I feel the tears start streaming,
The burden like a rock on my chest,
When I have to see him,
Stumbling the ward in constant unrest.
My heart tears into two,
When I see the torment in his eyes,
I know when he tries to talk,
That he’s a weeping man in disguise.
His movements are all jerky,
His speech is all slurred,
I desperately try to soothe him,
but his disease remains uncured.
I try to speak to him,
To show him I care,
The words fly though his head,
But all he can do is blankly stare.
I see his buried exhaustion,
From the nightmares that consume him at night,
The devil who strips his conscience,
Leaving him helpless to fight.
I see the loneliness that rampages his mind,
I try to hold him tight,
But I can see his world is falling apart,
No matter what I try to do to make it right.
He’s withering slowly,
Right before my eyes,
His brain is almost gone,
‘Daddy, I don’t want to say goodbye’ 🥺
But I know that deep down,
There’s nothing i can do,
For nothing will help with the healing,
Huntington’s is cruel and has no rescue.
Now as I sit here terrified to see you fall,
I try to remember all the joy you brought,
All the smiles and laughter,
And how strongly you fought.
Never asking ‘Why me?’,
So daddy, I take your infinite strength,
To prepare for one fact that terrifies me most,
That I don’t want to face at any length,
There’s a 50% chance,
That I will face the same irreversible fate,
For I could have this gene,
That we have all come to hate.
Fear suffocates me as the pain squanders.
Never able to conceive a baby as mine own,
For i could never stand to see,
My babies face this awful disease alone.
So if by chance this is my determined course,
My life shortened by pain and sickness,
Causing me to slowly lose my mind,
I know God will always be there to guide me through the darkness.
Josie Murphy