the last of 2016

What a year it's been! As I sit here and think about 2016 coming to close, I am amazed at what the boys have accomplished, what they have overcome, and what 2017 will bring. I always try not to get too far ahead of myself and look too far in the future. The past few years have been emotional and as nice as it is to dream about the future, I try to savor the good things in each day (this can the hardest part for me sometimes!). I can only hope that 2017 holds promise. I don't ask for much....I simply want both of my kids happy, healthy, and ready to take on the daily challenges that life can bring. Again, that last part is always the toughest.

Overall, the second half of 2016 was, to say the least, unpredictable. The summer got off on the right foot with Nathan ending his preschool career. It was a bittersweet moment as we watched him take over the stage in their graduation production of The Three Little Pigs. He, of course, stole the show as the wolf. I get choked up even now when I think back to what a wonderful job he did. The little boy who seems to be scared of his own shadow sometimes, took control of himself and said and sang his lines with his little cartoon voice. It was amazing. It's always interesting for me, knowing what he's been through and to watch him master something, to think about what other people think of him. No one truly knows what his little head has been through except him. And even he doesn't even realize it at times. I know I'm his mom, but the boy is special.

We went through the summer with very little planning; Ben had 2 weeks of day camp at his elementary school and 2 mini-vacations. The first week of camp, Ben enjoyed it....it was all about sports, of course he did! The second week brought about some challenges. He left camp that particular Tuesday feeling off. He said his legs hurt and they felt weird. This brain tumor Mom went into protective mode and probably thought things I shouldn't think. But, unfortunately, it comes with the territory I guess. Then, he spiked a high fever. Long story short, this episode lasted about 4 days, he was unable to walk properly for the entire week. Talk about scary! He even needed to use a stroller by the end of the week. You want to see this Mom freak out a bit? That's how you do it! The pediatrician didn't seem to think anything of it, we kept an eye on the fever, as well as the leg pain. By Saturday, he was starting to feel like himself again. Poor kid!

The rest of the summer was spent doing summer things....pool parties, spending time at the lake with friends, beach trips, going to the amusement park, and making trips to CT. I was able to win a few bowling tournaments along the way too. :)

Nathan had a 2 day neuro-psychological evaluation (What is it?) scheduled for the last week of August. I was expecting him to struggle with having to do such involved testing without me in the room, but he completed everything with flying colors. The testing is part of the protocol for the Pediatric Brain Tumor Clinic at Dana Farber Cancer Institute. Because of the severe hydrocephalus that he suffered and his brain tumor, it is required that he have baseline testing before kindergarten in case anything comes up while he is in school. Nate and I stayed overnight in Boston on Sunday night as the first day of testing was early Monday morning, drove home, and then drove back on Wednesday. In the meantime, he also had his 6 month neuro-opthamology appointment on Wednesday morning. He had to get his eyes dilated (never any fun for anyone) and handled it as best as he could. The doctor felt like his eyes are doing well, there continues to be no damage to the optic nerve (due to the hydrocephalus), but still wanted to see him again in 2017 because of the eyelid fluttering that he does. I was emotionally prepared for that news this time around. We headed off to the rest of the neuro-psychological testing. He, again, did well and the psychologist felt like she learned quite a bit about him and her results would be accurate. The report was due to be completed in about 3 months. Yeah, you read that right.....3 months. :)

That same week, Benjamin started first grade and Nathan began going to a different preschool in program that's run more like kindergarten. He could've started kindergarten (he missed the cutoff date by 5 days, but we decided it was in his best interest to give him another year of social/emotional growth). They both had such great first days; exactly what parents want to have for their kids.

Early in the fall, Nate turned 5 years old....gasp! Everyone says it goes by fast, but I can't say that it has. Can I believe he's 5? Yes, I can. Each day/month/year has had its definite challenges, but I couldn't be happier or more proud of the person he is becoming. He shines a light on every one he meets.

The rest of the fall consisted of Benjamin's flag football schedule, Nate's swimming, and both of the boys started Yoga for kids. Relaxing, right? Haha! Stephen and I had a feedback session in early October in Boston with the psychologist that did Nate's evaluation. Did we learn anything new? Not really, but I feel like it is really important to have everything in writing for his current teachers, as well as anyone who works with him. Based on the testing, he showed signs of anxiety (duh...for anyone that knows him). It was recommended that he start seeing a therapist on a regular basis that can help him learn coping strategies around things that he has anxiety around (for example, he has a fear of being left alone, fear of most food, sleeping issues) and also around some of the repetitive behaviors he exhibits. He had been in therapy for a short time in 2015, but with everything else that was going on, he needed a break. Now, he's been going for a few months, and he's really starting to show some growth and independence. He tried a new cookie at school, he went out on the ice with his teacher at school, and has been able to spend short times alone in a room (which is HUGE!). I'm thankful we found a therapist that has made a connection with him.

