Tulips and Toilets

Uggh..... I get so sick of washing out poopy underwear. TJ does just fine peeing in the potty, but has no desire to poop in it. It is only compounded by the fact that he is tired right now and won't take a nap. It would be so much easier to deal with if we weren't running the risk of kidney damage each time he doesn't pee, and he is chronically constipated. Diet doesn't help, he lacks the muscles to bear down.

Emily Pearl Kingsley wrote a poem called "Welcome to Holland." It really struck a chord with me when I heard it. I got it from a friend with an autistic son, but it applies to any disability. I have had to learn a new language with TJ. The Doctors speak "Italian." I have learned about problems and syndromes that are so rare, they are barely studied. I don't know anyone who knows another person like my son. I have my family and they are my support. But each new stage in TJ's life is like feeling my way around a dark room where the furniture has been rearranged. Everything is uncharted. At best, the doctors that we see often comment that they have seen children like my son, but they didn't live for more than a few days. One specialist has much experience, but has moved across the country to a different hospital.

So I look for the tulips and Rembrandts. I see my son trying to use the potty, and I do my absolute best to encourage him. I have a miracle. He is here. His symptoms are not as bad as they could be. I have a son who puts his arms around me when I am feeling hopeless, and says, "It's ok Mommy. I love you. Try again." And I do.