It
is currently 11:03 am on a Tuesday. I am sitting in bed under a warm fluffy
blanket with a steamy homemade vanilla dirty chai and a bag of broken
brookies (brownie cookie combo) I made last night a bowl of cinnamon
mini wheat cereal (opting for a slightly better choice). In my bed are two of
my boys, with clean diapers, a bowl of honey nut cheerios, watching Cars 2.
Let’s not forget my sweet puppy sitting on my legs; she should be warming up my
feet.
Don’t you wish you were me? Come
on over! I will gladly let you fill in for me!
When you lift the curtain, a
little more you will see:
There
are cheerios ALL over my bed. Keegan is about to kick Cooper in the face. The
puppy is waiting for an opportunity to steal cheerios. Cooper just had his
third poopy diaper changed. I have a list of people to call and email that I
will probably never get through or hear back from. Dry mini wheat cereal is my
breakfast, and possibly lunch. (It was breakfast and lunch… (**I also ate
the brookie crumbles with the boys in the ER as dinner) & I left my
house phone on the charger… I just got comfortable.
Bet many of you put your hands
down… Wait it gets better.
Both
of my sinks and half of my counters are full of dirty (rinsed at least) dishes.
There are remnants of vomit and diarrhea on my laundry room floor. Keegan’s
entire bed needs disinfecting. My house probably looks like a tornado hit,
compared to how pretty and clean it was yesterday. Take three steps down the
hallway to the kid’s room and you will be overwhelmed with the smell of urine.
My two year old is now stealing MY cereal.
Yes it’s okay to
laugh… I certainly do!
I woke up late today. I
completely slept through my alarm. As I rushed to get breakfast made, cups
prepared, I texted my walking buddy to let her know I was running VERY late.
Conner luckily was up and getting ready for school. I asked him to let the dogs
out to go potty. Minutes later, I step in a pee puddle on my carpet. When I get
Cooper from bed, he is soaked in pee. When I went to get Keegan, I found him
covered in vomit and diarrhea (I still don’t know how to spell this word
despite how frequently I use it!) Quick change in plans. Keegan will NOT be
going to school, and promptly needs a bath. After peeling sticky clothes off
and wiping the poo that seeped all the way down to his knee (and through his
clothes), I carry him to the bathtub trying not to think about the fact that my
clean shirt is exposed to residue. EW.
Now we are going to be L-A-T-E!
Time to tell my friend we will NOT be walking today.
For probably the thousandth time
in the last week, I wonder what I would do if this got worse and Keegan became
deathly ill. (This magnified as I sat in the ER
waiting for a ct scan, not sure what was going on.) We have dear friends, whom I've never met but have an
unbreakable bond as parents of children with special needs, whose son was
critically ill for weeks, with seizures and fevers they couldn't find a cause for or control.
Their sweet boy Connor is the same age as Keegan, and
has the same diagnosis. They even look similar to each other. When I heard he was sick,
and having horrific seizures, my heart skipped a beat. Thankfully, they have a
wonderful support system, and their son is home and doing much better.
I wish I
could say the same for Gavin. I found them through another blogger last
week. I began praying for their family instantly. I read most of her blog; I
found immense inspiration, and admire her spirit. I followed along inspired and
devastated by their story. I can’t tell you how many times this scenario has
played through in my mind, and to watch it happen so unexpectedly literally
wrecked me.
“Gavin, has passed. It happened shockingly quickly; last
week, he was a five-year-old boy with special powers who had just started
dancing. On Wednesday he stopped breathing and went into cardiac arrest. On
Friday Kate and her husband, Ed, made the decision to donate his organs. Last
night, he was officially pronounced dead.” From Love that Max
Insight
from the last few weeks:
Just
over two weeks ago Keegan nearly choked to death, no exaggeration needed. I
can’t begin to explain how utterly terrified I was during the 8 minutes it took
for his body to dislodge the food, and the arrival of first responders one
minute later. I am still slightly traumatized.
A week
and a half ago we saw a new neurologist who told me that what I see is what I
get. That Keegan will not likely improve aside from possibly calming down, as
he gets older. Essentially, he didn’t believe Keegan would make any significant
developmental gains.
During
all of this I’ve been faced with some difficult truths, and wondered what God’s
plan is. At what point will Keegan be free from all of this? I don’t agree with
the doctor whatsoever but there may be an ounce of truth to his statement. I
have to accept the reality that without some miraculous intervention Keegan
will continue to be severely developmentally delayed indefinitely.
I love my son, and I want so
much for him, I also want more for him than he will probably ever have in this
life. It is devastating to think about. Some days I pray Jesus will come quickly. I pray Keegan will accomplish
all God has planned for him so he can be free.
I am in awe of Kate.
Pray for their
family, Connor’s family, and mine as well.
On the
bright side:
My wonderful husband
is home! After a ridiculously long 3 weeks (I felt like it was over 5 months!).
We all missed him dearly! My sweet Cooper says “thant to Momma” after I give
him most of my cereal, and “Bushu Momma” in the most adorable way every time I
sneeze. My puppy loves me even though I stepped on her as I tripped over her
and yelled at her for being under my feet. My dear Conner made his own lunch
today, and puts up with my attitude and short fuse on these crazy mornings.
Last but not least… Keegan. Despite derailing my day, and my life in so many
ways, is alive. He is resilient, he bounces back quickly. He hasn’t been
hospitalized in a year! Through him, God has given me strength and compassion
that knows no end.
Update:
It is 8:25 The very
next evening.. My darling hubby is getting Keegan dressed while he fills the
room with uncontrollable laughter. It's distractingly adorable,
even with the farts .Just after I posted this we went to see our pediatrician.
I asked the Dr if we could have x-rays ordered prior to our appointment to
check for any blockage due to constipation (which we’ve been dealing with over
the last week slash his entire life). When she looked at the X-rays, she
expressed concern. Keegan appeared to have a significant amount of gas in his
stomach, and looked distended. Keegan didn’t seem to be in much pain but we
agreed that in his case appearances aren’t the most reliable. Since it was just
after 5pm, she recommended we go straight to the ER to have a CT scan done, as
this was the fastest route. I had to get a hold of the hubby to come pick up
the other boys. My terrible two-year-old monster successfully demolished all of
the snacks bribery I brought along and was rapidly turning
into a Gremlin. We met lovely nurses, who were so sweet I had to share some
brookies we made to honor Gavin (more info to come). After talking with the ER
Dr and seeing a similarly concerned response from the X-rays, I had to chase
away negative thoughts. Generally, when we go to the ER I (sort of) know what’s
going on, what action needs to be taken, and how it’s all going to go down.
This was completely new to me, and sounded like it had the potential to be
serious. YIKES! This situation coupled with a lot of waiting, my cell
phone dying, and Keegan waiting until the last minute to cooperate and guzzling
the contrast liquid… It took a lot of distraction to remain calm and not think
terrible thoughts. Not even Pinterest could capture my full attention. Millions
of minutes later 3.5 hours later we got the results from the Dr that
everything looked okay, there didn’t appear to be any obstructions, and we were
going home! Relief, thank you Jesus! I quickly (after handing out some more
brookies in honor of Gavin on the vehicles parked next to me at the hospital)
headed home and to bed. Keegan is a champ, and had a great day full of therapy
today! Thank you for your kind thoughts, prayers, and caring. Much love!!!
We are so
blessed, and my grandma is right, I wouldn’t have it any other way.
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