Tonight I took Jacob to buy new shoes. He needed them. Desperately. His big toe was rubbing the ground. I'm thankful for a young man whose only concern was whether or not I could afford to buy him a new pair of shoes.

As we were driving home the HOT donuts light was on at Krispy Kreme. Of course, I did what any good mother of a growing teenage boy would do. I stopped immediately to go in to get our free hot donut. (Did you know that my favorite Krispy Kreme is actually the original glazed donut?)

While we were there the lady asked if we would like to donate $1 to the Komen foundation for Breast Cancer. I said I would donate a $1. Then Jacob asked if I would take a dollar out of his account to donate also. They gave us a sheet to write a message or our name. On Jacob's sheet, he simply wrote, "No more cancer."

I love that boy.

David's Stand Up Debut

For those of you who couldn't join us at the LOL Comedy Club tonight, here's David...

Updates...

I have several updates that I wrote while I was on the road that I haven't posted yet. I didn't realize that I hadn't sent them to the blog. I'll get that done this week. But, in case you haven't heard the great news...

the doctors at MD Anderson found no new spots of Cancer. The tiny spots on my neck are still there, but they haven't changed in size ... still just 3 spots that are about 2 millimeters each. Nothing of concern at all. So we are calling it a remission still. Yeah! The numerous biopsies they took of my GI system had raised some suspicions; however, it just appears that the Cancer was originally in my stomach.

What's good about that is that it appears the primary source of the Cancer would have been the stomach, which means I'm less likely to relapse soon. Therefore, I don't need to go back for check ups every 3 months as originally planned. The doctor said he'll see me in 6 months. YEAH! As long as I don't have any new lumps and as long as I don't become symptomatic again, then I just get to kick back and be "Cancer Free" for 6 months.

Also, on the good news front ...

We received test results back from Ryan's Metabolic Geneticist. Remember they were rechecking some of his tests ... zinc, thyroid, protein levels. Well, they all came back in normal ranges. This is good news; however, if I'm being honest, I have some mixed feelings about this news.

The mixed feelings just come from a place of wishing there were an easy fix for everything. I guess it would have been nice to have learned that he had a zinc deficiency and simply giving him x amount of zinc would resolve everything.

I definitely accept Ryan as he is and will always love him and cherish the blessings that come with his challenges. But, there is a part of me that longs for an "easy" fix.

I suspect any Mom would.

GI Testing Done

I returned home today from MD Anderson. The trip went well. The hotel was absolutely beautiful. (Thanks for sharing your loyalty points, sweetheart!) And, the people were very kind as always.

The IV was a little cantankerous ... but just a little this time. The nurse thought she hit the vein on the first stick, but then after she started the IV drip the area was burning and stinging really badly. At first I just tried to deal with it, but I realized it needed to be pulled when I started to develop a large hard lump on my arm. The 2nd attempt was very smooth. Thankfully. No stinging. No burning. No weird lumps. Whew.

The Endoscopy center was running a few hours behind schedule. Several of my fellow patients were very grumpy. I can't blame them. It's not fun to be starving and dreading a test. I think that's why Dr. Miller seemed so surprised that I was still cheerful when he came into talk with me. But, Dr Miller, the nurses & I had fun prepping for the test.

Once they started the meds, I really don't remember much else, except someone saying something about a pressure bag and someone asking the nurse to give me more meds. The next thing I remember is when I met my escort nurse, Dayo. Since I had been sedated the hospital requires that an adult escort me home. Dayo escorted me back to the hotel. She was very kind and took good care of me.

The report paperwork shows 19 biopsies of the GI area. I didn't sleep very well last night. Weird dreams and just very restless. I left the hospital at 4.30 this morning. I thought I might just rest better at home. I'm surprised by how sore I am tonight. I feel like I have a lead weight in my gut, and my throat is incredibly sore. It feels a bit swollen ... not like a sore throat though. Just weird. I'm pretty sure this will all go away with a good night of sleep, and that is exactly what I'm planning to do now.

