This post is bittersweet. It is a hello and also a temporary goodbye. Elijah has had a handful of medical appointments in the past few weeks, which I'll do a quick update on..
Urology: We are cathing him daily in high hopes that he will NOT need an extensive reconstructive surgery. We're praying hard for the cathing to work. We will check back with Dr. R in August and go from there.
Developmental pediatrics: We have stretched E's current Strattera dosage out for a loooong time. Behavior has been gradually getting worse (the past few weeks have been pretty crazy), so we are upping the dose starting tomorrow. Pray with us for improved mood and behavior soon! Dr. M also suggested a re-visit to genetics to get a handle on the reason so many things have surfaced in the past few years.
Neurology: We will be scheduling an MRI for August to see if E's spinal cord has retethered.
Pulmonology: Severe croup continues to be an issue with Elijah, but it does get better with each passing year. Still, though, we need to have emergency croup meds on hand just in case. I ALWAYS love visiting Dr. K because he appreciates our sense of adventure and values us as people and that means so much. And of course, he takes amazing care of our oldest boy.
Now for the FUN! As of next Friday, our new residence will be THIS beauty! Our house SOLD, Dan lost his job and we are hitting the road!
We will say goodbye to our home on July 1st, when our RV ("The HQ"...named by the boys) will become HOME for us for a while! We are all super excited for this journey. Life has been stressful and so crazy leading up to this point. I cannot WAIT to be on the road with my beautiful boys. I apologize if I haven't explained the journey thoroughly here, but you can find details on Pip and Ebby!
See you back here late August! Till then, check in on social media or on Pip and Ebby!!
Showing posts with label road trip. Show all posts
Showing posts with label road trip. Show all posts
Thursday, June 23, 2016
Sunday, August 2, 2015
On Charlotte 2015
Our time in Charlotte with my dad and stepmom went by way too fast. It always happens that way, I suppose since we are in the good company of family. The second we pulled in their driveway, we felt right at home (as always). My stepmom had the perfect beds prepared for each of us. I got a bedroom ALL TO MYSELF....complete with comfy bed, pillows and a fan. And across the house from the boys. I slept great! All of us slept well!
The morning after we arrived, all of the boys dressed up as cows so they could get a free breakfast at Chick-Fil-A. I love this picture! :) Gramps is such a good sport. (By the way, we barely got Sammy in this outfit and out the door looking like this.)
The boys got to watch TWO movies in the theater while we were there. Inside Out for the first time (they loved this one soooo much and are still talking about it daily) and Minions for the second time. Check out these cozy recliner movie theater chairs!
We checked out a local museum one day. The boys had fun running around. Here they are doing "creepy bug faces."
Bath time! Washing off the sunscreen and sweat from the day!
Before we left, Sammy drew this picture for Juan and hung it by his bed in the living room. "So he will remember me!" :)
The boys did story time with Grammie and Gramps every night. A special end to every day!
We went to the Lazy 5 Ranch again this year and this time we drove through it in the car. We drove along the winding path through tons of wildlife, feeding them, talking to them, telling them to GET AWAY, squealing, but loving the entire adventure. We were told NOT to feed or pet the zebras, so Sammy dissed this guy right away.
I loved feeding a giraffe from the sunroof. He was by far the most gentle creature we encountered during the entire adventure. He accepted the food gingerly, almost with gratitude. We all loved him!
Elijah and Grammie, playing on the ship at Lazy 5!
We made it to their community pool 3 or 4 times. The boys had a blast! They loved their swim noodles and time in the water. Sammy began "swimming" (with the help of his floatie and a noodle under his armpits) across the entire pool by himself...kicking, paddling with his hands and all! I was so proud of my boy! He is becoming more adventurous all the time!
When we went to the park by their house, instead of playing on the swing or slides, Sammy started picking up garbage. I asked what he was doing and he said, "I HAVE to clean up this litter! Is there a recycling bin around here?" That's my organized, thoughtful Sammy. As we got in the car to leave, he saw a stray piece of garbage he had missed and felt terrible about leaving it behind.
I love making memories with my precious boys and my parents. This summer's trip was so much fun. We get to see Grammie and Gramps again this coming weekend in Iowa and we are all excited for it. Dan and I constantly express gratitude about our boys have such loving grandparents. Thank you, DAD and PAULA for being so kind, gracious and selfless! We love you guys and love that you let us invade your home without a single complaint.
We drove back to Louisville for a QUICK night after our time in Charlotte, and drove the rest of the way home the following day. It was a long one! The last few hours were rough, involving potty in pants, a smelly car, a VERY windy car ride, VERY loud and excited-to-be-home boys and a VERY crabby mama. I literally pulled into our driveway, got out of the car (without closing the door) and ran inside to ask Dan for HELP. An hour later we were all feeling much better (and sleeping).
This coming week is a busy one for us. Hoping you are doing well and thank you for peeking in!
Wednesday, July 29, 2015
On Louisville 2015
This was our third summer in a row visiting one of our favorite families in Louisville, KY. The boys honestly had the BEST behavior in the car on that leg of our journey. I did not have a single issue with either of them for the entire 11.5 hours. Amazing!
Sarah is always so good at making us feel super comfortable and she also takes us out to see places around the city. Just like the past few times, we had the perfect balance of relaxing and going on adventures. I had been super excited to eat at Tom + Chee (a grilled cheese sandwich restaurant that started in Louisville), so we made it there one of our first days. Their sandwiches are DELICIOUS!
We spent some time hanging out at Evan's house, playing Nerf battles in the basement (the boys' favorite thing to do), swinging in the backyard, watching PAW Patrol and riding scooters.
Sammy and I were having a snuggly moment alone on the couch and he asked me to make a creepy face. :)
On a rainy day, we headed to the science museum. It was AWESOME! The boys were in heaven. We saw a super cute movie in the IMAX theater and then explored the rest of the museum. This giant bubble maker was fun!
