Sunday, December 30, 2012

Let It Go

Tonight I'm finishing lesson preparations for tomorrow's Relief Society class.  I'm leading the discussion on "Of You It is Required to Forgive."  I started preparing this lesson during mid November and so I've had lots of time to ponder the subject.

For Christmas I received a book that I've been wanting to read called, "Let It Go" by Chris Williams.  You can watch an interview about his story.  Just click here

There are many profound truths about forgiveness in this book.  But one really stuck out to me tonight.  I won't tell you the full story behind the statement as I hope you'll read the full book.  I just want to share this thought with you. 

He says of an experience that had happened much earlier in his life, "I could see what I had allowed the Lord to make of my life because of what I experienced.  I could stop wondering, Why was this allowed to happen to me at such a young age?, and instead I could start detailing what Christ was able to make of my life and who He was able to bless through me because that [it] was allowed to happen."

Have you had an experience like that in your life?  Something that you wondered why it was allowed to happen to you?  What if, instead of questioning why it happened, you were to detail what Christ was able to make of your life and who He was able to bless through you because of what happened

Friday, December 7, 2012

The New Look for Ryan

On December 4, the morning started as usual.  It was great. Ryan was in a good mood.  Then we went to therapy.  I didn't go back with him, but the nurse did.  He has a great therapy team that I trust.  When I came back to pick him up there was an obvious tone of concern in the nurse's voice and she said they needed me to come back.  As soon as I heard Ryan I knew something was wrong.  The PT said, I needed to get him to the Dr's and see what was going on with his hip.  She thought it had come out of the socket.  His right leg was having spasms.  He was in obvious pain.  His cry was one of definite pain.  So, I picked him up and we took him to the van.  As soon as we got him loaded, I started driving toward the dr's office, which is located near the hospital as well.  She said she'd meet us at the hospital.


At the hospital they did x-rays.  The ER doc first came in and said the right hip was fine. Then a minute later she came looking quite shocked and said, "But, the left femur has a complete fracture."  Then she took me to see this picture:


I added the square to cover his privates.  It just seemed a little weird to post them on my blog.  :)

Within an hour, they had Ryan in the operating room.  They used pressure "blocks" to cast his leg back into place.  They did not pin it.  He will spend the next 6 weeks in this Spica cast.  He'll need to be rotated every 2-3 hours, around the clock.  The cast goes all the way up to his chest, is open on the tummy for his mic-key button, and open in the diaper area ... for obvious reasons.  As you can see below, it goes to his toes on the left leg and to his knee on the right.  The bar between the legs is not a carrying handle as Dwight would have you believe.  It's a stability bar.


Well, here we go... I'll blog more when I wake up...

So...

Thursday, November 29, 2012

Go, Ryan!


Look what Ryan did today!


Do you see that smile?



This stuff is exhausting!

Tuesday, October 30, 2012

Ryan

Ryan's nurse caught Ryan working hard at school.  This is super awesome!  You might notice in this that his teacher, Mrs. V, is just barely supporting him at the lower back.  If you watch really closely, you can also see that he's engaging his arms to support himself and he's really using his right arm especially on the floor. 

I hope you enjoy this as much as I did!

video

Hmmm... Is there a way to turn a video?  I don't know.  Well, I guess you'll just have to lie down to watch it.  ;)


Saturday, October 20, 2012

Bloomin' Flowers


This morning I went to the Temple to help plant flowers.  I really know nothing about how to plant flowers and thought it would be a great opportunity to learn.  I worked under the supervision of the nicest lady, Sue.  She was very kind in teaching me how to do things.  We made a great pair. 


We planted  Liberty Rose Pink Snapdragons, Clear Crystal White Alyssums, Blue Pansies, and Peacock Red Flowering Kale.  We also planted some yellow flowers, but I don't remember what they were.  Sometime I'll have to take a picture of the flower beds that I worked on and post it here.  The Temples always have such beautiful flowers.  I'm glad I had the chance to work on them. 

Friday, October 12, 2012

Prayer

If you have read my blog before you probably already know that I believe in the power of prayer.  I know many of you also believe in the power of prayer.  Well, this past Monday I was (once again) taught a lesson on prayer. 

For the past few weeks, I have struggled to figure out how I would solve what seemed to me to be a very difficult problem.  I needed to figure out a ride for Jessica and David to an activity and 45 minutes later Deborah and Johnathon need to be some place else, and I still need to manage Ryan's needs as well.  From the very first time I prayed about it Carol's name came to mind.  Well, that didn't make any sense.  Carol doesn't have any children.

I kept praying about it and thinking through the problem.  Every time I prayed about it, Carol came to mind.  Every time I thought about it, Carol came to mind.  That was confusing.  Why would I be thinking of Carol?  She's a great lady, but all of her kids are grown ups. 

