Little things

One day when I don't feel so entirely washed over by fatigue, maybe I will be much better at writing all the things going on around here. So here's a snapshot of a few things:

The kids thoroughly enjoying snuggle screen-time together

Aunt Julie came for a visit while Brooke enjoyed a splash in the tub

Michael thinks playing with the silverware is super fun

Tim put a light in our family room and let the kids climb the ladder.  No one scared of heights yet!

Michael is trying out a new device that speaks for him.  Here his speech therapist is teaching him how to touch the screen to make it say words.  He is mostly interested in going right to the keyboard app and pressing a letter of the alphabet and then doing the sign for it.  He knows most of his letters by site now too, meaning if I show him a letter, he will do the sign for it.  He laughs and giggles every time this new device "talks" when he presses a button.

These two are fast becoming play-mates.

Me snuggling with Brooklyn and Michael, probably watching Signing Time for the one billionth time.

Trading a ski day for a work day

Yep, this weekend we had to get tough as parents.  Saturday morning the kids arose early to go skiing and were met with the worst news ever: the ski trip has been cancelled, they will be spending the whole day doing chores and no playing allowed.

Oh, it is so hard to be a "tough parent."  We wanted to much to give our kids a great weekend filled with fun memories.  But we had to shift the direction of some patterns we were beginning to see in our kids, namely, entitlement.  Our oldest child in particular was having a very difficult week, lashing out at us and her siblings physically, verbally, demanding we do her every wish and command.  We tried pouring on the patience and love as much as we could.  But by Friday evening, we felt we needed to go the "tough love" direction.

And so we did.  And the first few hours were filled with lots of tears, anger, and pretty clever attempts at negotiation.  But by the end of the day things were going much better with smiles, hugs, and even "thank you's."  We worked alongside the children.  We didn't want them to feel abandoned, but loved.  I hope it made a difference.

Loved

This was on our front lawn with our driveway shoveled yesterday:

Seriously, seriously awesome.  We feel loved.  Thank you, thank you, whoever you are.

Christmas break according to the camera phone

Our Christmas break was very refreshing to toss all the therapies, school schedules, lessons, work for Tim, and just spend time relaxing and doing activities to make memories and strengthen our family relationships.  We didn't travel anywhere as I've called a travel moratorium on Brooke and Michael until those two can make sleeping somewhere other than their own beds a pleasant experience for all of us.

I forgot to mention before Christmas Sarah had a piano recital.  We are loving her new teacher who has really helped Sarah learn to love the piano (after saying she didn't want to play anymore).  She also comes to our house so I don't have to drive one more place - thank heavens.

 Here's some of the things we did over Christmas break according to the camera phone:

I took the oldest 3 kids ice skating one day.  They are really coming along in keeping themselves up on those things:

The kids have seen the movie "Frozen" twice now and take their dolls (thanks to Grandma & Grandpa B. for their Christmas presents) from the movie everywhere they go.  Spencer even totes around the boy from the movie and is usually either using him as a weapon, or having him fight "bad guys."  I was super impressed by the movie (it's hard to impress me with movies), particularly the music and Broadway style of the film.

Took a minute to capture myself with each one of them - in my effort to "be in the picture" more so they will have some proof that I was around:

Also took the oldest 3 to get some ski equipment as they all started ski lessons this year.  It has always been a dream of mine for my kids to be able to ski and this year it finally came to be. We've been carefully budgeting for this.

 Unfortunately, I don't have any pictures from their first day of lessons, but they all came away with smiles, even with blizzard like winds, blowing snow and a bitter windchill.  Spencer had a huge grin on his face the whole time.  Whitney sometimes sat and played in the snow when she got tired, and Sarah pretty much mastered the bunny hill.  I was so proud of them. While they skied, I hung out in the lodge with this cutie:

And speaking of mastering, Brooklyn has mastered sitting up and trying to crawl-hop to places she wants to go.  In less than a month, her physical abilities exploded.  She's still not a great sleeper, but she is happier during the day which makes me even more fond of her.

Michael got an awesome haircut.  Tim fed him marshmallows while I trimmed away for 30 minutes.  It worked!

We had some cousins come and visit at the last minute for New Year's.  These kids adore each other and there are always tears involved from the oldest ones when it's time to say goodbye.

Introduced Brooke to something other than rice cereal.  That face, "do I have to eat my squash?" says it all.

