There are a lot of things I'd like to be or do in life. In fact I have a pretty long running list in my head. Some are achievable and some I don't think will ever happen. For instance, I'd love to be a morning person. Life would be a lot easier if I enjoyed getting up at the crack of dawn instead of being woken up by Wade every morning. Who needs an alarm clock when you have a child who wakes before the sun rises? I also want to be organized. You know, like the "perfect" mom in all the blogs and pinned everywhere on pinterest. The one who has pre-made snacks in the fridge, items crossed off her colorful to do list, and an organized pantry with overflowing labeled bins. I'd also like to NOT be a procrastinator, but as you can tell by the lapse of entries on this blog, that doesn't seem to be in the cards either. I've also always wanted to be a runner. In actuality, I think I wanted to want to be a runner. It just seemed like the perfect workout--alone time and cute, colorful outfits and shoes. What's not to love:-) Much to everyone's surprise--including my own--this one came to fruition. I'm 39 years old, and I can finally call myself a runner!
Last summer after a trip to the water park, I declared that I was going to get in shape for Wade's sake. I came home from VA and began Jillian Michael's 30 Day Shred while doing Advocare's 24 Day Challenge. I'm not brave enough to post before and after pictures, but there was definitely a difference. I only lost about 5lbs, but I lost a lot of inches and gained some muscle and endurance. My reward to myself for finishing was a new pair of running shoes. In the heat of the summer, I started the Couch to 5K running plan. I could barely run the 60 and 90 seconds in the beginning. I would come home beet red, sweating like a pig, with horrendous shin splints. But I was determined to run a 5K. Plus, I'd never hear the end of it from Curtis for spending money on shoes that were just sitting in the closet! After a few weeks, my friend Stacey started running with me. Her pace was faster than mine, so we'd start off at the track together, run the neighborhood, and meet back up at the track. It was great for accountability and safety. We ran our first 5K on Thanksgiving.
That's all it took; one 5K and I was hooked. I started thinking towards a half marathon, but thought it might me too lofty of a goal, too soon. We ran The Jingle Bell Run and another 5K in January, then a 5 mile race in February. The next thing I knew, we were counting out weeks on Hal Higdon's half marathon training plan and picking a race! I'll spare you all the details, but there were times in the beginning I didn't think it would pan out. Training is time consuming, especially when you're trying to work around two people's schedules. Wade ended up with the flu at the end of February which earned him a trip to the hospital for five days because of pancreatititis. That next week was spring break, and he and I flew to VA. When all was said it done, I went three weeks without running, and I was mentally, physically, and emotionally exhausted. During spring break, I was able to visit a friend in NC. Keri started running again after she had twins in spring 2012, and she convinced me that I could continue training and be ready by May 5. Sitting on her couch that night, I wasn't so sure. But I'm so glad I took her advice and continued on. Keri was my motivation to begin running, and she was my motivation to finish training and complete my first half. She is most certainly one of the strongest women I know. Not only is she a
military spouse who has survived a deployment with newborn twins and a
toddler son, she also battles chronic pain and has children with health issues that she is trying to sort out. If she can do it, then this mama with fibromyalgia and a child with a disability can do it! Thank you Keri for being my inspiration. You'll never know just how much you've influenced and encouraged me.
May 5, 2013--The Heels and Hills Half Marathon; the day my mom said she would've never bet on and the event Curtis said had he been in Vegas, he would've bet the house I would never do. I completed my first half marathon and I achieved my two goals--I didn't come in last and I finished in under 3 hours! Finishing that race was the most exhilarating thing I've ever done. This body ran 13.1 miles!!!! I can't even describe the sense of accomplishment and pride I felt crossing that finish line.
All of that being said, saying "I'm a runner" is still a hard pill to swallow. It's hard not to compare myself to others. I'm not fast; I'm not in super shape; I don't "look" like a runner. BUT, I'm faster than I was last August; I'm in better shape than I've probably ever been in; and what does a runner "look like" anyway? I'm finally doing something good for myself and it's an activity I can share with Wade. We just ordered him an adaptive jogging stroller so he can run with me.