By the weekend before I had to resolve the issue, I had even considered crazy options like having all 5 get completely ready to go and taking them all with me when I drop off David and Jessica.  And, even crazier options.

Well, Monday finally rolled around and I had to have this resolved by Tuesday morning.  I was sure I wasn't getting any answers to my prayers.  Nothing.  But, I prayed yet again.  Sometimes we just have to pray more diligently, right?  And, again with the Carol answer.

So, I waited a few hours and summoned up all my courage and called Carol.  I explained how I really didn't understand why she was the answer but perhaps she'd have some good advice since she had raised several kids.  I briefly explained our situation and then she said, "Well, I can just take your kids."

She made it sound so easy!  Let me tell you:  I sobbed.  I sobbed because the whole time I was fretting and stressing about this problem, Heavenly Father had been lovingly giving me the answer over and over again.  But, I hadn't been listening.  I had been unable to identify His voice.  I had been so busy trying to solve my own problem that I had listened to Him and He had already solved my problem for me.

It's made me wonder how many times I do that in my life?  Are there other times when I busy myself solving my own problems when I could just turn them over to Him?

I'm so grateful to Him for being persistent and patient.  I'm so grateful for Carol's help!  What a huge blessing!  I hope you all have people like Carol in your life.

Monday, October 8, 2012

Great Friends

Johnathon was invited to go with his good friend today to the corn maze.  
They had a great time!  
We are so thankful for good friends!

Wednesday, October 3, 2012

Good News from Houston

There were several bright spots for this trip.  First, they ditched the barium enemas during the CT's.  That was a welcome relief!  I met some amazing people with miraculous stories.  And, I dodge all biopsies!  Most spots have not grown at all except for the spots on my thyroid.  Those have grown some but are still rather small and they appear to be benign.  Yay!  However, my lymphoma doc is referring me to another department for a consultation within the next 2 weeks.

And, there's more good news... After reviewing some new research and my records they decided not to do maintenance chemo.  Recent research shows that "it doesn't increase survivability rates," especially for patients with refractory lymphoma, like me.  And, it has some risks that the doctor felt made it so that the risks do not outweigh the benefits.


In case you don't know, "survivability rate" is a term that oncologists throw around way too easily.  My cancer is a very survivable cancer.  It sounds much scarier in this case than it really is.  And, refractory lymphoma, just means that my lymphoma has been treated once, and has come back.

So, thank you all for thinking of me, your prayers, your love and support.  I am very blessed to have so many great friends and such a wonderful family!  


Friday, September 28, 2012

A Journal Post

Life has been crazy busy recently and I feel like I've been neglecting to do updates.  So, I thought I'd do a journal style post.  You know the journal entry where you try to catch up on the last 10 months all in one page?  Or, am I the only one who kept a journal that way?  :)

Many of you know that I put all the kids into public school this year, and some of you have been asking how it's going.  Thanks to some great advice the school year started very smoothly.  If I had to pick just one tip as the most helpful, I'd probably say it was when one of our new friends recommended laying out an entire week's worth of outfits for the younger ones.  Since public school requires the little ones to be up more than 2 hours earlier than before, it helps when they can just drag their sleepy selves into their closets and choose from pre-selected outfits.  Deborah adores her teacher, is "getting used to" classmates, but has made quite a few friends, really dislikes music time, loves art, and is very invested in getting her daily smiley faces from the teacher.  Johnathon is enjoying the academic side of things and is making great grades. I worried a lot about his handwriting skills, but they have improved significantly since starting school. He has struggled a little with figuring out the playground system and seems to be getting a handle on it now.  David found his lunch table immediately and is really enjoying latin club.  He is also in the high school's first play of the season.  So, he's busy and very happy.  Jessica is a senior this year and just anxious to be done.  Ryan is back in Mrs. V's class again and loves it.  He has a new Physical Therapist at the school who seems to be trying some new equipment with him. The same Vision, Occupational, and Hearing Therapists as last year continue to work with him.  They are all really fantastic!  So, we're very lucky that way!

Overall, I'm very pleased with how things are going.  I think the schools have a nice balance on how much homework they are sending.  I think the extracurricular activities at the high school level are WAY too time consuming, but other than that, I'm content.

BUT.... if I could traditionally home school, it would still be my preference.  Why?  For all the same reasons that I did it before.  I'm thankful that we live in a good school district where I feel comfortable sending my kids to school and I'm especially thankful that they have good teachers and good people in their lives. I feel comfortable ... well, only because I know I have done what is best for them at this time.  It was tough, and is still tough to have them gone all day.  I enjoy having my children around.  I enjoy learning with them. I enjoy their company.  I like them. 

 I might miss them, if I had time to miss them.  I have been asked several times what I'm doing with "all my free time."  Well, folks, the reason I put my kids in school was because I was severely over-scheduled and even with them in school, I have only managed to squeak out a few hours of free time in the past month. During that time, the first time, I cleaned my house for 4 hours.  The second time I went to the pool by myself and floated on the water for an hour in total peace.  And, the third time, I went to a friend's house and visited with her a few hours.  All three times it was really wonderful! 

