I have to stay up for a little while tonight, and I am too tired and hot to work more on the house; so I will update this one more time before we go to Duke next week.
This week will be a slight challenge with doctor appointments in Winston and Charlotte. I have a lot to get done at work before I go, but we have been planning; and I hope to have most of it done by Monday anyway.
Pete's mom will be here until next Sunday. She has been with us almost six weeks. When she first came, we thought it was for a few days. But it quickly became apparent that things had drastically changed. While others are still working on doctor appointments and other things, we have tried to answer questions and keep things calm and peaceful, as much as we can. But tonight, after asking similar questions all day, she was even more confused. Pete actually got out of bed to show her her room and bathroom (Sam's room and hall bath). Not two minutes before, I was telling her about Pop, when she showed me his picture again and asked about him, and how Meg would be able to tell her tons of stories when she visits with her. She will go to Charlie's first - her oldest son. And then Meg's the next week. The first time she asked Pete who his parents were, it made him cry. Now she is having trouble remembering Pop. It is heartbreaking. Pete is so patient with her and jokes with her and gives us all a good laugh and break in the middle of tough days. We would appreciate prayer for her - and peace and calm. We have had some good talks, and we have had some really tough days. The boys, especially Sam and Andrew, have been really good with her. We know things will probably change once we get back from Duke, if she continues to change so much and so fast.
Today has been a day of washing bedding on almost everyone's beds, bathing two big dogs, cleaning kitchen cabinets and the floor, packing some things we will need on our trip, cleaning out cabinets, throwing away a bunch of stuff, and then watching a good movie on TV. I am tired but happy to have gotten so much done. Will had mowed with a mower he is trying to sell, so that was extra helpful - and we got those stripes in our yard. Pete had put up an extra handrail on our back steps for his mom. He worked on it and finished it yesterday when 421 was closed, and he knew he could not risk not being able to get back home if he was needed. Last week was Bible School, so I could not do much during the week. It was fun, and I am so glad children came and that we had such wonderful help.
So next Monday, I will try to get everyone ready. Sam is going with Whitney and Laura. His suitcase has been open on an extra bed in Peter's room for over a month. He has so many things packed and is so excited! I hope they are ready for him. He spent his 13th birthday last year at Duke, so we are thankful they offered to keep him. It's tough on a young man to be right there and watch all he had to watch and experience. We take it for granted, but I sometimes step back and see a boy who struggles with so much. Yet, he is the one who calmly alerts me to things and slips up beside us with Andrew's emergency medicine during a seizure, without us even asking yet. He calmly gets wash cloths and waits to see what else we may need. When Sam was very young, Andrew had a seizure while resting on the couch while I had run to get the other boys at school. Sam just patted him and told him he would be okay and did not let him fall. God will have a special place for him, and I have to remember that - especially when school gets harder and harder. On this trip, I am happy he does not have to go; but I am also sad that I won't have the best companion and buddy. He and Pete found some great lunch places in Durham last year and would go to the Dollar Tree. And there is no one who can get you out of that hospital maze and back to your car like Sam!
Peter visited us for a short time this weekend. We miss him so much. Will will be home and watching and feeding the dogs while we are gone. My parents will be here some to help and check on things, as will some of my friends. So the house will be well watched. Our neighbor and Will's boss is very familiar with our house, as it was his grandmother's house. So it makes us feel better to know they are there. We appreciate the help that we have and what has been offered. We have people taking over our extra cleaning jobs and Pete's church responsibilities and appreciate ALL of them.
Right now, we are on schedule to go to Duke on Tuesday, July 10. Andrew has an appointment with the anesthesiologist after lunch. Then they will send us on over to the hospital. He will spend the night and have surgery the next day, the 11th. Then he will go to ICU for the night, since it is brain surgery. My friend who has been through all of this with her husband told me to make sure Pete stays with him there. If all goes well, he should be in the EMU by Thursday and get hooked up and taken off his meds. That already seems like a long time to us. I will ask people to pray for them to get the information they need once he is ready to go. I know he dreads it. I do too. But we pray this will be the path to more independence and freedom for him. We all hate these seizures. It's gotten so much harder as he has gotten older. Pete and I will be there the whole time, unless he feels he can come back for Sunday morning services. If he does, Whitney will come down to be with us. One of us has to be in the room at all times. Our hotel is a five minute walk away, so we can switch off more often. I think that will help. Pete is the one who can sleep in those hospital chairs. Andrew can have visitors, but the rooms are tiny. He probably won't know anyone is there after a few days.
