Home of the Four Trans

Let me just brag here. My Justin is a super man.

Yesterday morning, I came in to an awake, but puffy, closed-eyed Justin, waving his hand about to be held. The other arm was strapped down to the bed to prevent him from pulling out his tubes and lines. I gave him my pointer finger, and he grasped his little ball hands around it. I rubbed it as I watched his little mouth suck air. He hadn’t eaten for 2 weeks, poor baby, and was hungry. But, the feeling of joy overwhelmed me more knowing that there’s life in that little body.

I continued to stand by him, said a little prayer, and shushed him to sleep. After 15 minutes, his blood pressure had gone down, his body was still. I let go of that little hand, and let him rest.

Loi spent the remainder of the day with him giving me reports every hour. I went home to my beloved firstborn, Nathan (he needs us, too!).

The report was, by evening time, Justin was extubated and started on a nutrition drip (TPN). If he breathed well on his own for about 6 hours, they’d feed him breastmilk via NG tube. He was taken off dopamine completely. His fluid output was good, so they gave him potassium replacement. Loi says he keeps looking for Loi’s finger to hold on to…cute, little thing.

By morning, he’s off milrinone and lasix drip. He’s awake, but drowsy. His breathing labored when fed breastmilk, so the docs are going to give him a little more time.

He doesn’t cry or act agitated much. The attending commented on what a good baby he is. Most children fuss crazily requiring much more medication. Loi, proud Papa, says Justin is a pretty mellow kid at home, too. He rarely cries.

We’re so lucky

I know from an outsider’s point of view, our story may seem sad. Some may feel sorry for us. The docs give me that face when they ask, “So, how are you today,” like they’re saying, “I’m sorry.” We’re doing good, I smile back, in a cheery voice. Or, I’ll say, “You know, Justin. Full of surprises!” I make it a point not to cry in front of them when I can help it. The message I want to send is, “Don’t feel sorry for us, or Justin.”

I know it’s difficult to fathom how we, as parents, as people, can feel so fortunate, so blessed to have a child like Justin with such health conditions. But, we do. I look at healthy children, running all about, because, well, they’re all around me– my nieces, cousins, children of friends and colleagues. And, I try to search for that ounce of resentment, of wishing for things to be different. But, it’s not there. I love the children around me, and I’m happy for their health. But, I’m proud of my Justin and all that he is, and all that he’s given me and us. We truly are fortunate to be endowed with such responsibility. Justin, so blessed to be given such opportunity for life, such strength to endure human suffering to show us the true meaning of life. Each day I have with Justin is never taken for granted. I appreciate each moment of his breathing existence, those moments when I can see him move that hand, twitch that food, smile that beautiful smile. I’m proud and thankful for such a story to tell.

So, allow me to say, again: don’t feel sorry for us or for Justin because of his condition. It’s only human of us to feel his pain. There are moments of weakness when we just want to break down and ask why, why this innocent child. But, look more to his strengths, rejoice in all that he’s overcome. Look at him as an example that we may not otherwise have had. Rejoice that he is with us, and for all that he has given us. Smile, laugh, and be happy for him. He has life. He has opportunity. I know this is what he would want from all of you.

I’ve told you before, I’m not letting this boy use his condition as an excuse to not be all that he’s meant to be. Please, I beg of you, to do the same. This heart condition is not a hindrance, but a stepping stone. When you see him, smile. I do, even in his worst physical stage. When you speak to him, be truthful and encouraging, but acknowledge all that he’s been through. He’s experienced life so much more than any of us have. Give him that respect.

Again, don’t feel sorry for him. I won’t allow it. Smile, laugh, and be happy. He is here and he makes me proud.

Thank you for all your prayers. I know, that is what gives him so much strength.

This entry was posted on Saturday, January 19th, 2008 at 2:39 pm and is filed under Heart Disease, Justin. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.