I start this blog by admitting my epic blogging failure. As 2023 dawned, my plan was to take a day off from work each month and dedicate it specifically to blog writing. I was hoping to write at least one blog a month. I had all these ideas swirling in my head that I wanted to take the time to write about. Well, that plan crashed and burned before take off. As is often the case, real life intervened. Here we are almost into June and I’m writing my first blog of the year. Oh well, better a late start than no start at all.

One of the main reasons for my lack of blogging progress this year is because life has been exhausting on the Owen front. Actually, the added stress began last summer when I got a call from one of Owen’s doctors sharing the results of a recent hip x-ray Owen had done. It all stared innocently enough with a visit to Owen’s PM&R physician. This stands for physical medicine and rehab for those who are not familiar with the acronym. This is someone we added to our repertoire years ago, first for botox shots to deal with Owen’s spasticity and drooling issues. She’s the one we turn to for Owen’s orthotics and when he needs to be fitted for a new wheelchair, among other things. At a visit we had with her last summer, she recommended getting a hip x-ray simply as a baseline to see how Owen’s bones were doing. We learned years ago that Owen is at a higher risk for bone issues due to the medications he takes and because he’s non weight bearing. She didn’t think there was a big hurry to do this, but I decided we should tackle it right away, mainly so I wouldn’t forget to do it. As a working mom with a kid that adds a lot of moving parts to my day, I thought it best to tackle this while it was still fresh in my head. Besides, I had vacation time coming up, and that is usually what vacation time is for; to get my to do list tackled.

So, I immediately make the appointment and we went for the hip x-ray. I felt a great sense of accomplishment checking that off my list and didn’t give it a second thought, until receiving a call from Owen’s doctor shortly after the x-ray was taken. I’ve learned it’s never a good sign when a doctor calls you to deliver test results, and this time was no exception. Apparently the results of the x-ray even shocked her. Owen had osteoporosis. She said she was surprised he hadn’t already suffered a fracture. She said she was going to refer us to our local children’s hospital to have Owen evaluated by a physician who specialized in treating kids with osteoporosis.

Three months later, we saw the bone specialist. While our doctor seemed really alarmed at the x-ray results, the bone specialist didn’t seem overly concerned. She explained the treatment involved and also stated that normally they didn’t begin treatment until the child suffered a fracture. Well, that seemed kind of extreme to me. Wouldn’t you want to avoid it from happening in the first place? Despite this comment, she said enough things that reassured me that starting treatment for this wasn’t something we needed to do immediately. Owen is already on a lot of medication, and if we could avoid more at this time, I was good with that. The plan was to see her in a year to assess how he was doing at that time.

Fast forward to late January of this year. Most late afternoons during the week, you will find Owen and me in the basement of our home. I finish my work day in my home office after picking Owen up from school. He spends that time playing and watching TV. Just before signing off for the day, I checked on Owen and he was slumped over one of his toys taking a little siesta. This is not unusual for him. Sometimes a man needs a little break from playing for a quick cat nap, especially on a cold, dreary January day. Once I finish my work day, Owen and I will go upstairs to the main level of our home to begin our evening routine. While Owen can’t walk, he can bear weight on his legs, which is a great help to me in moving him around. On this night, however, he refused to put any weight on his leg. Since he was tired and he is a teenager, I just thought he was being difficult. The next morning, however, the same thing happened; he would not put any weight on his legs. Thinking back to the night before, I recalled he wasn’t scooting around on the floor as much as he normally would – which is how he gets from one place to another – so I became concerned that his lack of weight bearing was more of an issue and not just him being an ornery teenager. We called our PM&R physician for an appointment to see if she could figure out what was going on.

Because of his unwillingness to scoot, his doctor thought he had a hip issue and sent us for a hip x-ray. The x-ray confirmed that his left hip bone was about 50% displaced and referred us to see an orthopedist. But wait, there’s more! A few days later, before we even had an appointment with the orthopedist, I noticed that Owen’s right ankle was bruised. I shared this with his PM&R physician, and back we went for another x-ray, this time for his right lower leg. The x-ray results confirmed a broken bone in Owen’s leg. A day or two after the fracture was confirmed, we were at the orthopedist’s office getting a bright red cast put on Owen’s leg and adding a new doctor to our ever growing team of specialists.

We learned many things as a result of the broken bone incident of 2023. We learned, or rather it was reaffirmed, that it sucks to have a kid who is non verbal. While he broke the bone on my watch, I have no idea how it happened or even when it happened. I know it had to have happened between 3:00 PM and 6:30 PM that day, but that’s all I know. I know some of you are thinking that he must have cried or screamed when this happened because it must have hurt. No such luck. Owen doesn’t do either. The last time he cried he was 4 years old. I’ve told him many times it would be super helpful if he would do these things for momma so I would know he’s in pain or sad, or whatever, but as of yet, he has not obliged me. As you can imagine, it feels really bad when doctors are asking you how something happened to your kid and you can’t tell them. Another giant step away from my Mother of the Year.