Sammy got some snuggle time with Sarah! So cute.
We made it back to a park the boys had enjoyed last year. Elijah was on top of the world.. er, a pyramid..
Before the park we took a 6-person bike ride on trails along the river. Eric was able to join us for this! He had been working the majority of the time we were there, so we were all excited to spend some time with him. The bike ride was an adventure! It was a lot of work, but so much fun (thank you, Eric, for doing most of the work)!
We squeezed in the Minions movie and we all thought it was adorable!
Here are all the boys! I love this picture. Maybe one of these years Dan's face will be included.. I'd love that!
Our time in Louisville was perfect. We can't wait till next year!
Tuesday, July 7, 2015
Medication roller coaster and impending road trip!
The past week has been an interesting one. Elijah went from really struggling to being his super-sweet and kind little self (thank you, meds) and gradually back to struggling yesterday and today. As Dr. M suggested, we increased the dosage of meds today.
In standard fashion, we're living on the edge here in the Porta family...testing the waters with medication before and during a big vacation. The little boys and I leave for Kentucky bright and early tomorrow morning. Sammy was especially excited today and kept asking why we can't leave for our road trip NOW?!
We decided to keep both boys up for fireworks this year. It's always a debate. Keeping Elijah up that late usually sets him back for a solid week. After only getting 5-6 hours of sleep Saturday night, he was very tired on Sunday but held himself together SO well, considering. It was kind of incredible, actually! It was fun to experience our first true 4th of July fireworks together as a family, but Elijah didn't even seem to enjoy it very much. The noise made him super anxious and he asked during the entire show when we could leave. The boys DID love the color wands that Grandma bought for them! Lucky boys.
The medication we have been giving to Elijah, for those who are curious, is Strattera (atomoxetine). Typically it is given to help with ADD/ADHD, but it can also help with anxiety. A few days into giving it to Elijah, I realized that I had not officially cleared it with Dr. G (cardiologist). He knows E's heart function better than anyone, so I always like to hear straight from him that any med is going to be ok for his heart. It took him a while to get back, so in the meantime I very stupidly googled "straterra and children with congenital heart disease." Please don't google that! UGH! I hate google sometimes and this is the reason I haven't done that since Elijah was a baby. The things I read were horrifying! We called Dr. G again to confirm whether or not we should continue this med. Everything is good. NO more googling medical concerns. EVER. Again. Find trusted doctors and TRUST THEM, people!
I don't know if today's dosage increase will be a good or bad thing, but we will find out...on the road...in the next day or so. Please pray with us that it is good! I want my boys to always feel peaceful and happy and rested.
We will be on the road for 10-11 hours tomorrow and we'll spend 4 full days with our favorite heart family who lives in Louisville. We LOVE the Karrs and look forward to spending time with them every summer. Then we'll drive onto Charlotte where we will spend a full week with my dad and stepmom. Eeeeek! Super excited! PLEASE, if it is on your heart, pray for Elijah's meds to work and for our trip to go smoothly. THANK YOU!
Labels:
4th of July,
anxiety,
behavior,
medication,
photos,
road trip,
vacation
Thursday, June 19, 2014
Summer road trip 2014!
Uhmm, hi! :) I've been sitting here for a while without the proper words to begin this post. I guess I'll start by saying that we're back! The little boys and I had quite the adventure. We traveled 2,800 miles, we visited 7 states and we were away for 13 days. We received MUCH love from friends and family and made many memories that we will never forget.
I'm not sorry that we took the trip but if I had known the extent of the struggles Elijah would have endured on this journey beforehand, I may not have left our cozy home. He struggled. He REALLY struggled. There are many moments I would rather not remember. My amazing heart mama friend Sarah and I discussed Elijah's behavior at length, and because of those conversations (and, of course, the ones over the phone with my amazing hubby...and the ones after-bedtime with my stepmom) I feel like we have deeper insight into our boy. We are still so much in the learning phases, but we know that there are a few main factors at play:
- Sleep We are controlling sleep as much as possible right now by reverting to what we've always done and putting E to bed EARLY. Thankfully, all parties on our trip were completely understanding about this and I was able to get Elijah to sleep at an ideal bedtime every single night while we were away.
- Stupid sleep meds Dan and I feel that the recent dosage increase of E's sleep meds have been counter-productive. We think the latest dose caught up to him while we were in Kentucky, causing him to behave in ways I've NEVER seen. I contacted his sleep doctor and she agreed that we should immediately begin weaning him off the meds. Not only was the higher dose bad for him, but the weaning process has been a big change for his body on top of it. I cannot WAIT to get these stupid meds out of his body.
- NLD I finished my NLD book while on vacation and Dan has been reading it, too. We feel like this is such a huge part of why Elijah has so many struggles, especially while away from home and in visually "chaotic" and/or new environments. It gives us so much compassion for him and makes us realize how difficult it must be for him to exist in visually busy and also unpredictable places. There is so much to report about what we've learned about this. New environments are SO scary for Elijah, so testing the waters with Dan/me may be his way of testing his safety/security. Perhaps his acting out could BE his security because he knows what to expect from us (even though it's a negative response) in an otherwise unpredictable setting.
There will be more to come about our trip in the next few days! I have fun photos and stories to share. We had a great time overall and we are so grateful for the friends and family members who totally took care of us on our journey. We drove 12 solid hours today (730 miles) and we were EXCITED to be home at the end of the day. Hugging Daddy/Dan felt amazing!
Thanks for checking in! Here are a few pics from our journey. I'll post Lazy 5 Ranch (zoo) pics tomorrow (I have a lot to share).
(Our heart friend Evan took this photo of the boys and me and it is one of the best pics EVER taken of the three of us!)