 Next up - we are going to work on setting some New Year's goals.  Small ones.  (I promise, mom).

Christmas 2013

Liz:  It has been awhile since I have been the one writing and posting on our blog.  It's been a difficult time the past several months I just haven't had the time or desire to come up with words to write.  So thanks to my marvelous husband who catches all the balls I drop for taking the time to post about some of the major events that have occurred around here.

These two keep our hands full.  Now they are crawling/rolling all over each other. And liking each other more.

Our Christmas was simple and lovely in many ways.  We had to omit some things this year like putting up outdoor Christmas lights because we just haven't had the bandwidth.  We had to choose carefully what we did do and try and make it count.

The kids got one night this year to sleep by the Christmas tree. 

Babies at Christmas time are just the best.  Brooke is rolling around now and frequently found herself under the tree.  Once she even got a bow stuck on her head like she too was a present to our family this year.

Four-year-old Spencer really got into Christmas this year.  I'd frequently find him playing with our Playmobil Santa.

Tim went caroling with his friends and they stopped at our house one of the nights.  Here are the kids peaking out the window as Tim's group was off to spread good cheer and song to other families.

One night we acted out the nativity.  Tim read the story from Luke 2.  Whitney was the angel, Sarah was Mary, Spencer was Joseph, Brooklyn was baby Jesus, and Michael was the donkey/shepherd/wise man.  None of the kids but Whitney wanted to dress up and I guess that's partly because I don't have good dress-ups for the nativity yet.  We had them use their woobie blankets to cover their heads.  The girls had drawn straws for the parts and then we spent 15 minutes trying to convince Sarah to play Mary because she thought Whitney looked prettier as an angel.  Girls.  Sigh.

Christmas morning coming down the stairs

Whitney got a doll for Christmas

Sarah got fairies

Spencer got some of Lighting McQueen's friends

Michael got this kitchen.  One day I will write the miracle of how this came to our home.  It was truly a blessing and answer to prayers.  His therapists will be so proud to see him reaching for those drawers.

Seriously, Christmas babies are the best. 

A Tablet was no where near in the budget this year and was just a dream present I didn't even ask for so I was so excited to open one Christmas morning.  I totally got teary-eyed when Tim told me he had been secretly saving small bonuses from his job for quite a while so he could buy me one. 

One of the best memories from Christmas was our dollar-store adventure.

This year I noticed my kids were very much into the "getting" side of Christmas and had no clue about the "giving" side.  It was really weighing on my mind.  I realized that Tim and I have been stretched so thin over the past several Christmases, we just haven't had the bandwidth to teach the children as much about giving as we should.

Even this year, I purchased their "Christmas buddy" presents for them with the intention they would do chores to earn them, but then I didn't even have the time or ability to come up with extra chores for them to do.  I know that probably sounds crazy, but really, I'm not kidding when I say things have been crazy around here.

So one Saturday before Christmas I decided to take the 3 oldest kids to the dollar store to purchase a present for each member of the family.  I didn't have time to have them earn the money, but I thought if I could at least get them thinking about and learning how to give a present to someone else, it would be a good place to start.  I gave each of them $6 - one for each member of the family - in an envelope with their name on it and told them to keep it in a safe place or let me keep it safe for them.

When we got in the store, Michael - who also came along - started screaming and crying and kept it up for the entire hour we were there.  The kids were fascinated by the dollar store as we don't go there often and immediately began filling their baskets with presents for themselves.  I told Spencer he needed to get things for other family members and not for himself.  He looked up and smiled and said, "Mom, this gun is for you!  And this ball is for Dad! And Spiderman is for Brooklyn!  And Michael gets this car!"  Whitney decided she was going to get 3 presents for daddy because she likes him best.  Eventually, I was able to convince them to pick things a little more fitting for each family member.  It took the children awhile to get their minds wrapped around the idea, but after awhile, they got the hang of it.

Then we went to check out. The cashier must have been having a bad day.  She rolled her eyes as I was helping Spencer count out his money (Michael was still screaming) and Whitney started having a fit and saying, "Mommy!  Mommy!  Mommy!" She managed to kick/run into the cashier behind us, which elicited a mean, "Excuse me little girl!" from that cashier.  I finally said, "Whitney, hold still, I'll be with you in a minute."

