Chicago
1 RV
3 adults 4 kids
7 States
3,983 Miles
10 Days
We started off
our journey eager and excited. We planned it out so that we could take our time
driving to Chicago. Making sure to allow enough time to take in the sights, and
stop often, in hopes that the little kids would adjust to being in car seats
much more than normal.
Some minor issues popped up... But didn't stop us!
Here are assorted photos from our rest stops...
Everyone loves Little America
Cooper even had his first ice cream cone!
Overall the kids did well traveling...
even if Cooper was so OVER being in his carseat!
these two enjoyed the comforts of the RV
So did Keegan
We stopped to check out the windmills... And got some Nebraska corn!
We found a rest stop with a neat park.
We stopped in
Colorado to visit friends in Denver. It was my first time visiting the state that I
dreamed would be my home when I was a kid... The dream continues! We had such an AMAZING time! The pictures will have to speak for
me, or we will be here for hours!
Thank you Angela for letting us crash your
pad (and for the amazing photos you will see below!). Thanks to Misha for a
delish home cooked meal. Every person we met was kind; I even have a softball
team to play with when we move ;)
After our pit
stop in Denver we were off again… our next stop was in Kearney Nebraska. We saw
signs for the archway monument and decided that was a good place to check out
and find somewhere to stop for the night and cook dinner. We got to the
monument and it was closed. They close at 6, so at 6:15 the place was deserted!
This turned out to be perfect. The monument is right next to a little lake with
a bridge that takes you over to exhibits showing native Indian history, they
even grow real Indian corn (which they harvest and send everything to the
native Indian tribes that are now located elsewhere).
do you have signal??
We left Rick and Keegan
behind at the RV to go adventure across the bridge.
We met a lovely lady who
was there caring for the plants (whom I expected to scold us for being there when
the place was closed, hahaha the city girl in me!). She talked to us for a half
hour about the monument, sunflowers, corn, and beans. I appreciated her taking
the time to talk to us, and tell us about what they do. Makes me miss living in
the country, where people aren’t in a hurry and are happy to talk to you!
On the way back to
the RV after the kids frolicked in the sprinklers…
nothing better after a long hot day!
followed by a beautiful sunset...
Rick was
wondering what happened to us. As he waited for us to return he managed to get
internet service and posted on his Facebook: “sitting here BBQ in Kearney
Nebraska.”
Shortly after that we discovered that one of his long lost cousins
lives in Kearney Nebraska!! Just a few miles from where we were sitting and
eating dinner! She was so excited that her family got in the car and drove to
meet us. She convinced us (I didn’t take much convincing! We needed to wash
dishes, and were running low on drinking water! Did I mention one of the water
tanks was cracked, a pipe was leaking, and we couldn’t figure out how to get
the water to work? 7 people and no running water= me desperate for water!), to
come park the RV at their house. Unfortunately, they have cats and a slew of
little kittens running around and I am super allergic so we decided to do
dishes in the yard with a hose, gotta love it! Once we got the kids off to bed
we sat outside under the stars. I listened to Rick and his cousin talk about
their family and catch up while enjoying a cool breeze and watching fireflies
flickering in the distance (I haven’t seen fireflies in about 20 years!).
The next morning
after breakfast and goodbyes we were back on the road. This day is a bit of a
blur, my allergies started acting up. I think it was a mixture of the kids playing
with the kittens (Cooper LOOOVES cats, and it’s adorable!) and other
environmental allergies. By the end of the day I was miserable! We stopped in
Des Moines Iowa and, went to the store for some Benadryl, Zyrtec, anything I
could get my hands on. After that we headed to a KOA (40 miles back from where
we came LOL!) outside of Des Moines and I crashed. I woke up for a shower and
dinner, watched the kids at the pool for a few, helped get everyone ready for
bed, and crashed again.
Our morning
consisted of quickly getting the kids fed, dressed, coffee, and getting back on
the road. Our next stop would be the Hotel… glorious hot water, comfy beds, and
enough space for everyone to spread out! The only thing in our way was TOLL ROADS! We saw
the dreaded sign that we were entering a toll road and tolls were due ahead. We
had less than a dollar in nickels and pennies. There was nowhere else to go,
and nowhere to stop! Lucky for us they issued us an IOU. We hit the Oasis and I
begrudgingly paid the 3.50 fee to get money from an ATM, thinking at least we
can pay the remainder of the tolls… WRONG!! 2 more IOU’s from the unmanned
tolls that only take EXACT
change! HAHAHA.
We get to the
hotel... YAY!!! We made it! Get checked in and head down to the area where
everyone checks in for the convention and they have a huge room set up with vendors
and activities for the kids.
signatures saying thank you to the company for providing growth hormone to those in need.
They get handprint pictures made, faces painted,
climb rock walls, play and have fun. I took Keegan to meet with the Dentist and
he said Keegan’s teeth looked good and he didn’t have any concerns (WOOHOO big
relief for me!)! Once things wound down we went to dinner, came back to our
rooms exhausted and slept like babies!