The broken leg incident also taught us that we are not getting any younger and we need to put the pedal to the metal as far as getting our life in order to deal with an ever growing Owen. The aches and pains in my joints and back associated with picking up 80ish lbs of dead weight changed our perspective in terms of modifications needed for our van and equipment we’d need at our house to take care of him in the future. So lucky me, soon I get to trade in my current van for a new wheelchair accessible van. Every girl’s dream car, right? So the process of getting the new vehicle and home modifications have begun in earnest. Nothin like a broken bone to get you to stop hitting the snooze button and spring into action. We’re lucky we have community resources that help us with these things, but getting them can be a long, drawn out and exhausting process.

So you might be asking yourself, what about the hip? In hindsight, we’ve noticed that Owen has been reluctant to put weight on his left leg for some time. My guess is the hip has been an issue for awhile and we just weren’t aware of it. Originally, we were going to schedule the surgery right away, but since it doesn’t seem to bother him, we’re going to try to get all the home modifications done before we tackle that. So long story short, we’re saving that fun for another day.

As the new school year dawned, it was time again to decide if we’d participate in cross country. While I’m always a bit apprehensive about jumping in because of the time commitment, among other things, the decision this year was easier. Afterall, Owen had a sweet new ride that needed to log some miles, and it was the beginning of his last year of middle school. It didn’t seem right not to finish out middle school the way we had started it. And so, we took the plunge.

Now about Owen’s new ride. Late this past summer, Owen got a Benecykl, which is actually a bike trailer that doubles as a jogging stroller. It’s nice for Owen because he can stretch out his legs, which he was no longer able to do with his old jogging stroller. I love it because it came with a proper cup holder, which his other jogging stroller did not have, and more storage for all the things we need when we go running. It also looks pretty cool, bright cherry red which my husband insists is Owen’s favorite color. It’s a little tricky, however, getting it in and out of our van when we take our show on the road, as it doesn’t fold up so compactly like his former jogging stroller did. I’m sure I looked pretty hilarious trying to get it in and out of the car at meets.

The first week of the cross country season I was on vacation from work, so we were able to go to practice everyday. It was fun seeing some of the same kids from the previous years. Back again was one of our friends from last year, the girl with the remarkable memory for birthdays. It had been a year since I saw her and she remembered my birthday for the most part. I say for the most part because she had the day and month right, but not the year. I might not have corrected her on that, except she made me two years older. I could not have that. During the first few weeks of practice, she peppered me with countless questions about Owen. Can he walk? Can he talk? Is he good at math? The last question stumped me because I think he knows more than we know, but it’s hard to tell because he can’t communicate with us. She decided that Owen was good at math.

For some reason, and I can’t put my finger on why, I didn’t feel as uncomfortable at meets as I did in the past. It didn’t feel like everyone was staring at us so much. I’m thinking that perhaps that was the case because some of the kids participating from other school would have seen us last year, and as such, we’re weren’t such an oddity. Also, there again was the mother/daughter team like us from another school. At meets, I felt so much support from the spectators who cheered us on. It also seemed like we ran into so many people we knew this year – friends, co-workers, neighbors – who came to watch their kids or grandkids compete. We were also blessed with incredible weather for every meet, except for our last meet which was hurried because rain was coming, but fortunately we beat the rain…and the bees. Apparently there was some drama during the boys race at that meet because there was a bit of a bee situation and some kids got stung. Luckily our slowness paid off this time, because we missed the bee drama.

Each year I’ve participated with Owen on the cross country team, I seem to inadvertently have a deep conversation with a middle schooler. This year was no different. On a cool down lap during practice one day on the high school track, we were walking along side a fellow 8th grader who inquired as to our time. I told him how we did and then I asked him how he did. I was impressed with his time, but he wasn’t happy with it because he was two minutes slower than he had been last year. I tried to be encouraging, asking him if he grew or gained weight, which he said he did. I told him not to worry because he was probably slower because he wasn’t accustomed to his new body yet. We also talked about school and how he was worried about going to high school because there would be more homework. I tried to encourage him again, telling him that new things can be scary and that I was sure he would do great next year. After our cool down lap we walked back to the middle school with our new friend. He asked to push Owen for awhile because he was fascinated with Owen’s stroller. We then got into a discussion about Disneyland, where he had recently been, and he talked to me about all the rides he went on there and which rides he thought would be safe for Owen. Our next practice we had to get into groups for a scavenger hunt. The boy we had talked to on our cool down lap came to stand by us to be on our team. We had done this activity before the previous year, but usually ended up getting placed on a team. This time someone chose to be on our team. I have to say that felt pretty good.

