Raising a child with Congenital Unilateral Perisylvian Syndrome, Polymicrogyria and Epilepsy
Mystery Lane
Tuesday, December 1, 2015
Storm!
A wind storm hit Spokane nearly 2 weeks ago, Tuesday, November 17th to be exact. We knew the storm was coming but what we didn’t know was the damage it would deal to the city. The winds started kicking up about 1 p.m. They were strong but not too bad. Sylvia called me from school about 2:30 to tell me that the school wasn’t going to let students leave the building after school so I would have to come in to the school to get her. I went a little bit early to pick her up to miss the rush. On the way home we saw the first tree down. It was in the front yard of a house we drive by every day and was probably about 90 years old. It missed two houses by about a foot. We drove by it twice just to look at it. It was pretty amazing and lucky to not have hit those homes. We got home and watched the storm through the front window. Neighbors trash cans, flags, yard decorations and tumbleweeds were blowing down the street. Sylvia and I took turns running outside to claim our neighbors’ belongings to give back to them. Jackson arrived home on the bus and his bus driver informed me that two buses had already been hit with trees. It was getting worse by the minute. The City of Spokane directed everyone to go home at 3 p.m. The city was shutting down. Eastern Washington University, where Kevin works, also closed at 3. Kevin came home and about 20 minutes later we lost power. Sylvia was excited, it was the first time she lost power. Jackson was mostly confused about why we were living in the dark. Of all things, I was supposed to fly to Seattle that night for 2 days of meetings. I watched online as all the flights out of Spokane were cancelled, except mine at 7:30 that night. I knew it had to be canceled but the airport and airline websites both showed my flight going. So in the midst of 70 mile an hour winds, and with my family at home with no power, I headed out the airport. I felt like I was in a movie! Trees were down everywhere, I would go down a street only to be blocked by a tree, I’d go down another street and encounter another tree. The city was dark, no traffic lights, sections of fence were flying down the streets, it was raining dirt water, and every once in a while the sky would light up (another transformer blowing). I’ll be honest, I love storms! It was fairly awesome to be out in it, once I got over my fear of being out in it. Of course once I got to the airport they told me my flight was canceled, even though the airport monitors and the website still showed it was “on time”. I headed back into the storm. This time I decided to stop by our other property to see how it was holding up. That was another obstacle, trees down on nearly every street I tried. Our property was fine except for the giant branch that had fallen off our neighbors pine tree that was blocking the driveway. It had at least missed the power line. I got home to a dark house and Kevin and Sylvia playing games by the light of the lantern. We went to bed having no idea of what we would wake up to. We woke up to no electricity but enough hot water for a shower! I had rescheduled to a morning flight and we already knew there was no school or work for Kevin. I headed back out to the airport feeling really guilty for leaving my family in a home with no heat or power. What I wasn’t prepared for was what I saw that morning. I’ve never been in the aftermath of a hurricane or a tornado but my guess is that it looks pretty similar to what Spokane looked like. So many more trees were down. Power lines were hanging down on the street like string. For those of you who don’t know Spokane, we have a “Tree City” designation. Our trees are big, old and cover streets with their leaves like tunnels. I haven’t heard the final figure but I know we lost close to 400 trees that night. It was fairly heartbreaking to see the damage. There were still no traffic lights but there weren’t too many cars out. I flew to Seattle for my meetings but it was hard to focus, I was worried about my family and what we were going to do without power. I knew from the looks of it, it was going to be a while before we got it back. The utility company was saying 3-5 days for our neighborhood. That night in my hotel room I was talking to Sylvia on the phone when she suddenly screamed “Our power just came on!” I jumped up and down on the bed in the hotel room in excitement. We had only lost it for 27 hours. We were some of the lucky ones. The worst off went 11 days. Not only that but not even a week later we got our first snow storm and temperatures plunged into the teens. Many people chose to ride out the no power in their homes in those temperatures. It was brutal for them. In the end 3 people died in the storm. As far as school, well there was none. While some of the schools had electricity many didn’t. One school had two large trees fall on it. Kids walking to school would have been met with downed power lines and trees. It wasn’t safe. The kids finally went back to school yesterday. 