Wednesday, September 6, 2017

The Heart of Why We Are Climbing...

"Mom, I'm going to try one more time and then if I still can't do it, we can just get me velcro shoes again."  Juli and I had been sitting on the floor of Kohl's trying on shoes with laces for over half an hour.  She had learned to tie her shoes at the end of last year at OT and at day care (thanks, Ms. Nora!), but we hadn't really practiced much over the summer (my fault).  Juli desperately wanted to have shoes with laces this school year, and I really wanted her to have them too, because the look of desperation in her eyes at that moment was crushing me.  So I showed her again how to tie her shoes.  She took a deep breath and concentrated hard, while watching me tie the shoe the other shoe she needed to try on...and she got it!  She was so excited, she ran to find Ryan and announced that she remembered how to tie her shoes.  She tried it 3 more times, each time with success, and so we left Kohl's with a pair of shoes with laces.

Earlier that day, we had been weeding out her clothes- figuring out what still fit and what was too small.  We came across 3 pairs of jeans.  "Mom, can't we just pass those on? I can't button them and they leave marks on me" (the buttons for the adjustable waist dig into her hips since she's so skinny).  In OT they have been working on buttoning and snapping pants, because Juli doesn't have the finger strength.  "Can you just try them on and see if they even fit you first?", I asked.  So she tried them on and struggled to button or snap (depending on the jeans) them shut.  I watched her trying so hard to do it.  "Mom, how about we save these and bring them to OT so Ms. Stephanie can work on it with me?"  "That sounds like a great idea, Juli."  "But I still don't like how they leave marks on me."  "That's fine, you don't have to wear them to school, but we can just practice on the buttoning."  Fortunately, Juli mainly wears skirts or dresses and leggings when needed, so I don't often have to worry about pants for her.  She does prefer the softer waist bands of sweat pants or athletic pants for the winter months, and I am happy to make sure she has those types of clothing.  My hope is to get her to the point where she can button or snap a pair of jeans, even if she doesn't want to wear them, just so that she knows she can.

Juli is why Noah and I chose to do the Willis Tower stair climb.  Noah loves his sister, and hurts when she struggles.  He has shown such patience with her when she reads or does math.  He showed her that it is okay to listen to books (audiobooks) this summer, and the two of them compare the ones they download from the library and sometimes listen to them together.  Sometimes, Noah will check the book out too, and will sit next to her while they listen to the audiobook and show her how to follow along.  He gets mad when she tells us that she is stupid (I get mad as well) and works hard to point out all the things she does well.  He is her protector, even if they fight.

Juli is why we are climbing.  Please consider donating to our journey up the 103 flights of stairs.



To donate for Noah click here.
To donate for me click here.
Can't decide, donate to Team Juli: the Mighty Minions.

Friday, August 4, 2017

Update #1 on the Journey to 103...

First of all, to everyone who has donated towards our climb to the top of the Sears Tower (I don't think I will ever be able to call it the Willis Tower), Noah and I want to say thank you from the bottom of our hearts.  We are very grateful to and thankful to you for donating for us.

We want you all to know that we have already started training for the climb.  We logged over 40 miles in July- running and walking.  We have been biking, roller blading, and swimming laps as well. We will begin running hills and stairs on the weekends soon.

To those of you who are interested in donating, there is still time!  We don't climb until November, but Team Juli: the Mighty Minions needs to raise $3000 before then, so please consider doing so.  The Shirley Ryan AbilityLab is an amazing facility that helps out so many people in many different areas of their lives.

Here is just one story of the way they have helped someone:


If you are interested in donating for Noah's climb, click here.
If you are interested in donating for my climb, click here.
Can't decide and just want to donate for the team, click here.

Tuesday, June 27, 2017

The Journey to 103 Begins Again...

Two years ago, I did the Skyrise climb.  It was fun and rewarding, but I will be honest, I didn't plan to do it again.