So next year Owen goes to high school and if you are wondering if our cross country career will continue there, my answer is an emphatic no. The distances will be longer, and the kids will be much stronger and more serious about the competition, I imagine. Also, I am not getting any younger and Owen keeps getting bigger. This year seemed much tougher than years past, which was disheartening. I thought maybe I was getting too old to run with him. I was able to put it all in perspective when I thought back to how much weight Owen had gained over the past 3 years of our cross country career (25lbs). Given his weight of 75ish pounds coupled with the weight of the stroller – maybe 25 to 30ish pounds – and the fact we’re doing a good portion of our running over grass, in the end, I thought I still did pretty good for a broad my age.

The end of our middle school cross country career is bittersweet. While it was very challenging to do this with Owen, it was also very rewarding. As much as I didn’t want to go to meets sometimes because I just felt like I didn’t have the energy or shouldn’t take the time off of work, I felt so wonderful afterwards because it was always such a great experience and I was happy to have the ability to do this for Owen. Also, I think it’s so important for typically developing kids to see kids like Owen in places they might not have seen them before and to know they can participate too; they might just have to do it differently. As I previously mentioned, Owen was not the only child being pushed by his mom. There was a mother/daughter team from another school who has been at the meets with us the past two years. She is also an 8th grader, so neither of us will be running at middle school meets next year. I’m hoping we’ve inspired others and that there will be other moms – crazy moms as she calls us – or dads out there pushing or running with their kids with special needs.

Finally, if you’ve read my previous posts about running in middle school cross country meets, you’ll know it’s very important to me that we not finish last. The kids this year seemed especially fast and we came dangerously close to finishing last a few times, but we did not. Mission accomplished!

Owen, today, July 28, 2022, you turn 13 years old. In honor of your birthday, and to mark this important milestone, I wanted to pen this letter to you.

Thirteen years ago today at a little before 6:00 in the morning you were born and our journey through life together began. I would like to say the first moment I held you was special, but it really wasn’t. I was exhausted and just wanted to sleep. Afterall, I had been in labor for approximately 30 hours and it took 4 hours of pushing before you arrived. I was glad when they took you from me so I could get some sleep. I feel terrible saying that, but it’s the truth. Childbirth is no joke. I marvel at new mothers posting pictures of themselves and their babies shortly after giving birth and they are smiling and looking fabulous. That was not the case for me. I looked and felt like I had been run over by a Mack truck over and over again.

I remember the day they released us from the hospital to go home. I did not want to go; I was petrified. They gave us a little pamphlet to take home which was supposed to tell us how to take care of you. Really? They give you more information when you drive a new car off the lot than they do when you take a little human home. I wondered to myself how is this going to help me keep this little human alive?

Over the next few months we developed a routine and we started to get the hang of taking care of you. While I was on maternity leave, we took long walks, went to the mall, and did all kinds of things together. We were starting to feel more at ease with taking care of you. Then the other shoe dropped. On Wednesday, November 25, 2009, you had your first seizure. On that date, our lives changed forever.

During your first year of life, rather than marking developmental milestones, we were documenting the number of seizures you were having daily. Prior to the start of your seizures, I religiously consulted my “What to Expect The First Year” book to see what I could expect to see as far as your development from month to month. I stopped doing that after your seizures began because all that you had gained prior to the start of your seizures was slipping away. Your first year was difficult, filled with countless seizures and hospital stays.

Shortly after your first birthday, we received news that you were a candidate for brain surgery that was supposed to take the seizures away forever. Although this surgery would leave you with permanent deficits, we were told it should cure your seizures and you would be able to adapt to these deficits over time. This was to be your best shot at a somewhat normal life. Unfortunately, just weeks after your surgery, the seizures returned, and we continue to live with them to this day.

I’m not going to lie, my sweet boy, life has certainly been difficult these last 13 years. There has been so much worry and so many struggles. There have been so many new things we’ve had to learn to keep you alive and there have been times when I’m sure we were close to losing you. As difficult as it has been, however, we would not trade our life with you for the world. The world is a much better place for us with you in it.

During the last 13 years, we have learned what is really important in life. We have met so many wonderful people we would have never met had it not been for you. We have witnessed you greeting each day and each person you meet with your signature smile; always happy and positive despite the bad hand that life has dealt you. You have made us learn and grow and become better people.

As you grow older, it is difficult to see where you are at in comparison to your peers. While they are all spreading their wings and becoming more independent, you still must rely on us for everything. We are still changing your diapers, feeding you and getting you dressed in the morning, just like we did when we brought you home from the hospital. Instead of worrying about sending you off in the world in a few years like other parents, we’re worrying about who will care for you after we’re gone.

Enough of these sad thoughts, because today is a day to celebrate. Today is the anniversary of the day you graced us with your presence. The day you changed our lives forever. While there may be some things we are missing out on by having a special boy like you, there are benefits that I guarantee other parents of 13 year old kids aren’t getting. You still like to us give hugs and don’t care who sees you do it. You still smile when you see us, and don’t look the other way and pretend like we don’t exist. You still want nightly cuddles from us before bedtime, which we treasure. We promise you cuddle time will continue for as long as you want it and for as long as we have breath in our lungs; even if you get too big to sit on our laps. We’ll just have to sit side by side and cuddle then.

