amommysjoy: Love for our little man.

First of all, I should probably apologize because I've really been slacking on my posting lately. It's just hard to find things to write about when you do the SAME thing over and over every day. And things have been a little nuts around here lately. Tripp has been getting mucus plugs again. Yesterday and the day before he woke up in the morning with a plug. Started crying through his mouth, turning blueish-grey. The first time I got it out with saline and the ambu bag. The second time, I had to change out the whole trach. I couldn't figure it out. Because he stays on the trach collar humidifier at night. Finally, I realized it was the heater. The vent is right over his crib in my room. Now remember, our heater does not go over 68 degrees... I'm not trying to give my little "wrapped up mummy" a heat stroke. But I guess it was enough to dry him out. And Randy and my sister both tried to close the vent off, but it's stuck. So last night the heater just stayed off all together and we put a little floor heater in the room by our bed. And guess what? NO mucus plug this morning. Not yet, at least. Tripp is still sleeping and yes, I know I should be sleeping too, but this is the only time I have to do anything. It seems like every time I would sit down and try to blog lately, I would have to get up and do something. And I ALMOST have all my Christmas shopping done. I am buying every single Christmas present online. I know, UPS is gonna HATE our house. But it's the only possible way for me to do it. We haven't been out of the house in, well.... a very long time. And that's okay. I want to feel comfortable taking him out, and I'm not comfortable doing that yet. He's doing much better with the secretions. I'm still suctioning a good bit, but not nearly as much as I used to. Yesterday was bath day. My mom and dad came over, and Randy and my dad BBQed outside while my mom and I did bath inside. I was completely dreading bath time yesterday, because he has been getting more blisters than usual lately and some spots are completely RAW. But you know... it wasn't as bad as I thought it was going to be. He continues to amaze me every day.

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.