Looking back it
feels like the convention flew by.
Friday: We got up
and ready, dropped the kids off at the daycare, attended the first half, picked
the kids up for lunch (Mom watched the kids while Rick and I attended an added
segment on insurance reimbursement), dropped the kids back off at daycare,
finished the second half of the day, and raced back to pick up the kids even
though the doctor wasn’t finished talking.
I did manage to
ask Dr. Borchert a question (rather sort of a question) and all he could really
tell me is that Optic Nerve Hyperplasia (He believes that Septo-Optic Dysplasia
is a misnomer, and that all of our kids have ONH, just affected in varying
degrees) is a spectrum disorder and unfortunately Keegan is on the severe end
of the spectrum.
Ouch. I feel like the
air has been drained from my lungs. The room gets heavier.
Breathe.
Try to smile and nod. Don’t break down in front of all these strangers. Breathe.
Don’t cry. I’m
sure everyone is thinking they are lucky their kid isn’t like mine. Maybe
holding your
breath will be better. He’ll be done in a second and maybe you can run
without people
noticing. I wish I hadn’t insisted on sitting at the front of the room.
Breathe.
Stop sniffling. Hold it together.
That went on for
a few minutes until I could calm down. I don’t know why it hurt so much to hear
it out loud. I had a feeling I wouldn’t like everything I heard when I started
asking tough questions. I already knew Keegan’s case was more severe, it’s not
like it was news. He didn’t have any amazing insight; although, I am interested
in his theory that Keegan might have intermittent vision. Which makes more
sense than saying he sees absolutely nothing. I did my best to keep it together
as I listened to the rest of what Dr Borchert said. I started talking to God. I
wondered why I was there, I thought I would meet other kids like Keegan and get
support and encouragement from the parents. I thought the doctors would have
new and valuable information about this disorder that I could share with our
doctors and specialist. I thought I would get ideas and inspiration. Time was running
out and none of those things had happened. He made all of this possible, and if
it wasn’t for those things I expected then why?
That night we went to dinner, took the kids to
the pool (which was freezing! Keegan didn’t like it), and got ready for bed.
Saturday: Got up
and ready, dropped kids off, attended a discussion about MAGIC, and got out
early so we could spend the afternoon at the zoo. We enjoyed the animals and
gardens and walked until we couldn’t any longer.
As I wandered around the zoo I
was worried. Trying to figure out how I would explain this experience to
others. It wasn't anything like I thought. It wasn’t bad. I just thought I would learn something new. I firmly
believe there is purpose in EVERYTHING. I spent a large portion of the drive
home pondering the same thing… We drove our RV around downtown Chicago, go ahead and laugh! We realized there wasn’t going to be anywhere to park it. Headed back toward the
hotel and found a place to stop and have a classic deep dish pizza.
It was our
first and we all loved it! With full bellies we went back to the hotel just in time for fireworks!!!
After that we were beyond tired... Everyone got ready for bed and crashed!
Those 2 days were so long and still so short!
We got up and on
the road as quickly as possible Sunday and spent 2 ½ days hauling butt to get
home!
I kept thinking, there’s got to be other people out there like me with
kids like Keegan on the more “severe” end of the spectrum, as Dr. Borchert put
it.
Where are they???
Maybe they feel like me...
Alone. Isolated. Unheard.
I have never been a super active member. Most of the people I have encountered have kids on the milder end of the spectrum. I worry about freaking them out. If I just start
posting about all of Keegan’s stuff I might terrify those who are newly
diagnosed! We just seem like we are worlds apart.
Do they feel the same way I do!??
I decided that I
was going to reach out to these people… to see if I get any response. I did! I also reached out to MAGIC, to let them know how I felt. I decided to start a group on Facebook for families with kids on the “other” end
of the spectrum… a safe place to share our struggles and our triumphs. A
place where we can encourage and support one another on this dimly lit journey!
I am THRILLED
that people are requesting to join daily! I am so excited to get to know
everyone and watch this grow. I can’t imagine all that we can learn from each
other.
For those who might like to join send a request!
The first requirement is that you have a child with SOD/ONH who is more severely affected.
I also ask that you first get in touch with the MAGIC Foundation and join the main group on Facebook
We are still
moving forward… Keegan went back to school a day after we got home. We’ve been
working on getting back into a routine. Keegan got sick again and we missed our
appointment to see a neurologist at UCSF but we have it rescheduled for October.
I am trying to get Keegan into an intensive PT program, and we are changing
where we go for PT OT and Speech. Back to working on getting the equipment we
need. Finally got the bigger gait trainer and got it adjusted to fit him… He
looked so good in it! I am looking into getting our new van modified for
Keegan’s wheelchair. Same old crazy busy, and I’m doing my best to juggle it
all.
Sorry this post
took much longer I anticipated... Maybe at this point you can tell why! I will try not to wait so long next time.
Again I would
like to thank everyone from the bottom of my heart... (thank you) for supporting us in this... We aren’t done yet! There’s still so much more to do and I hope you will
continue on this journey with us!
Krystal