Fast forward to June 14, 2017.  Juli started the extended school year, and I had to get her up at 6:45 because the bus comes at 7:15 (Juli is normally a "walker" during the school year, so getting to ride the bus is a big deal to her, even if she has to get up earlier than most kids- and it was the one thing that helped her to stop crying when I told her that she was going to be doing the extended school year).  Noah got up early too, because he wanted to say good-bye to Juli and make sure she got on the bus safely.  After Juli got on the bus, Noah and I had a conversation, and it went something like this:

Noah: "Mom, I feel bad that Juli has to do summer school.  She's going to miss out on lots of fun stuff this summer."

Me:  "I know, but she can't fall further behind in school.  School is already hard for your sister, this should help her so she doesn't fall further behind in the fall."

Noah:  "I need to do something for her and for other kids like her.  Do they still do the stair climb that you did for the RIC?"

Me:  "Yes, but registration hasn't started yet."

Noah:  "I want to climb for Juli and raise money for her doctors."

Me:  "Okay, let's do it."

For those of you who are not familiar with Juli's medical history, you can read about it here.  A shortened version is that Juli has been diagnosed with Developmental Coordination Disorder along with Sensory Processing Disorder.  This affects how she learns and processes information in and out of the classroom.  To help Juli out during the school day, she receives speech and occupational therapy at school, she meets with a reading specialist and is pulled into small group for math, writing, and reading again.  After school is over, Juli goes to Occupational Therapy every other week for an hour, she goes to math tutoring 3-4 times a week for an hour, and she does swim lessons once a week to help with muscle tone.  This summer, she is doing the extended school year and gets on the bus at 7:15 and gets off the bus at noon.  3 days a week she goes for math tutoring in the afternoon for an hour, and she continues to swim as often as we can get to the pool.
First day of summer school

Juli also has hypermobile joints, which means she dislocates very easily.  Last summer she gave us a scare when just by crossing her legs, she dislocated her knee.  Juli has a very high pain tolerance, and hearing her scream like that was awful.  Her knee did pop back into place, but she spent 10 days in an immobilizer and 5 months in physical therapy 2 days a week.  During the school year her knee dislocated twice, and it tends to "pop" partially out of the joint and then goes right back into place.  We keep an ace bandage in her backpack now, so the nurse can just wrap her knee for the rest of the day and keep it stable until the swelling goes down.


Despite all of this, Juli is a little scrapper and she knows how to enjoy life.  She still loves to jump, even though the risk of dislocating increases.   If she can pick any place to go, she will always pick SkyZone.  Every weekend is a costume weekend, and she will pick a different princess to dress up as.  She never gives up.  When she learned to ride a two wheeled bike last summer, she didn't stop until she mastered it (thank Auntie Jaime).  She may be small but she is MIGHTY!

So why am I writing all of this?  Well, yesterday, registration opened for SkyRise Chicago 2017, and we signed up.  We formed Team Juli: the Mighty Minions (she loves minions).  Throughout the summer, I will be introducing you to the members on our team.  Our team needs to raise $3000 in order to climb, which is daunting to us but I know it can be done.  If you have read this far and are interested in donating, please click here.  Thank you!

Who do we climb for? WE CLIMB FOR JULI!



Friday, April 28, 2017

Happy 8th Birthday, Juli...

My punkin horsie turns 8 years old today!  My how you have grown.  Does anyone remember when you when you looked like this? 
3 days old
And now you look like this!


So much has happened to you this year, where do we start?

 Towards the end of the summer, you dislocated your knee.  You have one of the highest pain tolerances that I know of, so when you start to scream, I know that something bad has happened.  Seeing your kneecap on the outside of your leg was one of the weirdest and more frightening things that we have experienced with you.  Fortunately, it popped right back into place, but it still involved a trip to urgent care, several visits to see Dr. Bueche (a fantastic pediatric orthopedist, by the way), some time in an immobilizer, several months of PT and kinisiotape, and a trip to visit Dr. Gaebler at the RIC who we were due to visit anyway.  Unfortunately, due to your low muscle tone, you are destined to easily dislocate from now on, and you experienced a dislocation at school last week.