I'm not sorry that we took the trip but if I had known the extent of the struggles Elijah would have endured on this journey beforehand, I may not have left our cozy home. He struggled. He REALLY struggled. There are many moments I would rather not remember. My amazing heart mama friend Sarah and I discussed Elijah's behavior at length, and because of those conversations (and, of course, the ones over the phone with my amazing hubby...and the ones after-bedtime with my stepmom) I feel like we have deeper insight into our boy. We are still so much in the learning phases, but we know that there are a few main factors at play:
- Sleep We are controlling sleep as much as possible right now by reverting to what we've always done and putting E to bed EARLY. Thankfully, all parties on our trip were completely understanding about this and I was able to get Elijah to sleep at an ideal bedtime every single night while we were away.
- Stupid sleep meds Dan and I feel that the recent dosage increase of E's sleep meds have been counter-productive. We think the latest dose caught up to him while we were in Kentucky, causing him to behave in ways I've NEVER seen. I contacted his sleep doctor and she agreed that we should immediately begin weaning him off the meds. Not only was the higher dose bad for him, but the weaning process has been a big change for his body on top of it. I cannot WAIT to get these stupid meds out of his body.
- NLD I finished my NLD book while on vacation and Dan has been reading it, too. We feel like this is such a huge part of why Elijah has so many struggles, especially while away from home and in visually "chaotic" and/or new environments. It gives us so much compassion for him and makes us realize how difficult it must be for him to exist in visually busy and also unpredictable places. There is so much to report about what we've learned about this. New environments are SO scary for Elijah, so testing the waters with Dan/me may be his way of testing his safety/security. Perhaps his acting out could BE his security because he knows what to expect from us (even though it's a negative response) in an otherwise unpredictable setting.
There will be more to come about our trip in the next few days! I have fun photos and stories to share. We had a great time overall and we are so grateful for the friends and family members who totally took care of us on our journey. We drove 12 solid hours today (730 miles) and we were EXCITED to be home at the end of the day. Hugging Daddy/Dan felt amazing!
Thanks for checking in! Here are a few pics from our journey. I'll post Lazy 5 Ranch (zoo) pics tomorrow (I have a lot to share).
Checking out some trails with heart friend Evan!
My boys love their Evan so much!
"GET UNCLE JOEL!!"
Story time with Grammie and Gramps.
Both boys LOVED their pool time at Grammie and Gramps' house!
Thursday, April 3, 2014
On the road with heart -- part 3
I FINALLY got the rest of our road trip down from last summer. Better late than never, right?
Read about the first part of our trip here!
Read about the second part of our trip here!
STOP 9 – Birmingham, Alabama
Read about the first part of our trip here!
Read about the second part of our trip here!
STOP 9 – Birmingham, Alabama
STATES DRIVEN THROUGH: Minnesota, Wisconsin, Illinois,
Indiana, Ohio, West Virginia, Kentucky,
Tennessee, Alabama (9 total)
MILES FROM PREVIOUS STOP: 219
TOTAL MILES DRIVEN: 1,804.8
PEOPLE VISITED: Bilal (HEART KID #8), Mina, Zakir, Safa,
Hamza
We arrived in Birmingham in the late afternoon and pulled up
to Mina and Zakir’s home and literally as I went to put the car in park, I
heard a loud WHOOSH coming from under the hood. Then smoke began billowing out.
I got the boys out of the car, and we all stood on their lawn staring at the sad
scene. Mina came out to greet us, and the first thing I said to her was
something like, “I think my car just exploded. Nice to meet you!”
I don’t think I need to explain the timeliness of this
incident. This was one of the many times that I knew God’s hand was literally directly
on all of us during the trip. If my car was going to “explode,” there could not
have been a better place and time for it to happen.
Mina kindly contacted a trusted and nearby mechanic the following
morning who was able to squeeze me in. Thankfully and ironically, I had planned
for us to spend that entire day in Birmingham so our schedule was not set back
at all. My car needed a new radiator, which was unexpected but easily
accomplished and at a reasonable rate. Phew!
After we arrived, and after the “explosion,” I watched the
boys play with Bilal and his neighbor friend for a while outside. This was the
first point in the trip when I was finding it difficult to be “on.” Being in a
situation where so many different people are involved, tackling any social
situation (big groups, small groups, one on one, interacting with big kids and
little kids, etc) was necessary. And up until this point, I felt like I had
done a good job. I am a true introvert. I love
being around people and interacting and socializing, but it is very draining for me. After ten days of being
at the top of my social game, I was socially exhausted. I stood in the driveway
watching the boys run around and I wondered if I could keep it up. I think I
managed to pull it off, but retreated to bed early that night and socially, emotionally and physically crashed.
Mina and I had met through our blogs a few years previously.
I had fallen in love with her family on my computer screen, but when I met them
in person I was even more in love. They are such a sweet, close
family. All three kids are exceptionally smart, personable and kind. I was very
impressed with their family bond and their kindness toward one another and
others. I tucked a few of Mina’s parenting tidbits away for when we get to the
teenage years.
The following day we went to the Birmingham Zoo, which was a
really fun place. We were able to get right up next to the giraffes and feed
them leaves. We threw apples to the elephants so they could have a snack. We
watched a bird show and we walked through the dinosaur exhibit. We even took a
train ride through the zoo. It was a hot day, but everyone seemed to handle it
well. Mina and her crew were especially tough since they were fasting for
Ramadan. The boys also rode on the carousel a
handful of times.
On the way home from the zoo, Mina sneakily ran into a CVS
to purchase an ice-cold sweet tea for me. I had told her earlier that I was not
familiar with the popular southern beverage. It was extremely kind and
thoughtful of her to think to do that for me. It was delicious, by the way,
especially after a hot day at the zoo. I guzzled it down in sixty seconds.