12 days of having kids home from school, with a city that wasn’t fully functioning (banks, grocery stores, even McDonald’s didn’t have power!) was exhausting. Our streets are fairly clear and everyone has power again, but the damage is still visible. Houses with tarps over them because they lost part of their roof or a tree fell on them are a common sight. Giant trees moved to the side of the roads. Trees cut up in big chunks litter people’s yards. Bases of trees with roots sticking up 6 feet in the air with pieces of sidewalk it took out are frequently spotted. And that first tree Sylvia and I saw? Well the other old tree next to it went down too. It also missed the two houses. They are still there, untouched. The kids and I drove around two days after the storm to check out the damage. As we headed out we saw a tow truck towing an RV. A tree had fallen on it right in the middle. It looked like a bomb had gone off in it. We saw quite a few houses that took hits from trees. Some that were now unlivable. As the weeks went on utility crews from Canada, Oregon, Nevada, California and Montana invaded our town. Those men and women were our heroes. 700 of them. They worked 12 hour shifts so that they were going 24 hours a day. They missed Thanksgiving with their families so that our families could have electricity. One incredible woman drove around and delivered Thanksgiving dinner to some of them while they worked. The kids and I loved driving around town seeing all the different trucks and we made sure to yell “THANK YOU!”. Spokane is pretty big, but when something like this happens it feels like a small community. Everyone helping their neighbors. One elderly woman went without power for 7 days, when the power came on it sparked a fire in a space heater that was left on and her home quickly caught on fire. Where did she stay that night? At her neighbors’ house. On the news, she didn’t even seem to care, she was just happy to have good neighbors she said. Our city took a big hit, one with long term effects. But it made us stronger and more grateful for the things we take for granted. This Thanksgiving one of the things Kevin was grateful for was “chainsaws”. Indeed! People helping people and a strong sense of community. That is why I love Spokane.
Wednesday, October 7, 2015
The Teacher
The other day I was driving around town running errands when
an old familiar song came on my iPod. A
song that once brought me back to life.
The song is “Hello World” by Lady Antebellum. I think I wrote about it before on this
blog. The first time I heard this song
was a few years after getting Jackson’s diagnosis. It was at a time in my life when I had just
started seeing the light at the end of the tunnel. A turning point when I started to notice that
there was “a light, a little grace, a little faith unfurl” (to quote the
song).
I think for a long time I hid from others the true
devastation that was going on inside of me.
I grieved for so long over the lost little boy I thought I was going to
have. I put on a brave face while inside
I was secretly thinking things would be better off for me if I died. A couple of years ago I testified at a senate
hearing in our state legislature about that despair. I would be driving on the freeway and would
think to myself “What if I just swerved into that semi? Would I go quickly or live to suffer more?” It was a dark time for me. There was a lot to accept. The things Jackson may or may not do, how
different my life would be, how hard it would be at times, the fear I would
live with surrounding having a special needs child. All I wanted was for my little boy to be
“normal”. Why couldn’t he?! I felt I was being punished for something I
did in my life and that I had done something wrong to deserve this. Now, even as I write this, remembering those
feelings is hard and painful. I wish I
could go back in time and tell myself to stop.
Just stop Stacey! I had no idea
that it would get better, so much better.
That there would be a day when I was thankful that Jackson was born with
disabilities. That the day would come
eventually when I not only said “HELLO WORLD!!!” but embraced it with a new
found passion I never even knew existed inside of me.
Jackson have given me so much. He has taught me more in his 7 years than I
learned in the 36 before he was born. He
has made me a better person, a stronger person.
He has opened my heart and my mind.
He has made me smarter, more understanding, grateful, and patient. Well, I still have some work to do on that
patient part but I am better. He has
turned me into an advocate for people with disabilities. Something I would have NEVER envisioned for
myself. But something that I truly,
truly love. I have met the most
extraordinary people because of Jackson.
I have so many friends in my life that I draw strength from, admire and
love just because my son was born with disabilities. My life is so full because of my son. I’m not sure how I will ever repay Jackson
for the life he inadvertently has given me.
During that dark period I feared I would never experience
the joy parents get from their children.
Or pride. Boy was I wrong. I am so proud of Jackson and how far he has
come and continues to progress. I get
joy every day when I look at his cute little face and hear his intoxicating
laugh. I may not be the parent I thought
I would be standing on the sidelines cheering my son on as he scored a goal or
basket, but I know now that I will still be on the sidelines cheering him on (for
totally different reasons). And I will
be louder, prouder and by golly the most grateful!
Today I give thanks to my teacher Jackson for encouraging me
to dig deep and try to find my best self.
I’m still digging, and probably always will, but I’ve discovered a part
of me that never existed and parts that laid dormant for years until Jackson
showed up. I had no idea the changes in
store for me on the day he was born. I
knew I was getting a new name (Mom) but not a whole new life and purpose. And a big shout out to Lady Antebellum for
giving me the song that would give me the courage to say “Hello World”, something
I couldn’t do for a very long time.
