Madison’s Story

Site created on May 12, 2021

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Amanda Edwards

Hello, all!  We have been in Titusville for almost a month now, barring one quick flight home for Maddie's friend's wedding.  So far, this place has been a perfect fit for her.  The community is called The Great Outdoors and is a blend of small homes, RVs, and large homes with RVs.  The preferred mode of transportation is golf carts, in which we zoom around the property looking at the eagles' nest with a baby eaglet, the ponds for our favorite gators, and the golf course for armadilloes and more gators.  Not to mention all the giant birds.  I've never seen so many birds...didn't even know I liked birds.  Animals are probably Maddie's favorite things in the whole world, so every day is an adventure to see what we can find.  Thankfully, she feels well enough to go out and look for them!

So far, Florida is doing what we had hoped for her health.  She is beginning to sleep better and wake up and get right out of bed.  Which is amazing.  I usually make her an egg and half a bagel for brunch and then she's ready to do something.  Dipping in the pool and doing her water exercises is something she's been able to do every day.  She's been riding the recumbent bike in the fitness center for about 8 minutes at a time.  I don't know if it's just the weather or that I'm feeding her good food or the supplements we've added to her regimen, but whatever it is, it's working!

Her mood is significantly improved being here, and being able to begin to function brings lots of hope.  We went to a SpaceX launch, a manatee observation deck, and the SPCA all in the same day.  Normally, after something like that, she'd be relegated to the couch for a day or two, but she continued to have energy and we are so, so thankful!

The pace of life is deliciously slow here and we are both realizing we fit right in to the retirement community mentality.  We are totally ready for dinner at 4:30, to be on the couch by 6 p.m., watch some shows, and go to bed.  What we don't love about the community is the speed limit.  15 mph.  Which is rigidly enforced, because "we have a real bad speeding problem here," says Bill, the community officer who gave me a speeding ticket for going 28mph...when I was fifteen feet away from the 35mph sign.  Bill was tough-- very unsympathetic when I tried to explain I was just excited about going to look at a dog.  Oh, Bill, you kill me.

Because everyone here has dogs (and we've seen one cat on leash too), we decided to foster a dog.  We picked him up today!  His name is Truth, and he's a 6-year-old big mutt.  His head is huge and I think his name should be Meathead.  Or Tootie.  He's pretty gassy.  Could be nerves.  Anyway, he is the gentlest, slowest, most loving dog I've ever met in my life.  He is currently trying to lie on Maddie's lap (he's 80 pounds) and sleep.  He snores.  Loudly.  He was also stinky, so we put him in the car, drove to Petco, and bought some shampoo.  We lured him into the shower using peanut butter and he just stood there while Maddie gave him a good scrub down.  Animals are her love language, and Truth is filling her love bucket like crazy.  He follows her around already.  Why isn't he already adopted, you ask?  Well, he has severe separation anxiety, so when you leave, he EATS THROUGH CAGES AND DOORS.  Apparently, people didn't like that.  But now he has an aluminum impact crate that comes  home with him, so Maddie and I are determined to get him adopted following our Please Choose Truth media blitz.

Maddie and I appreciate all the texts asking how she's doing - we feel the support!  Please continue to pray for improvement and for her appointment June 15 at the University of Toledo to see a Dysautonomia specialist.  She still has muscle pain, overall weakness, and low blood pressure, but overall, she's definitely improved.

Neither of us take for granted this epoch of time in which we get to spend every day together in our little bubble.  We love hanging out together and I am treasuring every moment spent alone with my girl!
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