So, you might ask what's keeping me so busy?  Most of you can probably guess.  Ryan's appointments, my appointments, the stacks of neglected paperwork, and my school work.

Ryan is mostly stable right now, thankfully.  He has not been seizing lately. I've been asked why. We haven't changed his medicine since that awful spell in November of last year, except to add a mid-day dose of the Lamictal.  Maybe it's the right medicine combination.  Maybe he's growing out of the seizures.  Maybe it's the blenderized whole foods diet.  Maybe it's a combination of all three.  Or, maybe it's just a tender mercy of the Lord.  I would prefer to attribute it to the latter.  Maybe due to His tender mercy He provided all that we needed in the way of medicines, the Doctors, the Doctors' intelligences, the knowledge for the diet, etc in order to help right.  However, we look at it, I can see God's hand in this miracle.  I'm sure you can, too.

After the most recent hospital visit for Ryan, which was due to low oxygen levels, we received new equipment at home for Ryan.  A few days after it was delivered it occurred to me that having oxygen delivered to our house, an oxygen concentrator, and a pulse oximeter really didn't even seem strange to me and that it probably should at least seem a little odd, or something.  It just seemed normal.  That is until I had to use it on Ryan. 

The Oxygen Concentrator
 There's really nothing normal about having a pulse oximeter attached to your 4 year old at home, and there's definitely nothing normal about being startled out of bed several times during the night to a loud noise that means his oxygen level is too low.  And, it really isn't normal to attach a nasal cannula to your child in middle of the night so that they can get their oxygen level back into the 90's.  But, it sure beats the heck out of rushing to the hospital, being stuck their for a minimum of 24 hours, and having Ryan pocked several times for mandatory blood work "just to be safe."  I'm thankful it's an option to have it in our home, as odd as it might be to have to use it.

The plan when I put the kids in school was to use the time to get caught up on stuff, take care of Ryan's medical stuff, my medical stuff, and do my school work.  One of the challenges I'm running into is that I'm spending far too much time doing my kids' chores.  They are gone for the majority of the day and the older kids have so much homework that I have struggled to figure out how much responsibility is fair.  I think I've leaned too far in the direction of leniency and now no one is even helping with chores.  So, those of you with kids in school, how do you do it?  Especially high school kids?  Are you the only one who cleans your house?  I've had someone suggest hiring someone to come in once a week, but right now we just have too many medical bills and besides it doesn't teach our children the responsibility. I really love the idea of serving my family, but I don't think I should be their servant.  I think there is a difference. 

As for college, I am loving it and this week I have at times wondered if I should have waited a little while longer to go back.  I am only take two classes -- just six credit hours.  I love the people I attend class with on Thursday night.  I love the subjects we are studying.  I am anxious to continue.  On the other hand, this week it has felt overwhelming to fit it into the schedule.  It has been hard to focus and to do my very best.  It has caused me to wonder if I was being selfish in going back right now.  

BUT ...
Here's what I know ... I know Heavenly Father asked me to go back and finish my degree. I know He led me to this specific path, and thus I know He can prepare a path for me to do it.  So, I will work hard to cheerfully do all the good that is required of me so that I can see the miracles that He will work in my life.

Have you had times like that in your life?  Times when you have had to just act in faith knowing that if you pushed through He would work miracles.  I know it works because I have seen it in my life before.  So, I'm counting on it again.

Thursday, September 13, 2012

Melt My Heart

Ryan had a dentist appointment today.  While we were sitting in the waiting room, I was snuggling with him on my lap.  You can imagine it.  I was sitting in the typical waiting room chair with Ryan, who is now more than 3 feet tall, sitting to the side.  So, his right side was leaning against my chest.  His head was leaning on my shoulder. 

And, that's when it happened...

He took his left arm and reached up to my shoulder and HUGGED me!

Ryan HUGGED me!

It wasn't just a little slight move of his hand.  It was a full on HUG.

It melted this mom's heart.


Wednesday, August 29, 2012

Monday, August 27, 2012

Day 1: Whew... Success.

We made it through the first day of school! And, the best part ... everyone, me included, had a GREAT day! Whew! Jessica wasn't thrilled to take pictures this morning, but she at least let me snap one quick picture before school.


David worked hard to give me a "mildly interested" look, until he had to sneeze. The sneeze made for a really funny picture, but I decided to stick with the approved pose.


Johnathon was so excited for today! His first words to me when he got off the bus today were "Best Day Ever!"


Deborah ... Well, Deborah was given the assignment to decorate this face. The teacher called it a happy face. Deborah calls it a baby face. Even after I explained that it might be a representation of her, she would just giggle and call it "Baby Face."


