Saturday, October 31, 2009

Day 121

Happy Halloween, everyone.

What a glorious day it is. Beautiful robins egg blue cloudless sky. When I left this morning to start my list I couldn't believe how beautiful the morning was. I was telling John that the mountains looked like a pencil sketch in the sky. The sun was at such an angle that there was no imagery or dimension to the mountains. They looked amazing.

I saw a few hot air balloons as well as para-penters. The air was crisp. It couldn't have started out to be a better day.

I am a morning person usually and now that my sleep pattern has returned to almost normal I am happy to watch the sun rise over the Wasatch Front.

Nicole is on the road to recovery. Even with surgery yesterday her pain level is about a 5. I am so happy about that. I know it is hard for her the first few days after surgery because she cannot get out of bed, open areas hurt with just the slightest pressure and just being bored staying in bed all day. Activities I know she would love the most like crocheting she cannot do right now because she has a hard time making her left hand work the way she wants it to. I hope that recovers well. She loves to crochet.

I am grateful we are over a hump. Grateful that we are not waiting and wondering each moment of each day. I know this journey is not over by any means. Our journey so far has been to exercise faith in Jesus Christ, that by Him and though Him all things are possible. Our faith has been stretched many times but knowing all will happen by His will, helps us to build our faith stronger.

I don't know if our journey will be long or short. I know our journey had passed and crossed the paths of many people. As our paths cross, we are blessed to know others and rejoice in their journeys also. Thank you for sharing your journeys with us. The path is long and hot and sweaty sometimes but the cool stream at the end of the path is always welcome.

That is how I look at things. Yes, the work is hard. Yes, I don't like it much. Yes, the path can be dark and dreary sometimes, but, isn't it worth it to push through things that we come up against to get the greatest reward. In my case, a twinkly eye smile, a hug with a pat, seeing Nicole walking and knowing she will be coming home one day. But most of all knowing, if I do my best, journey on my path, that I will receive the greatest reward. Living with my family and God forever.

Friday, October 30, 2009

Day 120

Nicole's surgery went very well today. Dr. Morris is on now and he was the one who did the surgery. I love his demeanor. He is so easy to talk to . He was very pleased with how it went as well as how she is doing. He doesn't think Nicole will be home by Thanksgiving though. But for sure before Christmas. I guess we will see. I was really hoping by Thanksgiving.

My visit today was more of a visit to myself. Nicole was still trying to come out of anesthetic. She mostly slept with a few minutes of lucidness. That is okay though. I stroked her head and told her things I know her spirit heard. I love having that spirit to spirit talk. I know her spirit and it is beautiful.

I had an amazing day. I was able to cross 15 things off my list. Mostly because I had 2 awesome young men come to my home today. TJ and Jake. They worked for 6 hours and got many things done. Several things were lifting or moving heavy things. I was so grateful they came today.

John is going to be so excited when he comes tomorrow. I have made him a great place for him to veg out. A place he can go and no one will bother him. A guys place. I can't wait to show it to him.

Christmas shopping is coming along quite nicely. I have already found some great deals. Now I need to start wrapping stuff up.

I took Christian to the movies tonight. I was happy to have a date with him, just he and I. The movie was even pretty good. I think it was good for him to get out. It is hard for him to stay cooped up all day. Another good reason for John to come into town. He will be able to figure Christian out. John is good at that. He gets the wheels turning in his head and the little people in his brain come out and start looking through all the filing cabinets to find the right information to help John solve the mystery.

I love my family. I love them to death. They are the best family in the whole world. We are strong, we are together in all things.


Thursday, October 29, 2009

Day 119

I think I might be done with my list before the 20th. I hope so . I am buzzing through it quite nicely although after Saturday I won't be able to work on it much until after the 13th so I better get more done quick. 13 more things to check off. YES!

When I walked into the unit today to my surprise Nicole was standing in the hall talking to the daughter of a patient. I could hardly believe my eyes. She smiled at me with her twinklie eyes and took my hand. We chatted for a few more minutes before we took a ride to the cafeteria for Sushi. Today is sushi day and Nicole loves it. Me, not my favorite but anything for her.

I was able to dress her again but it will be the last time for a bit as she is having surgery tomorrow. She will be laid up in bed for maybe 4 days and then if all goes well it will all be down hill from there. I hope to be able to talk to Dr Morris tomorrow about a possible release date.

Christian and I are going to a haunted house tonight in Lindon. It is free and our friends do it every year. Check it out. I hope we actually get there. The last time we went out we had to turn around and go back because he wasn't feeling up to it. I hope he gets better soon. I love that guy.

Wednesday, October 28, 2009

Day 118

Big news in the world of Nicole. She is wearing real clothes! T-shirts and loose fitting tie shorts. What a huge step that is. I was so excited when she told me should could have clothes.

I purchased some new ones at Old Navy in the clearance isle. You know the kind that doesn't cost hardly anything that if it gets ruined it doesn't matter. The new wardrobe....1 plaid pair of shorts, 1 black pair with pink elephants and 1 pink pair with white polka dots. 6 shirts of varying colors all for a mere $20. I love clearance.

I was able to mark 9 things off my list today. Another accomplishment. It may not seem like much but I am happily working through my list and feeling very satisfied.

Christian and I went to Megan's (cousin) birthday party. She just turned 18! Actually it wasn't a birthday party so much as a birthday dinner. She wanted to go to TX Roadhouse. Of course we 'had' to go. All adults and so much fun. It was very nice to get together with cousins and celebrate. Happy Birthday, Megan.

Tuesday, October 27, 2009

Day 117

Oh the weather outside is frightful,
But the fire is so delightful,
And since we've no place to go,
Let It Snow! Let It Snow! Let It Snow!
What a day it has been here in the valleys. Lots of snow. Beautiful fluffy flakes. I wish I just didn't hate winter as much as I do. Mostly because I just don't like being cold.
When I went to the unit today everyone had already been informed by Nicole that I don't like snow and I would probably be in a foul mood. I thought that was very funny that she thought everyone should know that about me.
We immediately left the unit and went to the big bridge to watch the snow and eat lunch. Nicole loves the snow. Everything about it. Snowmen, skiing, sledding, angels, snowball fights.
Me, other the other hand, I am happy to have the hot chocolate waiting for the outside players.
Christian and I went to lunch with Natalie and talked all about snowboarding and how Christian can't wait to get on the slopes. I hope he will be able to do that this year. Things are about the same with him. I wish I had better news to report on him.
Nicole is making progress everyday. Today she didn't need any pain medications until the very end of wound care. That is progress.
I marked off 6 more things on my list today even though it was snowing i still have to keep my mind on getting though my list.
I am still looking for a couple of young men to help me out for 6-10 hours over the next few days. Ten dollars an hour, minimum 3 hours at a shot. Anyone interested give me a call. It would be best if 2 boys came at the same time.
My dad was diagnosed with cancer again today. This is the 4th time. He will be having surgery next Thursday and will start radiation. He has had cancer before but they have never done radiation. I wonder what to expect. I hope all goes well. I put his name on the prayer roll today. We know the power of prayer and I know God is listening.
Thy will be done.