Thank you for all your love and support. I appreciate the notes, emails & calls. (And, no, my dear friend, I don't mind you asking me. I'd repeat it anytime for you.) And, as always, an extra special thanks for all your prayers!

PS I almost forgot to say ... results should be back by next Wednesday.

It's that time again...

It's that time again for my 3-month follow up visit to check and see what the status of my cancer is. I've had the appointments scheduled for a while now, but I guess I've been in a bit of denial. I hadn't made all of the other arrangements until just recently.

I had planned on driving down with a friend on the morning of the tests and returning the same evening, but due to details those plans had to change. So yesterday morning I was busy finalizing some of the details of the plans. The reality of "every 3 months for TWO years" hit hard. I'll admit that I was a bit teary eyed by the end and was even feeling a wee bit sorry for myself.

If you've been reading my blog for long, you probably already know that I'm really not good at endurance events. I'm much better at the sprinting stuff, and yet I know that one of the lessons I'm to learn in "all this" is to endure well.

And, just like with all things ... for every trial there's a blessing, right? So ... where's the blessing?

Yesterday afternoon one of my very favorite people came over to visit. We were talking about my upcoming 3 month checkup and she shared with me some personal things and some personal views. And, I think I'll adopt them! Maybe you'll want to also.

Every 3 months for me ... maybe for you, it will be every year during your annual exam ... I will go for my cancer checkups expecting a clean bill health and feeling and expressing gratitude for the answers. I won't stress about it, or feel sad or overwhelmed about it. I'm just going to think of it as an opportunity to be thankful.

Aren't we blessed to live in this day?

It really is interesting how just that simple conversation with my friend was enough to turn my thoughts from feeling completely overwhelmed and burdened by every 3 months for TWO years to really thankful that the doctors are taking such good care of me. It was just the reminder that I needed. I am thankful that my friend took time out of her very busy day yesterday to stop by to visit, and I'm especially thankful that she lives the kind of life that makes her such a great example to me. I hope you all have a friend like her!

PS In case you're wondering I have tests next week and the following week. I should have all the tests results back by March 16th. I'll keep you all posted. I fully anticipate everything will be the same, but will you keep me in your prayers? I can always use the insurance. :)

Please don't let me forget this moment.

I don't even know if I can describe today. I almost hesitate to write about it for fear that it will lose something in the translation, but I don't ever want to forget today. So I'll do my best to share with you one of the coolest moments perhaps in my life. Definitely one of the coolest moments in my life with Ryan.

Today we had therapy with Dee Dee. You might remember that she is Ryan's Occupational Therapy. If you remember that, you might also know that we love Dee Dee. Of course, you probably also remember Nelda, Ryan's nurse, and I'm sure you know that I think Nelda has been a huge blessing.

Today Ryan was working on kneeling next to his little desk/table and pushing on a big vibrating button. He was sure in a good mood! Lots of smiles.

Then Dee Dee suggested some tummy time work. That's not always his favorite thing. It's hard work. But he cooperated with very little fussing. He quickly made it obvious that he wanted to work on crawling. So Dee Dee put him on his hands and knees. She helped him with his knees and I helped him with his hands.

This is where it gets really cool...

He crawled (4 or 5 moves) to me. When he made his way to me, I picked him up to give him big hugs. His legs were really stiff. He had worked his little muscles SO hard. I hugged him tight and put one hand under his shirt to rub his back. He leaned his head against my shoulder and with his hands grasped at my shirt as if to hug me back. We hugged for a moment like that with me support his weight, one hand under his bum and one hand on his back.

THEN he pushed his little head up and his body away from mine and looked right at my face. Right at my face. And he talked to me. Not with words like ours, but with Ryan words. He held his body and his head so strong like any toddler would.

I wish I had a word to describe what I saw and felt.

I think it must have lasted for a full minute. He had a lot to tell me. Perhaps he wanted me to know that he is going to crawl. He is determined. Perhaps he was reminding me to keep the faith. He sure is a strong boy. Whatever he was saying, he was saying with full purpose.

