Tag Archives: siblings

Spilled Milk, the “R” Word, and Trees

Day 19 of Guest Blogging for TSC Awareness

By guest blogger Josh Krischel  (Dwight, Illinois)

Josh and his parents.
Josh and his parents.

Life is full of lessons, as well as people who teach us these lessons, instructors if you will. When reading that first sentence you might have thought of an elder who has given you some words of wisdom, or maybe a code of life your parents always told you to live by. However, when I think of the most important lessons in my life, I don’t think of my grandparents, or my dad teaching me how to mow the lawn. Nor do I think of a single thing I’ve ever learned in school. What I do think of is the much more important things I’ve learned and continue to learn from my two absolutely amazing brothers who have TSC, Adin (13) and Mason (17). Adin and Mason are continuously reminding me to be patient, tolerant, and above all things to just enjoy the many little gifts I receive from God each day. Every morning before school, when I begin freaking out because of my intense issues with being late to events, I just slow down and take a look at one of my brothers and it just calms me down and puts a big smile on my face. Every time a situation such as that arises it always reminds me that I would never, ever, under any circumstances wish for my brothers to be any different from the way they are.

I’ll start off with a quick intro into the life of Josh Krischel. I went to Dwight Grade School for 8 years, and am currently enrolled as a freshman at good old Dwight Township High School(DTHS).  I try to, and am fairly successful at, keeping a 4.0 GPA. I play football and am part of the scholastic bowl and mathletes teams, and I also throw shot and disc for the track team. As well as trying to balance my life between all these activities and school work, just like any other teenager, I also get a bit of chaos thrown into the mix. However a bit hectic at times, I suppose chaos is a bit of a strong word. Considering I don’t know what I would do with my life if it wasn’t how it is today.

Adin and Mason both have very distinct characteristics that make them both a joy to be around. Adin, who is the higher functioning of the two, loves nature, our puppy Keegan, the weather, and always carries around a watch that has little penguins on it that he constantly looks at about every five minutes just to give us the time. Then there’s Mason who is the most joyful person to be around and always seems to have a huge smile on his face.

Now, earlier I threw out a few things I have learned from my brothers and I’d like to talk about those and how they relate to our everyday life, the first of those being patience. I’ve 553615_3801382325047_2054365817_nlearned over these past 14 years that it really isn’t worth it to get mad over all the little aggravating things in life. Just like the old saying, “there’s no use in crying over spilled milk,” which in our house quite honestly happens more than it probably does in the average household. For the simple reason that Mason, who likes to fill his glass of milk to the very brim, doesn’t have the best reflexes, so he spills quite often. So, every time this happens he just goes to the drawer in our kitchen that we keep the rags in, grabs one, and just cleans up his mess without even a single peep. After watching this happen I often sit there and just think, if my autistic brother, who is very easily upset, can be patient like that then why can’t I? The answer to that question is because I can!! Often I mess something up and begin to get frustrated, and then I just think about Mason, and his ability to keep his eyes dry over spilled milk.

Then there is tolerance, which is something I’ve learned from both my brothers. Often when we go out to eat or just have to go to store shopping, my brothers somehow find some way to make me embarrassed or to cause a scene. Well at least that’s how I used to see it. Now, whenever we are out and about and one of the two begins to say some phrase they’ve heard from a movie or something over and over, I just often let them keep on doing it and continue whatever it is I’m doing. However, in the past year or so, I occasionally even find myself chuckling at them, or even joining in quoting Finding Nemo, Cars, or The Wiggles. As far as that topic goes, having the two of them in my life has allowed me to be very tolerant for all sorts of people, whether it is race, religion, or even just personality. I constantly, day after day, am hearing people in the hallways of DTHS, using the “R” word to call someone stupid. I understand when in the moment of using this word these people don’t realize how offensive it is to some people, that or they just don’t care, but regardless, 99% of the time I will stop whatever I’m doing to call the person out on it for the simple reason that it isn’t ok. Just like how it isn’t ok to call someone a “homo” or a “faggot,” it is just as offensive to anyone who cares for someone with special needs to hear the “R” word.