Happy 13th Birthday, Owen! Mom and Dad love you.

During our lifetime, we set lots of goals for ourselves that we work towards achieving. A high schooler may be working towards getting into the college of their dreams. A recent college graduate may be working towards getting that dream job, or getting accepted into a graduate program. An entrepreneur may be working their tail off to get their new business off the ground. Maybe we’re trying to set ourselves apart from our co-workers to get promoted to the next level. Sometimes, no matter how hard we work, we don’t achieve the goal we were shooting for. That leads us to today’s topic: failure and how we deal with it.

As a big sports fan, I’ve watched countless big games or big events. When an athlete or a team does not win the big game, or the big event, especially when they were expected to do so. I’ve always wondered how they move on when they’ve worked so hard for this one moment and come up short? Truth be told, I started writing this blog post many months ago when my sports example was much more relevant, so I beg your forgiveness if this sounds a bit stale. My failure this year has been my lack of content for my blog. I’m trying hard now to rectify that. So here goes with my stale example.

Each Olympic cycle, there are those athletes from whom great things are expected. For them, it’s not about the experience, it’s about going for the gold. Anything short of achieving that goal is deemed failure, which seems ridiculous to me because most of us will never be that good at anything to even make it to the Olympics in the first place. Those athletes are defined by that moment. If they succeed, they’ll always be known as an Olympic champion. If they fail, they will always be known for not reaching their potential. It’s all pretty harsh when you think about it. As an athlete, you’ve trained your whole life for that one moment, and, for some reason, on that day you needed to perform your best, it just didn’t happen, or someone just outperformed you. I always wondered how those athletes who didn’t get what they came for handled the defeat. How did it shape the rest of their lives?

I was listening to my favorite radio station on satellite radio awhile back and heard an artist who was being interviewed say something similar to thoughts that had been going through my mind related to my Olympics viewing this past winter. I’m paraphrasing here because I don’t remember exactly how it was said, but in essence, he said his music was about encouraging people not to be destroyed by the terrible things that happen to us.

We’ve all had those moments where we realized that something we have worked so hard to achieve wasn’t going to happen. We were going to fail in reaching our goal. Coming to that realization is gut wrenching and soul crushing. Personally, however, I think we learn so much more about ourselves, and life in general, when we fail.

We can react to failure in one of two ways: we can give up and think all is lost, or we can get up, dust ourselves off, and figure out a path to move forward. As a parent of a child with a chronic illness, I feel I failed him in so many ways. I must have done something wrong when I was pregnant to cause this. If I did more for him, he might be farther along in his development. I’ve failed because I haven’t done more to make his seizures go away. I fail him because I spend too much time working and not with him. I could drive myself nuts, and have, by thinking of all the ways I’ve failed my child. But while I might have every excuse in the world to curl up in a ball and give up, I’ve chosen not to. I’ve tried to make the best of the cards I’ve been dealt and move forward. I think of all the wonderful people I have met because of what has happened to us. Of all the wonderful experiences we’ve had because of our circumstances. I think of my child who is one of the happiest kids on the planet and thriving, and of all the people who love him for who he is.

What I have learned by the things in life that haven’t gone my way is that failure does not have to defeat or define you. In some ways, I think failure has made me stronger. I think of failure as a course correct. It’s like when your using your GPS to get somewhere and you fail to make a turn that you’ve been told to make. The GPS has you go a different way, and in the end, you still reach your destination. And, maybe that different route causes you to see something you may not have experienced had you made the right turn. Who knows?

So my takeaway for you today boys and girls is to not let the terrible things in life destroy you. Make the best of it and see what you can learn from your failures. When life gives you lemons, pull up your big boy or big girl pants, dust yourself off and make yourself a vodka lemonade.

While it can be very difficult to have a child with special needs, sometimes it can be a blessing.

In Owen’s world, everything is happiness and light. He doesn’t appear to understand the concept of death, so when people close to him have died, he was blissfully unaware of the impact of that loss. He isn’t bothered by things he hears in the news. While Covid and quarantining caused many kids much stress, Owen adapted and didn’t seem to mind missing out on his favorite activities, or worry about becoming ill. He doesn’t know anything about social media, and how cruel some of us can be to each other on those platforms. He is oblivious to much of what causes us stress and strife in our world today, and for that, I am very thankful.

A few days ago, I was reminded of why I am so grateful for this. You might have heard in the news about an SUV that plowed into a Christmas parade. We live about 30 minutes away from the affected community and know people who were there when it happened. Luckily, they were not physically harmed, but there are the mental wounds that will need to be dealt with, wounds which can be far more difficult to heal than physical wounds. Because of the way my child is, I don’t have to help him try to reconcile what has happened; but I can’t help wondering how parents will deal with that, especially those whose children witnessed the event and/or witnessed the event themselves. How do you deal with such terrible trauma?

