The days wear on. They often blend one into the other. We've established a routine that currently works well. We know that will change soon as the disease progresses. We know that.
There seems to be two worlds in which we reside. The worlds of raising children with and without special needs. These two worlds often sing in harmony while clashing violently with each other. They sometimes compliment one another and still, in the same breath, put the other down. Each world fills our lives with demands, vying for our attention, our love, our time, and our strength. Little, if any, of these resources are left behind...and what is left for us, we cling to with all we have. We hang in there, if only by a thread on some days or by a rope on others, we hang in there. It's our life.
As our children grow, we too, have grown. A maturation has developed to deal with the conditions associated with the terminal illness that has befallen our daughter. Those words are hard to say and even harder to write...terminal illness.
With the demands that confront us on a daily, nightly, and moment-by-moment basis we find ourselves seeking refuge in many different ways. Often we seek distraction. Places we can go, if only for a short time, to relieve us from what we know.
Distraction from SMA that looms in our household. Distraction from the responsibility that pushes us out of bed several times a night. Distraction from the stark realization, the knowing, the idea that each day--motor neurons in our little girl are slowly but surely dying off. She fights it. Every day...in every way; she fights it.
She fights it with open arms and a smile that can melt steel. She fights it with a will, a determination, and a pride that elicits simple awe. She fights it with humor, with her temper, and with her heart.
She's growing. She's getting heavier simply because she's growing. Her proportions are beginning to become uneven. Her strength...taxed more. We can still pick her up and carry her; and we do so often. Soon she'll begin potty training, attending preschool, and seeking her place in the world of socialization amongst her peers. An interesting prospect to say the least. We have much work to do on many levels.
The days do wear on. We seek solace in each other; in distractions that temporarily take us away; in places that can sometimes be dark and lonely. We find comfort in our family; our friends; people we've never met far and near; and the goodness of the world as it shows itself to us. We find strength in our children as they walk the path with us...often times taking the lead and carving that path.