It was one of those moments that I hope is written on my heart, never to be forgotten.

Well, so much for my Valentine's Day roses. She was trying to take off the dry leaves, and it apparently got a little out of hand. But Daddy really got his money's worth! I think she may have enjoyed the roses even more than me. She played with the rose petals for hours today.

Miracles

Today's Sunday School lesson was on Miracles. We are really blessed to have a great Sunday School teacher. I always look forward with great anticipation to his lessons, especially when I have read the lesson. Today was one of those days.

The topic is one that is especially dear to me. I have been blessed with miracles in my life and I have witnessed miracles in the lives of others. The lesson for this week covered Mark 1-2, 4:35-41; 5; Luke 7:11-17.

These verses are some of the best in all of the New Testament. So many miracles. My favorite was actually when he cast the Legions of unclean spirits form the untameable man in Mark 5. I love that story. I wonder how free that man must have felt when he came to his "right mind." And, in my mind, it just seems like such a loving thing for Jesus to do.

Which miracle is your favorite?

Have you seen miracles in your life?

Maybe I should define Miracle.

Miracle. An extraordinary event caused by divine or spiritual power.

This morning I had to drop off one of my son's at church early and so I had a few minutes alone ... a rare event on a Sunday morning for a Mom of 6 kids. As I was driving, I was thinking about the feelings I felt as I thought of the day I found out that the cancer was in remission. I know that modern medicine put me in remission, but to me I think modern medicine is a miracle.

There were so many little miracles around the cancer. In my alone moments this morning I thought about the way I felt the moments and days after the call that told me I was in remission. I also thought about the moments when I felt as though I was being carried by angels.

I hadn't thought about those times for a little while and I felt overwhelmed with gratitude again. Gratitude for the divine intervention in my life. Gratitude for the friends and family who helped along with way.

I also felt a lot of gratitude for parents and grandparents who taught me good things. Gratitude for the lasting impression of a father reading his scriptures early in the morning. Gratitude for the memory of my mother at a dining room table reading her scriptures. Gratitude for a sister who memorized scripture masteries. Gratitude for a husband who has knowledge than me.

And, today I feel an extra special gratitude for my friend and Sunday School teacher, who because he is always prepared to teach, motivates me to be prepared to come ready to learn. I always leave his class feeling strengthened in both knowledge and testimony. I love Bro Burton and his sweet wife, Helen, and am thankful for the opportunity I had to ponder this week about miracles.

Ryan

Ryan did a great job!

Doesn't he look so strong!

Ryan's TV Debut

Today's therapy session was recorded by a camera man for WOAI for SA Living. He'll be making his first TV debut tomorrow sometime between 10-11 am. It'll just be a brief appearance during a segment that will be covering the proposed cuts to Early Childhood Intervention (ECI) funding.

Hopefully, I'll be able to get a copy that I can post here for all of you that live outside our area. :)

Heart Wrenching

Today has been an interesting day here at Disney World. We had planned to start our day early at Epcot and then at 12.15 we were to check in for the AquaSeas Tour. We had scheduled it this way because they had been predicted storms during the day.

Well at 12.15, we went to check in and found out that "due to technical difficulties" the tour had been canceled. They aren't sure if they will be doing it all this week, but will call if they are able to do it later. We were disappointed, but Jessica and David are really good at making the best of everything.

So we just continued hanging out at Epcot for the day. Sometime around 6 this evening, it started to rain, but by 7 pm it was pouring and I do mean pouring! My goofy children *loved* it! I stood in a red telly booth in the United Kingdom watching them play a Kim Possible Adventure.

I called home to say Hi. Dwight was holding Ryan on his lap and so Ryan could hear my voice on the phone. He started calling me, "Maaaa." Over and over again. Dwight put me on speaker phone and Ryan and I talked for a few minutes. I then realized that I probably needed to get the other 2 kids out of the lightning storm that had started. So, I told Ryan that I loved him and I would talk with him later. As Dwight was saying good bye to me, Ryan let out the most heart-wrenching, sad, sad cry that I have ever heard from him. It was horrible.