So, a half marathon has been completed. It's one thing I can scratch off that bucket list. As of October 27, 2013--God willing--I'll be able to scratch a MARATHON off that list. Again, thanks to Keri's encouragement, I'll be running the Marine Corps Marathon for Hope for the Warriors. If you'd like to donate money to this wonderful organization, please visit my donation page here. I would really appreciate your support. Also, please keep me in your thoughts during my training. Training kicks off this week! YIKES! Thank you!
The official part? Our family has grown by one. The unofficial part? It won't be legal for six months. On March 23, 2013, a bright eyed, sweet, innocent, and energetic 3.5 year old little boy came to live with us. In a brief instant, our lives were forever changed.
For a couple of years, Curtis and I have discussed adoption. We've questioned baby or toddler; child with or without a disability; foster to adopt through child protective services or adopt through an agency. We never quite decided on anything. I prayed many times for God to just place something in my lap. As it turns out, that's exactly what He did. We didn't have to have answers to any of our questions because He made the decision for us. (Not that I didn't question His plan...don't we always tend to initially question Him when we're uncertain?)
Jordan comes to us from a family member. In order to respect the privacy of all parties involved, I won't go into the details. Suffice it to say, we have known Jordan since he was born, although we (Curtis and I) have not spent a lot of time with him to date. However, he and Wade have been together a lot, and they get along well.
We are beginning the process of a formal adoption. Both the mom and the dad have to sign over their rights. Once this is done, they each have only ten days to change their mind. Because we are not immediate family, we have to go through home studies and background checks. After this is approved and Jordan has been in our home for six months, we can go before the judge and make this all legal.
The past month has been quite challenging and different for us. Our normal--raising a child with a disability--just got turned upside down. Going from having one child who is non-verbal and uses a wheelchair to another child who walks, runs and talks quite well is...interesting! One is not harder or easier than the other; they both have their unique challenges. One of my least favorite things to do is feed Wade. It seems to take forever! Seriously, I'd rather clean the toilets! It's so nice to be able to put a plate of food in front of Jordan and he can feed himself every.last.bite. On the other hand, Jordan can make our house look like a tornado just went through in a matter of minutes. We've never had to worry about stepping on toys in the middle of the night before. It's actually quite a nice balance. I don't feel so locked in "disability world" now that we have Jordan; I have a healthy balance of both worlds. I'd be lying if I said it doesn't hurt my heart a bit to see Jordan running and playing and asking all those curious questions that I know are running through Wade's head. But thankfully, those thoughts only last a brief moment as I watch Wade laughing at all the silly things Jordan does. I also know that Jordan is going to be a more accepting and considerate person growing up in our home as Wade's new brother.
We decided that the boys would share a room, so we invested in bunk beds; a twin over a double. We've been having a lot of trouble with Wade sleeping through the night since he got his g-tube last June. After months and months of MANY middle of the night trips to reposition Wade and trying to figure out what was going on, I think we've discovered the problem--night time reflux. Since we were getting new beds, we decided to get a foam top mattress (similar to a tempurpedic bed) with an adjustable base so that we can incline the head and/or foot of the bed as well as set it to vibrate. Dare I say it out loud, but Wade has not woken up the past four nights!!! Jordan goes to bed a lot easier when it's time as well. He LOVES the top bunk!
We're still trying to get into the groove of things around here, but at least our house is finally put back together after switching bedrooms, putting down new carpet in the two bedrooms, selling some furniture and just reorganizing to make room for the new little guy! The first week was a little rough, to say the least. Jordan definitely tested his boundaries and limits, but it was amazing to see his transformation in just one week. We've gone from running off out in public, fighting bedtime, etc. to him telling me, "I don't want you to count to three," when he knows he's making the wrong choice. To be honest, while I knew this was the right decision, I did question whether or not I could love him as my own. It was my biggest concern, and I let his mom know this as well. But after just a few days with us, I knew it was possible. Jordan has filled a certain hole in my life that I didn't know I had. While it's not always easy, and we're learning how to raise a typical child as we go, our decision just feels right.
