Dear Alvarete,
It’s 11am on Sunday, we’ve been awake for six hours and you finally give me a break, you’ve just fallen asleep on the sofa; the morning medication and the accumulated tiredness have taken their toll on you. I take the opportunity to throw myself down on the floor, since the sofa doesn’t fit the two of us anymore, and try to fall asleep, but the laughter of the neighbours’ children comes in through the window, taking advantage of the nice weather to go out into the street to play.
All kinds of thoughts start running through my head, keeping me awake and not letting me sleep. There are many and varied thoughts, but there is one that bothers me especially: should I get up and go play with your sisters?
Guilt eats me up and I decide to get up, but as I do so, you look at me out of the corner of your eye, your morning nap didn’t last long. My mind clears again and I have no choice but to focus on you. Your sisters will be fine playing with their mother, we are a team for a reason and we take turns, but it still makes me angry that I can’t go out to play at the same time as your mother, it’s as if we occupied the same position on the field and they couldn’t put us to play at the same time.
One of the most difficult things is knowing how to find a balance in the time you dedicate to your different children. This is even more complicated when one of your children requires special care, since we instinctively tend to put our efforts into him or her, which can lead to neglecting the rest.
How do I find balance? It’s something I’ve asked myself many times. While I’m doing it, I carry the weight of guilt of not giving everything I should to your sisters, I do everything I can, but it’s not enough. Plus, I have so many good plans in my head that I would like to do as a family and I don’t see how… so that feeling of guilt only gets bigger.
I remember how a few years ago one of your sisters asked me to play together and how I told her I couldn’t because I had to take care of you. She looked at me and told me that she only played with you, that she never had time to play with her, she turned around and started playing as if nothing had happened, she had assumed the answer even before asking the question.
Shortly after, another of your sisters jumped into the pool and began swimming alone. She was barely 2 years old, as if she were an expert. When she reached the deepest part of the pool, she realized that she was swimming without any help and froze. She began to sink and, before it was too late, I jumped in with clothes to catch her. She was just scared and soon she was back in the water, alone, without help. After a few days, when your mother picked her up from school, she said to her: “You know, mom, I want daddy now.”
These two experiences, just a few days apart, made me think that maybe I wasn’t being the father I should be. Those around me told me how well I was doing, but they only saw my relationship with you. I had forgotten that being a father meant being available to everyone. I, on the other hand, had assumed the role of the firefighter who focuses on putting out the fire, forgetting what the building looks like after the fire.
I have always thought that equality does not mean giving everyone the same, but rather depending on their needs. That is why I believed that my focus should be on you, but I forgot that the rest also had needs, of a different kind, it is true, but they also required my time.
This led me to learn to find time for my sisters, and I think I’ve succeeded. To do so, I’ve had to make difficult decisions and accept some collateral damage, but I don’t regret the path I took, but perhaps I do regret not having taken it sooner.
Without your mother’s help and her generosity it would not have been possible, because when one is with your sisters, the other has to be with you, since you always require attention.
Siblings of disabled or sick people can be the great forgotten ones. We cannot lose sight of the fact that they also have their needs for attention and affection, that they have their maturation times and that we must not ignore them; another thing is that they have to be quicker, but that is different.
It is clear that your sisters have matured earlier, that they have learned things that other people may never do and that they have a sensitivity that is a treasure, but all these virtues can turn into heavy stones. And they will be, if we are not capable of managing their time and emotions, respecting their freedom, teaching them the greatness of love and the value of life. Only in this way will they be able to act according to the dictates of their heart and not out of obligation.
I have seen brothers become slaves, losing their passions and the ability to raise their heads to see that around them there is a world of illusion, worth dreaming and living, acting like soldiers who fulfill their duty without questioning orders.
Life has turned them into heroes without them asking for it, and that is why it is so hard for me to write this letter demanding that we give them the option to decide with their hearts and not with obligation because, although I know that what I say is true, I also know that in many cases the family and economic situation make it impossible. Some parents bear not only the weight of raising their sick child, but also the anguish of the future when they are no longer there, both for the sick child and for what it will mean for their siblings. That is why we should not stop moving towards a society where the superfluous and artificial do not take up space from what is really important. We are building more and more splendid bridges, but we forget those who live in misery under their shadow.
You can follow Mamas & Papas on Facebook, X or sign up here to receive our biweekly newsletter.
#Letter #disabled #son #role #siblings #child #rare #disease