I’d like to start by stating these are semi-processed, not necessarily ripe thoughts and reflections from the journey – fresh from the storm, if you will. Everyone’s experience is different, that’s the beauty of life. When I look back at my life five, ten or twenty years from now, I hope my perspective is different, that more strokes have been added to the canvas. Yet for now, these are some of the things I’d tell myself if I could go back to the muggy day in July last year when we received Joey’s diagnosis.
GM-1 both is and feels extremely rare, which means you will have to advocate hard for your child. You will have to explain why your child’s poor sleeping habits cannot be attributed to behavioral issues or bad parenting. You will need to explain to some doctors that due to the unpredictability of his disease, your child needs a more thorough examination than the ‘typical’ pediatric patient, that his wet sounding lungs need to be more of a concern because you are not sure if your son is able to clear the excessive mucus on his own or if he needs to be suctioned (which would be a completely new and scary experience in and of itself).
The lack of knowledge will hurt. It will hurt because until someone fully understands this dreadful disease there won’t be a cure. It will hurt because not only do you have to watch your child suffer and ultimately die, you also have to educate some of the qualified healthcare professionals that are supposed to help you. And it will hurt because by the time you will have convinced the insurance company why a certain piece of equipment will enhance your child’s quality of life, his needs will have changed, and so you will need to find something different.
But knowledge isn’t everything.
People will come around you, love you, support you and carry you through the rough days. You will draw strength from the community of brokenness; people who know the depths of suffering or the pain of loosing a child. While some doctors ‘won’t get it’ your son will receive stellar care by a remarkable group of individuals – because he’s more than a degenerative neurological disorder or a statistic to them. You will be able to rely on their knowledge and expertise, but you will treasure their compassion, thoughtfulness, and kindheartedness.
There will be many heartbreaking conversations and you will have to make difficult decisions pertaining to your child’s life as well as his death. Helplessness will threaten to consume you and in attempts to numb the pain and chaos in your soul you will be tempted to ‘take control’ of things. This is normal and OK, but if you allow yourself to push through the pain and let go, you’ll see that letting go of control actually takes a lot of the pressure off your chest. You’ll be able to stop questioning God and His sovereignty and will find comfort in the fact that He’s in control; always was and always will be, so let go.
Love will make you feel both strong and weak and the toughest challenge will be to keep a soft heart. You will hurt deep because you love deep. Some days, all you will have left is numb, so allow yourself to be numb until hurricane ‘deep’ hits you one way or another again. Allowing both pain and love to co-exist in your heart will stretch your soul, but bitterness, pride and resentment can kill it, so choose wisely.
There will always be grace.
You’ll be in shock for a while, grief will set in and life will become extremely difficult, but you are stronger, so much stronger than you think. There will be many, many sleepless nights. Your son will be in pain and you will set out to do everything in your power to keep him comfortable. He will become blind, a gastronomy tube will deliver nutrition directly to his stomach, he will not be able to move his limbs, will have no head control and suffer frequent seizures. You will feel lost and lonely, but there will always be grace. Practical, financial, emotional and spiritual needs will be met in ways you didn’t know were possible.
Finally, Joey is a gift and will teach you many things about life; that to know and be known is better than to gain all the knowledge and understanding of this world, that letting go of control can be a liberating and ultimately profound experience, that grace is both the canopy that covers and protects as well as the bridge that closes all the gaps. Joey and the journey will give you perspective and God will give you peace.