I’m sure everyone will deal with it differently. Some may never feel comfortable going to a parade or large gathering again, or at least not in the near future. Some may be right back out there, getting back on the horse, if you will, refusing to let that terrible experience change the way they live their lives. Everyone will have their own unique way to manage their emotions with regard to the situation.

I can’t help thinking to myself what would I do or say if I had a child who understood the gravity of this situation. If your child asks you why a person would do such a thing, what do you say? That question would be difficult to answer, because there could be a myriad of reasons why someone is motivated to commit such a heinous act. Rather than try to answer the why behind the action, I would try to focus on the positives that come out of such a tragedy. I would try to impress upon him that there is more light in the world than darkness; unfortunately, however, darkness is the unruly child that gets more attention. While this one person did something that affected many lives, there were countless others who sprang into action to help the victims, from the first responders who provided medical attention, to the shopkeeper who provided shelter to people fleeing the area. And, there are now countless others looking for ways to help the victims and their families after the fact; from the football player offering to cover funeral expenses, to the average joe who is donating a few dollars, or maybe a pint of blood. I think I would try to impress upon my child that there are far more good folks in the world than those folks looking to harm us, and that’s what we should try to focus on.

I heard a news story yesterday about a local high school who was impacted by Sunday’s tragedy. They were handing out meals to kids and their families, making sure kids were fed, as the local schools were closed because of the tragedy. They interviewed a mother and daughter who were there to help pass out meals. When the mother was asked why she was there with her daughter, she stated she wanted to show her daughter how people come together after a tragedy. I thought that was a powerful message to share with her daughter, and a really positive way to look at such a dark situation.

To anyone reading this who experienced this tragedy, I wish you peace and healing in the coming days and months. Happy Thanksgiving.

As the new school year dawned, I contemplated whether I would participate in cross country with Owen again. Prior to the beginning of the school year, we attended an open house to get acquainted with Owen’s new teacher. At the open house we ran into one of the cross country coaches who asked if we’d be participating again this year. Without hesitation, I said yes. As soon as the words flew out of my mouth, I wondered what I had just gotten myself into. After all, I was still on the fence. I had not yet mentally committed myself to this. Work has been really busy, and I was wondering if I should take the time to do this. But, it was too late; I had committed to it. There was no backing out now.

My anxiety heightened when I got the schedule. It was not going to be like last year where it really only involved a one afternoon a week commitment. This year would be more normal. There were practices four afternoons a week, and actual meets with other schools. The season, however, was only going to be a month long. I decided it was important to take the time to do this.

My reason again for doing this was to expose Owen to new experiences and to hopefully get his classmates to get to know him better. The first practices were uncomfortable, like they had been last year. The kids stared at us, probably trying to figure out why we were there. After awhile, the stares stopped, but no only really interacted with us, except for the girl who came up to us and asked us our birthdates. I thought that was odd, but I shared the information with her. She then pressed for birth years. I readily gave her Owen’s, but didn’t give up mine right away. She persisted, however, so I told her. She looked confused at first, and then proclaimed, “you’re old!” Yeah, thanks, honey, I know. But thanks for the reminder. I later determined that she had special needs as well, and remembering birthdates seemed to be her superpower, because every time she greeted me, she told me my name and birthdate. The other child who tended to interact with us was also a special needs student. I guess it’s true, birds of a feather do flock together.

If I thought practices were uncomfortable, then there were the meets. Our opportunity to get stared at by a much larger audience. I should add that I’m introverted and don’t like to be the center of attention, so all the attention was extremely uncomfortable. You would think I’d be used to this already because we always stick out in a crowd. As we stood at the start line during our first meet, I was wondering why I was doing this to myself. When we arrived at the meet, I took a picture of Owen and he had a huge smile on his face, so that alone was worth it. But, I was still regretting my decision because I was uncomfortable as hell.

And then the race started, and my feelings of regret increased. All the boys – we ran with the 8th grade boys this meet because we wouldn’t be able to get there in time for Owen’s grade – took off at lightening speed, and then there was us, plodding along at a snail’s pace; dead last, and the race had only just begun. Then there was the running on grass. Yes, I know, that is what you do in cross country, but I had been spoiled the previous year when most of our runs were on sidewalks. My old arse can still push Owen 4 miles on even terrain, but grass is a game changer. It was so hard and so tiring. About half way through the race, we encountered a kid who was walking. At last, maybe we would not come in last. Then, we passed two more kids! Yes, there was hope. Same as last year, my goal was to never finish last. We did not finish last in our first meet.