Then Spencer found the balloons and started begging for one.  It was Whitney's turn to check out and I said, "Okay, what do you need sweetie?"  "I lost my money, Mom."  The line behind us was getting really long.  The cashier rolled her eyes again and sighed loudly.  We set her presents aside and had Sarah purchase hers.  Then we searched the store for her envelope, which thankfully was in the toy isle, and she was able to purchase her presents.  We walked out to the car where I discovered the reason Michael had been so upset the whole time:  he had tinkled down his leg, soaking his pants and socks and pooling in one of his shoes. Poor guy.

I think we came out alright in the end.  Tim got socks, a screwdriver kit and razor blades.  I got kitchen gadgets.  The kids got some toys or crafts.  Even Brooklyn got a stuffed animal and baby rattle.  It was sweet to see how excited the kids were to give these things to each other with genuine hugs and thanks.  I once heard it said that sometimes Christmas is not for the faint in heart.  But I'm starting to think the time and patience it takes to teach our kids just about anything important is not for the faint in heart either.

The Best Christmas Present Ever

I took Michael to Children's Hospital early on Thursday morning for his scheduled MRI.  It's hard to describe the feelings of anxiety whenever we take him in for an MRI.  "Scanxiety" is how many of us refer to it in the cancer community.  No matter how well or poorly they are feeling, you just never know what the results of the scan will be until until the oncologist walks in with the news.

In Michael's case, we are so grateful to report that his scan was clean!!!  Still no sign of his cancer returning over one year after his treatments were completed and two years after he was diagnosed.  At this Christmas time that was absolutely the best gift we could have received.  Not only that, but his scans will now be every 6 months instead of every 3-4 months.  Michael never will be completely out of the woods in terms of being at risk for a cancer recurrence.  He will need to have periodic MRIs for the rest of his life.  The first 5 years are particularly critical.  But as the time required between MRIs increases, so do his chances of long-term survival.

Hooray for a clean scan!!!

After the scan Michael had a hearing test.  The radiation damage increases his chances of hearing loss, so they want to periodically check his hearing.  It's interesting how they check the hearing of a 2-year old who has an incredibly short attention span.  Michael wore a set of headphones and sat on my lap in a sound booth.  One sound technician sat outside the booth and generated interesting sounds in his ears at different volumes and pitches.  Another technician sat in front of us and helped train him to look in the direction of where the sound came from.  Whenever he did, a toy on the wall would light up and make sounds and we would cheer for him.  Fortunately his hearing tested well within the normal range.  Another bit of good news for the day!

Liz threw out her back during the week and couldn't walk for a few days.  One of the days was Thursday when I was at Children's with Michael and couldn't help her.  We are fortunate to have a great visiting teacher and friends who helped with meals, running errands, and taking care of kids for a few days so that Liz could mend.

At this Christmas season we are so grateful for our wonderful family and friends.  We're especially grateful for our Savior Jesus Christ who has carried our burdens and continues to help us carry them as we walk this road called life.

MRI and IFSP

Michael has his next MRI on Thursday morning.  We're trying hard not to think too much about it, and hope and pray for another clean scan.

He also had his IFSP last week, which is basically when his therapists meet together to check on his progress and set some new goals.  His progress is very slow, particularly when it comes to speech, so we're rethinking our strategy.  He's working with two speech therapists now, and we're considering adding a third to help us with sign language.  He does most of his communication with us through signs that he has learned by watching Signing Time videos.  He appears to have so much he wants to tell us, but with his lack of coordination and our limited knowledge of sign language, it's really hard for us to know what he's saying.  We're hoping if we can get someone to help us understand Michael better, it will be huge breakthrough for us. 

We still plan on continuing with our other speech therapists, but we're having a terrible time getting insurance to reimburse us for the one in Denver.  We've paid thousands of dollars out of pocket for it so far and we've been fighting our insurance over it for months, but no luck so far.  We have an advocate through my work that we hope will help, but so far they're getting the run-around as well.  It's been an incredibly frustrating process.  We've temporarily suspended our weekly Denver visits until we can come to some sort of resolution.

There's a respite care facility in town that offers free babysitting for children with special needs and their siblings about once a month to give parents a break.  We decided to give it a try on Saturday, so we dropped the four oldest off for the afternoon.  Each of the kids gets a buddy, who is a volunteer assigned to be with them at the center.  They do crafts, play in the gym, make yummy snacks, and this time they even received a visit from Santa Claus!  Whitney told me afterwards she didn't think this was the real Santa Claus since his beard kept falling off.  Sarah said that when Santa asked her what she wanted for Christmas, she responded that she hasn't decided yet.  Santa gave her this look and told her, "You're running out of time, you'd better decide quick!"

