Thursday, January 29, 2009


This week has gone better than I thought it would, especially after Sunday's episode with Nick. Keith hasn't had the problems with nausea from his chemo treatment this week, which is great. However, he does seem more tired. It may simply be from this cough that has been hanging around for awhile. Actually, it seems like forever. He is taking the steroid pack that the oncologist prescribed. Keith says he can tell some difference in his breathing. I just wish the cough would stop. He is still miserable from it.

Keith and I have been talking a lot lately about how far God has brought us, especially the last five years. We have met so many wonderful people who lift us up in so many ways. God has worked through them to meet our needs. God has NEVER failed to meet our needs. I said needs, not wants. God has taken care of some of the wants too, but ALWAYS the needs.

It amazes me how blind I was to God's hands at work before Keith got sick. That isn't to say that we didn't see God at work during Nick's illnesses. We did. He was ALWAYS there, ALWAYS providing. I'm just not sure that I saw it as clearly then. I see it now when I look back, but with Keith I can see it clearly almost right away. I am in awe of how amazing God is. I am humbled that God has continued to bless me, when I know I don't deserve it. Isn't grace amazing!

I have been doing a lot of thinking about faith and where I stand in mine. I look back at the journey of my faith and am astonished at the growth. God grew me up. He is still growing me up. I was such a babe in my faith when Nick got sick 13 years ago. Nick's diagnosis shook my faith to it's absolute core. I ranted, yelled, screamed, pouted, and turned away from God. I blamed God for everything. I went through that for 4 months, before God succeeded in literally bringing me to my knees. I have been a Christian since I was 12, but I don't believe that I KNEW what being saved by grace meant until I was 21. My walk with God changed dramatically that day 13 years ago. I quit blaming, yelling, and pouting, and finally started listening. I finally allowed God access to my pain and He began to heal it with His peace...the kind that passes ALL understanding.

When Keith was diagnosed 5 years ago, I didn't get angry at God. I didn't turn away. Instead, I turned to His waiting arms. Staying there isn't always easy, but He never said it would be. I am amazed at the depths of God's love for us. Even when we doubt, even when we sin, even when we shame him...he still loves us. Oh how he loves you and me!

Please continue to pray for Keith and Nick. There are days that it doesn't seem like earthly healing is in God's plan. We just have to trust him and have faith!


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!