Nolan Bontke's Journal
Written 15 hours ago
year 4, day 233. Bilinda, you read the story just right!!!
We may just stay in our house all winter long. I am pretty cozy right here. Some people get so antsy if they have to stay in more than one day. I am perfectly content. I always have something to do. Just the best place to be.
Nolan has done so well with no stomach issues. I am so excited. I hope we have the formula down to help him with that. We have a meeting with our PA tomorrow and I will see what she thinks. I have to admit that I took a little nap with him today. Maybe that is why I like staying in. Just messing around the house and then a little nap. Not bad.
I got in my paint so I can finish the dining table and start on the pieces that came in yesterday. I can even paint the door to the deck now. Pretty happy about all that. Depending on how Nolan is tomorrow, I might run an errand.
We are watching the Great Light Fight. I would love to do an amazing light show like that. How fun would that be to have people come see it and smile. My little show makes me smile. Some day I want to go see a light display like these.
I would count today as a good day. Nolan did not have any stomach issues or need meds for pain. He was very calm and comfortable. That makes a good day around here. And no drama.
Keep the prayers coming for all those who face struggles at Christmas. It is hard to stay focused on the joy of the season when your heart is heavy. Only with the power of the HOly Spirit are we able to get past the sad weight and see the glimpses of joy. Pray for Nolan to keep having good days. The congestion is kind of back. Please pray that we can keep it from making him so stopped up and cough so hard. Pray for God's peace to surround our home and permeate every one who enters.
I hope no one thought that I am having an easy time with all of this.. I wrote on trying to keep a positive attitude. Saying it and keeping it there are two different things. For the most part, I am handling it. I have had almost 5 years to be prepared for this. The doctors did not think he would make it past 2 years. When Hospice came out, they had read his dr reports and were astounded at all he has done. Every dr said the same thing. They never expected him to have any form of life at all or live past 2 years. It is almost 5 years. But we have known that his time with us would be shorter than we wanted. And I do not like to get extremely emotional in front of people. I prefer to do it at home at night. And I do. But God has been faithful and supported me every step. He has kept me focused on the thought of Nolan standing up and jumping and dancing and being his loud self. That sight makes my heart soar. I want him to be completely healed more than I want to selfishly keep him here with me. So it is not easy. It is extremely difficult. And will be difficult in the days to come. But I know that we will get through and one day, Nolan can show me all over Heaven. All the good spots!!! I am not losing him. I know exactly where he will be. We are just separating for a bit. I just keep repeating that over and over. Not an easy situation but with all the help and support we have, we will get through it. And then Nolan will have the ultimate new life and I will see what God has in store for me. Change is not always easy. It can be very painful. But I can just picture Nolan with that big smile and his eyes all lit up and laughing his loud laugh. That over rides the pain.
Written Dec 8, 2013 8:13pm
year 4, day 232. Another cold day but at least it was tolerable. I think we were in the 40's maybe today. A heat wave. Every thing is all melted off. Nothing left around here.
Nolan still slept a lot today. He did talk quite a bit this afternoon. He told me he was a crazy guy.!!! I just love it when he is silly like that. I am never sure what he will say. I waited til mid afternoon to give him a shower. It was sort of kind of warmer then. That always wears him out. but I can tell he feels so much better after a shower.
So here is our drama today. I was working in the bedroom with him. I waxed my dresser. Now the wax does not smell but I kept smelling something. I smelled it in the hallway and in the other bedrooms and living room. all over the house. So after his shower, it seemed worse and my head was starting to hurt. I called my neighbors and asked them the weirdest question. Would they come smell my house? Well, they laughed but they did. At first they could not smell it, but then the heater came on and they did. So Steve looked the heater over and found a spot where the air was blowing into the house when it should have been blowing out. I called the heater place and finally the tech came out. He took his little reader into the heater closet and I could hear "wow". tHAT is not good. He found the place and there is alittle cap that is supposed to shut off the pipe. You can vent it from either side and the cap shuts off the other side. It had fallen off and so we were getting CD blown into the house. No wonder my head hurt. He fixed the little cap and taped it on really good. He said the reader was reading a very high number. So he checked my CD monitor. The batteries were dead, of course. He said it should have been going off like crazy. We are good now, but he is going to do something else in a few days. Tomorrow I need to change the batteries in all my fire alarms. What an afternoon. If your friends ever ask you to come smell their house, do it!!!!!!
Now we are all settled in under our warm covers. I can't tell if Nolan had a headache or not. He did not seem to. I can usaully tell if something is different but he seemed ok today. Glad that it is all fixed now.