Monday, October 26, 2009

Day 116

My list has begun. Before I arrived at the hospital I had checked off 5 things! As you know my list was 85 long and now it is about 100 long. Happy was I when I has accomplished 5 things. When I see the bold black line through the note I start feeling a ruch of satisfaction. 5 down 95 go.

Nicole and I were able to go on a stroll today. We went to the cafeteria. She got a pumpkin hot chocolate (which is my favorite). It smelled so good. She said it was fantastic. The small things in life are the best. We took that Hot Chocolate to the big bridge window of the hospital and I parked her in the sun where she enjoyed the warmth through the window.

There is a great view of the valley. It is also the flight path of the helicpters coming in for a landing. We just talked. It is so nice to be away from the unit.

PT has been going well as has wound care. Nicole is back to the shower chair and helping herself as bests as she can.

Christian didn't get the okay to go back to work. 2 more weeks at least. More tests were done yesterday also. Hoping there is a puzzle piece missing that can be found. The medications are not working like they thought they would. There has to be another missing link.

I know he is frustrated. He has always been so strong and outgoing. To see him under the weather is frustrating for both of us. For me, I can only support him. There really isn't much else to do. I wish there was.

I was able to mark 3 more things off my list after the hospital. YEAY!

Tonight, our home was BOO'D. A friendly ghost delivered a trick or treat bucket with a sweet message and a sweet treat to our door. Ran the bell and floated away. I was so excited to have those treats. We have never had something like that before. Thank you.

Sunday, October 25, 2009

Day 115

Today, after church, I fell in prayer of thanksgiving and gratitude. Many times in my life I have wondered, 'Why me?' Why me for lots of things. For contracting MS as a young adult, for not finishing college, for having a child born to us with multiple challenges, for, for, for....

Don't get me wrong, I have not been bitter or disappointed by the things that have come our way. I have had many joyous occasions.

The birth of a very healthy child who was joyful the minute he was born. The sealing of John and I together for time and all eternity. The memories I have of all the camping trips, friends we have made along the way and opportunities we have had come our way.

But today I am grateful for one more day with Christian and Nicole. I am grateful that at this point what Christian is dealing with is looking like it will be manageable. I am grateful that he is here for me and I for him. I don't always know what is going on in his head but I love to watch him. He is a lot like his dad. What he thinks you can practically see the gears turning in his head. I wish I could see in there. I bet it would be like a car fix-it place. Tools laying around, Christian looking for the right one. Boy, I love him.

When he was small he would wash his bike. Run the hose over it and wipe it down. Now we are talking maybe age 2-3. He didn't want help, not that a bike that size needed much but he was so particular and methodical when he did that. If Nicole would get in the way he would ever so slightly move the hose so it would drench her and she would move away.

Each day I awaken and the phone hasn't rung in the night I know that for at least right now Nicole is with us. I don't know why some people get more trials. I don't know why some people are born the way they are or why there brains work the way they do. But I do know Nicole is one person that has a hard time giving up. There have been times the past few months when she could have given up and no one would have blamed her. I don't know if I could have that much fight. But I was grateful to see her today when I went to the unit and saw her smiling face. I was grateful she didn't give up today.

I know God have given her some tough things to overcome. We all have tough things. Each one of us. I know we can get through this and you can get through your tough things. We all need to know, kindness goes along way, so does service. When we are kind and/or do service for others then others know we love them and that helps us and them through.

My hope today is to touch one person.

Saturday, October 24, 2009

Day 114

Have I ever told you I LOVE RAIN!!!

Today it is raining. I love to sit by the window and watch the earth be watered. I started loving rain when we moved to Texas. In the Midwest, yes Texas included, when it rains it is like God opened a big zipper in the sky and let the water out. It is amazing! Huge drops hitting the ground make it sound like thunder. The street gather water and you could have boat races. In the summer the rain in warm and you can play in it. The sound of the rain on the roof soothes my soul. It is cleansing.

The air smells fresh when the rain stops. I want to breathe it in all day long. I wish there was an air freshener that really smelled like rain. Not the fake stuff that says rain. I don't know who makes those smells up but who ever it is has never smelled rain.

Today is the get the work done day. Get the work done is what is going on. Re-arranging furniture, re-arranging boxes so I can find stuff. making a room downstairs for John to get away from it all. Even though the basement isn't finished. He will have his desk, books, a comfy chair and a lamp so he can read to his hearts content.

I have noticed my carpet needs to be cleaned. I guess I will put that on the list as well. Might as well, it is already 86 lines long.

Nicole was almost sparkly today. I could tell she was feeling better. Her personality was shining. I got to the hospital before wound care was over today. I was glad they let me in. I have been wanting to see her progression. Most everything looks like it will be accepted. I am glad about that. Today Devin is her nurse. I am happy about that. He is attentive and makes me not feel so bad when I leave. I know she will be in good hands.

Nicole's itching is still there. On one hand it is good because I know the area is healing and getting enough air. But it is also driving her crazy to be so itchy. And driving me a little crazy to be scratching her back so much. A small thing by comparison.

I went out of her room to get something and Nicole's nurse was in the hall. He asked about Christian and how he was doing. As I was telling him how Christian was progressing he told me, "Just so you know, a lot of the nurses up here pray for you and your family each day." I was touched. I am grateful for that knowledge. It makes my heart sing.

Many projects to get done today and the next 25 days. I am going to ask at church tomorrow if there are any priests who might want to work for me for the next week or two in the afternoon to earn so extra money. I need some help to get things arranged and put where I can find them. All before John comes to town and maybe a few days after.

Friday, October 23, 2009

Day 113

I have more on my plate than I know what to do with right now. You know, I am secretly Wonder Woman. I can do anything, but, today I feel my powers are just dwindling. I need my powers recharged. I guess I will have to double my DSF. Adrenal boost in a pill. I have to say it never fails me.

I wouldn't be able to get this far either without the strength that I have been given by my Heavenly Father and Jesus Christ. Nor would I be able to function each day without the support of my Amazing Husband, John, my Sweet son, Christian and all the family and friends who helps us and prays for us. And all the people we haven't met yet that keep us in their prayers daily. I know I wouldn't have gotten this far in the process of all that is going on now without all the prayers that have been offered on our behalf. Thank you from the bottom of my heart, and the sides and the top!

Nicole still cannot get out of bed. Wound care and PT is still bed side. I wish I could be there to comfort her. I can't imagine how hard it is for Nicole with no one there to hold her hand, for her to be able to squeeze it. Just to know there is someone there to love her through the process. I know if roles were reversed I would feel better to be able to squeeze the hand of someone who loves me.

