My day - #185-197

Spending my day hanging out with this cutie. (#185)

Meanwhile the girls are at Nebraska's Fine Arts Festival.(#186) Angelica uploaded a video of Miracle singing "Need You Now" by Plumb. (#187)

A neighbor was over helping me fix a bottle for the baby (#188) when I was watching the video and I told her that Angelica had posted it.  She said that she would like to hear it. I said it was playing but that I could start if over if she liked.  Her response? "That's Miracle? I thought that was on the radio." (#189)

Miracle also prepared a short sermon.  

I am thankful that God used writing this sermon to teach Miracle and to heal her broken heart. (#190) We were both disappointed that she didn't make it to nationals, but in the end all that matters is that God changed her heart and hopefully touched someone who was listening. 

The girls also sang together.  There were some issues with the sound system, but if you can hear past that, they sound pretty good together.  (#191)

I am thankful that they stepped outside of their comfort zone and decided to do a duet. (#192) Every time they choose to work together on something like this, their bond becomes stronger. (#193) That is an immeasurable blessing.

Angelica did an ASL solo.

I am thankful that through this festival she found her calling so many years ago. (#194) I am thankful that she has continued to grow (#195) and improve (#196) and that each year her desire to bridge the gap between the hearing world and the deaf among us and bring the preChristians within the deaf community to Christ increases. (#197)

Finally, Miracle entered a pencil drawing in 2-D art.  The photograph doesn't do it justice.


Lent: card

World Down Syndrome Day

Today is World Down Syndrome Day.  Join me in celebrating their amazing lives.

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Today I am thankful that we were able to go to see my favorite podiatrist (#181) and that my foot is not broken. (#182) Dr. H put a wrap on my foot and leg called an unna boot that constricts and brings down swelling which consequently decreases pain.  I am definitely thankful to be in less pain. (#183) After wrapping my foot and leg in the unna boot, he wrapped it in an ace bandage and has me wearing a walking boot while still using crutches.  A lot of different measures to hopefully speed healing of the tendon that I sprained.  

I am also thankful that the girls were able to go to fine arts with the youth group this year. (#184) I regret not being able to go, but am thankful that doesn't mean they can't.  The girls spent several hours working together in the kitchen to prepare food for Angelica to eat today and tomorrow before heading out to meet up with the youth group.  

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It's nearing the end of the day and I am realizing that I am not going to be able to give anything away today.  With my busted foot and the girls away at a youth event, I am very much stuck in the house.  I have a few things in mind that I could give away, but cannot physically do anything about that.  I haven't decided yet if I will give those things away later and count them for today, tack another day on the end, or if I will just give myself grace for today knowing that as of today, day 17 of a 40 day goal, I have given away 24 items.  I have also wondered many times in the last two days if time is something I could count since I have spent quite a few hours helping a neighbor in that time period, but I think that although it is a good thing to give away, for the purposes of my Lenten goal, it doesn't count.  .  

My Day - #168-176

Today was necessarily laid back.  To start off the day, both Angelica and I overslept the alarm and I therefore missed an appointment with my friendly neighborhood foot doctor which is thankfully and regrettably rescheduled for Friday. (#168) We all three needed the day to rest, especially Angelica.  Then she headed off to school and I laid down for a nap. (#169) Miracle made fish for dinner, one of my favorite meals. (#170) A friend stopped by to chat (#171) and M willingly played with her young daughter. (#172) She also finished her drawing for the competition this weekend. (#173) The girls sound really good when they sing their duet (#174) and hearing them spontaneously begin singing worship songs brings joy to my heart. (#175)

Sometimes I hesitate to share the details of my rather uneventful life here for the world to see but realistically with all the autoimmune disease is stealing from me I don't want to lose these memories even if they are mundane.  Therefore, I am grateful that I have this forum to share it in. (#176)

Lent: artificial flowers

A Look Back - January 2013

This time last year, my girls were in full swing preparing for fine arts festival.  I snapped a picture of Angelica as she was making a tape sculpture - her first attempt at 3-D art.

Our Grand Adventure - Days 16 - 24

Day 16 - We left the resort with a list of things Miracle wanted to accomplish for the scavenger hunt and the intention of picking up the artwork and final scores.  Miracle received a Superior for her 3-D art and an Excellent for her Digital Photography.  Angelica received a Good for her Digital Photography.  As the morning wound down, Miracle realized she was in 8th place for the scavenger hunt and really picked up her efforts with only 3 hours to go.  I broke the little finger on her sculpture 3-D art.   It was not fixable so it went into the trash.  We went back to the resort and rested until it was time for the celebration service.  

Day 17 - We headed to Typhoon Lagoon.  We didn't have a lot of fun and decided it was for two reasons.  Remember in the 80's when all water parks were the same?  It was much like that.  Also, it wasn't very accessible... there were only three things I could do: the wave pool, the lazy river, and one slide.  