You started 2nd grade this year and it has been a bit of a struggle for you.  In January they started getting you even more help for reading and now you are almost to grade level, we are so proud of you!  In February you started getting some outside help with math, and we have seen your math skills improving as well.  This summer you have to do the extended school year, and while you were upset at first to find out you had to go, when given the option to ride the bus or be driven by me, you chose the bus because, "Mom, I never get to the ride bus!"  You still want to be a nurse, and your teachers have said that you always volunteer to take the sick kid down to the nurses office at school.


You love your brother so much and while at times he gets annoyed with you always wanting to be around him, he loves you so very much.  Last week when the nurse called me to tell me you had dislocated your knee, you didn't want me to come and get you, instead you just wanted your brother to give you a hug.  So, the nurse brought you up to his class in the wheelchair and Noah came out and happily gave you a hug.  


You love your daddy so much and he makes sure that every year when Chick-Fil-A does "Daddy-Daughter" Night that the 2 of you go to it.  He also makes sure that the two of you always go to the school dance every year, because you look forward to it so much.  

This year, for your birthday, you asked if you could get your ears pierced.  Your dad and I had been talking about it for a while and we knew we couldn't take you anywhere that used a piercing gun because of your sensory issues.  So, we took you to the piercer who had done my daith piercings (yes, we took her to a tattoo and piercing parlor).  That was the best decision.  Barron took good care of you, letting you take your time picking out your new earrings.  Then he explained what he was going to do and showed you how he made sure everything was clean.  While you cried for a minute, your ears didn't swell or turn red afterward.  You said your ears didn't even hurt once he was done with the needle.  We were so proud of you!


Happy Birthday, Juliana Rose!  We love you so very much!
Our Fashionista


Saturday, March 4, 2017

The First Time I Got Lost...

After my brain injury I went to see a doctor, alone.  I was dumb, I should have taken someone with me, but I was sure I could handle a regular appointment.  I was wrong.  The doctor made me feel so stupid.  I was having difficulty finding words, counting, and performing simple tasks that I was asked to do.  When he gave me a map and told me to get myself to a certain medical facility for an MRI, I was confident that I could drive myself there.  I was always able to read maps well and didn't think I would have any issues with getting myself there.  That was my second mistake.

I became horribly lost on my way there.  Remember, this is in 2002, not everyone had cell phones or gps.  In fact, Ryan and I shared 1 cell phone between the 2 of us, and fortunately I happened to have it that day.  I called him crying, telling him I had no idea where I was.  Ryan looked up the roads on mapquest and tried to guide me back to where I was supposed to go.  Little did he know that I couldn't even follow his directions.  I called my dad- who was in Florida with my mom for my cousin's wedding.  He couldn't help me either, but he had my mom calm me down.  Fortunately I was in the car by myself, so no one except for me heard all the swear words that I was saying.  I ended up stopping at a police station and a police officer got me to the right hospital- where Ryan was waiting for me (he left work to try to find me).  I think that was around the time we realized that I wasn't going to be the same again.  Now, I have to look at my hands to see which one makes the "L" when someone tells me to go left or right (and yes, I'm embarrassed to admit that).

