The minute you learn your child has a diagnosis of a terminal illness, you die too. You are not literally dying. It is a psychic and emotional death since your old life has come to an end, and the person you were must cease to exist.
That is why the weeks and months after learning your child has a disease like leukodystrophy are so excruciatingly painful. People will call on you to be brave and hold in your feelings and cry in the shower, but this is just absurd.
In time, you realize that what you experienced as a death was you grieving your hopes and dreams for the life you dreamed of having with your child. You will be tempted to live in the past and relive the times when your life seemed perfect and your child was fine. But, to survive the death of your old life, you will learn that visits to the past must be brief because you will lose yourself if you can't let go of your old life.
And in the weeks or months after you thought you died, there will be moments where you find that the crippling pain has become a more managed, throbbing pain. The moments will grow to hours and then eventually days and even weeks before that excruciating pain that kept you in bed for days returns. Eventually, you might even be able to find pleasure in the things that you once enjoyed - like taking a walk or listening to music or going to work. But, it will be so tempting to take pills, eat too much, drink too much and shut yourself off from the people who love you because all you want to do is allow the grief and pain to swallow you whole. You must fight against that sort of self-destructive despair and ask for help when it falls upon you.
You will start to get better when you realize that the grief and death of the person you were is actually a metamorphosis. You are not gone, just becoming a new sort of person. This new person will be so different than who you were. This new person may find the person you used to be silly and ungrateful and foolish. This new person will be much tougher and wiser and more humble than the earlier version of yourself. You see, the thing about suffering and pain is that they make us truly human. And when we can understand what it means to be human, when we see the greater meaning in life, it is only then we can do the things that would have seemed impossible to that person you used to be.
You see, after a while, you come to see that while you would never have chosen this life for you and your family, your love for your child is not a weakness. Your love for your child is a superhuman force; it is the only thing that can never be conquered. And once you become this new person who understands that the only thing that matters is being there for your child, being sure your child knows she is loved. Knowing this makes your life so clear and pure because it absolutely de-cluttered of distractions.
This new person also knows that living with this disease does not require going to battle but finding a way to be grateful for what is possible. To survive, and to thrive, you must now live with no future or past. This new person will see that some days a good day is going to the pool and swimming, another day, a good day is being able to snuggle and watch a movie. And the best days of all might be the ones where you get discharged from the hospital and eat a dinner at home. So many people you know, and the person you were, will find your new life frightening and terrible, but you will feel sorry for the people who cannot see the beauty of your child and don't understand the power of love.
It is not true that things get better or easier, so much as this new version of yourself gets forged in the fires of adversity. Only the people who have not been touched by suffering will call you extraordinary and say dumb things like "I could never do this if I had a child like this." It will astound you that even as life gets harder and this disease may progress, you will be able to find happiness - and even perfection- in things you hardly noticed before. You will even feel sorry for the people who worry about things like a promotion at work or whether their child got on the basketball team. You will become trapped in the paradox that you hate this disease so very much and you don't want your child to be sick. At the same time, how could you ever be that person you used to be?