Sometimes I feel so helpless when I am there. I know what I want to do to help her but my hands are tied. What is a parent to do? I pray daily for angels to tend to her when I cannot be there. To comfort her and watch over her. I know Heavenly Father is always mindful of our situation and will not leave her alone. I am grateful to know that. It gives me strength when I have to leave her.

So much to do with so little time. I have geared myself to get things done by November 20th. I hope it happens before that time. Even though the doctors have not given me a specific day as to when she will be coming home I don't think it will be before November 23rd. That is why I choose the 20th. To be able to have 2 days of just rest, relaxation and respite before my life will not be as a know it. But that is okay. It is what I signed up for.

Thanks a bunch

Thank you to all the men from the Traverse Mountain 2nd Ward who help us unload our TWO trucks in Lehi. You worked tirelessly and I so appreciate it. I don't know what I would have done without your help. Two nights, two trucks. And especially to Tom and Jordan who were there both nights. You're all amazing!

Thursday, October 22, 2009

Day 112

Today I witnessed first hand what I am missing by not being at the hospital whenever I want. When I arrived at noon Nicole was crying. She look as though she had been crying for at least 15 minutes. Probably longer. Her pain was not under control. The nurse had given her Oxycodone before I got there and when I got there I asked for something more. She brought Tylenol. What?! You think that will do the trick? I don't think so. I asked her to ask the Doctor for morphine or something for break through pain. She finally came back 30 minutes later with morphine. I was happy for that but it was short lived. It only lasted about 40 minutes before the pain came back full force.

I can't believe that the Doctor doesn't have her on something to keep the pain under control without having to ask him each time. After the morphine wasn't working she cried for another 45-60 minutes before they brought something else in. The only thing I could do was hold her hand. There was not any place I could touch her to try to soothe her because the pain from the donor sites and graph sites was too intense.

If I was there each day all day I would be able to keep on top of this. As it was 2pm came and they wanted me to leave. I told them I wasn't leaving until the pain was under control. That was not received well but I was not budging. Pain under control at 2:55pm

I feel so in the dark. When I call and ask how things are going and how she is doing I am under the impression the staff is side stepping all the info and just telling me a minuscule amount of information. I am beginning to hate this place. I know the staff is under orders but we are talking the life of Nicole here. If they don't give it to me straight I can't advocate for her. I see now, That is what they are trying to do. Keep me from being her advocate.

I know God is there to help us all. I know he will help us through this and We will be better for it.

Wednesday, October 21, 2009

Day 110

I spoke with Nicole a few times today to access her and what is happening. Pain is happening. It has been hard for the nurses to regulate her pain today. She will not have any PT at least today and maybe tomorrow also. She will not be allowed to get up either. I just wanted to reach through the phone and hug her and kiss her. But I guess that will have to be done by the grandparents today.

Christian had to use his emergency kit two times today. He is also winded. I pray this doesn't drag on. Nothing like a very active guy who is not able to work out at the gym and go to work or hang out with friends.

He is an amazing guy. For those who don't know him, I hope one day you will get to meet him. He would do anything for anyone. His compassion runs deep. What a great asset to our home and family.

Well I got home today. Driving Parleys Canyon wasn't as bad as I thought it would be thanks to the tips from Gary. I was glad to pull onto our street and know that in a few steps I could have a shower, rest for a few minutes and then start unloading the trucks.

So grateful to be back her and know that I can see Nicole tomorrow, I can be here to help Christian and I made it here without snow or accident.

Lots of unloading. Thank goodness I don't have to unpack 99% of it now. Most of it will be gone through and sold, donated or tossed. I wanted to do that before now but being gone for nearly 4 months put the kibosh on that. I guess I will do it here instead. Garage sale anyone? Maybe will be better. Well I better get to work.

Tuesday, October 20, 2009

Day 109

Nicole's surgery today went well. Dr. Saffle finished up her left arm and her left leg. Also put a few stitches in her stoma to stimulate it to finish closing up. My hope is the graphs will stick and the next surgery will be next week and those graphs will stick. Then complete healing to occur with her graph sites, her donors sites and everything else she is dealing with.

After surgery was very traumatic for her. It took the nurse 3 hours to get the pain under control. I don't get why it takes so long. I wish I could have been there to comfort her. Sometimes when we are in pain just the touch of our mother can make the pain more bearable.

I know her healing will rapidly progress once we get her home. I will be able to use the cold laser on her and that I know will dramatically change the healing process for the good. I hope when we take her in they will acknowledge how much she has healed and realize we are only wanting to do that therapy because it is for the greater good of Nicole.

Christian for the most part is doing better. He still has a few hours each day when he feels weird. I hope this is regulated soon. He is bored staying home. Not a lot to do when you are the only one home for days on end.

He did get to work on his Hot-Rod for a few hours. It is a Magnum SRT-8. He just put in a new super fast engine pus it is super charged. It really purrs.

I started driving our second moving truck to UT today. ME! driving a 26 foot long, 12 foot high truck. I was pretty sure I could do it and when I started out I learned how easy it was. Well as easy as a 26 foot truck can be. Me and Toka driving along. We had our food and water all tucked in the cab and a blanket for her to sleep on.

I did get a little more than half way before I pulled over and got a hotel.

God has really put us on a path. I know the road map is written, I just pray I can read it. I was thinking about that when I was driving today. I have driven to and from Kansas countless times. I know the way forward and backward. When I was driving in several places it was very foggy. Even though I knew the road, a few times I was unsure of where I was. I knew the 'path' but was just trying to stay on it. I knew Heavenly Father wouldn't let anything happen because I was doing what I was supposed to. Taking our belonging to UT so I could be there to support Nicole and Christian. I know at this time of our life that is the plan. It is not the easiest plan but we are following it anyway. Soon the fog dissipated and the 'path' was clear. I continued on my way contemplating what had just happened.

Thank You, Thank You

Thank you so much to the Rolling Hills Ward for all the packing our home help and packing the truck help. Many tireless hours from many women and men. We so appreciate the time you took out of your schedules to serve us.

Monday, October 19, 2009

Day 108

We have packed the truck up so tight not a tiny thing will fit in there now. I will be leaving in the morning for the drive to Salt Lake City. Gary said it took him 21 hours. I hope it takes me that or less. His truck only went 60-65 and I hope mine will go at least 65. I have driven a big truck like that before but not that far. Good thing I have an I-Pod.

Nicole's day was another good day. Surgery tomorrow. Left arm and the rest of the right thigh. If all goes well surgery in 7 days again. I hope so. I just want her home. So many thoughts weigh on my mind about her coming home. I know I have taken care of her before in a dire situation for months, I hope I can this time. I know Heavenly Father will help me all I need to do is ask.

