We're doing a series on prayer at church right now. Pastor Rod is using the Lord's Prayer from Matthew to give us a pattern to pray. This week was the third week of the series, and he focused on the part of the passage that says, "Give us this day our daily bread." You would think there isn't much to say about that. Seems pretty self-explanatory. Boy, are you wrong! I learned more about that one sentence yesterday than I have in my 29 years of life (yes, I'm getting old!). And, I learned something I never really paid attention to before. Pastor Rod broke it down into even shorter parts, teaching about what each word or two meant and how it was useful in praying. But the part that really spoke to me was daily bread. He used the illustration of fresh-baked bread. If you've ever had it, you know that the day it is baked it is delicious. However, if you wait a day to eat it, it is hard and stale, nothing like it was the day before. God does not promise us tomorrow. However, He does promise us that He will meet our needs today. That is the whole point of daily bread. For God to meet our needs just for today. To give us enough strength, peace, hope, food, money, or whatever to make it through today. God knows what our day will hold, and if we can actually rely on Him, He will give us what we need to get through it. I'm sure most of you have heard the scripture that says to let tomorrow worry about itself. That's what we have to do...pray for enough for today, and then tomorrow do the same thing. It's day by day.
This lesson came at the perfect time. Our little family is in probably the roughest financial time of our lives together. I'm being very open and honest because I feel that some of you are right there with me (or have been) and need to hear this. When you have to tell people you can't do things (on a daily basis) because you don't have the money, it gets old. When you have to tell your child they have to wait to have something very simple until pay day, it makes you sad. But, God does not promise us that He will give us enough to go out to eat with our friends every week or to buy things for our children. What He promises is to meet our NEEDS. I have spent a great deal of time over these last weeks really focusing on what my needs are and what my wants are. I'm praying for God to meet our needs - food for today, gas for today, a roof over our heads for today. Do you see a pattern? I'm not praying for tomorrow. I need to focus on today.
Give us this day our daily bread.....
Will Update
I want to start by apologizing to anyone expecting an inspirational post. This will not be that. I just don't have it in me this morning. I will, however, update you guys on what's going on with Will and where we are in all of this.
First, a quick recap for those who didn't read my last post about Will. He saw his neurologist on June 3 and we had some very unexpected things happen. We knew his EEG was abnormal, but this seemed to concern the neurologist more than I thought it would. I guess it's because he is on such a high dose of Keppra that she expected it to normalize. He also had several abnormalities on his neurological exam that were new and concerning. So, long story short, we were referred to three more specialists: epileptology, neurosurgery, and genetics.
We have seen genetics. That appointment was on July 5. Will has had an extensive genetic work-up in the past, but given that his diagnosis is clinical at this point and all the changes, his doctor thought we should re-investigate. So, the geneticist said he would think about disorders or neurotransmitters or mitchondrial disorders. The first is only testable by a lumbar puncture (spinal tap). The second is a blood test. Jeremiah and I decided to think about it for a few days before making a decision, but ultimately we decided to pursue both. The reason for this is that some of these are treatable. Not that Will would be a "normal" kid, but treating could help stop the progression of what's going on and perhaps make that better.
We saw epileptology on Tuesday (July 19). He thinks Will probably needs a second seizure medicine but wants to do a 24 hour video EEG before adding it. This way if they are able to capture a spell they may be able to tailor which medicine they chose to his specific type of seizures. This will require an inpatient overnight hospital stay and Will to leave the EEG leads attached to his head for 24 hours. I am not looking forward to that. We had planned on having the blood drawn for the mitochondrial disorders after that appointment but we waited for over an hour in the exam room for the doctor, and by the time we finished with the appointment, the lab was closed. So, we're going to have to take him back up to the hospital to get the blood drawn.
We were finally called about his MRI yesterday. It is going to be on August 11 at 1:00 in the afternoon. He has to be put to sleep for his MRIs because he can't be still enough when he's awake. (I'm sure that surprises all of you!) What this means is that he won't be able to eat all day before the MRI. He can have clear liquids and jello (which he doesn't like) until around 10:00 but then nothing until he wakes up from the anesthesia. That morning is going to be a nightmare! We are attempting to coordinate the lumbar puncture with the MRI so that he won't have to be sedated on two separate occasions. I've been told that this should be possible, so I have my fingers crossed. We will see neurosurgery after the MRI is done, but we don't have an appointment scheduled yet. I emailed the specialty nurse this morning to let her know when the MRI was in hopes that she can get us in with the neurosurgeon the next day.
Both kids start school on August 15, and I would be thrilled if we could complete this work-up prior to school starting. I am doubtful we'll get the EEG done before then, but hopefully we can get the rest done.
Please continue to pray for us as we journey down this road of figuring out what's going on with Will. Any of you who know me well know that I am the type of person who needs answers. I'd rather have a not-so-good answer than not know anything at all. My prayer is that whatever is causing all of this is easily fixable, whether that means surgery or medicine. Regardless, I definitely need wisdom about how to go forward with future medical decisions, peace about the situation, hope that things will be okay, and strength to deal with this on top of the other stressors in my life. I appreciate you all and will keep you posted as the work-up progresses.
