Sunday, January 25, 2009

Fear and frustration

As you can see, I haven't posted in a while. I am sorry for that. I would like to say that there is some big reason why I haven't posted, but there isn't. I have been working on a very emotion- filled post for about two and a half weeks, and just haven't been able to finish it. I didn't delete it, but I'm not ready for it to be posted.

Today, I'm am suffering from a huge amount of frustration and fear brought about by my adolescent 14 year old son. He lied about taking his medicine this morning. He didn't take it and then lied about it when I asked if he took it. I know that might not seem like a big deal to you, but in our family it can mean life or death.

I'm not overreacting or being overly dramatic. 12 1/2 years ago, Keith and I sat across from a pharmacist (who specialized in liver transplants) and were told that if our then 2 year old son missed one dose of his transplant medication he could die. Now, I understand that was a long time ago, but the importance of said medication was definitely impressed upon us.

Keith and I have always been upfront with Nick about his medical needs. A part of Nick's "raising up" is that he have the knowledge about his medications and each one's importance. Keith and I had to take classes about these medications prior to leaving the hospital with Nick after his liver transplant. When we meet with the transplant team, even now 12 1/2 years later, we (including Nick) are quizzed about his medications (dosages, schedule, why it is given, what it does for Nick's body). This isn't just medicine. This can mean life or death. Keith and I have worked hard to teach Nick how to be responsible with his body.

Keith finally convinced me (after several months of discussion) that it was okay to let Nick be responsible for his medication on Sunday mornings. We would be there as Nick's safety net. It will give him a sense of ownership and control. It will help him to grow up. Apparently, Nick is not anywhere near where we thought he was! His morning meds were delayed by a few hours simply because Nick lied about taking them. Nick is in no real danger by the medication being delayed. It would have been more serious earlier on in his transplant. The danger is in his lack of responsiblity!

My fear and frustration is that after all we have taught him and gone through with him, he still doesn't realize the importance of his medication. If his lovely adolescent brain can blip out with something this important, what other important life lessons will it blip out on? I am completely thankful that we found out before the medication was completely missed. There would have been some danger in that.

Keith and I had to draw out some of the old, painful memories to explain to Nick why his lie was so major. Certainly more major than with most teenagers. That was a hard thing to do. As I said before, we've always been upfront with Nick about his health history. We've never kept anything a secret. It was still hard telling and making him understand again.

I am so glad that Keith and I can provide that safety net to catch Nick when he falls. I have to say though, the net gets heavy at times. Nick's health is a heavy weight to bear. It always has been. We have just gotten better at carrying it over the years, except on days like today. Today, Nick seems worlds away from ever growing up. I suppose that's normal for any teenager, even ones with special needs.

Thanks for letting me vent today. Pray for me, Keith, and Nick while he's growing up. I can't see getting through the next several years without A LOT of prayer!


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