The burden of care increases, as my sons’ disease takes its course.
Non-ambulant and wheel chair bound, both now struggle to lift their arms.
When will they be unable to feed themselves?
Might this be the next milestone that me and Klara, their parents, face?
Grief is ever-present, as another vital function is taken from them.
Their experience of their disease, Duchenne muscular dystrophy, is so different to ours.
Both were born with it — the disease has always been their reality — and with this has come a remarkable acceptance, that this is how life is.
But where Theodor, with his fierce intelligence and critical, enquiring mind, sometimes rages against his body’s demise, his younger brother Oskar does not.
In him, rather, there is the unlikely grace of his other diagnoses — learning difficulties and autism — both of which give Oskar an innocent curiosity and awe, as his body ceases to do the things it once did.
My niece Judy, in her 60s now, is similarly blessed with such childlike intrigue and wonder, a mind both unwilling and unable to turn on its keeper and fuel it with rage and resentment at her lot in life.
Oskar, like Judy, accepts and embraces his lot — there is no endless questioning and rumination, such tormenting thoughts reserved for us, his parents.
In Theodor, there is a healthy anger — why him?! — but also a strength and wisdom, that in spite of what he has been dealt, he will live his life to the fullest.
Caring for these two young men, 14 and almost 12, is more than anything, humbling, in view of how they live with their lot — this disease that follows its inevitable degenerative progression, yet leaves them undiminished in spirit and will.
It is for us, as their primary carers, their parents, to ensure their spirit and will always win through, that the disease never defines them, but rather, conversely, is the making of them.
This, of course, risks being a trite, romantic notion — the kind of bullshit sentiment one might expect from a Hollywood movie — and yet it need not be.
Parents will do anything for their children, and the parents of children with serious, life-limiting rare diseases are afforded a far greater purpose and conviction.
Their children’s lives will be shorter, and so they will stop at nothing to ensure these lives are as rich, joyful and meaningful as possible.
Care, in this respect, becomes an act of defiance, a big, bold fuck you to the disease, and an act of unconditional love in the face of life’s randomness and impermanence.
The disease will not win, rather their indomitable spirits will.