The kids also said that some friends at church came to sing some Christmas carols while they were there.  We remembered seeing an announcement the Sunday before at church about seeking volunteers to sing carols at the respite center, but didn't put two and two together until our children told us about the visit.  They were nervous about going to the center and not knowing anybody, so we're glad they ended up seeing some familiar faces.

It was really eye-opening seeing some of the other children with their challenges at the respite facility.  Some of them have some serious challenges that make us grateful for the challenges we have with Michael.  At the same time, it dawned on us that there are probably people who think the same thing about us.  Some days it still hits us that having a child with special needs is our reality now.  We always thought it was the sort of thing that happened to other families, and never dreamed it would some day happen to us.  We're so grateful for our Michael, though, and wouldn't trade him for anything.  We're also so grateful we don't have to face these challenges alone.

Here are a few pictures from this last week:

Brooklyn warmed up nicely to the Wheeler grandparents last weekend and looked so cute sitting in her Bumbo and holding onto Grandma's finger.

We helped Grandpa celebrate his birthday while he was out here.  One of his favorite pastimes is water-skiing, so we decorated a water-skiing cake for him.

Whitney has to practice writing out her spelling words for school each week.  This week she got a little creative and drew pictures to go along with her words.

I got a particular kick out of the picture of her chicken, who apparently is either craving KFC or is thinking, "When I grow up I want to be a drumstick!"

Sarah's Baptism

Our 8-year old Sarah was baptized yesterday!  What a wonderful day for our family!  Both the Wheeler and Bellamy grandparents braved sub-zero temperatures and icy roads to be here.  We felt the love of our other family members who wished they could be here, too.  We appreciate the family, friends, neighbors, and even Sarah's piano teacher who came to support us on this special day.

The program began with Grandpa Bellamy teaching about the importance of baptism, after which I had the wonderful privilege of baptizing Sarah with her two Grandfathers standing as witnesses.  The water was warm, and Sarah just beamed as we gave each other a big hug.  As we changed into dry clothes they showed some short video clips: "I am a Child of God", "Things that Matter Most", and "Families Can Be Together Forever".

We had originally planned on having a special musical number sung by our children and their cousins.  Since the weather prevented the cousins from being able to attend Sarah's baptism, our Bailey friends (who are practically like cousins) joined Whitney and Spencer in singing a primary song about baptism.  It was the cutest thing ever seeing five young children singing so sweetly. 

Grandma Wheeler followed by teaching about the Holy Ghost.  She shared experiences our family has had with the Holy Ghost and asked us if we wanted to know what the Holy Ghost looks like.  Of course we all did, so she shared with us a children's book about the Holy Ghost.  The book explains that although we don't know what Holy Ghost looks like, we feel his presence like a warm blanket wrapped around us.  She then presented Sarah with the book and a warm blanket. 

After this, her Grandfathers and a few close family friends who hold the Priesthood joined me in giving Sarah a special blessing where she was confirmed a member of The Church of Jesus Christ of Latter-Day Saints and received the Holy Ghost.  Lastly, our bishop offered some kind words and officially welcomed Sarah as a member of the church.

Following the baptism service we invited those who attended to a light dinner and refreshments in our home.  We are so grateful for wonderful family and friends who made it such a special day!

A Memorable Thanksgiving

For Thanksgiving our plan was to drive out to Utah on Wednesday to visit Liz's family.  However, last Sunday Michael was throwing up and had a fever, and the eye he had surgery on looked terrible.  His eye was dark red and parts of his eyeball were really swollen around the surgery site.  On Monday his eye looked even worse, so Liz took him in to see his surgeon.  Dr. Arnold determined that Michael had an eye infection, but the infection was unrelated to his fever and throwing up, so it was likely he had the stomach flu as well.  Our poor little boy!  We put Michael on antibiotics and tried to come up with a backup plan in case driving out to Utah on Wednesday wasn't going to be an option.  Fortunately, on Wednesday morning Michael seemed to be on the mend, so we quickly packed up and made the trip.

On Thursday before the big Thanksgiving meal, Liz's sister Carrie and I took our three oldest kids and some of their cousins to see "Frozen" in the theater.  Whitney loved it so much she declared she wants us to rent it next August to show at her birthday party.  The Thanksgiving feast was absolutely amazing, and it was great having the entire Bellamy family together for it.  The prep and the cleanup took an incredible amount of work; I spent most of the day taking care of kids so that Liz could help out in the kitchen.