Tonight when I was tucking her into bed, she said, "Mom, I'm a Kindergartener, and I have the BEST teacher."


Ryan seemed anxious to return to school today. Thankfully, Ms. Nelda is still able to go with him.


Overall, it's been a great day, with only one small hiccup. Hopefully, tomorrow will be even more smoooooth. :)

Thursday, August 23, 2012

Morning Announcements

Deborah walked into my room this morning at 7 and announced, "It's time to get ready for Meet the Teacher" (which doesn't start till 5 pm). I think she's just a little bit excited!

Sunday, August 19, 2012

One More Week

It's hard to believe we're down to just one more week.  Are you surprised that I made the decision?  I am.  Then I remember that every time I prayed about it I felt confident in the decision and I feel peaceful again.

We now know Johnathon's and Deborah's teachers.  I've heard great things about each of them.  I'm told Deborah has THE very best Kinder teacher:  THE teacher that everyone wants for their child.  And, Johnathon's teacher was selected just for him taking his personality and my personality into consideration.  So, hopefully, they will be great matches. 

Just one more week. 

Tuesday, July 31, 2012

Wonder

I am currently reading a book to the children called, "Wonder" to the children. 



This book was recommended to me by a room full of Moms that I consider to be the best of the best when it comes to good literature.   It had been recommended to them by Ms O, who we all consider to be the Queen of Great Literature, our Go To Person when we need a good book for our children.

I couldn't wait to finish our last book to start this book!  I looked forward to my children seeing into the life of another family with a special child.  I wasn't however prepared for the roller coaster of emotions this book would take me on in one evening.

I knew my children would be affected by the book but I was completely unprepared for the effects this book would have on me.  Last night as I reading aloud to the children the Via section, I could barely keep reading as I fought back the tears knowing that my children have at times experienced the same things that the main character's sister expressed.  I kept closing the book at the end of the chapter only to have the children say, "One more chapter, please!"

It is that Wonder-ful!

Sunday, July 29, 2012

Happy 4th Birthday, Ryan!

This weekend we celebrated Ryan's 4th birthday!  Can you believe he's already 4 years old?



We enjoyed a great lunch and a fun party! 





 And, yes, Ryan even had a tiny taste of chocolate cake.  :)

The party was fun for everyone!


 About half way through the party, Ryan started to seem a bit apathetic toward the gifts.  We then noticed that he was a little bit tired.  So, we put the party on hold until he was better rested.   Then today we finished opening the rest of his presents.  I'm not sure who's enjoying his new CD player the most -- him or Deborah.  :)

It's been a great 4 years!

 A lady who doesn't know me very well once made a comment that was at once accusatory and apologetic to me that I had Ryan.  I was so surprised by her comment that I didn't even know how to respond to her.  I have since thought many times about her comment.  I have thought of the many things I wish I could share with her.  Things that she obviously doesn't know, about Ryan, about my family, about life.  I've tried a few times to share the joy that she obviously doesn't understand that comes with having Ryan as a member of my family.  But, it never seems to come out quite right.  So, tonight, I'll just say... knowing all that I know today, I'd do it all again! 

Happy birthday, Ryan!  I love you!

Saturday, July 28, 2012

Oh, Deborah!

Deborah and Johnathon have been taking swimming lessons this summer and they are doing a great job!  Johnathon has mastered swimming without holding his nose (which used to be a huge obstacle) and is now working on various swimming strokes.  Deborah is overcoming (again) her fear of going under water and has become really good at blowing bubbles and kicking. 

This week we were at the pool and I realized that I had forgotten to put Deborah's hair into a pony tail before leaving the house.  After searching through the pool bag, all I could come up with was one of my head bands, but no pony tail holders. 

I started to put it on her and she grabbed my hand and said:

"Mom, I'm NOT that KIND of a girl."

Now, I might have understood that response had the head band looked like this:  



Or, even this:



But, it was just a SIMPLE, basic get-my-hair-out-of-my-face kind of head band, like this one:


So, I said to her, "Deborah, it's one of Mommy's head bands."

And, she promptly replied, with a look that I really wish I had a picture of:

"I know.  YOU'RE one of THOSE girls."




Oh, Deborah!

Friday, July 27, 2012

Back To School

You probably know that I've home schooled for the past 13 years.  Last year we did Texas Connections Academy for Johnathon and David, which technically is not home schooling, but I still had 3 children home with me all the time (except on Tuesdays when they spend most of the day with other homeschooling friends). 

Well, are you ready for this?  This year everyone is going to school!  Are you super surprised??? 

Ryan is going back to the same PPCD class, which we loved.

Deborah is going to Kindergarten at the same school, which she is SO excited about.

Johnathon is going to attend 4th grade also at the same school. He's happy about it now that he learned one of his friends is also in 4th grade at the same school.

David is going to be a Freshman at the High School.

Of course, Jacob and Jessica will continue going to High School.  Jacob is a Sophomore and Jessica will be a Senior.