294883_10200707258115803_180476492_nLastly, the most important lesson my brothers have taught me is to enjoy the little things in life. In our dining room we have a big bay window overlooking a section of our backyard, and every morning Adin will just sit there and look out at the trees and the flowers. However, one morning he seemed very spacey looking out the window. At first I thought he might be having a seizure, so I went over and sat down and asked if he was ok. He responded with just a simple yes.  I then asked him what he was looking at and he said, “I’m just looking at that tree that God made.” Then without a single ounce of hesitation I smiled and looked out the window and sat there for a good five minutes just looking at a plain old tree. This, later in the day, made me realize that I take a lot of little things for granted, and that I need to just slow down sometimes and just take a big whiff of some roses.

If I haven’t made it clear enough already, I love both of my wonderful TSC brothers more than words can describe, and I wouldn’t trade them for anything in the whole entire world. However there is one extremely wonderful, amazing, caring, and loving woman I know that has TSC, and that would be my beautiful mother. She has also helped the cause by molding me into the, not to brag, wonderful young man that I am today (never said I was modest). She has taught me how to be a loving and compassionate person. She also easily undergoes more stress than the CEO of a multimillion dollar company, but somehow she manages to keep us boys in line, and babysit her two-year-old nephew. She is probably the strongest woman anyone could ever have the pleasure of meeting and is probably the biggest inspiration in my life.

So, if there is one positive to look for out of all the troubles of TSC, it would be that TSC carriers are by far the best teachers a person could possibly ever have.

See Josh’s mom’s post here.

Life With Ricka

Andrea and Ricka ice skating.
Andrea and Ricka ice skating.

Day 11 of Blogging for TSC Awareness Month

By guest blogger Andrea Hubert  (Willis, Michigan)

Everyone has their own story to tell when dealing with TS.  I was too young when Ricka was born to remember how things all went.  I only know them as related by our mom.  Ricka’s TS seems to be a random genetic mutation.  However, that didn’t mean anything when our younger brother began having seizures at the age of 24.  It took many months and several neurologists before they could figure out what was wrong.  Finally someone ordered genetic testing, and he doesn’t have TS.  He has an unrelated seizure disorder caused by something in his brain that was triggered by the long term use of Ultram (tramadol) for serious back pain.  No one tells you that a potential side effect of the medication is seizures, do they?

So, back to Ricka.  She is very severely affected by TS, with autistic tendencies, a mental age of about 15 months, and lots of different kinds of seizures everyday.  Both of her hips and her nose have been broken.  She’s had more stitches, staples, sprains, bruises and bumps than anyone else I know.  She used to be able to walk, but is now too scared.  At school they called her “the escape artist.”  She learned how to open doors, and she was so quiet they eventually had to put bells on all the doors in her building.  I think at one point, she wore bells so they could always find her.  Thankfully, she has never disappeared when I was in charge of her.

For me, life with Ricka is just my normal life.  It’s what I’ve always known.  With only 18 months between us, I was too young when she was born to have learned much about life without her.  The things that I’ve learned when dealing with TS have kept me on my toes as I go through my own health problems, back surgery, and further treatments.  I know when to fight and when to stop.  I know to always be ready for anything.  As a child, I always kept a bag packed with enough materials to keep me, Ricka, and our brother entertained for up to several days.  We never knew when we’d be headed to the hospital, and there wasn’t time to waste gathering stuff to do.  We also didn’t know when someone could come pick up my brother and me, so we had to be ready to stay at the hospital too.  Advances in technology have made it so much easier.  My laptop, Kindle, an iPad with movies on it for Ricka, snacks, and a charger for everything is enough for us now.

When we were young, before my brother was born, Ricka was in the hospital so much that I was allowed to walk around the hospital alone pretty often.  Nurses and other staff members recognized me.  My mom is still proud of the fact that I never got lost and could direct other people around.  Maybe that’s one of the things that helped shape my good sense of direction now. Who knows?

I grew up pretty fast thanks to Ricka’s TS.  I have always been her caretaker, and at nineteen, I became one of her guardians.  It’s a scary thing to be in charge of someone else, but even more so when that person is your sibling, close in age, and so medically needy.  Today, almost nothing freaks me out because I’ve probably seen it in my journey with Ricka or the other folks that I’ve been lucky enough to work with doing care for families.  There are positives and negatives to growing up fast and seeing so many things.  Some days, positives outweigh the negatives, and some days it’s the other way around.

I don’t know what the future holds for Ricka.  I do know that she will always be loved and cared for at home by people who love her.  I know that if something happens to our mom, I will be solely responsible for her.  My brother lives nearly 2000 miles away and doesn’t want to be involved anyway.  I know the importance of planning ahead now.