The second time I got lost happened this past fall.  I honestly didn't think it could happen to me again.  We live in the age of technology.  We were leaving the Rehabilitation Institute of Chicago after Juli's appointment with her amazing doctor that we have seen since she was 1.  I have made the drive to and from the RIC countless times, and it's an easy one.  You take I-55 to Lake Shore Drive, take a left on E Chicago Ave, a left on N Fairbanks St, and a left on Superior St and it is right there.  I honestly don't know what happened when I pulled out of the parking lot to head home.  All of a sudden, I realized that nothing about the direction we were driving looked familiar to me, and I knew I had screwed up.  In my head I started saying all sorts of swear words (I couldn't say them out loud because I had both kids in the car), and I had to have Noah dig my cell phone out of my back pack, unlock it, open up Google maps- wait for it to find a signal because of all the skyscrapers, and hit the home button that I have programmed into it.  Then we went for a "tour of Chicago" as we drove home, which is not something I wanted to do just before rush hour started.  Eventually we found our way back to I-55 and made it home.  It was a reminder that I still can't rely on my brain memory to get me to and from locations.  It also confirmed to me, why I want to live in a wide open area when I retire- I can not stand the city!

Friday, March 3, 2017

Happy Birthday, Noah!

My Baby Boy is 10 years old today!  What?!?  When did that happen?!?  It seems like yesterday we were bringing you home from the hospital.  This year you started 4th grade and you were so excited because you got to have your kindergarten teacher again.  Every day you walk your sister to her class before you go to your class, already a gentleman at 10 years old!

10. This year you put together a team of friends and entered into the "Battle of the Books".  You made sure you knew your book backwards and forwards before the competition began.  Even though your team didn't win, you had a good time participating and are looking forward to competing again next year.

9.  You have one of the most creative minds around.  Your room always looks like a bomb made of Lego's went off, because you are constantly creating or building something new.  The other week you made a zip line for your lego guys from the top of your bunkbed to the floor, and while I almost strangled myself on it, I was still impressed by your building ability.

8. We let you watch the movie, "Sully" with us, and it has become your new "Titanic".  Now you are interested in everything that happened in the Miracle of the Hudson.  You made sure we watched all of the behind the scenes features after we were done with the movie and you are still talking about the movie.

7.  You love dogs and have joined me in the push to add a 2nd dog to our family.  Last weekend you realized that Buster wouldn't live forever and it sent you into tears.  You told me you would go with me to watch, "A Dog's Purpose" so we could do the "ugly cry" together.

6.  This past fall, you learned how to mountain bike and joined me at the bike park doing the different hills.  You didn't let falling off your bike deter you from the park and I look forward to going back there this summer.

5.  You joined your cousin, Liam, and did "Man vs Wild" at camp this past summer, which involved you spending the week living up at your cousins.  While you got a little homesick from time to time you had a great time with your cousins and being out in nature.  Now one of your favorite things to do is to see what new video Coyote Peterson uploads on Tuesday, so we can discuss it.

4.  You are finally going to join the swim team.  After being recruited to join the swim team since you were 7 years old, there may finally be time in our schedule for you to be able to join the swim team.  You have been working so incredibly hard building up your endurance and perfecting your turns, because you love being in the water.

3.  You love to sing, even though you have your momma's singing ability.  Sorry, kiddo, we were not made to be singers, but you keep belting out those songs in the shower or in your room or wherever you are, we LOVE it!

2. You love your family members with all your heart.  You love to see your cousins, aunts,  uncles and grandparents whenever you can.  You love to cook and play video games with your dad, read books and play games with your sister, and create and play your guitar with me.

1. You love Jesus with your whole heart.  God gave you a compassionate heart and you have the desire to want to help everyone who is hurting.  We love that about you.

Happy 10th birthday, Noah James!  We love you so very much!

Wednesday, March 1, 2017

Confessions From a Brain Injured Introvert..

March is Traumatic Brain Injury Awareness month,  I experienced my brain injury in October of 2002, so this year it will be 15 years since it happened.  People have told me that they can't really tell now that I have had one, and I attribute that to what I have learned since it happened.  So, what have I learned in the past 15 years?

