Wednesday, March 26, 2008

Diagnosis of a Season

So I guess the season of our life changed a little recently. As many people now know, earlier this month our son was diagnosed with Spinal Muscular Atrophy. This disease causes his muscles to progressively weaken and weaken to the point where they are finally useless. The neurologist and pediatrician believe he has Type III, which hopefully means he will have a typical life expectancy.

Learning of this was really difficult, as I'm sure you could expect. Adam and I cried in the doctor's office, and I cried in the parking garage, and at home, and during family prayer, and at bedtime, and have I woke up and started crying at random times in the middle of the night. I cry for all the things our sweet boy will not be able to do...for the missed soccer games and the games of tag, that he won't serve a normal mission, for the frustration he'll have with a body that won't do what he's asking of it, and for all the difficult questions our baby will one day ask that we're not sure just yet how to answer...will he date? will he marry? will he have children? why am i different? am i going to die? We cry as we watch him now struggle with the feet he drags behind him and as he sits on the floor in nursery to eat snack while all the other kids sit at the table. Will he always be excluded in some way? Will there be friends he won't have? Birthday parties he won't be invited to? Will people be mean to our baby for something he could not possibly have helped? We cry inside each time he coughs and wonder "Is that a normal cough, or is it getting worse? Is this the first sign of a problem?" And we cry that life seems so backwards...that two people so in love--so much more than even when we met--could unknowingly pass on a gene that would do this to the one other person they love most in the world. And this crying is in our hearts, as we ache for our little boy.

And yet, the mercy of it all is that all that is just in our hearts. Our minds know better. We know that our baby is the light of every room he's in, and there will always be people who love him. He is a magnet for smiles, and will always be. We know that we have been blessed with incredible health care professionals who are already watching out for him and helping him achieve more and more. And we know that we are all dying, but life is not about that--it is about living. And we know that our Father in Heaven wanted our baby to live with this disease, and us as his family to work through what comes our way as a result of it. And Adam and I know of the love and support of our family and friends that have been poured upon us as more and more hear of this disease.

So then, when we merge that heart and mind together, we realize that in this season we have a choice. We can live our lives crying for what can't be done, or we can love living. So Adam and I have decided that even if we have good days and bad days, we will teach our son to love living life. Because a wonderful life is what his will be.

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