The Daily Struggle
So many days I think, "I just want to cry," and too many of those times, I do. It's usually preceded by two non-proverbial questions: "Why can't anything just be easy? Why can't things just be the way they should be?" Most often I'm at home talking with Jacob about all the obstacles getting in our way of the checking off items on the never ending list of things Madilyn needs, or what we need to make it happen- money, knowledge, understanding, help... Another list which goes on and on, too.
The tears fill my eyes as I try to hold them back, some nights with more efficacy than others. Finally, they break free from my barricaded lids, rushing down my cheeks as though they were luckier than I to escape the cold fortress of heartache and frustrations inside me. I turn to bury my face into Jacob's shoulder. He wraps his arms around me and I'm instantly comforted knowing how he is feeling. I know because it's how I feel too. It is grief, frustration, sadness, hope and prayers all in one. This connection we share is something I'll never take for granted.
The days continue to come and go, and we do all that we can to make the world better for Madilyn. It's not easy. Some days the fight flat out sucks. Sometimes I feel like giving up but I'd never do that to her. But on some days, those more recent than others, the day is bright and beautiful. Almost transcendental, but it's not quite there. Those are the kind of days I pray for each night. The ones when nothing erupts. Those when Madilyn is content and so are we. The days that let us know, this is what it's all about...
It shouldn't be such a struggle every day. I don't believe it's suppose to be that way. In fact, I can't believe that it is in any way possible, how it's "suppose to be." Not just for us, but all the other families of kids diagnosed with visual impairments, too. Something has to change...
