1. Introduction
I am the mother of three children and a primary school teacher. I would like to highlight, through the story of my family and in particular of my second son Mele, who is affected by a mitochondrial disease, what have been the main difficulties we have faced as a family and the main positive contributions that have helped our family grow together, making everyone’s gifts flourish.
Emanuele (Mele) was born on 22 April 2008, the second of our three children. Our family was similar to many others, but in July of that same year Mele became ill and was hospitalized for months in a specialized children’s hospital. From this moment on I have only “sleeping baby” pictures of him in my computer. In August doctors told us there was not much more they could do for him, so we got him confirmed with the rite for children in danger of death. He did not die and we came back home.
What had happened? Did something break? Did we have a broken baby to be fixed or changed?
2. Raising Mele: the impossible becomes possible
In fact, I can assure you that the expectations, the desires all parents have for their children were still there and they had not changed. We still wanted every one of our children to grow up, communicate, play, study, get a job, form a family for themselves, etc. Our expectations had not changed in substance, but in manner they were now very different.
Moaning is useless: you must “make dinner with what is in the fridge”. Sometimes, when an unexpected guest arrives, you think: “Oh my God, I have nothing to serve”, but a Mum, checking her pantry, can actually always make a delicious meal with what is already there. What if there is nothing to eat? Well, all you can make is ‘Stone Soup’. This is a very famous fifteenth/sixteenth century European folk story. In a village there is a great famine and no one has enough to eat. A woman fills a pot with water, drops a stone in it and places it over a fire in the middle of the village square. One of the villagers becomes curious and asks her what she is doing. She answers she is making ‘Stone Soup’, which tastes wonderful and which she would be delighted to share with the villager, although it still needs a little bit of garnishing ‒ which she doesn’t have ‒ to improve the flavour. The villager does not mind parting with a few carrots, so these are added to the soup. Another villager walks by, inquires about the pot and the story of the stone soup, which has not yet reached its full potential, is repeated. More villagers walk by adding new ingredients to the pot. Finally, the inedible stone is removed and a delicious and nourishing pot of soup is enjoyed by the woman and villagers alike. What wasn’t there becomes present. Sharing what everyone has, even if it’s not enough by itself, leads to successfully transforming emptiness into a tasty meal that feeds everyone, including the donors. The impossible becomes possible with a minimum effort of sharing.
The ingredients of our ‘Stone Soup’ were donated by individual people who helped us, believing in the possibility of learning to lead a fulfilling life:
- returning home, thanks to the support and formation from a hospital service which trains parents of children in paediatric palliative care;
- receiving a home nursing service with a nurse who cared for Mele for eight years and who allowed the family to “breathe”;
- starting kindergarten with a teacher who stimulated Mele to express himself through painting;
- the enthusiasm of a few art critics and the support of UCAI (Unione Cattolica Artisti Italiani), which led to public exhibitions of a three-year-old artist’s paintings;
- the birth of Mele’s little sister Maria, who brought a note of joy and confidence;
- attending the local scout group and participating in scout camps;
- the adventure of school, where courageous teachers, consultants, and principals worked and fought for the attendance and inclusion of Mele at school;
- several victories in court, achieved thanks to the pro bono commitment of sympathetic lawyers;
- the arrival of farm animals and the creation of a small rural reality around Mele.
History is made by good, courageous, frequently unknown people, who dare, who lead the others into hope. These people become contagious with hope, simply by concentrating on ordinary problems, because although bad things and habits are certainly contagious, fortunately also good habits, behaviours and feelings are, too. I am not talking only about government leaders, judges, economists, kings: they have a major role and they are important; the bigger the role, the greater the responsibility. Making good laws is important, applying them and making sure they are respected is even more important; creating functional economies is good, but the best thing is throwing seeds of good around. A small flame can light a great fire and you do not need to wait to be elected president or to marry the queen to do this. You can do it here and now. If you are good with little things, you will be good in bigger things. Seeds of hope are the most important things you can spread around, even in your own little situation. Then you can spread seeds of truth, beginning from yourself, seeds of life, seeds of respect, seeds of love. Love is a very inflated thing. Love is not a feeling, or not just a feeling alone; it is a behaviour, it is the will to do positive good.
So how can we make the good seeds in each of our children flourish, considering the very different needs of every one of them? Speaking personally, we as a family simply had to learn how to do exactly the same things, but in a different way.