That evening the boys were all finally warming up to one
another and playing more easily together. This is the night that will go down
in history as the night Elijah learned to pump his legs and swing all by himself! We cheered him on
for quite a while. I was a proud mama! Mina and I had a few moments in
the evening to get to know each other better. She is an incredible mother and
woman and I am happy to call her a friend.
During the hours that their family was able to eat, they
made some things I had never tried before. I didn’t want to steal too much of
their food since they had waited for it all day, but I did want to give
everything a try. I will never forget Mina’s Rainbow Rice and also her Shrimp
Curry. I should also mention that the boys and I never went hungry while we
were there. Mina kindly fixed us food throughout the day, even despite her
own fasting. Elijah and Sammy loved her milk shakes!
That evening we picked up my car with the sparkly new
radiator and we went to bed reasonably early again. We were up and out the door
early in the morning, as we were anticipating our longest stretch of road yet.
The car ran on the cold side for the entire trip, which gave me relief. The boys did great in the car, minus one bit of vomit drama.
Elijah has a history of getting car sick, so I was prepared to hand back one of
the “puke bags” that we had accumulated from hospital visits over the years and
that I had within reaching distance in the front seat.
Almost immediately after crossing the border into
Mississippi, Elijah told me that his tummy was feeling funny. I whipped the
puke bag back to him with lightning speed, and thankfully it all went in the
right place. Then he handed the bag back to me. I had not yet in my lifetime
had the experience of driving while trying not to spill a bag filled with
vomit. I took the next possible exit and pulled onto a frontage road. As I was
emptying the bag out on the side of the road, I saw a person quickly
approaching me from the corner of my eye. Then the yelling began. “WHAT ARE YOU
POURING ONTO MY LAND?!” I looked up to see an angry toothless man running
toward me. I quickly rinsed the bag out with a bottle of water and hopped back in
the car. I yelled out the window, “Just a little vomit, sir. Sorry!” And we
were on our way. Thankfully, that was Elijah’s only bout of carsickness for that
leg of the trip. He was saving it all up for a later leg that will forever go
down in history.
Stretching our legs at a gas station somewhere in Mississippi
We made it through Mississippi and into Louisiana without
further incident. Toward the end of the drive I was really ready to get out of
the car. Central Louisiana was unique and interesting. Every little town we
drove through made me feel like we were in another world.
STOP 10 – Marksville, Louisiana
STATES DRIVEN THROUGH: Minnesota, Wisconsin, Illinois,
Indiana, Ohio, West Virginia, Kentucky, Tennessee, Alabama, Mississippi, Louisiana (11
total)
MILES FROM PREVIOUS STOP: 463.1
TOTAL MILES DRIVEN: 2,267.9
PEOPLE VISITED: Logan (HEART KID #9), Kayla, Josh, Isaac,
Kayla’s parents and aunt, Josh’s parents
We arrived at the beautiful home of Kayla and Josh in the
late afternoon. Kayla oozes with southern kindness and has just the cutest
accent I have ever heard in my entire life. We instantly felt comfortable in
their home. Logan scooped Elijah right up and escorted him to his very fun
bedroom. He loved showing my boys his Teenage Mutant Ninja Turtle toys. The
boys also compared their Despicable Me toys that had been accumulated from
McDonald’s over the previous weeks.
Elijah spotted their swimming pool in the back yard and of
course was very eager to swim. We changed into our swimsuits quickly so we
could get in the pool before dinner. I did not have the frame of mind to do
swim prepping with Elijah. Maybe since the last few times had gone so well, I
wasn’t quite on my toes. We got into the pool and watched Logan swim around like a fish. Elijah was the happiest kid on the planet in that given moment and
that is NO exaggeration. Sammy got his feet wet on the steps right away, which
was impressive for him.
Ten minutes after getting in the pool, we spotted lightning
in the distance. Oh no. I knew right away that bad things would follow, and not in the sky. I tried to
calmly explain to Elijah that we needed to get out of the pool for safety reasons. I may as
well have started speaking another language. Anything I said did not matter. 0%
mattering. He was sad, disappointed, exhausted and not equipped to deal with a transition
from fun total happiness to complete and utter disappointment. He lashed out at me with every trick he could think of. It was an awful ten minutes that I will
sadly never forget. I understood his level of disappointment, but I could not
wrap my head around the intensity of the behavior that was coming from my sweet boy. I was way past the point of being embarrassed. I was deeply troubled,
and I still feel troubled about that ten-minute span of time, months after the fact.
Once things calmed down, we went out back to see their new
puppy. We also got a peek at the teeny tiny newborn puppies. Sammy especially
thought they were adorable.
The boys got a fun ride on the four-wheeler with Josh, Logan, Isaac (Logan’s super cute little bro) and Kayla.
After playing on the swing set for a bit, we headed inside for dinner. By this time, Josh’s parents and Kayla’s parents, along with Kayla’s aunt, had arrived. Kayla’s dad had made a couple of his signature Louisiana-style dishes, and I was incredibly thankful for his efforts. On top of being thankful, I also had a very happy tummy. That was the best Jambalaya I have ever eaten, hands down. There were three types of meat in it and it had just the perfect amount of zing. Then there were the rolls. Those rolls were the softest rolls my lips have ever touched. I put plates together for both Sammy and Elijah knowing for certain the only thing they would eat would be the rolls. I was right. Elijah ate five of them and Sammy ate three. They were served with maple syrup for dipping and oh my goodness did my boys enjoy them!
Kayla and Josh’s parents were incredibly welcoming and kind. I am so happy that they were there and that we had the opportunity to visit with them. They are an incredible family and Logan is one amazing kiddo.