First of all, what a traumatic brain injury is. A traumatic brain injury is usually an event similar to other injuries, but that is where the similarity ends.  One moment the person is normal and the net moment life has changed, sometimes dramatically.  In most other ways, a traumatic brain injury is very different.  Our brain defines who we are, and a brain injury can affect all aspects of our lives, including personality.  A brain injury is different from a broken bone or a punctured lung.  An injury like that limits the use of a specific part of your body, but your personality and mental abilities aren't changed.  Brain injuries do not heal like other injuries and no two brain injuries are alike.  One of the results of a brain injury is that the person often does not realize that a brain injury has occurred.  That was me, I knew I hit my head badly but until Ryan pointed out that I was repeating my words and slurring my speech, I didn't think anything was wrong with me.

I was already an introvert before my brain injury, but afterwards, I became even more introverted. Sometimes people think that I am being anti-social or a snob because I don't want to go to their gathering/party, but that is not it at all.  It all has to do with the brain injury.  They call it the "Meijers Effect", and it has to do with the brain becoming overloaded and not being able to process all the information that is being thrown at you.  When my brain gets overloaded, I can't concentrate or focus on what I am trying to do.  I need to get out of the situation and get into a quiet area where I can process information.  At the beginning, I couldn't even go into our "married couples" Sunday school class until the class had started, because all of the conversations going on around me would make my brain shut down.  The same happened with going into the sanctuary at church.  I would have to wait until everyone was seated and church had started before going in to sit down.  Today, if I'm having a bad brain day or had very little sleep, I still have to slide into church at the last minute and sit down.  This is also another reason why I try to avoid large groups of people, I can't focus on the conversation that I am currently having if there are other groups of people having conversations around me. If I wind up in that situation, it exhausts me because I'm so focused on what the person is talking about that my brain shuts down when it is over.  I would love to be in a group of people and not get overwhelmed, and it's easier for that to happen in the summertime, when I haven't been teaching all day.

I have been asked why I can teach but I can't do large groups.  I will be honest with you, it is a totally different situation.  When I am up in front of the classroom, my students are listening to me, taking notes and asking questions when called upon.  It isn't one big free-for-all.  However, lab days wear me out.  Students are moving at various paces through the lab and I am bombarded with questions left and right.  On those days, by the end of the day I want to change my name and by the time I go home I am mentally exhausted.  It is even worse if it is a brand new lab that I have never done before.  When that comes up, I always make sure I do the lab on my own so I can try to anticipate any questions that might come up during the lab and get them out of the way when students are sitting in their desks prior to going back into the lab (I am not always successful at that).

Something that I still struggle with is being easily distracted when I am working/grading.  I usually need to be alone or if I am in a group of people I will have to put on headphones and music (some people think that I am a snob, but what I am trying to do is stay focused).   I can waste time with the best of them if given the opportunity, but most of the time I choose to focus.  

I also have no filter anymore.  The phrase, "think before you speak," carries a lot more meaning for me now, especially when I am tired or if I am angry.  At the beginning, I used to just blurt anything that came into my head and I hurt people because of it.  15 years later, I have more control.  I still am a "blurter" but I have learned to slow down my tongue and think before I speak (Ryan may say differently, however).

I have learned to compensate for having a damaged short term memory.  If I have to remember something, an appointment or meeting, it goes into my phone (it used to be my color-coded calendar before I had a smart phone) with a reminder that will pop up when it's time.  A few days before my brain injury, I had been in a good friends wedding.  I have no memory of that and it is really weird for me to look at pictures of me at the wedding and have no memories.  I also have no real memories of the 2 weeks after my brain injury, and if I do have any they are fuzzy.

All in all it has been a learning experience for Ryan and I, and our relationship has grown stronger as a result.  Honestly, I wouldn't be where I am today if it wasn't for the support of my family and close friends (you guys know who you are).  The brain injury may have changed me, but I didn't let it define who I am.  Something I would like you to remember if you have made it all the way through this blog, is that a brain injury isn't a visible injury and a person may appear fine on the outside but on the inside they are not.  They still need your love and compassion.