3. Family learning: all relationships become more challenging
We learned how to feed a child who cannot eat, how to make a child with bone pain sleep comfortably, how to help him sit even though he doesn’t have the muscle strength to do so, how to allow him to ‘stand up’, how to communicate without speaking with his voice, how to breath without his lungs being able to do so, how to teach and how to learn, how to attend school in regular classes. As you know, in Italy we do not have special schools or classes for students with disabilities, we just have classes which all people can attend and you should have all the support you need to achieve formative and educational success.
Disability never ends. Disability is a chronic condition that is different from an intercurrent illness or an occasional emergency. It puts everyone under stress, meaning that everyone is focused on guaranteeing the survival, the wellness, and the quality of life of the child. People relate differently to a child with disability or to a family who has a child with disability: they are all more stressed! I realized, for example, that the nurses in the paediatric ward of our local hospital were really nice when I went there with my eldest son, because they were all relaxed and confident and they were kind to me and to my child; however, they were all very tense, worried and in a defensive attitude when I had previously been there (many times) with Mele.
Disability disturbs, disability scares. Why? Because it reveals our shortcomings, our own fragility, it evokes our deepest fears: could it happen to my son? Could it happen to me? It puts us all in a state of challenge: I am a teacher, can I teach him/her? I am a mother, can I raise all my kids? It puts our system under pressure to achieve better standards: hospitals, schools, the government etc. All relationships become more challenging.
What are the most difficult things we experienced? Facing bureaucracy and having a correct relationship with public systems to get the support needed for a dignified life: first of all, getting needs identified and addressed properly without getting involved in a common public system conflict of interests. The services needed are in fact prescribed by the same entity that pays for them. Very often, the goal of public services is not to help people, but to spend less money to the detriment of the weakest. It is sad when people with disabilities are considered either a resource to be exploited or an opprobrium to be removed.
It is painful for a family to be forced to resort to the courts in order to have common human rights guaranteed, and to receive proper care. Public services can fight strenuously against a family that dares to appeal in a court for their child’s rights. They often do so with the specific aim of using the family as a deterrent to discourage future requests from others.
Time is important, especially when you are a child and you have a progressive illness. Court cases, even when they end up by obtaining obvious rights, can still be unjust if they are endless or too long. You can certainly obtain a support teacher if you have a disability and the school hasn’t assigned you one, but you will probably get this professional help at the end of the school year, when it has become practically useless.
Recently we were forced to move our son to a new school, because his former teachers gave up teaching him. He himself described the situation with these words: “They are not teaching me because they assume I cannot learn, so I’m not learning”. Prejudice is a self-fulfilling prophecy!
To preserve the family’s well-being, capacity for work, social life and relationships you must address not just the person with disabilities but the entire family and mainly caregivers (in Italy the figure of the caregiver is not legally recognized). I realized this because there is a situation in which disability of children is caused on purpose: when you want to win a war. Bombs resembling toys are fabricated not to kill children, but to mutilate them so the parents will turn all their energies inside their family to help their children, thus draining resources from the war effort. If we want to win our war against discrimination and segregation a good thing to do is to support families and caregivers in their efforts to raise their children and keep their outside life: working, studying, having a social life, getting proper medical care for themselves and even sometimes enough rest or sleep.
Is it difficult? Yes, it is; but “the greater the struggle the more glorious the triumph”.[1]
When I’m tired, I remember this speech from Antonino Caponnetto:
“Refuse all kinds of compromises. Be intransigent about values. When people have got things wrong, convince them that is so. […] Never ask for favours or to be favoured. The Constitution and the law give you rights, and you must insist that they be upheld. Ask for your rights, firmly and with dignity require them to be given without having to bow down to those who are in power or to the politician of the moment. You need to demand them! This is an imperative action underlining the whole of your life. Always show respect for your own dignity and defend it at all times”.[2]
4. What are the things that really helped us?
- Respect for life: No one ever suggested that our son should be killed, neither in utero (but his illness had not yet been diagnosed) nor after. Killing someone thinking you are doing a good thing is only possible if you dehumanize the other person; dehumanization did not start with the Nazi holocaust and, of course, it is not over yet. No one is safe from it. No one proposed the deception of killing him to help our family and society with the surreal excuse of the “best interest”, even of the person who is killed. Death is never in the best interests of any living creature; death is not good and it is certainly not in anyone’s best interests. It is beyond evil to think of eliminating a person just to eliminate his or her pain. It reminds me of when, as a child, I scratched my knee. I would go crying to my Grandma and she would always say: “No problem, let’s cut your leg off so it won’t hurt any more”. It was so obvious to 4-year-old me that this was the most idiotic solution that I simply laughed and was very satisfied with a plaster or even just a kiss. Killing someone is never an act of compassion; anyone who makes you believe this or says this is a liar.