I got the boys in bed as quickly after dinner as I could. I
was not thinking clearly when I decided to put Elijah to sleep in the bed that
I would also be sleeping in. Looking back, that was definitely one of the more
poignant what-in-the-world-was-I-thinking moments. After chatting with Kayla
and Josh for a bit, I headed to bed myself.
It didn’t take long before realizing that this was not a
good situation. At every other place we had slept previously, I had taken the
time to set up Elijah’s sleep tent well before bedtime. Elijah is an early
bird. Not even just an early bird, but a super early bird. Since the day he was
born, he has slept past 6:30 only a handful of times. It does not matter what
time he goes to bed at night. He is always up before the birds. This was one of my
main concerns about the trip well before it happened. Add being in new, fun
places to his early-birdness and you have some ridiculously early mornings. There were
mornings on this journey when he was literally ready to start his day at 3:00.
No joke. The sleep tent did help, I think. It blocked out some stimulation
and kept him contained in the early morning hours when any little thing was a
cue to wake up for the day.
I was so tired that night in Louisiana and there was no way
on the planet I was going to get out of bed to put his tent together. Instead,
I found my way to the living room and found two soft blankets. I stumbled back to
the bedroom and situated myself on the floor next to the bed. It was not the
best night of sleep, but it was better than getting steam-rolled all through
the night. As usual, Elijah was up bright and early, ready to start his day. I
handed him the iPad and told him to turn it down (a trick that saved me many
times).

Kayla made the boys breakfast, and afterward we headed to Alexandria, Louisiana, where Josh works as a firefighter. He kindly gave us a tour of his fire station and he even gave the boys rides in a real fire truck! Both boys were excited to watch the water spray from the truck onto the pavement in front of us.
Kayla made the boys breakfast, and afterward we headed to Alexandria, Louisiana, where Josh works as a firefighter. He kindly gave us a tour of his fire station and he even gave the boys rides in a real fire truck! Both boys were excited to watch the water spray from the truck onto the pavement in front of us.
We had time to eat a quick lunch with Kayla, Logan and Isaac
before making our way to Dallas. Kayla was so thoughtful, wanting us to get a
good meal in our bellies before getting back on the road. There was a Cracker
Barrel just down the road from the fire station, so we decided to go there. Based
on the night of sleep we had just gotten, I had a gut feeling that a sit-down
meal was not going to be good. Eh, it’ll be fine. We’ve survived this long,
right?!
Even before we got seated, things were starting to unravel
with my tired boys. I sensed a storm ahead. Kayla and I did our best to chat across
the table while taming the monkeys. Our food arrived and I remember seeing and
hearing blurs of awful behavior coming from both of my boys. Honestly, I didn’t
blame them. I felt like screaming my tired head off, too. At one point Elijah
was running around the table in circles and Sammy was standing in a corner
screaming at the top of his lungs. We had hardly touched any of our food, but I
knew we needed to leave.
This was the tiredest part of our trip, collectively. We.
Were. Tired. Sleep tired and also tired to the core. I felt an explosion
brewing inside of me as we left the restaurant and gave goodbye hugs to Kayla
and her sweet boys.
I loaded the boys into the car, got in myself and had a
freak-out session about the behavior in the restaurant. Even though I did not
blame them one bit, I felt I was possibly teetering on the brink of sanity. Hence, the
freak-out. Then, immediately, I felt horrible. I laid my head on the steering
wheel and cried like a baby. “Mommy, don’t be sad!” came from the back seat.
After a few minutes of this, I wiped up my tears and scooted onto the
interstate. Literally 60 seconds later, both boys were sound asleep. They were
tired.
We were traveling on interstate for that stretch, thankfully, so the steady hum of the road helped the boys sleep for a few solid hours. That gave me plenty of time to beat myself up about the way I had yelled at them back in Louisiana. Ugh. When they woke up, we were ready for a break. This was the first time on the trip that caffeine was suddenly an absolute necessity. I am not a coffee drinker, but I do indulge in the occasional Red Bull when times get tough. I quickly guzzled down a big ol’ RB and we were on our way to Dallas!
We were traveling on interstate for that stretch, thankfully, so the steady hum of the road helped the boys sleep for a few solid hours. That gave me plenty of time to beat myself up about the way I had yelled at them back in Louisiana. Ugh. When they woke up, we were ready for a break. This was the first time on the trip that caffeine was suddenly an absolute necessity. I am not a coffee drinker, but I do indulge in the occasional Red Bull when times get tough. I quickly guzzled down a big ol’ RB and we were on our way to Dallas!
The rest of that stretch was uneventful until we entered
Dallas. Suddenly there was a torrential downpour in heavy traffic.
The roads became saturated so quickly that I began to worry they would flood
and that we would have nowhere to go. I was legitimately afraid for about a
solid hour as we made our way to tour next stop. We were really really
excited to get to the Cooper house.
About ten miles away from their home, I noticed the Nevada license plate in front of us. I handed Elijah our license plate
game and told him to check Nevada off the list. Then, wait! Is that… Is that
the Rollers?! We had planned to arrive in Dallas the same day as the Roller
family, but I had never expected to be literally directly behind them on the
way there. What are the chances?
The Rollers are one of my absolute favorite heart families. We had met in person prior to this trip on a few separate
occasions. They are an incredible family and they have endured so very much.
Kathy and her boys are a constant inspiration to me. I sincerely love this family.