As the meets went on, I found I liked running with Owen’s grade or the 6th grade boys best because I could beat them more easily. Some gave up after the first 50 yards and then treated the race like it was a Sunday stroll through nature. At one race, there were going to awards for the best runners. One boy who was walking the course asked who would get the medal if we won. I told him Owen would, which he said was not fair because he wasn’t running. I thought to myself neither you, Owen nor I would be medaling at this event, so it was kind of a moot point, but didn’t say that out loud. After all the meets were said and done, I am proud to say I not only did we not come in last at the first meet, we didn’t come in last at any of the others meets either. Mission Accomplished!!

One of the best thing about the meets – besides never finishing last – was the support we got from spectators. People were cheering us on not because we were running fast or leading the pack, but because we were simply participating. I was so blown away by all the support we received. All the cries of “Go Greendale” were really heart warming. I ran into a co-worker at these meets who was there supporting his child. He went out of his way to cheer us on at each meet we were at together. It was especially needed at one hot, humid meet when I was having a hard time finishing the race. His cheers of encouragement were exactly what I needed to get across the finish line. Another one of the best things about the meets is that we got to participate with the friend and her daughter who inspired me to do this in the first place. It was great to be at a meet and not be the only crazy mom pushing her kid. Maybe we inspired other crazy moms and dads and there will be more of us out there in the future.

I thought we were going to end the season without having really connected with any of the kids on our team, which made me sad, but I was wrong. We did have some break throughs. While running intervals one day, one boy on our team commented that it must be hard pushing Owen, which I said it was. Then he simply said best mom ever and went on his merry way. Another time we were running with the high school team and we had to run up a very steep hill. I was reluctant to even try it because I didn’t think I’d be able to do it, but gave it a go anyway. Just as I determined that there was no way we’d make it up the hill, a girl running in front of us asked if we needed help, which I said we did. She grabbed the front of the stroller, and before I knew it, two other girls came up behind and helped us up the hill. Another girl on the high school team ran back to us to let us know there were stairs ahead on the course and asked if we’d need help navigating them. These encounters too truly warmed my heart, as you can imagine.

This year we made it to the year end pizza party and I asked if I could speak with the kids, as I had hoped to do last year, so I could explain why I was there participating with Owen. Public speaking is not my forte and makes me nervous as hell, but I just felt I needed to do it so the kids understood why it was important to me for Owen to have this experience as a member of their team. I knew I had to be short and succinct in my message as the attention span of middle schoolers is short. Anyway, I explained that Owen and I had been running together since he was a baby, and one of my reasons for doing this was because he enjoyed it and he enjoyed being around people. I also said I did it because I wanted them to become familiar with Owen. I explained that I understood that they could not be friends with Owen as they might be with other kids because of his differences; however, I asked if they could simply given Owen a hi, a wave, or a smile, whatever they felt comfortable with, the next time they encountered him at school. I also thanked those kids who had gone out of their way to be kind to us. I don’t know if what I said resonated with any of the kids, but it it causes just one kid to say hi to Owen, or any person like Owen he or she may encounter, I consider that a victory.

At the end of the pizza party, the coaches talked to be about joining the track team in spring. Looks like I may be expanding my middle school sports career.

I saw a post recently on Facebook that really infuriated me. A mom who has a child with disabilities similar to Owen talked about how her teenage daughter had been made fun of by some kids. She talked about how mad her younger daughter became when she saw her older sister being tormented, and about how proud she was of her for knowing what was happening to her sister was wrong. First of all, bravo little sis for having your big sister’s back. Second, bravo to the bully(ies) for picking on someone who can’t fight back. Your parents must be so proud!

I have never bullied anyone myself, at least I’m not aware of ever having done so; but I have witnessed others being bullied and I have been bullied. I remember a girl I went to grade school with who was extremely socially awkward and whose parents didn’t do a good job with keeping up with her hygiene. I witnessed kids being cruel to her and I’m sad to say, I didn’t do anything to stop it. I was a bit awkward myself as a kid and I feared if I spoke up, they would turn to me and start bullying me. I regret not having been a stronger person at that time and sticking up for her. I was picked on from time to time because I was chubby as a kid. It really hurt my feelings and made me feel like crap.

After reading this post and thinking of my past experiences, I thought to myself wouldn’t it be cool if there was a way a bully could get a taste of his or her own medicine. Wouldn’t it be cool if there was something like a bully simulator. The Bully Simulator would be a little compartment, maybe something like an old school phonebooth, or like a bathroom stall. They would be readily available so that if one witnessed a bullying, one could make a citizen’s arrest, if you will, and place – or better yet, shove – the offender inside the Bully Simulator.

The simulator would be completely dark inside at first; then, it would fill with light as the simulation began. Think of being in a movie theater the instant before and just after the movie begins. During the simulation, the bully would get to experience exactly how it felt to be the person they were bullying. They would get to feel what it’s like to live in the body of the person they were tormenting. In this case, they would get feel what it was like to be non verbal child whose body was weak by being wracked by constant seizures. They would get to feel what it was like to have someone taunt you and call you names and not be able to fight back or even run away. They would get to experience firsthand, and in living color, exactly how they made that person feel.