Day 18 - We slept in and then headed back to Downtown Disney to go to Disney Quest.  Once again, we were disappointed.  It is simply an outdated arcade.  

At the end of the day, we decided that if we come back to Disney, we probably won't purchase the water fun and more since of the three that we did, we only liked Blizzard Beach.  There are other alternatives for things to do with the water fun and more add on - mini golf and a sports museum - but none of that really appeals to us either.  

Day 19 - Magic Kingdom!!!  We started the morning by asking if there was anything we needed to assist me.  We were directed to the map for guests with disabilities which was slightly helpful in that it let me know which rides I could access but it wasn't overly helpful because we had already figured out all the tips listed on the pamphlet.  We had a lot of fun.  We made it through everything available except Tomorrow Land and we missed several parades and scheduled things we wanted to see... there just wasn't enough time.  If we return, we will schedule two days to visit Magic Kingdom.  Our favorite of all the parts we visited was Frontierland.  There are two must ride rides there:  Splash Mountain and Big Thunder Mountain Railroad!  We didn't return to the resort until after midnight.  

Day 20 - Epcot!!  The girls were up and out the door by 8:00.  I was so tired that I needed to stay back and rest some more.  The girls returned around 12:30 and I asked them if they were done or if they wanted to go back - they had been to almost everything but wanted to go back with me.  

When we arrived and I saw the ball in person, I was amazed.  It has always been my dream to go to Disney - especially Epcot.  It was a great day!  We made it through everything with very few hiccups. It is more laid back and not as rushed as the other parks.  There were a few things geared toward the younger crowd and we skipped those.  The best rides at Epcot:  ALL OF THEM!!!  

Near the end of the day, a cast member asked me for my GAC - I asked what that was and he directed me to Guest Relations once again.  This time I asked specifically for a Guest Assistance Card.   It was hugely helpful.  Often, a guest in a wheelchair will wait longer once they get to the front of a queue because they must them wait for an accessible ride.  The GAC allows the guest to automatically go through some fast pass lanes which then balances out the wait time.  By making it to the front of the line faster, it makes up for the extra wait time.  

We were back at the resort before 8 and headed to bed early.  

Day 21 - We arrived at Animal Kingdom before opening and headed straight to the Kilimanjaro Safari ride.  We had been told that if you arrive early in the morning, you are more likely to see the animals moving around.  It was amazing!  Do not miss the Lion King show!  We also rode Everest - Miracle rode it twice.  Once was enough for Angelica and I!  Kali River Rapids is another part that you don't want to miss!  We made it through the park and were back at the resort by dinner time.  Another relaxing yet enjoyable day!

Day 22 - The girls went to Blizzard Beach without me as I needed the rest.  I slept off and on all day.  Disney with Lupus is overwhelmingly exhausting.  When they returned, we packed up and loaded the car so we could leave early the next morning.  

Day 23 - We left Orlando and headed west.  The original plan was to camp at Gulf Port, MS but we quickly discarded that plan because we wanted to drive as far as possible and get away from the approaching storm that was hanging out in the gulf.  We drove through heavy rains, often so heavy that I couldn't see and had to pull over.  We made it as far as Beaumont, TX before stopping for the night.  

Day 24 - We drove the rest of the way to Waco and met up with Autumn.  She decided that we would enjoy staying at a hotel instead of throwing up a tent outside of their camper.  They are waiting on a house contract to go through - hopefully it will  work out this time.  We went out to eat and then Miracle and I headed back to the hotel to rest while Autumn and MM and Angelica went to pick up some things we would need for the next few days.  

Our Grand Adventure - Days 14 & 15

Day 14 - HOLLYWOOD STUDIOS!!! - We had so much fun!  We arrived shortly after 9:00 and started walking around.  It wasn't long before I realized we didn't really have a plan and took charge of the map to create one.  I knew that we would miss things we wanted to see if we didn't take a few minutes to make a flexible plan.   We visited almost every attraction.  The Muppets were closed for construction so we didn't make it there.  At the Indian Jones exhibit, Miracle was chosen to be an extra so she got to get in costume and go onstage.  It was really cool!!  Angelica even chose to ride the Rock & Roller Coaster and the Tower of Terror!  She did great!  We stayed until the very end of the day and watched Fantasmic!  We even got to sit in the front row!  

Day 15 - There was very little on the schedule that day so we started the day by sleeping in.  As we were getting ready to go the Convention Center, I checked the Fine Arts website and learned that Miracle did not have a call-back for her preaching.  We headed to the Festival and checked out some more booths.  Miracle also did some more things for the scavenger hunt.  Then we hung out in the lobby for a bit so we could all relax and use the wi-fi.  We headed back to the hotel and went to bed.  

