Another Post from the warped mind...

So, I said I'd elaborate more on life with our crazy house. there's so much to say I'm not even sure where to begin. 

Sorry - had to take a minute to put one in time out and fix another one's broken toy.

So, Way back when, Darren and I met on the old chat program ICQ. In 6 months we were married and living in Calgary. We were there for abotu 8 years and decided it was time to pick up and move to a smaller town, somewhere where we could raise our kids and we could feel comfortable with them playing outside. Coinciding with our move my grandfather passed away and that's how we ended up here. Gramma needed our help as much as we needed out of the city. In that time we had 3 wonderful children, Madyson, Mitchell and Lukas. Mitchell is the one I'd like to speak most about in this post, as there are so many people who don't know about his disease and too many are scared to ask the "tough" questions. 

Mitchell was born at Peter Lougheed Hospital early on Sept. 22, 2007. Although everything seemed normal aside from these strange ash leaf looking spots on his belly, everything was far from normal. At the tender age of 4.5 months he began to have seizures. I recognized the very first one as a seizure and off we went to the Alberta Children's Hospital. After over 12 hours there we were released with zero hope and even less faith in the hospital itself. We ended up going home only to turn around to go to Peter Lougheed because he had fallen asleep and then woken up with another round of seizures. After a few hours there, they ended up admitting us and through the course of the next couple days it was discovered he had a disease that none of us had ever heard of. Tuberous Sclerosis Complex. It is a very complex diagnosis, and even less known to the "outside" world. Hell, half the doctors we see have only read about it in textbooks. 

Tuberous Sclerosis Complex (TSC) is in layman's terms - well, his body doesn't have the ability to fight tumor growth. Yes, he has tumors. How many? We can't count. We know there are 3 in his heart, his skin is randomly covered in them, and there are so many in his brain we can't count them. Don't be sad. Don't say you're sorry. It's ok. Aside from the seizures (which started out with Infantile Spasms and have progressed thus far to absence seizures) and him being a little behind in some areas (speech, Gross/Fine motor skills) he's a regular little boy - with a slightly big head. Ok, not slightly. He's got a noggin. But again, who cares. He's alive. And I will be the first to admit that there were alot of times in the very beginning of knowing his diagnosis I wasn't sure he was going to live. I even told him when we were admitted "If it's too much to go home to God, mommy and daddy and sister would be alright". No words any parent should have to say to their child - but I did. And I'm alright with that. It brought me peace. I asked for a Priest to come in and administer last rights as well - just to know it was done. A Priest wasn't available at the time, and maybe that was God's way of saying he's not done with you, life, and this world yet. Thank you God. 

Life is a daily challenge with Mitch. He is constantly either high strung or absolutely out of sorts. There are Meds 3 times a day, constant physical, occupational therapies and speech. He attends preschool twice a week which has absolutely made a difference in his life. Although I was scared that he wouldn't be accepted because of his behavorial issues,  they have embraced him and he has absolutely flourished. Another blessing. 

Some days are tough. I will be the first to admit. He is difficult is public at times, and "normals" just don't understand. When children misbehave in public people seem to automatically assume that there's a lack of parenting, or that he's just a wild child. Usually his behavorial issues come with extra seizures this day. Those days are tough - on us all. There's extra cuddling and lots of reassurance, and with three kids sometimes we're stretched thin. It's tough - but we've faced the challenge for almost 4 years now and we've never broken stride. This is NOT to say that we haven't stumbled, and maybe misstepped but we try our best - which means we are doing our best for him. That's what matters as parents. 

Daily we face questions that people are often scared to ask. Are the tumors cancerous? Not yet, but they can be. Will he live a normal life expectancy? Well, maybe maybe not. How long will you live? Can he die from heart failure? Yup, he sure can. He must have eczema cause his skin is so rough and awful. Nope - those are tumors. 

It's OKAY to ask questions, I promise you. We will not be offended, we will not look down on you. In fact, when people ask these tough questions we really appreciate it. At least you're trying to understand just a part of what we live with daily. THANK YOU for having the courage to ask those types of questions. (it's kind of fun to watch people squirm too!)

Well dinners ready - I will write more later :D
Cheers
Jen

Good Evening :)

This is my first post of which I hope there are many more. It's late tonight and my mornings come very early so this will be short sweet and to the point!

My name is Jen and I'm 28. My husband, Darren, and I have been married 10 years this April. That's right if you do the math we were married when I was 18. And almost 10 years later Darren and I are still growing together and with our children. Madyson is 7 going on 18, Mitchell is 4 and Lukas just turned one. Madyson is a beautiful girl (and I'm not just saying that because she's mine), she's funny and bright and smart as a whip. Mitchell is a shining light given to us from God. He's 4, and has battled with a little known disease called Tuberous Sclerosis Complex. I will explain more at a later date. Lukas is such a bright little guy, my baby, although not so much anymore. He's growing too quickly for us (okay, me especially) and he reminds me just how quickly life changes.

A little about myself. I have been a Volunteer Firefighter for about a year and a half now and I absolutely whole-heartedly love my job. I wish it were full time. It brings me such pride in my community and my fire department family to be able to help people in need. I have been there myself and although I might not remember my Angel's names, I will always remember their kind actions at my time of need - and I want to repay that. My Husband is a supervisor at the local grocery store here and is my hero. He has been with me through so much. There are no words to fully express just how deep my love is for this man. He is a rock and the reason for much of my sanity. I work for a local Safety Company, and although I just started I do completely love my job. I signed up to return to school next month for my EMR. Although it's a big responsibility I will take on my challenges as I always have. Head on and full force. I recently received tickets for my TDG and WHMIS. I am hoping to get my H2S certificate as well as SCBA etc. I took the Level I Firefighting course this past year and am awaiting my results on my test.

The purpose of this blog is to enlighten, enrich, teach and share a little insight into a world most will never venture into - on several different levels.

I am a full time mom, although I work, I am ALWAYS a mom.
I am a special needs mother, and I am VERY proud of that fact. Mitchell has brought a light into my world like I would have never expected and I am so very thankful for every second he is on this earth. He has so much love for his family, and reminds us every day just how precious life really is.
My children and husband are my reason for breathing every day. If it weren't for them I would be a person with no ambition not really caring about anything. They are my reason for being.
I am an advocate for TSC. PLEASE ask questions - and I will get more in depth about Mitch's disease as time progresses. But if you have a question - PLEASE ASK IT. I will answer as truthfully and honestly as I can. I know there are some extremely tough questions - but it's ok. I assure you. I have heard them all before. Human curiousity is an amazing thing. And yes, it's ok to ask how long his life may be. I promise I won't get offended. The answer I will always give you is "How long will you live?" Because life can end at any moment - and none off us know when we will go. Same as him. See? Easy peasy :D

I'm sure you're bored to death of my ramblings already, and if so I apologize for being so long winded. I promise that posts will get more interesting as time progresses. I hope that I haven't bored you to tears yet and invite you back into my little slice of insanity I call my life.

Thank you for taking time out of YOUR day to spend with me and my insanity!!!
momma