Like today for example. I lost my phone. I couldn't find it anywhere. I was more worried that i would be traveling all the way back to UT with no phone. Well after looking every place I could think of I said a short prayer. I was sitting in the cab of the truck. I got out and started walking toward the van. The thought came into my head. Look in the garbage can. Really? well I did. It was in there. I had thrown it away with a few things earlier. God is amazing.

Christian slid backwards a little himself today. More chest pain and nausea. I hope this is the med for him. I wish he were here with me.

Sunday, October 18, 2009

Day 107

Yesterday my brother-in-law Gary flew to Wichita to drive our moving truck to Utah. What a save that was for me until John called me about an hour before Gary landed and told me not everything will fit in one truck so I still had to fly to Wichita to drive another truck. I can't believe we have so much stuff. I knew we had a big house and a lot of stuff by I never imagined that it was this much. (Tim, I owe you a steak dinner. You were right)

So today early I flew to Wichita just in time to eat dinner with our friends, Pete and Linda. It was great. So nice to be greeted by a home cooked meal. Thanks so much.

John and I started right in getting the rest of the stuff ready to load the truck tomorrow. The truck place didn't have a truck for us until Monday. Not much sleep for me but even less for John.

Nicole had a terrific day. She bathed herself as well as took her own bandages off. I am so proud of her. She is working hard to do what is asked of her. PT is still grueling.

Christian's is home and resting as best as he can. He is so bored. I don't blame him. I told him he should enroll in a class online. He is really chomping to get back to work but that won't happen for at least a week. So glad he is home.

Saturday, October 17, 2009

Day 106

Christian was sprung today after many instructions on how to keep himself healthy and not passing out. Besides a prescription that he will have to take for at least a year, he has to carry his 'EMERGENCY KIT'. I have made him several pouches of M & M's to carry with him. He doesn't like chocolate so I am sure he just won't be eating them just because they are there.

He was so happy to be out of the hospital. Eating regular food was high on his priority list. Christian's own words, "This hospital food is the worst". I don't know what the room food tasted like but the cafeteria wasn't too bad.

Grateful is my heart today again for the doctors at this hospital. That they, through the blessing of our Heavenly Father, were able to figure out the puzzle of our son.

I ran up to the University of Utah hospital to see Nicole today. The first time I have seen her since I have been back. I didn't tell her because I was taking care of Christian's needs and her needs were being taken care of. When I walked in her room she was so shocked. She looked on her board to see if this was the day I was supposed to come back and saw that it wasn't. What a beaming face. I was so glad to see her.

There she was eating a turkey wrap and drinking pink lemonade. I just hugged her and she hugged me back. We just chatted and caught up. She told me all she was doing in PT and how well she was doing. I got a first hand look when she had to use the restroom. Nicole was able to get herself turned around in bed and was able to stand on her own. She walked all on her own to the restroom and back.

Shaun, a nurse, was walking behind her saying, "faster, faster" and Nicole even turned around and tried to reach for him like she was mad. But we know she wasn't because her and Shaun tease each other back and forth. It is actually very fun to see.

Nicole and I took a walk (well I walked and she rode) outside. Today was a great day to go out. Very sunny and about 70 degrees. Nicole wanted to face the sun. We sat there for 30 minutes. It was great. The best thing was just seeing her today. I thought I wasn't going to see her until Monday.

Nicole is on the schedule to have surgery on Tuesday. If that goes well she will have another surgery the following Monday. If that one goes well and all the auto-graphs take and there is no rejection she could be home within 4 weeks later. Right on my birthday.

A surprise visit at my home tonight. Ashley and her sister Alyssa (from TX) came by to see me. I haven't seen Alyssa for like 10 years. She has grown up quite nicely. She will be attending BYU-I in January. She came to spend fall break with Ashley and I was glad she wanted to spend a few hours with me. I cooked and did laundry (that was in much need of doing) while they talked to me and kept me company.

Friday, October 16, 2009

Day 105

Sweet Nicole's day was hard. PT is working her very hard and it is causing her quite a bit of pain. I know they have to push but I am wondering how much is too much. I wish I could take on some of this pain for her. What is a mother to do?

Yesterday, when my parents went to visit Nicole they found her I-pod missing. Can you believe it? Someone stealing an I-Pod from a sick person. I just don't get it. It was a classic 120G. It has her name engraved on the back. I hope who ever has it now feels very guilty each time they look at the back and see her name there. It could only be a hospital employee because her room is restricted to only immediate family and if they saw someone try to go in there they would be there inquiring.

On the upside. Nicole's is eating better and better. At this time there is nothing she is restricted from. Sandwiches, lasagna, spaghetti, fruit plates, pizza. All are for the eating. After 3 months of not eating I am sure she is loving it.

Nicole is walking more and more each day. She is still in the robot stage. I am not sure if that will be a permanent thing or not. I hope not. But if that is what it is then we will adjust.

I am getting really good at adjusting. At least I hope I am. Adjust and re-adjust. That should be my motto.

We have a diagnosis!

NeuroCardiogenic Syncope. What does that mean? His brain is not talking to the heart to make it pump blood to it. So his brain is blood deprive which makes him pass out. There is medications that help. The cardiology team started him on one today. We will see if it is the one to help him. They will keep trying different ones until they find the right one.

Christian will have to carry an "emergency kit" with him at all times. Gatorade, salt packets and M & M's. Funny, I know. Gatorade because it has lots of salt in it. Salt, obvious and M & M's for caffeine and salt. Actually, it can be any chocolate but the recommend M & M's. The doctors want him to drink Gatorade everyday and have extra salt.

We are grateful for the diagnosis. I knew it would come today. Our brother-in-law Rich gave Christian a blessing last night. He blessed Christian that his body would heal and he blessed the doctors they would have fresh eyes to look at the results and be able to find the answers.


With faith all things happen for good. What do people do without God in their lives. I would be lost. I am not saying that because I know the power and influence I have in my life because of Him. I am saying I receive great comfort in the knowledge that He is there to help me, to direct me, to watch out for me, to comfort me, to walk with me and to carry me.

I am relieved that it isn't a brain tumor, a worse heart condition then he already has or seizures. Even though this is a something to get used to it is much better then the previous.

Thursday, October 15, 2009


Contemplating the last few days about all that is going on. Our life is so crazy. I couldn't write a book that even touched this stuff. They say really life is weirder than fiction. I believe it.

Day 104

I finally arrived last night at 10:30. I was blessed that when I arrived in Denver the arrival gate was also the departure gate. How lucky is that considering I only had 10 minutes to get to my next gate. When we boarded again we actually sat on the tarmac for another 45 minutes before they let us push back. I was chomping to get to UT to see how thing are going.

When I arrived at the hospital things were about the same. No news. Until...

Christian had another pass out episode. I was right there. It happened in slow-mo. I am glad I was there but it was scary just the same. I finally climbed into bed at 3am.