AND, I'll be going back to college, too.  With everyone else back in school, I've decided it's time for me to finish my degree as well. 

So... it'll be a HUGE change around our house.  I've NEVER had all the kids in school before.  I'm not even sure how to manage it.  I'm sure I'll be asking some of you pro-Mom's how you handle different things that come up during the school year.  It'll be interesting.

It was a hard decision to make, but I feel it's the best for each of the children right now.  So, let's just hope I can handle it.  ;)

Thursday, July 26, 2012

My To Do List

In the past 18 days, I have visited the ER three different times and had a weekend hospital stay. Once with Ryan because his right ear kept bleeding.  Last Friday, I took Ryan because he was turning grey due to low oxygen levels that did not seem to be seizure related.  And, yesterday, I took Jessica because she had basically been asleep since Sunday evening and wouldn't really wake up except to tell me that her head hurt or that she wanted to gouge her eyes out.

It was different this time with Jessica because I was on the adult side of the ER, but as usual I was very impressed with the entire staff, especially Doctor Ramirez and Hank, her nurse.  She had a lot of tests done and thankfully they just found it to be a severe case of sinusitis and strep.

But you might have noticed the title of this post is "My To Do List."  So, what does all that have to do with my to do list?  Well, as you might imagine 3 ER visits in 18 days took up a lot of time which meant things at home did not get done, which meant my list of things to do didn't get done.  On a daily basis it seems I add more to my to do list than I ever get done from my to do list.  It's a constant battle. 

But, I stand in awe at how God works.  During the ER visits and Ryan's hospital stay, inspired friends received promptings that took care of things on my to do list.  I wouldn't have even thought to call and ask for help with those items.  I tend to be a very independent person.  It's not that I'm too stubborn or afraid to ask for help.  It's just that I know I'll eventually get to it. 

Visiting teachers who texted at just the right moment which reminded me that I should let them know that we were in the ER.  A friend who offered to bring me Quinoa salad:  one of my very favorite foods.  Another mom who knows the joys and pains of special needs who just called because she was thinking about me.  Dinners provided for the family.  Rides for the other children.  A friend thinking of next year's seminary ride arrangements.  A blessing for Jessica.  A nurse willing to stay a little longer.

Three trips to the ER and a weekend hospital stay might be overwhelming, but because of friends who respond when inspired by God, my family's burdens are made lighter.  I am not surprised, but once again I stand in awe and gratitude for the blessings. 

Thank you, my friends!

Tuesday, July 24, 2012

Miracles

I want to share with you a link that a friend of mine posted on Facebook.  It's about miracles.

I think it's so important to recognize miracles, especially in our own lives, but also in the world around us.  We hear so much discouraging news and the recent tragedy in Aurora, Colorado once again exemplifies how captivated the world can be with the horror of an incident.  Yet even in these moments of tragedy God continues to work His miracles.

These miracles are not the focus of the news nor do they seem to make every headline.  However, miracles give hope not only to the direct recipients but to all who will allow themselves to be touched by them.  Miracles lift hearts and brighten spirits.

Please take a few minutes to read this post by Brad Strait:  A Miracle Inside the Aurora Shooting

PS  I do not know anything else about the author, Brad Strait or his blog.  But I do appreciate this particular post.  I hope you, too, will find it uplifting.

Sunday, July 15, 2012

A Great Quote

I just read this and thought I'd share it with you...

"As we go through life, even through very rough waters, a father's instinctive impulse to cling tightly to his wife or to his children may not be the best way to accomplish his objective.  Instead, if he will lovingly cling to the Savior and the iron rod of the gospel, his family will want to cling to him and to the Savior . . . .  This lesson is surely not limited to fathers.  Regardless of gender, marital status, or age, individuals can choose to link themselves directly to the Savior, hold fast to the rod of His truth, and lead by the light of that truth.  By so doing, they become examples of righteousness to whom others will want to cling."  ~Russell M. Nelson

Tuesday, July 10, 2012

Funny Pictures

Deborah, Johnathon and I were getting ready to leave for a birthday party for one of my friends today when Johnathon decided to take a couple of pictures of me.   This one is a little blurry, but it made me smile, because it makes me look like I'm built more like my Mom when she was my age, which I'm SO not.  But, it's kind of cool to look like it in a picture ... even if it takes a blurry to picture to make me look like it.  haha.



And, this one hints at this creepy thing I can do with my neck.  The thinner I get the grosser it is. My neck looks like it's webbed and it's just ... well, it's just gross, creepy, ugh ... but in the picture below, you can kind of start seeing it.  SO ... here's the thing ... if you ever see me standing in any way that my neck starts creeping out ... please, tell me.  Ewww...