Our Grand Adventure - Days 9 - 13

Day 9 - We woke up bright and early, had a good breakfast, and headed on our way.  Our first stop was in Lawrenceville to meet one of our soap providers, Linda and Ed from lyesoap.com, and pick up some soap.  We also had the opportunity to visit a bit and learn about the soap making process.  Angelica is quite interested in the whole process.  Then we continued driving, and driving, and driving... until 7:30 when we finally arrived at our campsite in Fort Clinch, Florida.  We set up our tent, partially in the daylight and partially in the dark, but not until we were warned to avoid the bobcats, alligators, and overly aggressive raccoons!!  We showered and settled down for the night, knowing we had an early morning ahead of us.  

Day 10 - We set an alarm for 5:00 am so that we could watch the sunrise over the Atlantic Ocean.  It was truly remarkable.  Miracle and I were quite tired so we went back to the campsite and napped a bit before tearing down the tent.  As soon as that was done, we went to the beach to enjoy some time playing in the ocean.  Miracle struggled to push me in a beach wheelchair.  I struggled to let her, knowing that if I didn't, I wouldn't be strong enough to handle the rest of the trip.  When we had spent enough time in the waves and gathered our fair share of shells, we headed to Orlando.  We arrived at an amazing resort that we have the opportunity of spending two weeks in thanks to the generosity of a friend.  We got settled into our suite and headed to bed, anticipating the next day's adventure.

Day 11 - We headed out early to Blizzard Beach, but it seemed like things kept slowing us down so we didn't arrive at the park until 10:30.  I traded my wheelchair for one of theirs so that the water wouldn't ruin mine.  We enjoyed the day thoroughly, much more than anticipated.  

We also became more aware of people's misconceptions about wheelchair accessibility.  There are truly only two rides that are completely accessible.  There are a few more that are moderately accessible, mostly because the staff are so accommodating and go out of their way to make the Disney experience enjoyable for everyone.  People wrongly assumed that we went to the front of the line when often we had to wait longer for things that were accessible, like the gondola necessary to transport wheelchairs to the top of the mountain.  We learned firsthand that a route that is accessible to wheelchairs often covers more distance and time than the more direct route designed for everyone else.  Enough of the rant.  

Day 12 - The first day of Nationals - we slept in a bit before heading to the Convention Center and registering the girls for the festival and turning in their artwork.  Miracle entered three categories: Short Sermon, 3-D art, and Digital Photography.  Angelica entered Digital Photography.  

We were all tired, so we headed back to the resort and napped again.  Once we awoke, we had a quick lunch and headed to Downtown Disney.  We weren't sure what to expect.  We had a lot of fun looking through the shops.  We are looking forward to returning later to spend one of our tickets at Disney Quest.  

Day 13 - We were up bright and early to head to the Convention Center.  Miracle was scheduled to preach at 10:24.  When we arrived, we looked through the artwork to make sure the girls' artwork was set up properly.  Once we were satisfied that it was, we looked around the exhibit hall for a little while and headed to the room where Miracle was scheduled to preach - she got a Superior and is anxiously awaiting news of whether or not she will receive a call-back.  After that, we headed back to the exhibit hall for the rest of the day.  We all got henna tattoos and the girls participated in a scavenger hunt with a college Miracle is looking at.  All in all, it was a good day.  

Plus, I got a bit more of a perspective of life in a wheelchair in public... kids are on my level and talk to me freely, struggling people are more willing to share their struggles - possibly because it is obvious that I have struggles of my own, and it provides a great angle for photographs!  

We were finally at the resort early enough to have some time to relax and wind down before falling into bed. We grilled our dinner and ate outside.  Then we sorted through the day's finds and cuddled on the couch for a bit before the girls headed off to bed.  

I had hoped to blog more consistently while we were here with the Internet access but have been so tired that hasn't happened.  I have to learn to listen to my body and slow down so that I don't get too sick and going to bed rather than blogging is part of that. 

Greeting Cards

Do you remember a month ago when I posted about the girls' fine arts festival?  Well, since then the girls have been hard at work practicing for nationals and trying to find ways to finance the trip.  Printing the book they wrote and illustrated was too expensive to make any money from trying to sell it, but they finished making the greeting cards that they are going to sell.  I made a copy of all four cards for the top of an order form.  

The cards are blank inside.  They are selling them in packs of 12 for $5, plus shipping.  What do you think?

Fine Arts Festival

Our state fine arts festival was this past weekend.  Fine arts festival is something Assembly of God church does every year to encourage teens to discover their talents and become better at using them to glorify God and minister within the church.  My girls entered quite a few categories:  worship dance troupe (together), ASL solo (FigNewTon), vocal solo (both individually), children's literature (together), digital photography (both individually), t-shirt design (FigNewTon), and visual art 2-D (Butterfly).  They did quite well; even earning invitation to nationals for their dance and ASL.  

To earn money so that they can go to nationals this summer, they are planning to sell copies of their book and have some cards printed using the photos they submitted to the festival.  Of course, the cards wouldn't have the words printed at the bottom of the page like these photos do.