It doesn't seem like much is going on in the hospital with Christian. Many doctors in and out. Nurses always checking on stuff. Not a lot of sleeping going on. As the doctor in the night said, "It is always day here." That is an understatement. There is a lot going on behind the scenes.

EEG and MRI today.

I hope there is one doctor today that can shed light on the situation.

I just want it to be figured out. I want just one thing to hold on to. Either they figure it out and it can be fixed or they find nothing and it all goes away never to return again. I don't like being the one who can't fix it. As a parent I feel like I should be able to fix it all. I want to fix it all. Why can't I fix it?

Nicole has had a pretty good day herself. PT is working out her legs more and more. This afternoon she didn't want to go back to PT because her legs were too sore and painful.

Surgery was going to be today or tomorrow but Dr. Saffle thought to give her another couple of days of healing. On one hand I like that idea but on the other hand that will just be more days having to spend in the unit before going home.

Nicole is homesick. I am homesick for her, too. I know it must be hard for her not sleeping in her own bed or wearing her own clothes or showering in her own bathroom. I know when I am away I can't wait to sleep in my own bed.

I think macaroni and cheese may be her favorite food group. She is going to turn into macaroni and cheese. I brought to the hospital several Easy Mac bowls. They are a cinch to use. Just add water and put in the microwave. 2 minutes later, voila, mac n cheese.

Wednesday, October 14, 2009

Day 103

Dreary in Wichita and going to dreary Salt Lake City. I just spoke to Nicole who has had a great day. She reported PT worked her HAARRDDD. That is the only way she will be strong enough to get home. She needs to push herself to be able to accomplish all that she wants.

I am glad she is using the shower chair still and has not had a down turn so that it requires the tank room table. I think she is much happier on the chair. She is learning to wash herself. I will be needing to get a shower chair for her. I am thinking of changing out the shower head in our shower for a wand one. It will be easier for her to use as she will be needing to use our shower.

Did I tell you I am starting to stock pile supplies for when she comes home. I believe it will help me when she comes home so I don't have to run and get things. I made an inventory of things I am anticipating as far as supplies.

I have also made my list for Christmas. I will be starting shopping for that next week. Wrapping also. I want it all ready before Nicole comes home. I may not have the time after she is home to do those things. My list for baking is growing also. I love to bake at Christmas time. I am sad my baker helper will not be helping me this year but it will be fun anyway. AND...I will get to lick ALL the bowls. Yea for me!

We still don't have any news on Christian. many more tests were ordered. 5 doctors are working to solve this problem. Records have been sent from Wichita to Salt Lake City from his previous cardiologist. I pray for his comfort. I pray for him to have peace. I know it isn't easy for him. He has never been in a hospital since he was born.

My flight out of Wichita has been delayed 4 hours. I hope I can make my connection in Denver. I don't need another over night in Denver. Besides, my overnight buddy Lisa won't be with me to keep me company. And I don't have a blanket. The airport there is so cold.

I know we are strengthen by the opportunities that come our way. Yes, I said opportunities. These opportunities give us strength, perseverance, perspective, guidance, shelter in His bosom, experience and preservation.

Tuesday, October 13, 2009

Day 103

Do you ever wonder, "What did I ever do to deserve this?" I have wondered that on occasion. But that thought has raced through my mind many times today.

First, Nicole has had a good day. PT went well as well as wound care although wound care was quite painful today. She has had quite a number of days where she is very cold. I hope that passes soon.

Our son Christian is also in the hospital listed in serious condition. Yesterday he woke not feeling well. He told me he felt strange and he never felt this way before. I arranged for my brother-in-law to take him to the MD but when he got there Christian didn't answer the door. He was able to gain access to our home and when he went in he found Christian at the bottom of our staircase unconscious and unresponsive. He called 911 and they toke him by ambulance to the hospital. He didn't come to for over an hour and when he did was very combative. They have run tests and taken several CT's. We are hoping to get some results today. He blood pressure is dangerously low. The waiting game is almost more that a person should have to endure.

I am coming back to UT to be with him and help him through this. I hope I can get a flight.

Monday, October 12, 2009

Day 102

I am not sure I want Winter to be here quite yet. I think it is too early in the year yet. Although I do love to see snow on the mountains or walk outside and smell the autumn air or smell the air when it is going to snow. Do you know what that smells like? It is amazing.

Many great things to report on Sweet Nicole today.

To start with her surgery will be on Thursday. I am glad they have made that decision.

Her body doesn't feel as cold today. The extra heater is still in her room but only 3 blankets today.

They took out Nicole's feeding tube. Happy day! That is such a good sign. As long as she keeps eating enough calories they will keep the tube out. Today for lunch she had spaghetti and corn, potato soup, mango's and kiwis as well as sliced cheese. WOW! That is a lot of calories. She really has to force a lot in herself to keep the calorie count up.

PT today is another milestone. She walked on the tread mill for 10 minutes. It was a very slow pace but she actually kept up well. That will really help her endurance as well as range of motion with her legs. They have a bike for her arm movement and she was able to use it for 10 minutes also. I wish I could have been there to see the progression she is making. There is no one there to cheer her on. Don't get me wrong. The PT people say good job but it is not the same as a parent saying it. I also do it more enthusiastically as well as clap or do high five's.

I am so proud of her progress and so grateful for the love and compassion of our Heavenly Father to help her through. Many people around the world have prayed for Nicole to which we are grateful for. Thank you.

Sunday, October 11, 2009

Day 101

We finally made it to Kansas about 5:30 pm. The drive took us about 3 hours longer than expected. We had bad weather 80% of the way. The best thing when we arrived in Wichita was.....we had tickets to the fundraising dinner at St. Anthony's. Each year they have a fundraiser for different charities in town. The dinner is Lebanese and is always fabulous. I didn't have to make dinner after a long drive and all I had to do was unload our stuff at the clinic and go home and unload there and go to bed. I was so happy.

Sweet Nicole had a good day. PT went very well as did wound care. Megan, Nicole's nurse today, reported she will be having surgery Thursday or Friday. Her left arm is on the agenda today which I am happy about. I can't wait until her arm is finally healed. I pray that the graph this time will take. This will be the 3rd time.

Nicole's back is healing quite nicely. It is so itchy, which is a good sign. Her right arm and hand and doing exceptionally well. She has great range of motion in the arm as well as more dexterity in her hand. She is able to most things with that hand. Left arm has very limited range of motion which we are hoping this next surgery will help benefit that. Mostly it is from the elbow. PT is trying to figure out why they are not getting more range.

Nicole is having a hard time staying warm. Today she has on 6 blankets plus an extra room heater. Even with all that covering her temperature still stays normal. I hope this gets regulated soon.

Saturday, October 10, 2009

Day 100

Can you believe it? 100 Days. I can hardly believe it myself. So much has gone on these last 100 days. The roller coaster has been up and down many hills. I hope it has enough to continue on.