Sunday, July 8, 2012

An ER Trip

This morning when I went into Ryan's room to get him ready for church, his right ear was full of blood.  There was no fever and he seemed to be in a good mood.  Since Dwight wasn't home and I was teaching Relief Society and helping one of the youth teach a Sunday School lesson, I needed to be at church.  I've seen the blood from the ear before and it's been due to an ear infection.  I thought I'd just keep him on motrin for the day and then take him to the pediatrician in the morning.

So we went to church and Ryan seemed to do alright until the very end of church.  We came home and he slept for most of the afternoon. But, then when he woke up from his nap, he had another large discharge of blood from his ear again.  I thought it was odd for a perforated ear drum to continue to bleed like that and so I called our Pediatrician's office and they told me he needed to be seen right away to get started on the right antibiotics. 

Thus, we made an ER trip .  It was a surprisingly quick trip.  It was a little shocking though to have to sit down in the waiting room.  We usually show up and get moved directly back to a room.  I usually say, "Hi, this is Ryan Mann and he's been having seizures ..." and they look at him and they take us right back and start an assessment.  I've never had to sit in the waiting room.  Not this time.  This time, Ryan was sitting up on my lap, talkative, and alert with good coloring.  Thus, we waited in the waiting room for a little bit. 


The Dr who examined him was so gentle. It was sweet. While he was examining Ryan's ears, I held Ryan's hands so that he wouldn't cause the Dr to push the instruments too far into his ears. Then I just continued to hold his hands for comfort. When the Dr started to examine his abdomen, Ryan insisted on letting go of my hands and took hold of the Dr's hand. The Dr stopped his examination and held Ryan's hand for a moment and just talked to Ryan. It was SO sweet. I appreciated his extra tenderness. Then when the Dr was leaving, Ryan wanted to sit up. So I sat him up and when the Dr said good bye, Ryan waved good bye to him. That always takes a minute, but the Dr waited and saw his little hand wave good bye. It was really precious.

Friday, July 6, 2012

Sunshine

My sister, Cynthia, better known as Sunshine to all her knew her was born on July 5th of 1966. She had Cystic Fibrosis and passed away in 1975.  Yesterday was a special day for our family as we remembered her wonderful influence she was in our family and to so many people. We are especially thankful for the knowledge that we are an eternal family! My sister, Joyce Scott Beaven, wrote a beautiful blog entry about meeting again in Heaven. 


 Yesterday was Cindy (Sunshine) Scott's birthday she is my sister and she was born July 5, 1966. She had Cystic Fibrosis and the life expectancy was 1 year at that time.  In 2012 the life expectancy is 37 years, maybe in my life time we will see the miracle of a cure.  After posting pictures on Facebook, Tina offered to introduce anyone to Cindy in heaven that did not know her.

So my first thought:  Let's make a plan to meet in heaven.     
John 14:1-3 
Let not your heart be troubled: ye believe in God, believe also in me.

In my Father’s house are many mansions: if it were not so, I would have told you. I go to prepare a place for you.

And if I go and prepare a place for you, I will acome again, and receive you unto myself; that where I am, there ye may be also.

My mansion will be the one with all the pink roses and flowers around it. Do you have your mansion picked out?
 
Friends, let's plan to meet in the middle of the beautiful mansions?  Some I will have the chance to see again here, and others I will have to plan to meet in heaven. Just know when I am leaving this earth I will be there waiting for you!! 
 Thanks, sis!  You are the best (living) sister!  You might have some competition on the other side.  haha.
To answer her question: I don't know what my mansion will look like, but I hope to be so busy visiting others that I won't be there often anyway. I look forward to the sweet reunions there and anticipate seeing you all there!

Music with Myrna

Every once in a while, Ryan and I will sit at the piano and play together. Sometimes he sings and sometimes I lift his hands and help him to play while I play.  He usually lasts about 20 minutes at the most.



A while ago, I had a great idea to invite our friend, Myrna to play piano with Ryan.  Ryan and Myrna have been friends for a long time.  When I was going through the whole Cancer thing, Myrna kept Ryan while I received chemotherapy.  Ryan loves Myrna and Myrna loves Ryan.  Myrna plays piano MUCH better than me and thus, it just seemed like it might be a way to motivate Ryan to work harder at reaching.



So, today Myrna came over and for NINETY MINUTES Ryan and Myrna played piano together.




Did you catch that?  He lasts for 20 minutes with me and he lasted for 90 minutes with Myrna!  I knew it was going to be good!



He really seemed to love it!  There were lots of happy sounds today!  And, I LOVED listening to Myrna play the piano.  If I'm ever bedridden, I'd like Myrna to come over and just play piano for me.  (I know I'm no where near as adorable as Ryan, but would you be willing to do that for me, Myrna?)

Thursday, July 5, 2012

We Are Now a Complete Family


Deborah is thrilled to finally complete our family. Every member of our family now wears
... or at least should wear glasses or contacts.

And, doesn't she look smart and beautiful in her new glasses!