I sobbed for 20 minutes wondering if I had made a huge mistake. Had I been selfish in bringing the kids? Should I have sent Dwight with the kids? He's used to Dwight being gone? What if he thinks I'm not coming home?

I finally pulled myself back together and realized that it's totally normal for him to be sad that I'm gone. I'm thankful that he's aware of things and that he's able to communicate his feelings so well.

Lost.

We drove around today for about 2 hours looking for the local Mormon church. The address that we had online didn't seem to take us anywhere. When we followed the GPS to the address, it took us to a parking lot that was a Liquor store. Hmm... definitely not LDS. haha...

We finally found another Mormon church building using my GPS, but the last service had started at 11 am and it was after 2 pm. Well, at least we tried. It was a beautiful day to drive around and to see things. It was fun to just visit with the kids too. We took some fun pictures today. I'll post them when we get home. We didn't bring a connector thing with us.

Tomorrow's our first day at Disney World. David and I have it planned out. It would make you spontaneous people really uncomfortable. We haven't really included Jessica in all of the planning. She's more of the spontaneous type. We'll just let her think it's happening spontaneously and she'll be happy. :) But David and I will be much more content with a plan. We've read books. Big books. Several books. Studied touring plans. Talked to people. We have ideas. It'll be interesting to see how the ideas match reality.

So tomorrow is Animal Kingdom. David wants to get an early start. So I'm going to bed early tonight so that I can get some rest. We walked A LOT last night. We covered all of Downtown Disney. We were all exhausted by the time we got back to the hotel, but we had a great time!

The Plane Ride

Oh, I almost forgot to tell you about Lilly Belle, her sister, and her Mama.

I get that it can be rough to travel with little kids. I've done it a few times myself. So I thought I might offer a few suggestions.

1) Don't feed your child and yourself chocolate covered chocolate donuts and then expect your child to sit quietly for 3 hours. That's not fair.

2) If you say you're going to turn off the movie if they screech at super high pitched levels, then do it! Don't just keep lying to your child. Or, buy the rest of the plane ear plugs.

3) Wipe your child's nose on a tissue. My sweater, no matter how soft and furry it may look, is really NOT a tissue for your child's runny nose. The first time was cute. The 2nd & 3rd time ... well, it became gross. Please, take the offered tissues.

Obviously, my suggestions might not work for everyone. They are just my suggestions.... :) I'm sure glad it's just one flight... and it's a good thing that Lilly Belle had beautiful eyes ... and my sweater is washable.

We Made It!

Well, we are finally in Orlando. Dwight dropped us off at the airport this morning nice and early, but not too early. Did I mention that Jessica is with us? It was a tough decision, but after the last 2 years and all of her help I decided she needed a break. I hope it was the right decision.

Anyway ...

We are staying at a beautiful Marriott resort near the parks in a sweet 2-bedroom suite. Since David is the star of this vacation, I gave him the choice of the rooms. He choose the master bedroom with its beautiful master bath and king size bed, huge flat screen tv and desk. He's loving it! I offered to share the 2nd bedroom with Jessica but she's opted to take the family room, which has a nice pull out bed. Since it has other chairs, I suspect it will just stay a bed all week. I think everyone loves that we all have our own rooms, tv, and privacy.

We have a full kitchen: full-size refrigerator, microwave, and oven. I know Dwight would cook if he were here. But we stocked the refrigerator and cabinets with ramen, Lean Cuisines, sandwich meats, soda, water, and some other good munchies. Who wants to cook while on vacation? I don't even like cooking when I'm not on vacation. haha...

Anyway ... thanks Dwight for sharing all your loyalty points with us and hooking us up with such a beautiful place! Yes, it's definitely your turn next. ;)

We are off to Downtown Disney. Ya'll have a good weekend!

Disney World ... We're Coming...