- Knowing our rights: sometimes, in fact, we put ourselves in the position of not considering that we have the perfect right to be “like everyone else”. We don’t dare to ask or join in any activities or even try to, because we are not aware that we can, simply because the laws guarantee these things to us.
- A network of help, from other parents of children with disabilities who have already walked along this same path.
- Being up to date and competent in doing everything to make sure our child will survive.
- When we actually received appropriate help from services. For example, when we had nursing assistance with substitution of the caregiver and flexibility, and we were able to keep our jobs, to care better for all our children, or just to sleep when we were tired.
- Having dedicated professionals who really took care of us and of our children: doctors, hospitals, nurses, directors, lawyers, judges, principals of schools etc., who actually took personal responsibility, and, for example, signed the documents that were needed (because vital figures in such positions frequently refused to do so), giving the much-needed seal of authority, highlighting not only our exigencies but our rights as well.
After this extenuating, strength-consuming process, what can you do when all the things strictly regarding survival have been done? Well, you can finally start doing what children do ‒ you start playing!
5. Mele’s art
My son’s active practising of art started by chance, as a family game. My eldest son was just 5 years old and one day I decided to let him paint in his underwear. It was really funny, but he destroyed the piece of paper because of the amount of paint he put on it. I then decided to get a canvas so I would be able to keep his work. When I was at the shop, I remembered an episode of my life. I had been invited to my parents’ house because of my younger sister’s graduation. When I arrived, my father came to meet me at the gate with a bouquet of flowers. I said to him: “Dad, you’ve got the wrong daughter, it’s not me, it’s my sister who has graduated”. He answered: “I’m not wrong: I have two daughters so I went out and got two bouquets of flowers!” Remembering that I thought: “I have two sons, I’ll buy two canvases”. When Mele tried we started praising him at the beginning saying: “You are great, you are sooo gifted”, but the thing is that in the end his painting really was extraordinary. I decided to have it framed, thinking he would never make another one. When I went to the shop the man said to me: “It’s a really long time since I saw such a beautiful abstract painting! But you didn’t sign it...”. “I didn’t make it”. “The person who made it didn’t sign it…”. “The person who made it cannot sign it”. “Who made it?” “My son”. “How old is he?” “3”. The fact of his age was in itself so special that I didn’t have time to say anything about his disability, in that the man had already given me another blank canvas, saying: “Now let him try again! We must know if this is just a coincidence or an extraordinary gift”. Mele has made hundreds of paintings with his hands since then, and he has received prizes, had national exhibitions and so on.
Very often people attempt to ‘re-qualify’ persons with disabilities by demonstrating what they are capable of doing. But in fact, people are important not because of what they can do, but simply because they exist. You need to give a person the value he has, then the person can show you who he is. Some people say that this is a miracle. But honestly, we don’t need miracles, we need eyes to see them.
6. Conclusions
I want to conclude by reading a poem:
I asked for strength,
and God gave me difficulties to make me strong.
I asked for wisdom,
and God gave me problems to learn to solve.
I asked for prosperity,
and God gave me a brain and brawn to work.
I asked for courage,
and God gave me dangers to overcome.
I asked for love,
and God gave me people to help.
I asked for favors,
and God gave me opportunities.
I received nothing I wanted.
I received everything I needed.[3]
Only you know what that is.
I would like to thank Professor Fabio Ferrucci, Professor Massimo Giulio Campostrini and Professor Sinclair de Courcy Williams for critical reading of this manuscript.
[1] “The Butterfly Circus”, film by Joshua and Rebekah Weigel, 2009.
[2] Speech by Magistrate Antonino Caponnetto (from 1984 to 1990 head of the ‘Rocco Chinnici’ Anti-Mafia pool) ‒ the man who asked for Falcone and Borsellino’s participation.
[3] Sufi poem, attributed to Hazrat Inayat Khan, quoted in The Soul of Money by Lynne Twist, 2003.