STOP 11 – Keller, Texas
STATES DRIVEN THROUGH: Minnesota, Wisconsin, Illinois,
Indiana, Ohio, West Virginia, Kentucky, Tennessee,
Alabama, Mississippi, Louisiana, Texas (12
total)
MILES FROM PREVIOUS STOP: 377
TOTAL MILES DRIVEN: 2,644
PEOPLE VISITED: Grace (HEART KID #10), Jennifer, Craig,
Bennett, Maggie, Jennifer’s father and stepmother and mother and stepfather,
Isaac (HEART KID #11), Kathy, Chris, Eli
We were so happy to arrive at Jennifer’s house! We hopped out of the car and shared giant, loving hugs. I had been wanting to meet Jennifer and her precious family for a very long time. This trip to her house was long overdue. The Rollers arrived at the same time, and many hugs were swapped. I had personally thought of Jennifer’s home as a safe haven all along the way (like Sarah’s back in Kentucky), so I was happy to be there and also happy to have four days in a single place.
We were so happy to arrive at Jennifer’s house! We hopped out of the car and shared giant, loving hugs. I had been wanting to meet Jennifer and her precious family for a very long time. This trip to her house was long overdue. The Rollers arrived at the same time, and many hugs were swapped. I had personally thought of Jennifer’s home as a safe haven all along the way (like Sarah’s back in Kentucky), so I was happy to be there and also happy to have four days in a single place.
That first night the Coopers grilled us burgers and we did a
lot of chatting. I cannot explain how good it felt to watch our kids play
together. Grace and Isaac have both been through so much medically, and I have
prayed about them both countless times over the years.
I was reminded how much sweet Isaac loves his Yo Gabba
Gabba. Every time a show would end, we would hear the cutest little, “OH-NOOO!”
and he would search the room for another device and seek out help getting Gabba turned back on. Isaac is the biggest cuddle-bug, and I took every chance I could to
snuggle with him. I seriously love that boy and his amazing mama.
Jennifer and Craig have a beautiful home and had plenty of
space for all of us. Every inch of their home was straight out of a magazine.
The décor and colors and literally everything was absolutely perfect and cute.
The boys and I had a cute and comfortable room all to ourselves. We got
situated and went to bed fairly early that first night.
One of the parts of their home that Elijah noticed
immediately the night before was the pool in their back yard. The next morning
he was itching to get his little body in the water. I had offered to take
family photos for the Coopers as a small token of thanks for housing and
feeding and loving us. That next morning we braved the heat and went to a
beautiful park and got some photos taken. It was fun to have the one-on-one
time with them at that point. Even though it felt like I’d met Jennifer a
million times before, it felt amazing to see her and her family in the flesh.
Elijah stayed back at the house with Kathy, but Sammy tagged along with us to
the park since that made him the most comfortable.
When we left the park, we were sweaty messes. We stopped at
Sonic and got the kids slushies for their efforts. By the way, the Cooper
children are the perfect subjects for photos. All smiles all the time and
totally cute and cooperative. I did not have many throw-aways from this session.
Elijah was bursting with excitement to get in the pool when
we got back. So that is just what we did. We had plenty of talks about getting
out with a good attitude when it was time to do so. He and I swam around a bit
and then the lucky boy got one-on-one time with his own personal real-life swim
teacher, Jennifer. She worked with him quite a bit over the course of the
following days. When she first got her hands on him, he would not put his face
in the water and he absolutely would not allow her to let go of him, even
though he was wearing a floatie. By the end, he was willingly getting his face
wet (this is so huge for him) and he would kick around the pool all by himself
with a floatie on.
He loved his swim-time with Kathy, too!
Sammy saw the fuss we made over Elijah and felt a little bit
left out, I think. By day 2 or so, Jennifer gave him a little hands-on time, as
well, and even he was doing his own kicks! He was so proud. “Mommy, watch me!”
..kick kick kick.. “Jennifer, watch me!” ..kick kick kick.. So cute.
It was during one of Elijah and Jennifer’s swim sessions
when he started his little silly routine with her. They were calling each other
silly names back and forth. The best one of all and the one that made us laugh
the most was when he named her Shark Nostrils. We still refer to her as such!
After a bout of swimming one day, Elijah and Grace crashed in Jennifer's bed together. It was precious heart friend quiet time.
PEOPLE VISITED: Jakey (HEART KID #12), Cindy, Steph, Darryl
On Sunday evening, Jennifer’s father came over with his meat
smoker and made us the most delicious smoked ribs and chicken. It was such an
incredibly thoughtful gesture on his part and I was extremely thankful for his
generosity, as smoking that much meat did not appear to be a quick or easy
task. Jennifer’s mother came over, as well, bringing delicious food along with her.
Our tummies were very happy that night! It was a great privilege to be able to
chat with her parents and to understand more about who Jennifer is as a person.
The most exciting new people that we met that night were
heart friend Jake and his family. I had been following Jake’s story through his
mom Cindy’s Caringbridge site for a few years. They are just the sweetest
family and it was so exciting to finally meet them all in person. Steph is
Jake’s sister and I was so glad to meet her, too, since I had seen so many
photos of her beauty over the years. I couldn’t get over how tall and beautiful
she was! Cindy’s husband, Darryl, was so kind. He got a kick out of Sammy’s infatuation
with the water dispenser on the Coopers’ fridge (this was something he became
obsessed with at every stop). Sam would fill up a cup of water, take a sip and
then pour the rest in the sink and say, “That water was old. I need some fresh
stuff!” and repeat the process over and over. And over. And over.
The four days at the Cooper house were totally relaxing and perfect.
A lot of it runs together in my head because it was a lot of the same – getting
to know each other, watching the kids play and swimming.
One thing that stands out in my mind was our trip to the
movie theater one hot afternoon (they were all hot). The kids had all been
looking forward to seeing Despicable Me 2. We filled up a row in the theater
and let the kids munch on popcorn while we all laughed at the evil purple
minions. To this day, that is one of my boys' all-time favorite movies.