Saturday, June 30, 2012

The Light Will Come

One year ago about right now as I type this the most difficult trial I have as of yet faced began. I was not sure how my life would move forward. I knew it would, but I knew my life was changed forever.  I didn't know if I would ever eat, sleep, or even breathe the same again.  My face drooped with worry.  My eyes lost their smile.  I did not feel hunger or sleepiness.  I felt consumed.   At the same time, Ryan took a steep dive downward in health and I thought I was losing him.  He had multiple severe seizures.  Each morning I went to his bedside nervous that he might not be alive.  I spent my days and evenings trying to comfort children and make sense of something that didn't make sense to me.  My heart ached. 

As this date has started to approach I have had mixed emotions.  At first, it felt like something to be dreaded, like when New Year's rolls around again and one realizes they still didn't reach their goals from last year.  I'm sure none of you have ever felt that way though.  Then I realized that this is not like that.  This is a date to be celebrated.  It is one year later and:   I can breathe.  I can sleep. I feel hunger again.  But, those aren't the important things that I've learned, or really remembered through it all.

We are blessed with an organized church.  We have home teachers and visiting teachers and Bishops and Stake Presidents and teachers.  It is very organized.  People have volunteered positions to play and for the most part, people play their rolls very well.  I'm so thankful for the rolls they played.  Each of them were essential in helping and they did it so gently and kindly.  Some play a small roll in my life.  Some play a large roll in my life.  Some people may not even realize what kind of a roll they play in my life.  (Hmm... maybe I should fix that.)  I'm very thankful.  The Stake President, he's the man who's responsible for multiple congregations, took time out from his family's vacation last year to give our family comfort during a very difficult time.  He didn't hesitate.  He just came.  The Bishop, who leads voluntarily over the local congregation, has helped our family in so many ways!  His wife also.  She put one of our sons to work one day doing just the perfect job for him.

Family is a gift from God.  I am so blessed with a loving and supportive family.  My sweetheart works so hard and is so dedicated to his family.  My children are so kind and loving to Ryan.  My parents are my backbone.  My sister is such a strength and support, and a great example to me.  My nephews are my dear friends and some of my very favorite men in the world.  My in-laws are kind and loving to me.  And, the list goes on.  I have wonderful Aunts and Uncles, Great Aunts and Great Uncles, Cousins, 2nd Cousins.  I am just very blessed in the area of family.  That's the way it should be.  We all need strong families. 

Friends who lift and strengthen you are priceless.  I hope it is never taken lightly when I say how much I appreciate you, my friends.  I really do.  There is a hymn that says, "What greater gift dost thou bestow, What greater goodness can we know, Than Christlike friends, whose gentle ways strengthen our faith, enrich our days." 

When you feel like you can't stand anymore, kneel.  Prayer works. I think we all experience, or will experience times in our lives when we feel that no one will understand all that is in our hearts.  But HE will.  He will listen perfectly.  He already knows your heart.  He just wants you to come talk to Him.  Prayer is healing.  Check in at least daily with your Father in Heaven.  Then when you've developed that habit, start your morning with Him and return and report back to Him at night.  He'll be so glad to hear from you.  He loves you! 

With His help I can do ALL things.  Each of us will experience our own difficulties and trials.  In talking with friends, I have not met anyone who does not have something that is difficult for them.  Some try to compare mine to theirs and say, "Well, I shouldn't complain."  I don't think we can compare.  I sometimes hear some of your trials and think, "I don't think I could do that."  I think Heavenly Father prepares us for what we are given.  Sometimes it's hard to see how we've been prepared until after we've passed through the trials and are on the other side of it and can look back.  Although this past year has been very hard, I'm thankful for what I have learned.  My relationship with Savior has deepened.  I have learned to rely on Him.  I have learned that He truly is there for me in all things.  That when my legs feel to weak to stand any longer, He will hold me up.  I have learned that He will give me the words to say when I have no idea what I will say.  I have grown to love Him, even though I thought I already loved Him.

I know now more than I knew before that I love Him and He loves me.  Both my Savior and my Heavenly Father.

It has been a hard year.  But I am thankful that I know these things.


Monday, June 25, 2012

Called to Serve


Last May my nephew, Kevin gave me the most beautiful gift.  His friend, the talented artist, Julia Fish Thompson, created two beautiful calligraphy prints of the song, "Called to Serve."   He had one print done for me and one for me to give to a very special friend of mine who had shared a special story with me about this song. These were done to honor her beautiful daughter Emily and my son Ryan.

The words of this beautiful hymn are:
 
Called to serve Him, heav'n-ly King of glory,
Chosen e'er to witness for his name,
Far and wide we tell the Father's story,
Far and wide his love proclaim.

Called to know the richness of his blessing --

Sons and daughters, children of a King --
Glad of a heart, his holy name confessing,
Praises unto him we bring.