Oh! And for those who have caught on to his name...his first name is the same as our last name. We're not too sure what we're going to do about that. He certainly can't be Jordan Jordan for the rest of his life! But since that's our biggest worry at this point, I'd say we're truly blessed!
How can we possibly be at the end of December? How can we possibly be at the end of December and I haven't posted anything about Wade's kindergarten experience?!?! Although Wade has been in school for two years, it still didn't make the first day of kindergarten any easier. It's still such a huge sign that he's growing up!
Wade is in a general ed classroom with about 20 other kiddos. He LOVES it, and better yet, the kids love him. At the beginning of the school year, Wade was sent home early for a fever so he missed the next day as well. The next day in his backpack was a card from one of the sweet little girls in his class. Notice how she captured his wheelchair! Such a little artist! The day after that, he got yet another card from another little girl. I think we're going to have to keep an eye on him. He seems to be quite the lady's man!
Wade was also invited to his very first birthday party that didn't involve me knowing the parents. That was a HUGE deal for me. It was a sign to me that he is building true and authentic friendships. That's the great thing about kids. They're able to see past disabilities a lot easier than adults. It makes my heart happy when I pick Wade up after school and he's surrounded by other kids. They include him because they want to, not because they have to.
We also decided to try another season of t-ball this fall. Wade ended up on a different team than the one he was on in the spring. This season was actually t-ball and not blast ball; meaning you play for 3 outs or 5 runs and there are umpires! So, a real game! We all had a great season and again, the kids were fantastic with Wade. The adults cheered him on just like they did every other kid on the team. The kids even helped Wade with fielding and hitting sometimes. It was definitely a team effort to make the experience successful for all.
Wade developed a pretty good friendship with one of his teammates. Easton told his mom he wanted Wade to spend the night with him. I thought having Easton at our house was probably a little more practical. As a result, Wade had his first sleepover. I think Curtis was more excited than Wade! After practice, they went out for pizza, came home and built a fort, and then fell asleep watching a movie. The next morning, they got up and went to breakfast and headed to Cabella's to do some "man stuff". They bought some nerf guns and had fun with those and attempted to have a wheelchair race. Wade ended up head planting into the grassy curb, but it didn't phase him at all. When Easton's mom asked him what his favorite part was, he said there was too many things to name! So, I'd call the first sleepover a success. I see many more in our future.
As for actual kindergarten, well, it's been a learning experience for everyone. Wade's team of teachers and support staff are absolutely wonderful. They are open and eager to try different approaches so that Wade can be included like all the other kids. At the beginning of the school year, Wade's teacher told me she took him down the slide as another teacher stated, "Are you sure you want to do that? What if he gets hurt?" The teacher's response was, "I can guarantee you mom would rather him get hurt than sit here in his chair doing nothing!" How great is that??? A teacher that knows and understands that I want Wade to experience life, not just be on the sidelines. One day she texted me and told me she decided to pull out some instruments because he gets such a kick out of people knocking on the door. Turns out Wade was able to use the instruments to do "soft" and "loud" and then he used the instruments to demonstrate syllables in words. Of course Wade uses his head to "play" the instruments, but I'll take it! I love a teacher who thinks outside the box. I think she needs to move up to first grade with him next year:-)
I don't want to lead everyone into believing that this school year has been easy, because it hasn't. This inclusion thing is tough, especially with a kiddo who is as physically involved as Wade. However, through much open and honest communication with the district, I believe we are all beginning to land on the same page. My advice to those who are on this same journey is to stand your ground and do what's right for your child. There is a way to get your point across without ruining relationships in the process. This is a difficult and emotional road. There are times I want to give in and give up. But I keep trudging on for Wade and for those coming behind him as well. When I see Wade's face light up when we talk about school, I know the hard work is worth it.