PEOPLE VISITED: Samantha (HEART KID #14’s MAMA)
I knew I also wanted to squeeze in a visit with another heart friend who lived in the Dallas area, Micah. His mama, Samantha, and I had made a connection years ago and she was a major reason why I survived Elijah’s second open heart surgery. She was an amazing support for me during that time and I will never forget that. Samantha met Elijah, Sammy and I for lunch one of the days we were in Dallas and I was so happy this worked out. I was sad that her heart kiddo, Micah, was not able to join us, but we appreciated her effort to get together with us.
The next best thing to meeting Micah was posing with his cute pic!
PEOPLE VISITED: Harrison (HEART KID #13), Tiffany, William
Another heart mom that I had connected with years prior
through my blog was Tiffany. She and her family had lived in Minnesota when
heart friend Harrison was a baby, but currently they live in Fort Worth, which is only a
short drive from the Coopers. I thought it would be fun to introduce Tiffany
and her boys to the gang, as they had never met before. Jennifer graciously
offered to host them at her house, so they donned their swim gear and came on
over one afternoon.
Harrison and Elijah have something pretty cool in common.
Both boys have been operated on by the awesome Dr. M. Tiffany has been such
a great support for me over the years, so it was really cool to finally meet her.
Her boys fit right in and splashed around in the Cooper pool and played video games with the rest of the kids. Harrison is one tough little guy. He has endured much and has such a sweet spirit.
Her boys fit right in and splashed around in the Cooper pool and played video games with the rest of the kids. Harrison is one tough little guy. He has endured much and has such a sweet spirit.
Holding a gun while wearing pink, dangly earrings! Of course!
The Tuesday we were in Dallas was my 38th
birthday, and my heart mama friends were so good to me that night. Jennifer had
a fun evening planned for us, so I put Sammy to bed early (he would have
freaked out seeing me leave) and had Elijah ready in his jammies. Cindy, Steph, Jennifer, Kathy
and I started our night with
pedicures! It was wonderful! Kathy and I were able to do some chatting while
our toenails were prettied. While our toenails were being painted, the lady doing
my pedicure said, “Would you like flower?!” I said, “Sure! Fun!” Who wouldn’t
want a flower painted on their big toe, right? Kathy and Jennifer opted for the
big toe flower, as well. They all turned out super cute. As Jennifer was paying
the bill, the lady said to her, “Figh-dolluh extra for each flowuh!” Oh jeez,
they didn’t tell us that. We joked for a long time about those figh-dolluh
flowuhs. Which, by the way, stayed perfectly painted on my toes for THREE
MONTHS. I’d say that was five dollars well spent!
After pedicures, we went out for seriously yummy Mexican food. I can’t even tell you what I ordered, but I remember that my
tummy was very happy. I also ordered two beverages that aided in the happiness.
I don’t remember what those were called either, but they sure were delicious!
When we got back to the Cooper house, my boys were soundly
sleeping, as I expected them to be. I packed up our things because we would be heading out in the morning. It was sad, but it was time to head back toward home.
The stretch from Dallas to Omaha was our longest stretch of
the entire journey and I had not been looking forward to this part. I was able to get
the car packed up early and the boys loaded in their car seats with all kinds
of books and activities surrounding them. It was very sad saying good-bye to our
friends. I wanted to pack up the Coopers and the Rollers and take them all home
with us. The winters in Minnesota aren’t that
bad! Ha!
The drive out of Dallas was a sad one. The sadness was
reflected by the weather, which was rainy and stormy. About an hour outside of
Dallas I saw a black wall of clouds ahead and I started to get nervous. I called
Dan and asked him to look at the radar. He told me we were driving directly
into a very large storm. It was scary for a while and I considered pulling over
and waiting for it to pass. But then I thought about the drive time we would lose. I
knew we had somewhere around a 10- or 11-hour drive that day, so stopping unless
absolutely necessary was not on my agenda.
We rode through the storm on the interstate and all was
well. I was happy to get through it. I also found it strange that the only rain
we encountered while driving on the entire trip was while going into Dallas and going out of Dallas.
The first nine hours of that leg were uneventful. I had the
thought many times that it was a piece of cake. HAHAHA, said an inner voice!
Elijah informed me that he needed to throw up right after the 9-hour mark. I
handed a bag back, and he got everything in the right place. Everything did not
get to the right place the second time, 30 minutes later. He had just eaten a
few pieces of licorice, so guess what color the goop was that I cleaned out of his
car seat buckles on the side of a road somewhere in Kansas.
Repeat that process a few more times. I have never in my
life been so anxious to get somewhere. Every mile seemed to last ten minutes. I desperately looked at the clock every few seconds. I
wanted to burst out of my skin. I wanted to be in Omaha NOW. Elijah ended up
vomiting a total of seven times on that leg. I felt so awful for him and his
very empty tummy, but the only thing I could do to help was get to our
destination.
STOP 12 – Omaha, Nebraska
STATES DRIVEN THROUGH: Minnesota, Wisconsin, Illinois,
Indiana, Ohio, West Virginia, Kentucky, Tennessee,
Alabama, Mississippi, Louisiana, Texas,
Oklahoma, Kansas, Nebraska (15 total)
MILES FROM PREVIOUS STOP: 729
TOTAL MILES DRIVEN: 3,364
PEOPLE VISITED: Cathy, Jayne, Chloe, Cate, Susan
We arrived at my aunt’s house in the evening and we were
greeted by smiling, cute family members and
a hot dinner. I was a unique and new level of exhausted that evening. The boys were
off-the-charts tired, as well, so I tucked them into bed reasonably early. My
aunt and I stayed up for a bit and chilled in front of the television before I
headed to bed myself.
The next morning I packed our things into the car and we headed across the street with my aunt to walk around a pretty park. The boys were happy to stretch their legs and see the pretty waterfall and walk through a “spooky forest.”
The next morning I packed our things into the car and we headed across the street with my aunt to walk around a pretty park. The boys were happy to stretch their legs and see the pretty waterfall and walk through a “spooky forest.”