We were worried about the sleeping arrangements for this trip since there would be seven of us sharing two bedrooms, with Brooklyn and Michael being particularly terrible sleepers.  Sure enough, Wednesday night was a rough night with Brooklyn and Michael waking up frequently during the night. But Thursday night took the cake.  Both Sarah and Whitney came down with the stomach flu, so we were up most of the night cleaning up throw up (which of course further aggravated Michael and Brooklyn's night time antics).  Spencer slept through the whole thing.

By Friday morning both Liz and I had also come down with the stomach flu, so we tried to spend the day recovering as much as we could.  November is a big birthday month for the Bellamy's so we were supposed to have a big birthday party at Liz's parents house that afternoon, but on account of the illness we moved it to Liz's sister's house.  Our children were so disappointed they were too sick to attend, they had really been looking forward to it.

Fortunately it turned out to be only a 24-hour bug, so by Saturday our family was mostly feeling better, just in time for family pictures.  But unfortunately, by this time the flu had spread to some of their cousins, so we couldn't get everyone together for family pictures.  We got as many family members together as we could, and we're hoping the magic of photoshop will make it appear as though everyone was there.

We drove back to Colorado Saturday afternoon after taking family pictures.  We were really fortunate to have excellent weather so the trip went smoothly.  We arrived home just in time for Brooklyn to come down with the stomach flu on Sunday afternoon.  Better watch out, Spencer!

Our last night in Utah we put the three oldest kids on the couches in the family room, gave Michael his own room, and had Brooklyn in our room.  It was by far our best night of the trip, as we only had to get up every 1-2 hours with Brooklyn. After three nights without sleep, boy are we ever glad to be home from our vacation so we can finally get some rest! :-)

It was two years ago at Thanksgiving that we took this picture of Michael:

We felt that it really captures his enthusiasm for life, so it has been the cover photo for our blog for a long time now.  It was a week or so after taking this photo that he started experiencing mysterious symptoms that led to his cancer diagnosis a month later.  At this Thanksgiving time we are so grateful that Michael has survived and thrived and is still here with us today.  We are so grateful for doctors, family, friends, and even strangers who have helped us and continue to help us through the daily struggle that has become the new normal in our lives.  And we are especially grateful to the Lord who has blessed us with five wonderful children and who continues to watch over and bless our family each and every day.

Happy Thanksgiving!

Eye eye, Cap'n!

This week one of Michael's speech therapists brought us a talking device to try out with Michael.  Each button has a picture or word associated with it.  The idea is that when he wants something, he pushes the button for it and you hear one of our pre-recorded voices say the word or phrase associated it.  Things like "milk", "snack", "hug", or his favorite, "all done".  Spencer recorded that one and the kids still burst into giggles every time we hear his four-year old voice belt out "I'm...all...DONE!!!".

Michael's new talking machine.  We still need more pictures to go with the buttons.

Early on Friday morning I took Michael into the hospital for eye surgery to help correct his strabismus.  It has been almost a year since his previous eye surgery, and his eye surgeon said that statistically speaking this should be his last.  We're grateful that once again we could do the surgery here in Fort Collins instead of traveling down to Denver.  Liz stayed home with the other kids to help get them off to school and to keep Brooklyn well fed.

Michael's surgery went very well.  Since I wasn't allowed to go with him into the OR to help put him to sleep, the nurses him a little Versed to relax him and make parting with dad easier on him.  (Shouldn't they have something to give to dads as well?!)  An hour or so later the surgery was finished.  An hour or two after that we got to come home.  He handled the whole ordeal like a champ and didn't even cry very much.

His eye is very red and occasionally has bloody tears coming from it.  He's had a fever today and has been feeling kind of crummy.  (He's been saying "I'm...all...DONE!!!" a lot lately.)  But he should be feeling better in a few days.

Chilling out in his PJ's after getting home from surgery

We saw our first significant snowfall this week.  Only a few inches worth, which (shockingly enough) they didn't cancel school for, much to our children's chagrin.  Hopefully the weather will be nice this week as we drive out to Utah to spend Thanksgiving with the Bellamy family!

Sarah and Whitney arriving home from school

Time for some hot chocolate by a warm fireplace!