"Motherhood is about
raising and celebrating the child you have, not the child you thought you’d
have. It’s about understanding he is
exactly the person he’s supposed to be.
And, if you’re lucky, he might be the teacher who turns you into the
person you’re supposed to be.” - The Water Giver
Friday, September 25, 2015
Routine (or lack of it)
The kids are back in school which means germs are back
infesting the children. Oh joy! At the end of the second week of school
Jackson started getting a runny nose followed by congestion. Which he quickly shared with me. (Someone remind me why I had children). For some reason, it hit me like a ton of
bricks while Jackson was mildly affected by it.
Thankfully I have recovered, however here we are about 3 weeks later and
Jackson still has the runny nose and congestion. Apparently that wasn’t enough, diarrhea then
took over his body. For the last couple
of weeks he has had it off and on. We’ve
gone through more bananas, rice, white bread and applesauce than we normally do
in a year. He’s probably missed about a
week of school due to the unwanted bowel issues. There isn’t anything like driving in the car
with a kid with explosive diarrhea.
Whatever you are envisioning with that scene is nothing compared to the
reality. Let’s just say days later, lots
of Lysol, and car seat washings have not fully eliminated the smell from the
car. Not to mention how many baths I have given the
kid on an emergency basis. He has
returned to school today and I am crossing my fingers and toes he is able to
get through the day without an explosion.
This Mama needs a break from poop and a grouchy child. Mostly I long to get back into our school
routine. I want Jackson at school
learning and I want to get to my pile of reading and emails.
The highlight of the last couple of weeks is that
[drumroll…….] Kevin and I got to go on a date!
We haven’t had a date night since March when we went away for the
weekend. Two angels stepped forward and
offered to babysit. A big, giant, huge
shout out to Summer and Matt. They have
no idea how amazing it was for us to go on a date. Statistics have shown that the divorce rate
of couples who have a child with special needs is extraordinarily high. Lucky for me I took my time finding a great
man to marry so that we would be solid and divorce would never be in our
vocabulary. But, it can be difficult and
stressful at times. We are lucky that
Jackson is ridiculously healthy despite his diagnosis. Nevertheless, we still need couple time. It is hard for us to find people who are
willing to watch Jackson. I think it
scares them that something might happen that they don’t understand and also the
fact that he is a big kid and hard to move.
I totally get that. So when we
get an offer to go out we jump on it!
Summer had been around Jackson a couple of times but never to babysit
him. Matt had never met him. For them to just offer was incredible. We are very grateful to have people like that
in our life. Thanks Summer and
Matt! You two rock!
The last couple of weeks have been anything but routine but
as Randy Lewis said “When the map and terrain differ, go with the terrain.”
Thursday, September 10, 2015
I'm Back!
Whew! It seems like a
lifetime since I last wrote for the blog.
Summer was crazy busy and just flew by.
The kids are back in school and I feel like I have a life again. I think the summer of 2015 is going into my
record book as a pretty great one, albeit it did have its moments. Where to begin…..
Let’s start with Sylvia’s adoption. That’s right, we adopted Sylvia for
real! We spent 2 ½ years of being stuck
in limbo while the state Court of Appeals and Supreme Court determined whether
her birth mother’s parental rights termination was indeed legal. When our attorney called to say that it was
officially over I truly can’t put into words how I felt. I started jumping up and down while
attempting to dance around the house all the while crying and laughing. Then I held my breath for the next month and
a half until we sat in court and made it official.
Sylvia always seemed like a member of our family, I really
don’t remember much of our life without her around. But as any foster parent knows, there is
always a sense of disconnect. I think it
is a defense mechanism in case the child is removed for some reason. I always felt that she was our foster
daughter, not our daughter (yet). I
maintained a bit of distance in my heart, and I knew I was doing it. While I knew the law was on her side, not her
birth mom’s, there was always that sense that a judge could make a decision
that would take her away from us. As we
sat in court on July 24th to adopt her, our attorney said something
that was like a light switch in my heart.
She said that adopting our daughter was the same as if we had her
biologically. That we were responsible
for caring and loving her, just like Jackson.
While that sounds like a no brainer, it really put it in perspective for
me and for the first time I knew I had a daughter. I know no one is going to show up on our door
and take her. They can’t. She’s all ours! I feel myself opening up more and more to her
and creating new traditions with my daughter.
For example, we have started coloring together at night. Sylvia is really artistic (and I am not!) and
loves to do art projects. Coloring is
something I can pull off so we have bought a couple of fun coloring books and
sit down at the table at night to color before bed. It’s pretty cool.