I know most people don't understand. I would be scared of someone with seizures if I did not have to deal with it. I still am. It's watching my phone all of the time. It's calling or texting Andrew to ask him a random question when I hear an ambulance and want to make sure it's not for him. Running upstairs if I hear something fall or hear a noise. Sleeping in the floor or on the couch to make sure we hear him at night. It's being on high alert, only to calm down and to be hit again. It's so unpredictable. I have been told many times by well meaning people that they just could not handle having to deal with a child with seizures. And I want to scream, "I cannot either!!!" But that's the WHOLE point. I cannot. Andrew cannot. Pete cannot. We have to depend on God. We have to. And we want to, so that works out. But we are hoping and praying that God heals him through this surgery. We know He can. We just don't know if it's His plan for Andrew. It's hard. I would trade it. I remember Pete telling a doctor at the hospital at one of our most overwhelming moments (when Sam was diagnosed with Type 1 diabetes) that he would much rather Andrew have diabetes too - instead of seizures. Oh, if we could choose. But we can't.
We have to remain hopeful and be thankful for all of those God has put in our paths to help us. There are some the same for Pete and me and some different. Yes, I get my feelings hurt when people don't act like they care or ask about Andrew, even when his upcoming stay is right in front of them. BUT, they are people. I have missed many things too. That is why I am updating now instead of later. I will ask people to pray when we need that for him, but I need to step back and pray and study my Bible and get ready myself. Because as much as this feels like it's about me too, it's really not. Pete and I will be there to help him. And our focus needs to be and will be on him. God gave him to us for a reason, and we need to do our very best with His help. So we need to be as ready as we can to be there with him and for him.
On Wednesday, July 18, he will have the "strips" surgically removed. They don't do it earlier, even if he has all of his seizures in 24 hours like last time. I think it has to do with messing with his brain again so soon. He will come home that Friday or Saturday. He will have to sleep a certain way because of potential swelling. Dr. Zimmerman is taking his staples out here a couple of weeks after. He will probably take six weeks to recover. Whitney and Laura got him a recliner, so that he can rest in the family room where we can keep a better eye on him. He tried it out last night and really liked it. He has kindles and a tablet, so we are trying to make sure all of those are ready to go. We are getting him a gel pad to sit on to hopefully help his lower back in that bed. And Pete and I will try to get the bed down when he starts having a seizure, so we can hopefully save his back and shoulders some. We learned some things ourselves last time.
We will go back in August and see the neurologist for a follow up. As soon as everyone meets and discusses the results of this EEG, we will meet with the neurosurgeon again (a neat story about him in an earlier blog post). If he is a candidate for the big surgery, he will find out then. He can stop the process at any time. But Andrew knows that the medications are not working for him now for some reason. Truly, Andrew and I agree that the "big" surgery does not sound as bad as what we are getting ready to do. But, we also remember that what we are doing is not as bad as what we originally thought. So all of that helps.
I guess another reason I needed to go ahead and write this is because if I think about it too much, I feel physically sick. Like I could just throw up. In my earlier days, I had trouble visiting my grandmother in the hospital. I would literally turn green. I went to see Eric Kistner after he had his tonsils out and just about passed out. I was white as a sheet. God has worked it out for me to go into all of these hospitals and not have any issues now. But I know how I am deep down. But the thing is, He does too. And He will get me through my part in this. I think this sick feeling is a reminder to give it to Him. It's not me at all.
I am sure Andrew would appreciate cards. I have no idea what the hospital does, but our home address is 361 Harrison Road, Boone, NC 28607. I am sure he will love to hear that people are praying.
This is long, so I will close. Thanks to those of you who pray. Thanks for those who encourage us in many ways.
I heard this Natalie Grant song today. It's always a good reminder to me about what I should want. And it helps my focus.
More Than Anything ~ Natalie Grant
I know if you wanted to you could wave your hand
Spare me this heartache and change your plan
And I know any second you could take my pain away
But even if you don't I pray
Help me want the Healer more than the healing
Help me want the Savior more than the saving
Help me want the Giver more than the giving
Help me want you Jesus more than anything
You know more than anyone that my flesh is weak
And you know I'd give anything for a remedy
And I'll ask a thousand more times to set me free today
Oh but even if you don't I pray
Help me want the Healer more than the healing
Help me want the Savior more than the saving
Help me want the Giver more than the giving
Oh Help me want you Jesus more than anything
When I'm desperate and my hearts overcome
All that I need you've already done
When I'm desperate and my hearts overcome
All that I need you've already done
Oh Jesus Help me want you more than anything
Help me want the Healer more than the healing
Help me want the Savior more than the saving
Help me want the Giver more than the giving
Help me want you Jesus more than anything
Help me want you Jesus more than anything
And the Bible verse attached to my computer at work helps so much too. Thanks again for praying!
"Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit." Romans 15:13
As God would allow, we talked about the Holy Spirit at church this morning. We had combined church with Laurel Springs out at Parkway School. I wrote this last night and heard what I needed to hear this morning. Praise the Lord for once again letting me know He is right here. What a comfort He is. What power there is in being a child of the King! He is in control, so we don't have to be.
