Dear friends,
I meet you often in the clinic, accompanying your brother or sister. I wish I could speak with you more—and listen to you more. I see so many questions in your eyes, afraid to come out. Your manner testifies, more often than not, to an immense tenderness toward this older or younger brother or sister, so limited in movement or speech, yet so often brimming with life.
Parents are there to help their children become who they are, not to use them.
Our human hearts, sometimes so generous, struggle to love faithfully, day after day.
I sense an awkwardness in you—born of modesty, perhaps, but maybe also of shame, of rebellion, even revulsion toward someone who takes all the family's attention and is a burden too heavy to carry.The difficult moments
I understand and share the pain and confusion of those who are deeply wounded by the illness of a brother or sister they had longed for so much. I understand those who suffocate in a household where everything revolves around the handicapped sister or brother—the rhythm of life, the conversation, the relationships. I understand those fed up with canceled Sundays, ruined vacations, those who dread running into a friend "who doesn't know." I understand those tired of seeing their small things destroyed, their clothes stained, their books torn; those who rebel at being made responsible for mistakes: "You're the one who can think—you should have…" When you hate this brother for all his mistakes, when you wish he would die or never have been born—do not think yourself monsters. Our human hearts, sometimes so generous, struggle to love faithfully, day after day.
Parents are there to help their children become who they are, not to use them.
You find yourselves in this situation without anyone asking your consent. Do not forget that the truly wounded one is not you, but your brother or sister, with whom it sometimes seems so hard to live. He does not want your pity; he does not ask you to be his slaves. He only wants you to share in his life—perhaps not for long, but intensely.
Brotherly help, with a little humor
In those privileged moments when you feel close to him, there is an explosion of joy in his eyes, all the enthusiasm in the world. Then anything is possible, and you can do practically anything. He has no fear if you are there—not of pool water, not of a wobbly bike, not of skis sliding down on their own, not of taking that first difficult step.
You know how to laugh when he makes a mistake or fails, without ridiculing or mocking or dramatizing. You can find the tone that will help a sister keep her composure, be a bit vain, smile more. You can have a scuffle with a somewhat impetuous brother, without cheating, while teaching him to control his strength.
Helping parents with upbringing
"Parents are always afraid—they spoil him, treat him like a baby!" Do not hold it against them. They trembled so much for this fragile child! But you can help them take the first steps toward changing their approach.
For example, arrange, if possible, for your brother to go buy bread, walk the dog around the block, learn to cross the street, take the bus or subway alone. Help your parents understand that from now on you, the older sibling, will take care of the teenager's personal hygiene. At this age a boy naturally does not want his mother washing him anymore. Let the older brother discreetly tend to the younger one. Teach him to shave—perhaps give him an electric razor. If he cannot manage, shave him yourself now and then, but spare him having his mother do it; your brother might be humiliated. It is your job, as older siblings, to look after your sister's appearance: that she is dressed for her age, not like a child, keeping fashion and her taste in mind. Why not anticipate her wishes by giving her a dress or a piece of jewelry she might like?
He does not want your pity; he does not ask you to be his slaves. He only wants you to share in his life—perhaps not for long, but intensely.
Watch also that your parents—good people who work in various movements—do not turn family meals into ANFFAS or Fede e Luce meetings. Encourage and help them take on social responsibilities (it is one of their duties), but in good time. Bring up topics where everyone can share ideas and tell what they have done, seen, read, learned.Open the doors
Open the doors; let your schoolmates in. They will come more readily if they feel welcome. Open them for you to go out too. That is perfectly legitimate. Do things with your friends, take trips abroad, see the world without guilt.
You are not betraying your brother or sister by having a nice vacation without them. When you return home, you will be better disposed toward them. But insist with your parents that your handicapped sibling also receives his friends and goes on vacation with them.
When your brother or sister leaves home
The day may come for your brother or sister to leave the family and move into an institution or group home.
It may be necessary, especially for your parents.
Parents are there to help their children become who they are, not to keep them.
In such cases, it would be better if your handicapped sister or brother did not leave the house after watching you depart one by one with people presented as "new" brothers and sisters, but who in truth came only to take away his "real" sister and his "real" brother.
"Do things with your friends, go out into the world without guilt. Do not betray your brother or sister by taking nice vacations without them."
Your presence at the moment of separation can help ease the situation. You will be there for homecomings too, from institutions that allow them: those will be moments of celebration! And he will be happy to return to his new home, his friends, his work, his life.
Talk, talk, talk
What does he have? What is wrong with my brother, my sister? Do not keep questions inside that were never asked. You see your parents suffer and say nothing; you do not dare ask them plainly what is wrong with him. You seek answers alone without asking knowledgeable people who could help you.
Speak, then. Help your parents speak too. Perhaps they have not yet told you all the precautions they have taken so that you would not be responsible for caring for your brother or sister as adults. Then you can face the future without anxiety.
And heredity
Perhaps you do not dare bring up this subject, but you must know if there are particular risks for your future children. You cannot pretend the problem does not exist and say, as a girl I know did, "It's the same for me, having a child like my brother." Your parents must have the necessary tests to establish whether this condition is hereditary. Your doctor must explain to you how and why, if you carry genes for disability.
Truth sets free. When you know it, you can discuss the matter with whoever will form a family with you, measure the risk, follow medicine's progress that may reduce or eliminate that risk.
What is wrong with my brother, my sister? Do not keep questions inside that were never asked.
You might also seek a friend to help you discover your own gifts and path, and ask the Lord to shed light on what He expects of you (a problem can seem unsolvable yet not be). When you ask everything of God, He gives everything. In some cases of hereditary transmission, marriage is possible, on the condition that you and your partner assume, with full awareness, all that it implies.Soon you will set out and make your own lives. This brother, younger or older, you would have preferred him "different," but you have discovered what is unique in him. You have worked to make him happy, and you are rich for life with all he has taught you. Even if your paths grow ever more distant because of your family, professional, or social situation, you know the constancy of brotherly and sisterly love.
— Marie-Odile Réthoré, 1985