There were a few requests for prayers today. One received a not so good report from a biopsy. Another lost a loved one. Please keep them in your prayers. Pray for NOlan to keep getting over the stomach issues. No problems today. Pray that he has a good night and a better day tomorrow. Pray that he is feeling the upmost peace from Jesus. That the HOly Spirit is constantly reassuring him. Pray that he is content. That he is aware of all that is happening and feels the presence and comfort of Jesus.
We listened to the church message today. The music was so incredible. A Baby Changes Everything. That was a beautiful song. I had never heard it before. So very sweet.
Written Dec 7, 2013 10:23pmYear 4, day 231. another bitter cold day. I threw the trash sack on the front porch but I never went out to take it to the dumpster. So it is still sitting on the porch. That is my outside venture.
We really did snuggle down today. I could not get the house warm. I kept turning up the thermostat one more degree and then one more. I just never got the house warm. I even lit a fire in the wood stove in the living room. It was cozy as long as you stayed close to it.
A couple of friends came out this morning. They were going to bring donuts but they had baked cookies and made fudge, so they brought that. The cookies were delish and fudge is my all time favorite. I need to start working out around here. I am going to weigh 200 pounds. I keep thinking I will get out my workout dvd's again. I just need to do it. Nolan would get a kick out of watching me do them!!!!
A former customer brought out some more pieces. A secretary, mirror, stool and serving table. They will go pretty fast since she wants them all the same color. I went ahead and put another coat of Old White on my chest of drawers. I don't know when my paint will come in. Now I can distress it and wax it. Be ready to put in the bedroom. I think that I am getting another desk tomorrow. A Princess project. She wants it to look like a little princess. Not sure yet what that will look like. Any ideas, just let me know. Painting keeps me busy and sane. I like having something to do. I can paint in the bedroom and visit with NOlan at the same time. It works.
We seem to be kind of on the same pattern for most days. He is just so sleepy all day. Today he was awake a little more. Really awake. I was so glad he was comfortable. I never had to give him anything for pain or anxiety. So it was a good day. He did have hiccups a lot today. I just don't know what to do to stop those. I have some drops that are supposed to help but they don't really. Right now he is sleeping so peacefully. No hiccups or leg cramps.
The ice has really shut down McKinney. Casey got out a little bit and said it was worse. He said that WM had a lot of empty shelves. I saw a picture of a Kroger's near them and the bread aisle was completely empty. When Casey got home, they have an incline up to theparking space and garage. He could not get up the incline. The boys were with him so he let them out to go on up to the house. They had a great time sliding around trying to get up the incline. Casey ended up having to shovel the ice off the driveway in enough places to get the vehicle up the driveway. He was afraid to leave it on the street. They are right a a curve in the street and would have been at the perfect spot to be hit. It took him a while but he got the vehicle up.
Our days are pretty quiet now. I don't get out much and it is so wearing on NOlan to get up or go anywhere. I keep the tv on in the bedroom and the curtains open. I want him to see outside and hear noise. Not just be in a dark quiet room. That would depress me, and probably him. I think he needs to hear music and laughter and voices and dogs barking. When he sleeps, he can sleep through a football game. Noise does not bother him. So if you stop by, don't feel like you need to be quiet. You don't.
Please pray for those who are facing tough challenges during this season. Pray that they feel the intense presence of Jesus. Pray for the families that are struggling. Pray for NOlan to keep having easy restful nights and good days. No more stomach issues or leg cramps. No more pain. Pray that the hiccups stop. Pray that Nolan feels Jesus's sweet comforting presence. Strength and peace. I wish I knew what they talk about. I would love to hear the comforting words from Jesus.
It really is so cozy right here in our bedroom. the fake fireplace is nice and warm and look pretty nice. It is the warmest room in the house. When I get too warm, I just step out into the hall or bathroom. Both bathrooms do not have heat vents so t hey get pretty chilly. You do not linger in those rooms when it is cold.!!!!! I run my bath with straight hot water. The tub is usually cool enough to cool the water just right. Then I grab a towel and run across the hall to the bedroom and get in front of the fake fire. At least this room stays pretty warm. Nolan is snuggled under a down comforter. He stays toasty warm. But when he gets too hot, he starts throwing off the covers. Usually this house will warm up pretty good, but not today. brrrrrrr. We don't care though. We stay nice and cozy. and I have FUDGE and COOKIES to eat. Pretty nice.