As for Sylvia, well she has seamlessly adjusted. Honestly, I think she felt like she was a
Klim this whole time so the adoption was just about changing her name. No big deal.
She’s pretty resilient that kid.
She did however opt to add another name.
Her birth name was Sylvia Storm.
So she added another middle name to it and her name is now Sylvia Storm
Kira Klim. Kira was the girl name we had
picked out when I was pregnant with Jackson.
Now we have our Kira. As Sylvia
says “Double S, Double K”.
A couple of weeks after we adopted Sylvia we headed to
Montana to watch my baby nephew Joey marry his longtime love Megan. I was 13 when Joey was born. I changed his diapers, fed him his bottle,
watched him learn how to ride a bike, helped him with his homework, witnessed
his teenage years (when he would only talk in one word sentences), saw him
graduate from high school and college and turn into the pretty cool man he
is. It was an amazing weekend. Joey and his wife love the outdoors probably
more than anyone I know. They got
married in a place called Paradise Island, an island surrounded by the waters
of the Clark Fork. Megan arrived to her
wedding in a raft. Dinner for the
weekend was cooked in dutch ovens, the music was Patsy Cline, Johnny Cash and
Willie Nelson, the boys in the wedding party wore Levi’s, and there was real
moonshine on the dinner tables (I got a buzz just smelling the stuff). It was a weekend celebrating not only Joey
and Megan’s love for each other, but celebrating who they are. It couldn’t have been more perfect and I am
ecstatic to have another niece!
The beginning of the
summer started with a couple of fun weeks in Florida visiting my beautiful
in-laws and family. We spent an
extraordinary amount of time in the pool this time. Now that Jackson is walking on his knees he
is better able to communicate his wants and needs. So after breakfast Jackson would head over to
the door out to the pool and start banging on it. His way of saying “Let’s get in the
pool!” Same thing after lunch, back in
the pool we went. No complaints, there’s
nothing better than spending the hot summer days in a pool! On our way home we stopped in Denver for a
couple of days to visit my family and friends.
We always have so much fun with them!
Sylvia went to a couple of camps this summer – water camp
(kayaking, canoeing, stand up paddle boarding) and rock climbing (she chose it,
we didn’t force her, but we were super happy about it). and
Jackson went to Funshine Day Camp for a week which is for children with special
needs. By the time summer came to end I
hadn’t done half of the things I wanted to with the kids. It seemed like we were always on the go. I planned a “summer’s going out with a bang”
last week of activities with the kids but sadly we weren’t able to do those
things. The smoke from the heartbreaking
fires from all over our beautiful state brought in dangerous air quality so we
were forced to stay in our home for a week or so. I realized how much we take our fresh air for
granted. Waking up every morning and
checking the air quality to see if you can leave your house was a new reality I
never envisioned. The fires are still
burning but thankfully our air quality has gotten back to normal, good
levels. The smoke was nothing compared
to the loss of life and homes in our state that continues to this day.
Sylvia is in 6th grade this year and I am trying
to wrap my head around the fact that she is off to middle school next
year. Yikes! Jackson started 2nd grade this year
in a new school. As you know last year
was a tough one for him and us. I am
happy to report it is like night and day this year. His teacher loves him, thinks he is amazing
and is not letting him get away with anything.
The first week of school he was able to identify the words (not
pictures) cat, bus and can. He said the
word “cat” and “un” (for sun). He picked
his written name out of a group of other names.
At this point I am questioning who my kid is! I had no idea he knew words or his name. I always knew he was smart on many levels but
had no idea he was this smart. Last year
his teacher had him picking up a block and putting it in a box. In one week of school this year and he is
nearly reading! What a difference a
teacher makes. I can’t wait to see what
else that kid has been hiding from us.
As for me, I am happy to have the days to myself again. Having the kids all summer took a toll on my
body. Jackson is now 80 pounds and the
lifting, moving him around the house, and the in and out of the car wrecked by
back. Living with constant pain all
summer made me grouchy and irritable. I
wasn’t a very pleasant person to live with (shout out to Kevin for putting up
with me!). Having time to get back to my
advocacy work, catching up on errands and doctor appointments I neglected, and
being able to come to the bakery and write my blog has made me feel like me
again. Thankfully my doctor approved
some massage therapy along with my chiropractic visits so I can get some pain
relief. Not having Jackson at home all
day gives me a much needed back break.
Not having to entertain Sylvia all day gives my brain a break!
I’m not sure who said it, but this pretty much sums up my
summer: “My kids are the reason I wake
up each morning, the reason I breathe….and why my hair is falling out, my house
is a mess and I’m crazy.”
Subscribe to:
Posts (Atom)