The secret heart of a parent with a medically fragile child feels, like being lost at sea with the rain pouring down, there is no one around to help put your feet on solid ground. Your world overwhelms you and you don't know if you can walk or if you will drown.
Feeling safe and secure is no longer a viable option. Tossed to and fro from Doctors, Therapies, and Hospitals. Never really trusting what you are told or what you have read. Life lines are not there to catch you. The future is too awful to look towards.
The days of feeling like you can't bail one more pail of water, you can only paddle your ship so fast, yet you know if you don't bail that water, paddle as fast as you can, you will have to face the future sooner than you think.
The lies you tell your family, your friends, yourself that all will be ok, all will work out.
The wind that blows you once again off course lead to the biggest storm, the end of the story, yet you beg for it not to be over, you pled to be able to bail one more pail of water, you vow to paddle harder, still your voice falls on deaf ears.
Just when you think that the ship is lost the journey is at an end, for no reason the rain dissipates, the water stops pouring in, your ship has righted itself. You feel elated that you have dodged deaths door once more.
You begin to bail the water with abonnement, paddle at full tilt all the while knowing that you cannot keep this pace, you cannot keep the ship afloat indefinitely and someday the reality of the future is achieved and you have to watch the ship sink.
Living, breathing, existing in that state of knowing where you are, where someday you will be and yet pretending all the while that it is fine you are strong enough to steer the ship and not drown.
That is the secret heart of a parent with a child who is medically fragile.01 02 12