I awoke to a glorious morning. Blue sky, slight breeze. Amazing. I don't want it to end. Fall is here and the mountains are in their finest. The leaves are changing and they are snow capped. Who could ask for a more beautiful picture.

John and I went to a wedding this morning. The wedding of our cousins daughter, Becca and Taylor. It was beautiful. They were sealed in the Salt Lake Temple. I was a little teary as I watched the scene unfold in front of me as I thought of my own children one day being sealed for time AND all eternity. As you can imagine I thought of Nicole and wondered if she would receive that blessing on this earth.

The Doctor resumed Nicole's food this afternoon. She was so grateful. Her stomach is still hurting but they are going to try food anyway. I hope it all doesn't come tumbling down around them.
I haven't seen her yet today and will not until late tonight. I have talked to the nurses and to Nicole today and have been updated.

PT went fairly well as did wound care albeit the pain. She didn't walk too much today but I am sure she will be back to walking more before long.

John and I have spoke to many people this week to help us with the dilemma we have with visitation. I hope that the contacts we have made will help.

Friday, October 9, 2009

Day 99

Even though the CT scan didn't show anything in the night Nicole is off food and water by mouth in case something is wrong and they have to operate. Dr. Saffle is keeping a close watch on her. Her has been in 3 times today to check on her. The pain in her abdomen has still not gone away.

Nicole has not been able to get out of bed today except for going to the restroom. No PT, No wound care.

I can tell she doesn't feel good at all. Her eyes don't dance, there is no fiestiness in her today. Eyes are very telling you know. You can say many things with your eyes. Some people can see deep in your eyes clear to you soul.

Since we are leaving to go to Kansas tomorrow, we stopped by Christian's TX Roadhouse for dinner. We love that place. Good food for a fair price. We have had many good steaks there but tonight I have to say it was the best steak. John's said his was too. Even though we only were able to see Christian for a few minutes if was still nice.

I will be gone for 9 days moving the rest of our stuff to UT. It will seem like forever to be away from Nicole. And now that I have been in UT for over 3 months it will be hard to leave Christian too. Even though he is 24 it has been so nice to have him close. He has been a rock to me. I may not see him everyday, but I know he is not far if I need him.

CT Results

The results came in at 3:30am. Nicole does not have appendicitis. We are so grateful for that. They will be doing more tests today to see what is going on. Hopefully they will figure it out soon.

Thursday, October 8, 2009

Day 98

John and I had a short meeting with Dr. Rich (one of the ones who blew us off this week). We hit a brick wall. She is not giving in at all I just don't get it. I don't get when people are sick and serious or critical why they would limit visits. Why, when they have told us it is still 50/50, would providers limit visitation when that is also limiting time we may not have with her. I will never understand.

As John and I talked about it later we are still muddled by what is going on.

When John is in town we are very busy with our small clinic. It is actually nice for me to keep busy since I am not at the hospital. The days are long when I am not there. I am going to school also so I can delve further into my studies.

Upon entering the unit tonight we found Nicole having quite a bit of abdominal pain, right sided. My first thought was appendix. I asked the nurse what she thought and that was her thoughts, too. They drew labs and decided to get a CT scan of her abdomen. They didn't take her until after we left but the nurse told us she would call us when the scan had been read. I hope it is not appendix.

I hope Nicole will be able to regulate her temperature better as she gets better. She is either extremely cold or extremely hot. Tonight it was cold. I think she had on 6 blankets. I am usually the cold one and she is the hot one. She was taking after John in that department. But her coldness is pretty extreme.

I am happy to report that the MRSA on her face is nearly gone. Only 4 spots that are quite small.

Nicole's back is progressing quite nicely. Her back has many skin buds on it. That is areas that are bumpy and that means the skin there is regenerating underneath. I can't wait for her skin to be well enough to harvest again. I know it is going to be painful and we may run into slow healing again, but, that is one step closer to coming home. What a rejoicing day that will be.

Wednesday, October 7, 2009

Day 97

Walking into the unit tonight I had a new appreciation for 'someone always has it worse than you.' A new patient arrived yesterday. He is burned more severe than Nicole. He also doesn't have any family near by. I can't imagine someone going through this ordeal with no family. I am going to ask if we can pay him a visit tomorrow to let him know he is not alone.

Nicole is able to sit in a chair for a few hours a day. PROGRESS! She was sitting in the chair when John and I arrived tonight eating mashed potatoes. I think she is going to turn into a mashed potato OR a glass of milk.

Nicole is now able to use the restroom. Tonight not only did she walk there to use it but she also walked to the PT room and back. That may not seem like much but that is huge. She is bent over because she is so tight and her legs don't bend too well so she looks like a robot walking down the hall but for us it is music to our eyes. At first she wanted to hold my hand but after getting going she let go and walked about 20 steps by herself. AMAZING!

I am so proud of the progress she is making.

I look around me and I see many people and the struggles they have. Yes, we have struggles but I know I have been blessed with the health and strength I need to weather through this. I know Heavenly Father has blessed me with the health and stamina to think clear to make decisions, strength to get up and face the day, love to fight for my children, happiness to laugh when I just can't do it anymore and joy to see the positive in all things.

Tuesday, October 6, 2009

Day 96

Do you ever wonder if you are doing enough? Enough teaching, enough loving, enough serving, enough worrying, enough caring, enough giving? I don't know if I am doing enough. How do we know? Is there a chart? A gage? Many times I look inside myself and I wonder, "What more can I do?" I hope that I am doing all that I can for my family, my friends, those I come in contact with. Myself.

Sweet Nicole made a huge milestone today. She was able to shower using a shower chair and not have to be on the shower table. WOW! That is huge. I bet she is starting to feel empowered. Sad was I when she told me that occurred and I was not there to witness it. I am missing out on milestones with her not being allowed in for long visitations. I feel like an absent parent missing a child's first words, first steps.

How, do we as a society, get cut off from our children by just a doctors say so? How is it that they have so much power over us? Why is it that what medical doctors say we do? Don't get me wrong, I do believe that there is a place for medical doctors but I also believe that we have something inside of us that knows what is best for us and or our children. We as mothers, if we listen to our gut, know.

I am grateful for the knowledge the doctors have and the skill to do what they have done for Nicole. I know with out that God given knowledge Nicole wouldn't be here. I am grateful for the amazing things God has given this world to make our lives better.

We took Easy-Mac to the hospital last night. Nicole was elated. She loves Mac and Cheese. Easy-Mac is easy to eat because it is slick. It went down without a hitch. She also had some tapioca. What a cute smile that was on her face after she had that treat.

John noticed that Nicole's oxygen level was down while she was eating, then when she thought of having tapioca it jumped 10 points. We started wondering how thoughts effected your oxygen. That would be a great thesis.

Nicole was making eyes at John last night trying to get him to laugh. It was so cute to see her being that way with her dad. They both were laughing. I love seeing that interaction.