Several years ago, it seemed like our kids were always getting a bunch of money for the holidays and for their birthdays, but they NEVER saved a dime. As a way to motivate them to save some money, we wrote out a family budget for a week long fantastic trip to Walt Disney World. Each kid had an amount to save.

We even came up with a "Help Wanted" board where I would post jobs that I was willing to pay to have done. We don't pay our kids for the standard chores ... cleaning their rooms, the kitchen and their bathrooms is part of being a member of our family. But, doing Mom's neurotic cleaning list ... like the baseboards, wiping the window sills, cleaning behind the toilet seats, vacuuming the edges of the room ... well, those things are paid jobs. When they finished a job, they could get their time stamp (a Mickey Mouse of course) which was worth a set amount of money. At the end of the week, each kid turned in their time card & I settled up with each of them. They paid their tithing, put money in the savings and kept what they wanted for spending.

As you can imagine with 6 kids we have some that are savers and some that are spenders. Our oldest is definitely a saver. Once she got the idea of Walt Disney World, she really became focused and soon she had her money saved. The others weren't even close! Dwight and I decided that she shouldn't have to wait for the others. So in 2008 Dwight and Jessica made the first trip to Disney World. It was reported to be fabulous!

Jessica motivated her brother David to start saving his money and he finally did it! So, tomorrow morning David and I will be making our first trip to Walt Disney World. We're super excited. David calls it "geek-ing out." Hmmm.... I wonder if you ever become too old to geek out? :)

Yay, Ryan!

Tonight I walked downstairs to see Ryan holding his own bottle. Nelda has been working with him a lot on opening his hands and apparently it is working! She propped his elbows up to support them and he held his own bottle the entire time. It was so sweet! I'm so proud of him and so appreciative of all that Nelda does to help us. She really goes above and beyond the duties of a nurse. I feel so blessed to have her in our home!

Seriously. Today I was clipping my 12 year old son's toe nails. Yes, I agree. It is something he should be able to do for himself. The problem is that he doesn't do it. Then he reminds me of the bag lady with the long, straggly fingernails that followed me through Central Park when I was 18. Creepy. Anyway ... While I was doing that, I noticed that he has HUGE toes. Just thought I'd share. Weird, huh?

No!

Saturday night Dwight was scheduled to arrive home late. 10.30. Ryan and I had talked about Daddy get home. All day we had talked about it. Ryan was really missing Daddy. Around 9 pm I tucked Ryan into bed, swaddled in his fleece blanket and gave him a kiss. I said, "Daddy will give you kisses when he gets home. You go to sleep till then." That's when he did it. Ryan shook his head No. Over and over and over. Very clearly telling me, "No." No vocal sounds, but most definitely telling me No.

So, I kissed him (with a huge smile of course), pleased to see him communicating and so obviously understanding. I turned on his music and started to shut his door as I left the room, like I do every other night. He squawked at me to let me know that he did not want his door left. I went back over and repeated basically the same conversation, and the same actions, until I finally realized: He wanted his door left open.

An hour and half later when Daddy arrived home, Ryan was lying awake waiting for him. As soon as the door opened, Ryan called out to Daddy with his own vocal sounds that mean Daddy. Of course, Daddy rushed right to his side to give him the promised kisses.

I'm so thankful that Daddy is so responsive to Ryan and understands Ryan's language so well. It was so sweet to listen through the monitor to the two of them communicating in a way that only a boy and his Daddy can talk.

I thought you might enjoy seeing a picture of this morning's scene at our house. Ryan's nurse, Nelda, had Ryan in his stander. She was opening and closing his hands while he watches Baby Einstein, which is good vision therapy for him. Deborah had covered him up with her blanket and then climbed up in his wheelchair to watch the show with him.

The other day she got in his wheelchair and wanted me to put a blindfold on her, let her touch his toys, and take her for a walk in his wheelchair. She "wanted to see what it's like to be blind and to be Ryan." So Deborah's been participating in a lot of stuff with Ryan. She's such a great big sister!