Last night after my parents left, I got everything set up for bedtime, I straightened up the house, I took my shower... and we were all in bed for around 9:30!! WOW, that never happens. But, of course, Tripp was sleeping and I wasn't tired. Imagine that. Last night was the first time in a long time that I cried. I think it was because I wasn't running around trying to get things done, he was sleeping so I wasn't standing over him waiting for him to fall asleep... I actually had time to THINK about what is going on. I hardly EVER have time to stop and think about everything that goes on in this house. I was sad. Really sad. It's just really hard to have to watch your baby live like ours does. The sores, his poor mouth, the coughing and choking, not being able to breathe. It really messes with your head. You feel completely helpless all the time. But I never even get a chance to feel sad, or be depressed, because every time I even start to feel that way.... I think of all he is going through. He knows when I'm sad, and you may think I'm crazy for thinking that. But he absolutely does. If at anytime I start to cry... he just stares at me... not moving, not being fussy, nothing. Just stares... like he's thinking, "Mom, are you okay?" So I really try not to cry in front of him, even though I am sad all the time. Except of course, when he is happy. Nothing in the world could make me happier than when he smiles. It's truly like a miracle.
I don't know if you read Jen Burns message on Tripp's caringbridge site on December 4th, but it really made me think. Of course as Tripp's mom (and all the other EB moms), I am going to pray for a cure for my sick baby who is suffering. But what if that is not God's plan or God's will. Like she said, HOW GREAT will Tripp's reward be when he gets to heaven. What if God is using OUR SON for something bigger than we could ever imagine. He's already changed MY life and MY husband's life. Maybe he has to suffer so that other's can realize how precious their life is, how lucky they are, and how blessed they must be. I know I've sure realized that. Tripp has opened my eyes to more beautiful things than I could have ever imagined. He's made me realize what TRUE love is, he's shown me the TRUE meaning of FAMILY, and has proved to me that God picked Randy and I to raise a child who is suffering so that he could know what real love is. I just keep thinking, what if Tripp had parents who didn't care or didn't love him, or hold him and squeeze him constantly. What if he never got told "I love you." Would he be in more pain? Do we lessen his pain by loving him and holding him and being there 100% of the time when he is hurting or crying? If we didn't act like silly, crazy people in front of him every day so he will smile, would he ever smile?? Do we make him a happier baby by kissing him a million times a day? I think so. And like Jen said, God told us..."Blessed are those who weep, for GREAT is their reward in HEAVEN." Thanks Jen.
"For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do."