Monday, October 5, 2009

Day 94

Our meeting with the doctors was a bust. They both were a no show. I just broke down. I couldn't believe it. What are they trying to do to us. When the doctors were paged they both said they were not aware of a meeting. Are you kidding me? What was all the discussion about last week? I feel numb and at a loss.

John and I took the opportunity to go to the medical library to research information regarding our situation. We found several items worth looking into more. Maybe that was really what we needed to be doing.

I was able to see Nicole for a few minutes while we were waiting for the doctors not to come. She looked good. She was just getting ready to eat her lunch. Crumbled hamburger with brown gravy, mashed potatoes, mashed carrots, applesauce, vanilla ice cream and lemon aide. Considering what she has been given I think looked pretty good. I hope she eats most of it.

Yesterday she was relisted in serious condition instead of critical. That is a plus. I don't know if she is out of the woods yet but I do know that she has made progress this week.

I am grateful to a loving Heavenly Father who listens to His children who in supplication come to Him with their problems. I am grateful at least at this time she is doing better. She knows who I am and tells me she loves me. I am grateful I have what precious time I do have with her to be able to express feelings to her and to be able to hear hers in return.

I don't know where or when this roller coaster will stop but I do know that the journey has been enlightening, scary, tiring, long, a blessing, and well....A JOURNEY!

Sunday, October 4, 2009

Day 93

Blustery day. I love them as long as I don't have to go out in them. Since John and I were going to attend General Conference today I had to break out the winter coat and go out. BUUUURRRRR! I do have to say that it was worth it because conference was awesome. We have never been to conference in the Conference Center before. All I can say is AWESOME!

Directly after John and I went to the hospital to spend time with Nicole. She had a fantastic day. PT went supremely well. A new activity she did today was peddle the bike. It is not the big peddling like on a regular bike, just small peddling. But still the same she was peddling. Today has also been a little easier for her to stand up. That is a huge thing.

John, Nicole and I went to the cafeteria tonight. Since Nicole is able to eat some things now she had mashed potatoes, grilled cheese and some juice. Man, it was so good to see her eat. Of course she is not gobbling down everything in sight but she is eating some of this and some of that. I am happy with anything she can eat on her own.

When we returned to Nicole's room there was a man there who was playing the guitar. It was very nice to hear him playing. He came over to Nicole's room and kneeled down by her and played her two songs. It was just what she needed. His voice was very soothing to her. The words beautiful. I had never heard either song before. I love music therapy.

It was so hard to leave her tonight. I am still very unhappy about the 2 hour limit. Tomorrow John and I are going to have a chat with a hospital administrator as well as her 2 doctors at noon. I hope we can make some progress on that.

Dr Cochran came up to John and I tonight to tell us the progress Nicole has been making. I think she was doing it to try to defuse what she knows is coming tomorrow.

Today I made Pumpkin Cookies. I know it is really fall when that is what I want to do. They are so good. When they are hot they are cake like. When they are cooled down they are soft and they just melt in your mouth. I can't wait to break out all my fall recipes. Things I just save for eating in the fall. Yummy soups and breads, cookies and treats. I love to heat my kitchen up and smell the aromas of all that is going on. Doesn't just make you want to bake something right now?

It is so nice to have John here with me right now. I just love it. Snuggling is the bestest part!

Saturday, October 3, 2009

Day 92

What an amazing harvest moon last night. It was one of the most beautiful ones I have ever seen. You are probably saying they all look the same but I beg to differ. This one had all the other ones beat.

Wyoming is so cold today with a North wind blowing. I didn't bring my coat or John's. I hope we don't break down.

We pulled into our driveway at 12:30 pm. What a great drive it was. It didn't seem long at all. 15 and a half hours. We hurried and unloaded our van and set up our clinic so we could see a patient that had been in a car accident. He showed up right as we were doing the last little things. Perfect timing.

After, John dressed for General Priesthood meeting and we left to go see Nicole. She was so happy to see John. What a bright face she had on. I have to wear a mask today because I started a cough and now have laryngitis. I talk about like Nicole today. Very squeaky.

Many good things happened for Nicole today.

1. De-canulated That is so awesome. No more trach.
2. No Foley. Mostly because she has another UTI.
She will be using a bed side commode.
3. PT was great. Another 4 hours.
4. Nicole's back is looking better and better.
5. Tapioca...Her fav. My mom made some and brought it to her.
6. Double portions of mashed potatoes and gravy.
7. All the milk she can drink.
8. And...of course...a visit from mom and dad.

When I saw her it felt like I hadn't seen her in days and it was only 48 hours. John was able to stay for about an hour before he left to meet his brother-in-law, Rich, and 4 of his nephews. one of which (John) was able to get my John a ticket to the Conference Center. John was so grateful to be able to spend that time with all of them. He doesn't get to do that often and he said he couldn't remember when the last time he attended Priesthood with family.

After my allotted 2 hours, I came home and made me some dinner. Caught up on the blog and I am now waiting to see our friends that are staying with us for the weekend to come home. Dale, Noah and Natalie are from Arizona via Wichita. Too bad Teri couldn't come with them. They had a very busy day shopping and attending conference this morning. I know they are tired because they didn't get in until the wee hours of the morning.

I have to tell you a cute conference story. The first time we took Christian and Nicole to the Tabernacle for conference my sister, Dawn, was in town. She is living in Washington. She brought a bear with her that is a traveling bear. It even comes with its own suitcase with clothes for most occasion. People take it places and the take pictures of the bear in those places. When the bear returns they show the pictures off. That bear had been all over the world.

When my sister found out we were going to Temple Square she wanted us to take the bear and take a few pictures. Well, he didn't have a suit to wear so my mom made him one. Complete with a tie. We took pictures all over the square. By the Christus, inside the tabernacle, in a flower bed, by the fountains and with some Sister Missionaries. It was pretty fun. When we returned home, 'Bear" had another new outfit. My sisters husband was going fly fishing the next day so my mom made him a fly fishing vest and they tied him a very small fly to put on it.

Friday, October 2, 2009

Day 91

Flying to Kansas this morning was COOOOLD. The heater in the plane wasn't working on the leg to Denver. I was so glad to get off that plane.

When I got to Wichita, to my surprise, my friends Charlene and Larry were there waiting to pick up someone. I was so glad to see them. I have missed my Wichita friends. (Charlene and I share the same birthday)

Practically from the time i got off the plane my phone didn't stop ringing. I had a list a mile long to accomplish in the few short hours I was here. 3 banks, dry cleaners, post office, drop off Toka at our friends house, (Thanks guys, you ROCK!) grocery store, laundry for John, our clinic and about 10 other places. I didn't get the software fixed. That will have to be another day.

To my great surprise our friends, Byron and Susan along with Dave and Yvette, invited us to a fish barbecue. The time we spent with them was so fun. We have known Byron and Susan for 9 years and count them among our best friends. Dave and Yvette are new friends to us. So fun getting to know them better.