Now the Bully Simulator would not work in all situations. Bullying has become much more sophisticated than when I was a kid, with the advent of social media. Now one can be bullied 24/7 and the bully can conduct his or her heinous activity in the privacy of their own home without ever having to face their victim; something that I’m sure has made bullies more bold. Perhaps that is where the Bully Simulator 2.0 would come into play. If you were caught bullying someone via social media, the Bully Simulator 2.0 would maybe emit a shock causing the offender to drop their phone or cause them to take their fingers off of their keyboard. Maybe the Bully Simulator 2.0 would be a hand coming out of the device and smacking the offender on the hands, face, etc. Maybe it would be the voice of Samuel L. Jackson cursing at you for your bad behavior. The possibilities are endless!

Either way, whether a bully got a taste of his or her own medicine via the original Bully Simulator or the Bully Simulator 2.0, my hope would be that after the bully’s experience with the Bully Simulator, they would have an epiphany. They would understand that their behavior was wrong, how bad they made someone feel, and they would change their ways as a result. They would never think of bullying another human being ever again.

As I alluded to in my last blog post, our path to parenthood was not easy. You’d think the hardest thing would be deciding you’re ready to become a parent and the rest would be easy peasy. Not so much.

I wasn’t one of those woman who thought a lot about kids. I like kids and figured I wanted to have some at some point because that seemed like a natural progression in life, but I didn’t feel like it was something that had to happen for my life to be complete.

We were in our early 30’s when we got married and while our parents may have been ready to become grandparents again immediately – my father-in-law was talking about grandbabies at the rehearsal dinner – we were not in an immediate rush to go down that path. We had a pretty good life. We had a great group of friends we hung out with and were able to travel a lot. We were cool to wait a few years.

We decided the time was right for kids about two years after we got married. Afterall, by that time I was getting close to my mid 30’s and it seemed like the choice needed to be made otherwise the window of opportunity might close. The choice was made; we were ready for kids. Then months went by, then a year…and nothing was happening.

Then things got complicated. We had to figure out why nothing was happening. What was wrong? Who was the culprit? Was it my issue? My husband’s issue? Both? Temperatures were monitored, tests were taken and surgical procedures were done. There were four rounds of artificial insemination, none of which worked. The next step was in vitro fertilization; however, we never went down this road because we were told the odds of it succeeding were very slim due to the results of blood tests I had prior to undergoing the procedure. Our best shot, we were told, was getting an egg donor.

The concept of egg donation was not foreign to me, as I had a friend who was in a similar situation. But it was very costly, and none of the process was something that insurance would cover. So, we had to think long and hard about it. That’s where we put the process on pause for four years.

By this time, we were in our early 40’s and we felt it was either now or never. Either we would try this, or we would just give up on having kids altogether. So, we started the process of getting accepted into the egg donor program. As part of this, we were given a list of women on the donor list and their characteristics, such as nationality, age, eye color, hair color, education, etc. It was a little weird looking over the list and trying to decide who you wanted to be your baby mama. We even had to go to a psychological assessment where we were screened to see if we would be good candidates for the program. Don’t get my husband started on that process. We “passed”, but he is still bitter about the process.

A few days after said psychological assessment, I slipped on a patch of ice on my way in to work one morning and broke my wrist. I swear this is relevant, so hang with me. Rather than wear a big heavy cast for six weeks, I opted for a surgical procedure to repair my wrist. As most women of a certain age know, if you have a surgical procedure, there is the obligatory pregnancy test prior to surgery. I thought nothing of it. Been there, done that.

While waiting to be brought to the operating room, a nurse asked us if we had kids. Not an unusual question; we’d been asked that before. What we didn’t know, however, was the question wasn’t asked because of an effort to make small talk. Oh no; our answer to that question was about to change. This person knew the results of the pregnancy test, but was unable to share it with us. Shortly afterwards, a nurse came into the room and told us the pregnancy test was positive. What?? They then did a blood test which confirmed the result. The running joke was that if I had fallen and broken a bone sooner, maybe it wouldn’t have taken eight years to get pregnant.

When we got home from the surgery center that day, we had a message on the answering machine that we’d been accepted into the egg donor program. As fate would have it, things had changed, and that was not the route we were going to take to parenthood afterall.

As an adult, it’s a question you’ve probably been asked countless times upon meeting new people; got kids? For many years, my answer to that question was no. I wanted kids, or at least a kid, but for some the path to parenthood is more difficult than simply making the decision that you want to have kids. Our road to parenthood is a blog post in itself, so I won’t blow my wad here and will save that for another time.

So now, I have a kid, and when someone asks if I have kids, I can answer in the affirmative; yes, I have a son who is 11 years old. However, that question often leads to other questions asking details about said kid. That’s where things get a little tricky. How much do I share?

