I have had a few people ask me what exactly a picc line is, since I'm always talking about it when Caleb gets a new one. A picc line is a very thin catheter (tube) that is inserted in a vein in Caleb's arm and then stitched in on either side to keep the line from moving or being pulled out. The catheter actually goes all the way directly into his heart where it delivers a continuous dose of milrinone, which is a powerful drug that helps Caleb's heart continue to beat and helps it to beat stronger. This is why Caleb is constantly attached to his IV pole; he can't ever be off his milrinone. Typically, a picc line can last for about 1-2 months; Caleb has had to get 5 in the time we've been here. They have to switch the dressing every week to minimize the risk of infection. Caleb is so used to this that he holds very still and is such a good sport. Here's this week's dressing change.
Caleb is so used to these things... picc lines and dressing changes, medications and daily shots in his thighs and all the other things involved in the day-to-day life of a kid with congestive heart failure. But I don't really ever get used to it. He's as happy as can be with his life, but I would give ANYTHING for him to NOT know what an echo is, or how to put his own leads back on when the stickers come off his chest. (Yeah, he does that.) It's an ongoing process of me accepting not just my own circumstances, but the circumstances that Caleb has to live with for the rest of his life.
We have been here in this hospital for almost 8 months, and I have realized that the whole "acceptance" thing is something you don't just choose once and you're good; I have to decide over and over again to accept our life. Usually it is a daily choice. Regardless of whether I had a good day yesterday, I am faced time and again with the decision of whether or not I will accept my life as it is. And actually, Daniel said something the other day that took that thought a step further. This week Daniel was a guest speaker at the national Donate Life America annual conference (it happened to be in Indy; he was amazing and got a standing ovation), where he was invited to come and share about our pre-transplant experience. One thing he said is that what's better than accepting our circumstances is actually embracing them, finding joy in these circumstances and being able to be thankful for the life we've been given. I'm not there every day, but I'm having more "accept and embrace" days than "hate this stuff" days. It's almost like these last 8 months we've been going through stages of grief... denial, anger, depression... and now we're arriving at acceptance.
Caleb is so used to these things... picc lines and dressing changes, medications and daily shots in his thighs and all the other things involved in the day-to-day life of a kid with congestive heart failure. But I don't really ever get used to it. He's as happy as can be with his life, but I would give ANYTHING for him to NOT know what an echo is, or how to put his own leads back on when the stickers come off his chest. (Yeah, he does that.) It's an ongoing process of me accepting not just my own circumstances, but the circumstances that Caleb has to live with for the rest of his life.
We have been here in this hospital for almost 8 months, and I have realized that the whole "acceptance" thing is something you don't just choose once and you're good; I have to decide over and over again to accept our life. Usually it is a daily choice. Regardless of whether I had a good day yesterday, I am faced time and again with the decision of whether or not I will accept my life as it is. And actually, Daniel said something the other day that took that thought a step further. This week Daniel was a guest speaker at the national Donate Life America annual conference (it happened to be in Indy; he was amazing and got a standing ovation), where he was invited to come and share about our pre-transplant experience. One thing he said is that what's better than accepting our circumstances is actually embracing them, finding joy in these circumstances and being able to be thankful for the life we've been given. I'm not there every day, but I'm having more "accept and embrace" days than "hate this stuff" days. It's almost like these last 8 months we've been going through stages of grief... denial, anger, depression... and now we're arriving at acceptance.
God's timing is so weird. His agenda is definitely not to just give us what we think we want. I don't always know what on earth His agenda is. But I do believe that when I look back on this time in my life, down the road, I will agree with God that what He did was better than what I would have chosen. Because that's always how it is! I look at the sale of our house... I have wanted to sell that house and move into a bigger one for almost 3 years. It didn't sell, didn't sell, didn't sell. We felt like God was saying, "Wait" so we took it off the market last year. Then Caleb got sick. And because of what we were going through, some very kind people sold us a BEAUTIFUL home for cheaper than they should have, a home that we probably would not have been able to afford without their generosity. That house wouldn't be ours if not for what Caleb has gone through. Then the Espinozas were able to move in to the old house and God provided for someone ELSE through our waiting on His timing. And then literally the week they moved out, a young couple decided they wanted to buy the house, and there won't even be a single month that the house will be unoccupied.
God's timing was PERFECT... and I just think about if He would have given me what I wanted 3 years ago. I would not have the wonderful house I have now, we would not have been able to share our home with our friends, and I would not have learned the lesson of trusting His timing. The house experience has strengthened my faith, and helped me with patience in waiting for Caleb to get a heart. I can't see it now, but I know when I look back, the story will be so clear and His much-better purposes will be obvious. Or maybe they won't be obvious! But I'll know that God wasn't just messing around with us, and that He knows way better than I do what's best for me, best for Caleb, best for His kingdom.