Inclusion communicates something more than "integration". It means people participating in families, schools, (and classrooms), in work places, and in community life. "Inclusion" implies that people are welcomed, that each person reaches out to include another person. Inclusion is different from "letting in" or "adding on." Inclusion conveys the idea that we appreciate each other, that we see each other's gifts, that we value being together. Inclusion speaks to the importance of relationships.
It's been a long time. A really long time. I've had a lot of great things to post about, but the not so great things have invaded my thoughts and my time. I hope to get back to blogging soon, but for now, I thought I'd share our vision for Wade. I think it's so important to have a vision that is written down that can be shared with others. This way everyone knows what your expectations are. When you're questioning certain decisions, you can look back at your vision and ask yourself what is going to best help you accomplish this vision.
I've known about vision statements and student portfolios for awhile now. I talk about their importance and encourage others to come up with a vision for their own children. I've just failed to sit down and write one myself. But as always seems to happen, I found myself in a position where I really needed a vision. I needed a way to articulate to those who are in the position of educating Wade what we want and expect for him. I shared this vision with everyone at the table at our most recent ARD meeting last week, and I plan on reading it before every ARD meeting in the future. I think it's a quick and easy reminder about why we are gathered at the table and who we are there for; we are there for Wade.
For more information about vision statements and student portfolios, visit Texas Project First. They have some sample portfolio pages. I used wording from a few different samples and molded them into our vision for Wade.
Our Vision for Wade
We have a vision for
Wade; a vision that goes far beyond the walls of a school building.Our vision started out pretty simple,
for Wade to be included.As the
years have flown by our vision has begun to evolve into something even bigger.Not only do we want Wade to be included
in his school, neighborhood, and community, we also want him to be a
contributing and active participant in his own life.
It is also important to
us that Wade be surrounded by people who love, support, and care for him in a
way that fosters his independence without creating a sense of “learned
helplessness”.We want Wade to be
a part of a community where differences are accepted and attempts are made to
educate those who may be fearful or ignorant with regard to the culture of
disability.We believe that
language and words are powerful and see value in using People First Language
where Wade as a person is put before his disabilities.By modeling this language, we are
attempting to eliminate the prejudice that surrounds those who have a
disability while encouraging others to see past the disability.Wade is the amazing little boy he is
because of his cerebral palsy; it is a part of him, but it does not define him.
As Wade’s parents, we
are an integral part of the team that supports him and his education.It is vital that the lines of
communication remain open and that the staff working with Wade support our
vision for him.We cannot do this
alone.It will take all of us
working together to make school a place where Wade can be successful and thrive
both academically and socially.Comanche Springs Elementary is part of the foundation Wade needs in
order for him to achieve whatever dreams he desires.We are confident that when given the same opportunities as
every other child, Wade will find his voice and be successful in school,
community, and life.
identity is the product of my history. My history is that of a person with
cerebral palsy. If I didn't have cerebral palsy, I wouldn't be who I am; I'd be
someone else. Frankly, I like who I am, I like my history, I like my life. I'm
not sure I'd sacrifice who I am for the sake of normal movement and speech.” ~
I am a former special education teacher turned stay at home mom. Over the past year and a half, I've quickly learned that this is one of the hardest--but most rewarding--jobs I've ever had. Due to a traumatic birth, Wade now lives life with a diagnosis of Cerebral Palsy. Although our life presents us with different challenges than we anticipated, I wouldn't change it for anything. This blog is a documented journey of our experiences down this rocky road that seems to have many forks. The paths we choose when we come to those forks sometimes seem to be the less traveled routes, but we take them anyway in hopes that it will make a difference in Wade's life, as well as the lives of others. Please join us and share your thoughts.