I am extremely proud of Owen and love to talk about him, but let’s face it, Owen’s world is much different than the world of a typically developing 11 year old. Often, I won’t share too much with people I’ve just met because I don’t want to be Debbie Downer and make the conversation heavy, or see the look of pity in their eyes. So often I share details of Owen’s life at a high level and listen as they share much more detailed information about what their kids are up to. But sometimes, I take a chance and see what happens.

On a business trip a few years ago while at dinner, the talk inevitably turned to kids, and I had a choice to make as to how much I would share about Owen. I threw caution to the wind and said I had a son and that my son had a serious medical condition which limited his ability to do many things a child of his age would be doing. Turns out one of others had a child with special needs too. Over dinner, we had a great conversation about our special kiddos and what joy they have brought to our lives.

So after that experience I vowed that I would try – I say try because I’m not always in the mood to share intimate details of my life with strangers – to be more honest and up front about our life with Owen. If it makes people uncomfortable, than so be it. Part of my reason for this is because I like talking about my son and I’m super proud of him. Another reason is because I’d like to make talking about disability and differences more of a normal thing. Not so that people feel bad for us or take pity on us, because that is the last thing on earth I want. My hope is that by talking about our life others will become more in tune with what life is like for those dealing with disability and will have more compassion and understanding when they meet others like us.

At this time of year, the dawn of a new year, we’re all filled with so much hope; especially this year, after the ****show that was 2020. A new year is a clean slate, a fresh start. Anything seems possible. We perhaps hope for slimmer bodies, healthier bodies, new careers, new partners, to further our education, etc. The possibilities seem endless.

I read an article recently that made me think about hope. It was written by a parent of a child with epilepsy. His child, like mine, failed many different anti-epileptic drugs. He talked about the feeling of hope with the start of each new treatment. Perhaps this will be the one that brings seizure freedom. Maybe, just maybe, this is the drug we’ve been waiting for.

This article resonated with me so much, because we have been there – we’ve been on that nasty hope roller coaster ride many, many times. It takes you from the highest of highs to the lowest of lows and back again, over and over. As a rule, I like rollercoasters, but not this rollercoaster ride. I do not get off and say I want to ride again. Oh no, this rollercoaster ride sucks, quite frankly.

Hope for a child dealing with epilepsy comes in many forms. There is hope in a bottle; a prescription bottle. Hope for us was called by many names including phenobarbital, keppra, topamax, ACTH, sabril, felbamate, depakote, banzal, zonisamide and onfi. I once tried to work the names of the medications into the Rudolph the Red Nose Reindeer song for fun….you know the part about Dasher, Dancer Prancer, and so on, but our number of medications exceeded the number of reindeer. Most of the time these drugs were in combination with others. Currently our cocktail contains 3 medications. Sometimes the drugs had very nasty side effects, like the time depakote raised Owen’s aluminum to unacceptable levels. I didn’t even know that was a thing until it happened to him. Sometimes the drugs were abandoned, but revisited again later on, like the time we revisited our old friends phenobarbital and felbamate.

Sometimes hope was in a surgeon’s hands. We had so much hope when we gave the green light for Owen’s hemispherectomy surgery and when we chose to have a vagus nerve stimulator implanted in Owen’s chest.

Hope even comes in the form of a diet. We had great hope when we started Owen on the Ketogenic diet. We also had great hope when we made the decision for Owen to be fed via a g-tube.

We totally thought we cracked the code and outsmarted Owen’s ever seizing brain when we got him on the g-tube and added onfi to his medication mix. Through proper nutrition, Owen got bigger and stronger and his seizures became practically non-existent for a 1 1/2 to 2 year period of time. Instead of trying new medications all the time, we simply tweaked his medication when he had a breakthrough seizure. That period was like heaven on earth. Unfortunately, it didn’t last.

At one of Owen’s sickest times, I was told by one of his therapist’s not to give up on him. I was mortified that she said that, because I certainly was not doing that. But I was tired and at my wit’s end. I have come to realize that sometimes you have to become more realistic with your expectations to stay sane. You have to adjust what hope means to you. Maybe that sounds like giving up, but I don’t think that’s the case. We no longer hope for seizure freedom for Owen. Not to say we wouldn’t welcome it with open arms if it was a possibility, but we’ve come to the realization that it’s unlikely that will happen after we’ve tried everything the experts have thrown at us. Sometimes what you hope for needs to be revisited. You have to make peace with what is and have a plan B, if you will – Hope Part Deux. For example, if your retirement plan is to win the lottery and you’re getting older and older without that happening, you might want to rethink that plan.

What we hope for now is not complete seizure freedom – again, not that we wouldn’t welcome it if it magically appeared – but something more realistic based on our circumstances. We hope for the following in no particular order: a life with as few seizures as possible; a life with as few medication side effects as possible; and as good a quality of life as we can possibly muster for him. Although he has his share of bad days, of nasty seizure-filled days, I think we have accomplished that. And for that, we must be grateful.

Happy New Year, everyone.