First, a quick recap for those who didn't read my last post about Will. He saw his neurologist on June 3 and we had some very unexpected things happen. We knew his EEG was abnormal, but this seemed to concern the neurologist more than I thought it would. I guess it's because he is on such a high dose of Keppra that she expected it to normalize. He also had several abnormalities on his neurological exam that were new and concerning. So, long story short, we were referred to three more specialists: epileptology, neurosurgery, and genetics.
We have seen genetics. That appointment was on July 5. Will has had an extensive genetic work-up in the past, but given that his diagnosis is clinical at this point and all the changes, his doctor thought we should re-investigate. So, the geneticist said he would think about disorders or neurotransmitters or mitchondrial disorders. The first is only testable by a lumbar puncture (spinal tap). The second is a blood test. Jeremiah and I decided to think about it for a few days before making a decision, but ultimately we decided to pursue both. The reason for this is that some of these are treatable. Not that Will would be a "normal" kid, but treating could help stop the progression of what's going on and perhaps make that better.
We saw epileptology on Tuesday (July 19). He thinks Will probably needs a second seizure medicine but wants to do a 24 hour video EEG before adding it. This way if they are able to capture a spell they may be able to tailor which medicine they chose to his specific type of seizures. This will require an inpatient overnight hospital stay and Will to leave the EEG leads attached to his head for 24 hours. I am not looking forward to that. We had planned on having the blood drawn for the mitochondrial disorders after that appointment but we waited for over an hour in the exam room for the doctor, and by the time we finished with the appointment, the lab was closed. So, we're going to have to take him back up to the hospital to get the blood drawn.
We were finally called about his MRI yesterday. It is going to be on August 11 at 1:00 in the afternoon. He has to be put to sleep for his MRIs because he can't be still enough when he's awake. (I'm sure that surprises all of you!) What this means is that he won't be able to eat all day before the MRI. He can have clear liquids and jello (which he doesn't like) until around 10:00 but then nothing until he wakes up from the anesthesia. That morning is going to be a nightmare! We are attempting to coordinate the lumbar puncture with the MRI so that he won't have to be sedated on two separate occasions. I've been told that this should be possible, so I have my fingers crossed. We will see neurosurgery after the MRI is done, but we don't have an appointment scheduled yet. I emailed the specialty nurse this morning to let her know when the MRI was in hopes that she can get us in with the neurosurgeon the next day.
Both kids start school on August 15, and I would be thrilled if we could complete this work-up prior to school starting. I am doubtful we'll get the EEG done before then, but hopefully we can get the rest done.
Please continue to pray for us as we journey down this road of figuring out what's going on with Will. Any of you who know me well know that I am the type of person who needs answers. I'd rather have a not-so-good answer than not know anything at all. My prayer is that whatever is causing all of this is easily fixable, whether that means surgery or medicine. Regardless, I definitely need wisdom about how to go forward with future medical decisions, peace about the situation, hope that things will be okay, and strength to deal with this on top of the other stressors in my life. I appreciate you all and will keep you posted as the work-up progresses.
Unanswered Prayers
This is something I feel should be addressed. So many people believe that their prayers go unanswered. In fact, there is even a country song about it..."Sometimes I thank God for unanswered prayers, remember when you're talking to the man upstairs, that just because he may not answer doesn't mean he doesn't care, some of God's greatest gifts are unanswered prayers." Thank you Garth Brooks (and now you will all be singing this song all day long!). I think this is wrong, but so many people believe it's true. If God doesn't answer your prayer, exactly how you want it answered, in exactly the time you want it answered, then He doesn't care, wasn't listening, isn't going to answer, or whatever. Forgive my bluntness, but that's a bunch of crap! It has taken me several years to learn this, but God ALWAYS answers prayers. I know it's hard to see that when you're staring down the barrel of a loaded gun, per se, but it's true. It may not seem like it when your world is crumbling down around you. If God answers prayers, why did I lose my job? Why did my spouse/child/parent/best friend get sick? Why did my spouse cheat on me? Why aren't my kids following the Lord? Why is there so much war and sadness going on all around the world? Why? Why? Why? I have asked these exact questions. Why is my son disabled? Why can't we figure out what's wrong with him? But over time, God has shown his greatness over and over. Will can say more words than any other child I've met with his condition. He is a sweet boy who loves his family. He brings joy to every room he enters and blesses others beyond belief. God always answers prayers, but it may not be in the manner or timing we desire. We must remember that God's will and His timing are perfect. I know that's easier said than done, but it's true. Spend time with Him in His word and in prayer and you'll see it. I have several friends and family members going through some pretty serious trials right now, and I hope if you're reading this that you'll remember that in His perfect timing, God WILL answer your prayer with His perfect answer. I pray that we have the peace and understanding to accept God's will and answer to our prayers. So don't think you're prayers are going up into the big empty sky and that no one is listening. He is there. He is always listening. And, He will always answer.