Onward, ever onward, as we glory in his name;

Onward, ever onward, as we glory in his name;
Forward, pressing forward, as a  triumph song we sing.
God our strength will be; press forward ever,

Called to serve our King.



I have been so anxious to share these beautiful prints with you, but due to some delays in the framing process, it's taken a while.   But, they are FINALLY ready for your viewing!


Thank you, Camille, for sharing so much with me.  I aspire to be an inspired Mother like you.  Thank you, Kevin, for your thoughtfulness!   You are an amazing man.  And, Julia, thank you SO much for sharing your talent, twice. 

Tuesday, June 19, 2012

Call Kevin

Last summer Deborah was going under water at the pool, but this summer she has regressed.  Do your children ever do that? So I decided to put Johnathon and Deborah in swimming lessons. They were both doing well ... until the swim instructor who decided to HOLD Deborah under water past the point of comfort.

I don't know what he thought he was doing. He was a new instructor. New to her and new to instructing.
 
Long story short.  Deborah is no longer willing to go under water at our pool.  But, she is willing to play in the water without her floaties.  Just enough to make me nervous. 

So, today we were just about to leave the pool and she was playing in a large blue ring when she slipped and I saw her go in under the water.  I was standing right on the edge of the pool.  My first instinct as a mother was of course to pool her out, but then I realized if I acted in panic, she'd be scared about going under.  She was only in water that's about 2 feet deep.  All she needed to do was stand up. 

And, she did.  She stood up with a look of shock on her face and I smiled at her and said, "Wow! You did such a good job!  I'm so proud of you!"  I could see the confusion on her face at first.  She was actually not intending to do that and she was really not happy about it.  She was really wanting to cry.  But, then there was a hesitation. 

I helped her get out of the water and said, "Hey, who do you want to call to them about that?  You did such a great job remember to blow your bubbles." 

Then she shocked me.  I was expecting Dad or Nana or Papa or Jessica or Aunt Joyce.

"Kevin."

I must have had a look of confusion or shock on my face.  She said, "What?  I haven't talked to him in a while."

So, we called her cousin Kevin.  Thank heavens Kevin is a great guy!  After a couple of rounds of phone tag, she was able to be congratulated by Kevin and her sense of accomplishment was complete.

Thanks, Kevin!  We love you!


Friday, June 8, 2012

Sizes of People

Small people talk about people.
Medium sized people talk about events.
Great people learn to talk about ideas.

~Susan Easton Black's Father

Thursday, June 7, 2012

Celebrations with Deborah



Today has been a sweet day with Deborah.   She painted this beautiful rock. 



We have celebrated her successes today and it's just been a good day!

Wednesday, June 6, 2012

Manipulation and Therapy

On Tuesday I quietly entered the therapy room to take a few pictures of Ryan working with his Occupational Therapist, Manuel.   I didn't say a word, but just snapped a couple of pictures.


As you can see from the picture above and below, he was working so hard and sitting so well with just a little help.  Ryan looked so strong.  He even seemed to be enjoying himself.


Then, I said, "Hi, Ryan!"  And, the manipulation began ... notice the eye rub that says, "Oh, I'm so tired!"


We're all on to him about that.  So, I don't rescue him.  So, once he remembers that, then he kind of smiles and continues to work.  (Well, sometimes.)  But, he never fails to give it a try.  

It was fun to catch it on camera.  It really made me smile that in the first 3 clicks, I caught it on camera.

Below are a couple of other shots that I thought you might enjoy. 

A few interesting things you might notice in the pictures: 

The white the brace on Ryan's chest helps to stabilize his midsection so that he can work a little harder and a little longer.  We've really seen a lot of improvement since we started using it.  It's called a TLSO brace, which actually stands for Thoraco-Lumbo-Sacral Orthosis. It wraps around Ryan's body and then velcros closed in the back.  You may also notice that there's a little round cut out just off center by his belly button.  That is actually cut out so that his mic-KEY button doesn't get messed up by the brace.

The green disc that Manuel is holding in his right hand is what Ryan was sitting on.  (Manuel was removing it as I was taking this picture.)  I'm not sure if he was using it just to position Ryan or if he was using it get Ryan to balance himself more.  It can be used for both purposes.


One of the skills that we are working on with Ryan is reaching.  He has just recently started using his hands more.  He can now wave hello and goodbye.  He will occasionally even lift his arm a little when he waves.  So now we are trying to get him to extend his arms for things.  You can see in this next picture that Manuel has moved the toy away from him and is getting him to push the horn.


You might also notice that Ryan's face is pointing away from the toy, but if you look closely, you'll notice that his eyes are looking in the direction of the toy.  Ryan seems to do that a lot.  From what I have read, it is common with children with cortical vision impairment.

I hope you've enjoyed a quick peek into therapy with Ryan.  It was a good day!  I'm so thankful Ryan is getting stronger.  He sure has worked hard and he's come a long way in the past year!