mercy. God showed tender compassion towards me and my husband and, instead of taking away this treasure, he left it for us to enjoy. Three years have gone by, and we are still going through trials, but each day I feel and each day I remember that having Daniel is a gift.
During the following months, it's been much of the same. There have been many difficult moments and God has always comforted us. Prayer has been the means. It continues to be the means. A sincere prayer, from the midst of our spiritual poverty and lack of understanding.
Also, when we've had moments in which we lacked sufficient strength even to pray, others have done it for us. Support from family, church members and friends has been very important to us. We have felt it vividly. I have always told them that they have been like the `hands of God', his direct touch and caress. I know that God has `held' us using the hands, shoulders and embraces of many people we love.
Acceptance
Acceptance for me has been difficult. During the first few months I learned that there is no answer to my `whys'. Only silence. But not an icy silence, rather a silence based on the trust that God really KNOWS what is happening. Quite frankly, I do not understand the purpose of what has happened to us. I don't understand, and that's that. I thought that maybe someday I would discover a reason instead of asking why. From all this suffering we have learned much. We have grown in humility, in compassion, in thankfulness, but we have also learned some very hard things, like the harsh feelings of pain, sadness and the shadow of death. Easy answers like: `God has allowed it to happen as a test of your faith' make me sick. If I thought like that, I would stop believing in a tyrannical God who uses the suffering of the helpless for who knows what spiritual victory. Others have told us that it's for the glory of God, and I have the same reaction. I don't believe it; my son hasn't been born with malformations for anybody's glory. For him it has been and will be the cause of much suffering. I don't understand God in that way. For that reason, acceptance for me has a lot of silence, trusting and believing that there is no answer, and thinking of God and of Jesus looking at me tenderly in the eyes saying `I'm here, with you; Daniel's life is precious to me.'
Sources of help
The company of my husband who has gone through and is going through a similar process has helped me to accept this new situation. Being able to talk to him about the contradictory thoughts and feelings has been and is very liberating. It's important for me to verbalize and express myself without the fear of being judged or getting lectured. Simply having someone who'll listen to me and let me cry and express my anguish has made it possible for me to begin rebuilding myself in the new situation that we face.
My family has also been vital. My parents, my brother, my sister-in-law, my brother-in-law and some of my closest friends have been essential in this process. I always remember a phrase that my brother said to me a few days after Daniel was born, because it helps me to orient myself. `Ana, what's coming up is going to be like a very long obstacle course.' That vision helped me to visualize my situation better than many other explanations. I know that we have begun the race, we've got through the largest obstacles, and some day (I don't know when) we'll reach the finish line.
The act of feeling profound gratitude towards God for leaving Daniel with us makes the path of acceptance much easier.
Adapting to a new situation
The practical help we received from my family was fundamental. It was quite difficult, and still is even today, to organize the family when we have hospital stays and post-operative care. Their constant support and dedication is incredible.
Putting things into perspective also helped me. It all depends on how you look at a problem and, after thinking that we were going to lose Daniel, having him with us at home, even with his many medical problems, for me is like a balm. A change in values, realizing that having a healthy child is not the norm, it's a blessing. In hospital we learned a lot by seeing situations much more serious than that of our son. Now I know how to value what's important. I worry much less about things in general.
The most difficult part for me
I have a hard time accepting the emotional wear and tear that this has meant for me and my marriage. Two years practically tied to the hospital and keeping the situation as normal as possible, trying to get through it ... I think that during those two years we've aged at least ten. It's difficult for me to accept that it takes its toll on us, but that's the way it is.
Grace that is sufficient
For me, throughout these years, God's grace has been in knowing and feeling that always and at every moment God has not abandoned us; that God's success is not seen in the external blessings (good health, a home, healthy children ...) but rather in those of the soul (peacc, confidence, contentment).
Our weakness has also been extreme, and God's grace enormous. The worse off we have been, the closer we have felt the hand of God. I wouldn't choose this. If someone told me about this, I would ask that it should not happen to us. But it has, and God helps us every day and especially when we go through difficult times at the hospital.
As I said before, I have learned many positive things. I feel that I am now a person who has a more authentic outlook on life, more real. I have grown a lot in compassion and mercy, because I have felt that God has shown them immeasurably to me. I have learned that, regarding children, few things are worth worrying about, and what I took for granted before, I now consider a gift. I have learned to show solidarity from the heart with people who suffer. I have learned that it is better to live life one day at a time, because life, as Forrest Gump's mother would say, is like a box of chocolates. You taste one, and you may like it, but another you don't like at all ... and you have to eat it anyway.
I've also learned some difficult things: you can lose your joy and your hopes, and if you don't take care you can become sceptical, cynical, unbelieving ... because you don't believe in the apparently happy setting. It's an experience that takes its toll on you and places you at a crossroads: either you continue forward trying to see things in another light and focus on things in a positive way, or by inertia you continue to be bitter, distressed and without hope.
How my values have changed due to the thorn
I appreciate the present, the day to day, much more. Faced with the uncertainty of what may happen, I try to live each day at a time, and that's all.
I have become much more humble. I don't pretend to prove anything to anybody, or give lessons about anything. Feeling the thorn, the weakness ... has made me lose all pretensions if I had any, and adjust my expectations as a mother and a person.
It has made me regain and relive Christian values which are felt so deeply when one gives oneself to Christ: grace, mercy, compassion, and trust in God. I'm less demanding. I understand human fragility better. Before, I judged others a little, but now I don't judge them at all. The burden of suffering that many people carry is immense. [151-157]