Afterward, we met my cousin and her two cuties, Chloe and
Cate, for some park play-time followed by a matinee (Rio).
Back when I lived in Omaha I had worked with a great group
of people, some of whom I still stay in contact with. I hadn’t made plans to
meet my pal Susan before setting out on this trip, but before we headed into
the movie theater that day, I called her at work on a whim. Thankfully she answered and
I was so happy that she had time to say hello and goodbye on our way out of
town. We visited her at work and she kindly bought us lunch in the café. We got
to see her office and it was just really nice to hug her. It had been many
years since we last saw each other and she is such a warm, kind friend. We left
her feeling refreshed and positive about the last leg of our journey.
STOP 13 – Johnston, Iowa
STATES DRIVEN THROUGH: Minnesota, Wisconsin, Illinois,
Indiana, Ohio, West Virginia, Kentucky, Tennessee,
Alabama, Mississippi, Louisiana, Texas, Oklahoma, Kansas, Nebraska, Iowa (16 total)
MILES FROM PREVIOUS STOP: 160
TOTAL MILES DRIVEN: 3,524
PEOPLE VISITED: Deb, Chad, Ellery, Audrey
Our two-hour trip to Des Moines was a breeze. Compared to
our previous leg that seemed to last a lifetime, central Iowa came quickly and
effortlessly. We made it to Grimes in the late afternoon only to realize that I
had an old address for my high school and college friend, Deb. Thankfully, they
had moved only a few miles down the road, so in no time we were at her
doorstep. When she had heard about us taking this trip before we departed,
she kindly offered her home to us as she realized we would be coming through
Des Moines on our way back home.
Deb and I have always had a special bond. I have fond memories of our friendship from junior high, high school and college. Thanks to Facebook, we reconnected after years of not being connected. It has been so nice to reconnect with her. Last year she and her family were in Minneapolis for a family getaway and I was able to meet her husband and two gorgeous daughters. It was so nice to be able to spend the last evening of our big adventure with Deb and her amazing little family.
Deb and I have always had a special bond. I have fond memories of our friendship from junior high, high school and college. Thanks to Facebook, we reconnected after years of not being connected. It has been so nice to reconnect with her. Last year she and her family were in Minneapolis for a family getaway and I was able to meet her husband and two gorgeous daughters. It was so nice to be able to spend the last evening of our big adventure with Deb and her amazing little family.
When we arrived, the kids were ready to play! My boys
immediately became acquainted with Ellery and Audrey and their cool toys. The four of them zoomed around the house in a
blur! Deb and Chad ordered pizza and the kids had a picnic on the floor while
watching a show. After dinner we went outside where there was a pond and many
hungry ducks. The kids fed pieces of bread to the ducks and played for a while.
Ellery graciously gave us her bedroom for the night, so I
put the boys to bed and stayed up for a bit to do some work and catch up with
Deb and Chad. We could have taken our time getting out of town the next morning
since there wasn’t anyone expecting us and we didn’t have a set schedule for
the first time on our trip, but I was eager to get home. The boys and I
ate a quick breakfast, said our good-byes (after solving the case of the
missing Elijah shoe) and we were on our way. Home seemed oh-so close, yet oh-so
far away. Those last four hours seemed to take eight hours.
STOP 14 – HOME
STATES DRIVEN THROUGH: Minnesota, Wisconsin, Illinois,
Indiana, Ohio, West Virginia, Kentucky, Tennessee,
Alabama, Mississippi, Louisiana, Texas, Oklahoma, Kansas, Nebraska, Iowa,
Minnesota (16 total)
MILES FROM PREVIOUS STOP: 247
TOTAL MILES DRIVEN: 3,804
Getting home was sweet, but surreal. The scope of the trip
had not yet sunk in. The boys and I were spent on many levels, but our hearts
felt so full. We had just finished a trip that many people thought we couldn’t
or wouldn’t do. We made real-life connections with many incredible people. We
learned a ton about the selfless nature of humans and the bond that heart
families share. I knew there would be a lot to process, and I was right. I
promised myself I wouldn’t write my final thoughts about the trip until I had
fully processed the entire adventure.
When we first walked into our home, I remember everything
seemed brighter. The colors in our living room were much more vibrant than I had ever remembered them being. The
pictures on our walls popped out more than they had before. Even Sammy asked if
the photos on the wall were new. Normally I see our house as a dirty pit, but
on this day it was inviting and warm and there’s nowhere I would have rather
been.
Dan was just starting his crazy weekend work at that point, so I knew we
wouldn’t see him for a few days. I could have brought the boys to the
dropzone for the weekend, but that was not an option for me. I did not want to go anywhere. Unexpectedly, Dan ended up driving home that night after a long day at work
so we could unleash love and hugs on him. The way Sammy hugged him was so sweet
and I’ll always have the image in my head of both boys’ heads lying on his
shoulders at the end of our driveway.
The following days and weeks were emotional. I missed my new
friends so much and my heart ached not knowing if or when I would ever see them
again. At the same time, I was so thankful and happy beyond anything I could
ever explain that I was able to meet so many amazing people in real life.
It wasn’t until a few months after the trip that I said, “I can’t believe I did
that!” while thinking about our summer adventure. It took a while for me to
grasp the enormity of our undertaking. I may have been nuts to take it on, but I don't regret any of it. Even the super-tired parts and Elijah waking up so
early every morning propelled me into greater insight into how he operates.
Since the trip, when I encounter negative thoughts, I remind myself about the road trip. If I can drive my two precious boys 3,800 miles around the country, I can do just about anything. Accomplishing tasks is much easier for me now. I find that I am more motivated to DO and speak up and create and love and live. Our amazing summer trip transformed me. I'd do it again in a second. In fact, an even bigger one is brewing in my head. To be continued!
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