I was able to speak with Nicole on the phone for about 5 minutes today and I received an update on her also. PT went very well. 4 hours today. 2 am, 2 pm. I think that is a lot of her but I have to trust they know best. She is really liking eating. Her favorite is MILK, of course and next mashed potatoes. She could probably live on both of those items if someone would let her.

At 10 o'clock pm John and I started our trek west. John started driving first but that only lasted until we arrived in Salina. I begged to drive. I just wanted him to sleep so I could sooner then later. While I was driving I listened to the movie FLY WHEEL. If you haven't watched it you need to BUY it. Don't even rent it because you will want to watch it again and again. I love the director. It is a low budget film, 20 thousand, but the values are so great. He is also responsible for Fireproof and Facing the Giants. They too are wonderful.

At some point int eh trip to UT before John slept we had a planning session on what we are going to do with the hospital. We have a meeting on Monday with an administrator as well as a noon meeting with the Dr's. I think John will be unloading both barrels and I will be there with extra ammunition. We have had to fight bureaucracy before and we have won so I don't think we are afraid of this fight.

It is 29 degrees. BUUUURRRRR

Thursday, October 1, 2009

Day 90

Today should have been our discharge date. I can't believe it has already been 90 days. Does it really seem like that. They days all mesh together for me.

I loved, loved, loved today. While I was in the unit the speech team came in. I was so surprised because I had been told earlier that they would come back until Friday or Monday. They came to put a camera in Nicole's throat to see how she was swallowing. I am so glad I was there. I was able to see how it all works.

They brought in different foods. Milk (her favorite), Applesauce (her other favorite), Thickened Milk (YUCK) Ice Chips and Graham Crackers. All were dyed green so it could be seem on the camera. First she tried ice chips. that went well. Next was thicken milk. Good too. Then came the applesauce. Nicole swallowed and it went right where it was supposed to go. Milk was last. It wash all that was left down. SHE PASSED. Hooray! She is now able to eat soft foods like mac and cheese, mashed potatoes, pudding, jello, ice cream. And of course applesauce. She was so happy and I was elated. One step closer to going home.

I feel like the 2 hours I get to spend with Nicole just flies by. I don't know how many more days I can do this. I hope that our Monday meeting accomplishes something.

Nicole's PT was also great today. She took 2 steps without the help of a walker or someone holding her. Landmarks today. I just love her.

Tonight John and Alicia (nephew and niece) invited me to there home to have dinner and spend some time with them and their two darling boys. I was so happy to be there with them. They are awesome. I love to feel of their spirit and the spirit in their home. Dinner was delish and the company was awesome. Thanks for having me over.

Well, I have to get up early tomorrow to fly to KS. I am so happy to see John tomorrow. I thought I would have some time to get some stuff done but it doesn't look like it now. Our billing software stopped working a few days ago and when the company downloaded a newer version it wiped out our billing. And our back up was corrupt. I will have to dive into that when I get there.
I hope we can get our billing back. Sad for us.

My thoughts in the night

I lay awake too many night and ponder what is. You know, late night thinking is the best. It is quiet. Your thoughts are brought to the fore front more readily because the kids are in bed, the TV is off and what more do you have to do then think.

Last night I was thinking about all the people in the world. How many have things they are struggling with whether it be children, work, income, health, family. I have certainly struggled with all of those things in the past, here in the present and I am sure I will struggle with things in the future. When I awoke this morning I turn on my computer and there was a message from my dear friend Teri. She is one I can not talk to for forever and we pick up like we just talked yesterday. She sent me this quote.

I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. Mother Teresa

I have felt that inside many times. It gives me strength. So many times I think I cannot handle one more thing and then I remember that God is a loving God and He knows what I can handle. It stretches me to learn, to grow, to love.

Life isn't easy. Sure we have times when things seems to be going along smooth. We have periods of time when money isn't a problem. Our children and our families are healthy, but, what about when you have a chronically ill child or parent. How do we, as an individual, a parent, a family and a society deal with this.

Being a parent of a chronically ill child, not just what we are dealing with now, but, what we have dealt with for 20 years, I ponder, why me? Well, why not me? Sure it isn't easy everyday but the rewards are indescribable. The capacity to love and to be loved by this child is remarkable. Yes, there are times when I don't like her much because of choices she is making but I love her all the time.

Do we know why we are giving the things we are? I'm sure there was a time when we knew why this was going to happen. And, I am sure we will see the whole picture one day. There are many days when I wish I could just get a glimpse of the whole picture.

I know there are many around us who don't understand. I wish I could explain what it is like. What Nicole is dealing with, what we are dealing with but would it really matter that much in the long run.

I read an article in the paper a few months ago. The article was written by a man who had been reading to obituaries. Obit after obit. Each one telling a story. Many told of valiant fights with this or that, mostly cancer. Then he came across one that said: The idea of besmirching his memory by saying he committed suicide is not a very positive image of his personality and accomplishments. What's wrong with this picture. How is it that someone dying after struggling with a dreaded disease like cancer is seen as being valiant while others dying of an equally dreaded disease like mental illness is seen as having a "besmirched memory".

Now, I know that those words, mental illness, really scare people. It is something not really understood and often misunderstood. Did you know that 1 in 4 people have some form of mental illness. From ADD to Depression to Schizophrenia. And anywhere in between. The problem with mental illness is not the illness it is that most people look and act normal most of the time. And when something goes awry, those around them don't know what to do because they thought they were 'normal'.

What is normal? Ask your self that question. Normal is as normal does. We, as a society want things to be 'normal'. Then we don't have to look at how we are dealing with things inside of our families and also outside.

What do you do when your neighbor or friend is diagnosed with cancer? We rally around them. We take in a meal. We watch their children. We pray for them.

Now think of what you do when you are at your child's school and one of the children acts out because he has ADD. Do we think, that child needs to be disciplined. Or what about when you see someone at church or in your neighborhood that all of the sudden is doing things out of the ordinary. Do you turn your back? Do you pretend you don't see them? Or, do you go to them or their parent or spouse and ask what you can do or take them a meal. Mental illness is just as real as cancer. It is just as debilitating. It is just as life threatening. It is more lonely, more costly, more life altering.

This is what we struggle with each day. It is a fact of life. It is not going away with a magic wand or pill. It is what is. We don't know why these things happen. It is not caused by anything the person has done. Nor can it just be prayed away.

I just had to write about this today. I want to stop, for us and for others in the world, the gossip and ill feelings that have penetrated my soul. That has ruined lives over the years and has made others withdraw from us and those who are dealing with something like this. My prayer today is to gain more understanding and to be more understanding to those around me and my family and anyone else who is struggling with these same challenges.

You never know when your family will be dealt this same hand of cards. Or, maybe you have been and you are trying to deal with this in silence. I know your struggle. Know that God is with you even when you think you are doing it alone.