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Firefly Nights










There is something magical & quixotic about a warm summer night filled with fireflies.  Something that calls to the child within to find the world resplendent with magic & fairies.  The west coast doesn't get fireflies, so it wasn't until we moved to the Midwest that we discovered how simply lovely the world is when filled w fireflies.  I'm so grateful my children live in a land covered with magical creatures.  Where the innocence of catching a firefly in your hand, even briefly, is wondrous & thrilling.  The squeals & giggles pervade even though my children are growing up.  Granted I don't see Kier out there chasing them like he used to & Liam cannot get out & about in our backyard due to access issues but he likes to watch his siblings chase them & catch them & bring them to him so he can see them light up, up close.  McKenna, though she is 13 going on 14, and younger brother Nolan, almost 11, love to follow the little bugs around the yard & I live for those nights when the firefly population seems to all be visiting our back yard.  I wish I could send this miracle to our friends & family back home so they too could enjoy this simple Midwest luxury.  Who ever thought simple & luxury could go hand in hand?  I assure you, they do, in at least this one instance.  Something I do not take for granted even a little bit.  Especially during such a busy week as it has been around our house.  So much to do, so little time to accomplish everything.

The best way to start a night of firefly chasing is to catch the one that has managed to break into your house first.  This little light of ours needed to be carefully caught & released before we could meet his family & friends.  ;)





When not in awe over luminous bugs in the evenings, we were going, going, going, all day long.  CA left in the wee hours of the morning on Monday to head to Austin, TX for a weeklong computer conference.  McKenna was dropped off Monday morning for a week of Girl's Camp with our ward at Camp Sinawa, near Valders, WI.  Of course, that meant a lot of packing & gearing up to be ready to go by Saturday when the bag drop off took place.  Unfortunately, Flynn did not agree with McKenna's choice to leave him behind.





All these departures left me with Kier, Liam, & Nolan for the week.  I drove home after dropping her off in Kenosha at 7:30 for the 3-hour drive north, only to load Nolan up in the car a half an hour later to head in for a Dr appt back in Kenosha. By the way, where we live it's a 30-minute drive in to reach the closest edge of Kenosha.  Monday was filled with cleaning, organizing, & entertaining the troops.  Tuesday Liam's favorite paraprofessional came & spent the morning listening to him, and yes Nolan too, explaining Minecraft & even bossing her into grabbing a controller & trying to play along with them.  Bless her heart, what a patient and loving woman.  I am so grateful that he has such compassionate & dedicated caregivers at school & in his life.   After she left I had more paperwork to organize & appointments to prepare for the following day.

Goofing around from the boys while video chatting with their dad...



Wednesday was Liam's first physical therapy appointment.  Primarily a meet & greet filled with measurements & lots of questions, as well as our first official introduction to a stander, which resembles a medieval torture device more than it does a necessary piece of therapy equipment.


He loved it by the way & they are in the process of contacting Cigna to get the proper equipment ordered for the house.  It was deemed that other than a couple more in clinic visits to acclimate to the stander that, for the summer at least, the bulk of Liam's physical therapy will be a weekly warm water therapy at the local YMCA.  Giving his body the best treatment for those sore muscles while also helping him to limber up.  He'll also be receiving a bio mat treatment with therapy, similar to a simple heating pad but larger & it uses infrared technology to penetrate deeper into the tissue & muscles, it can also help with circulation issues.  Which he has, as his feet are also a deep red almost purple color & freezing cold.  He is looking forward to the new therapy to start & I am praying this makes a difference in his pain management.

The drive home from therapy. 
Thursday for me running errands in the morning, including running to the library to make copies of all the paperwork I needed to include in my application for Liam to be accepted into the Katie Beckett program.  Something I should have signed him up for after we arrived in Wisconsin, but sincerely seemed so overwhelming to me.  This Medicaid plan should help with quite a few of Liam's medical expenses that we have been taking care of ourselves, leaving us with very little money to enable our family to enjoy life.  An example, Liam had his peg tube/feeding tube/Mini-One button surgically placed 3.5 years ago.  The cost of JUST his formula, Boost Plus, is approximately $180 a month.  In some states, insurance, by law, is required to cover the cost of formula, Wisconsin is not included in that list.  So we have covered that ourselves.  Which means in 3.5 years, we've spent approximately, depending on what sales & deals I can find online, $7,560.00 on JUST formula.  You don't even want to know what all of his bills add up to monthly, or especially yearly.  So it was time, I enlisted help from the Special Needs department to help me navigate the world of Medicaid to help cover his costs.  Thank goodness for the amazing team of people at Children's of Wisconsin.  They have saved Liam's life & my sanity more times than I care to count.  I dread the day when he ages out of their program.

At least all the driving always gives me the best views of the beautiful countryside where we live...



Not to make it sound like this week didn't have its calm languid points, it did. Flynn made sure to stalk some birds outside the window & show them he has absolutely no control over their movements & no power over anything in his life, as he sadly watches from inside. LOL
Poor kitty.  It's hard being an inside cat. You get no respect from the outside animals.  
Kier was able to show off his pride in this country while he mowed the lawn, his new favorite shirt. :)


We were gifted with a day of mild, slow, lazy afternoon summer thunderstorms.  Made for idyllic meanderings bringing with them a lovely chilly afternoon.  A nice, needed break from the humid 90-degree temps of the previous week.  There is just something so relaxing about a good summer thunderstorm.  Perfect weather to grab a book & relax on a back porch w/ a long cool drink.  Or as I did in this case, grab a book & relax on my bed, but get side tracked by the storm & instead grab my phone & film the storm. ;)



Today life was more of the milder busy work, some cleaning, laundry, firefly catching, baking, McKenna is home & CA arrived home just after 10:30. While CA was in Texas he made sure to take time during his trip to Austin, after the conference was over, to drive over to Waco, TX & visit the Silos, featured heavily on the TV show Fixer Upper, a favorite of both of ours.  I was so jealous when he said he was going to make a little field trip there, but then he called from Waco, & when he said, "Holy tourist trap!" I wasn't as jealous nor was I surprised.  But I am glad he went.  He even came home with presents for us both.
What a great hubby!  #DemoDay shirt is his.  
The best part of his homecoming though, as it usually is, was the dogs reactions to his walking through the door after being away for a week.  Silly dogs!  We all officially know that when dad comes home we stay out of the way until the dogs get their hugs first.  It's just safer that way, plus then we get to videotape the fun reunion.


It feels so good to have our family under one roof again.  It was a busy week but it definitely had some really sweet moments, worthy of capture.  I wish you all firefly nights, summer thunderstorms, & magical dreams.  Kiss your family, hold them close & say prayers of thankfulness for their presence in your life.  As we do for each other & for our wonderful family & friends near & far away.  We love you all & miss you dearly.

Jess

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