Unfortunately, the link to anxiety doesn't stop at Nate. Ben has been struggling at home with issues around being alone and sleep as well. We just simply try to get through each day with as much positive encouragement and realistic expectations as humanly possible. Our routines are known to them and we follow through with consistent rules; this seems to help. I'm glad I'm able to use that Master's degree I have with my own kids. ;)

Benjamin has made so many gains this year; playing every sport imaginable and excelling at all of them. He loves football, ice hockey, and basketball and plays them any chance he gets. He is looking forward to playing with all of his friends at his birthday party in a week. He turned 7 over a week ago, and he likes to have his party after Christmas so the presents don't stop! Haha!

The best news we got all year was at Nate's yearly MRI in November....STABLE!!! This means his tumor has remained stable and has not grown in a way that requires treatment. It also means his ETV is working to make sure the cerebral spinal fluid is doing what it's supposed to be doing. All great things! No scheduled MRI until next November. Simply unbelievable.

The first thing we have to look forward to in 2017 in dental surgery for Nate. It all came a little unexpectedly, but I hope that he's on the right path. Long story short, I had to switch the kids' dentist to an unforeseen issue and thankfully, found one that can handle Nate's anxiety. Unfortunately, because of his self-imposed restrictive diet, his teeth are baring the burden. He has to go under sedation in early February so that the dentist can really see what the scope of the issues are. And because of that, we don't really know what's going to happen or what exactly he'll have to have done. We can only hope that the issues are minimal and that recovery isn't too terrible for him. Either way, we'll get through it, just like we do everything else.

Team Nate the Great is just under the $54,000 mark for raising funds for pediatric brain tumor research! Our fight will never stop to help fund trials and other research. Just because Nate currently doesn't need treatment, doesn't mean he won't ever need treatment. At this time, it is our responsibility to help other families that are currently fighting the fight. Thank you to those that have donated in the past and will donate again in the future. Thank you to those to spread the word and encourage awareness. We cannot do this alone. A Kid's Brain Tumor Cure Foundation is one of the most incredible charities in the world; check out our page at www.teamnatethegreat.org

I hope and pray that everyone reading this has a wonderful and stress-free (I can dream, right?!) 2017. Thank you all for your continued love and support during what has been some of the hardest years of my life. See you in 2017!

Ben celebrating his birthday

the boys on Christmas Eve

Ben playing hockey

the boys hanging with Santa

Nate played Rudolph at school

Ben getting ready for his first basketball game

March, April, & May 2016

It's been almost 5 months since I wrote a blog post and it feels like 5 years. Life can get so unbelievably crazy and insane, but it's nice to be able to sit down and reflect on what's happened over these past few months, the good things, the bad things, the great things, and even the sad things. As hard as it's been, I always, always try to keep things in focus, not dwell on the tough stuff, and remind myself of how far all of us have come over these past few years. It's not easy, I certainly won't lie about that; I find myself getting emotional, sometimes daily. I don't see it as a weak thing, but as a chance for growth, to find what's really important and see that these boys of ours are continuing to do amazing things on a daily basis.

"Tough times have their benefits. They show you who you can really count on."

Back in March, I was still attempting to make Lincoln's life as easy as I could. (For those of you that are just starting the blog, you may want to go back and read some earlier posts). After being diagnosed with degenerative myelopathy, I was trying to get him to lose weight by making his food for him. I was able to get him to lose 14 pounds, which, for anyone that's ever spent any time around him, was a miracle! I was giving him short daily walks, bringing him for acupuncture, as well as bringing him for workouts at a water treadmill.  He certainly kept me busy, but if I had to do it all over again, I would.

"Every time I say, 'Life can't get more f**ked up;' Life replies with, 'Challenge accepted."

There were 10 days of March that were spent with each of us getting the stomach bug, sometimes overlapping. Unfortunately, Nate had it the worst...5 long days. Such a tough time, but we got through it.

Nate decorating Easter eggs

Ben & his Easter eggs

Lincoln at his heart testing

the boys on Easter

the boys with Lincoln at the vet

me & Ben at basketball

Nate walking Lincoln

Ben got a puck at the Williams College game!

Lincoln at water therapy

"Sometimes you can get so busy trying to be everyone else's anchor that you don't even realize you are actually drowning."

April started off with 2 snowstorms. Ugh! Benjamin even had a delay! There was barely any snow all winter and then, bam, April snow. But, by the time April vacation rolled around, we were ready to get outside and spend some time with friends. We filled that week with the museum, the zoo,  a local farm, a local park, mini-golf, Flight trampoline park, and the Cheesecake Factory. We couldn't have asked for better weather or a better way to spend the week off of school.

April can sometimes be difficult because it was the month Nathan was diagnosed, but after seeing how well he is doing, it was nice to kind of celebrate the fact that it's been 3 years! Three years. Just crazy!

Back in April, I received a message from a writer at the NY Times. He was interested in doing a story about duckpin bowling and wanted to talk to me. I was intrigued, overwhelmed and flattered all at the same time.

Nate feeding one of the animals

Nate bought flowers for a friend's birthday

Ben reading to Nate

Nate cheering on Lincoln at therapy

Lincoln looking great!

me and the boys at Flight

the boys at mini-golf

me and the boys at Look Park

Ben hanging out in CT

me, Katie, and the boys at the zoo

Oops...doctor visit for Ben. Thankfully, his finger wasn't broken!

"Surround yourself with people who get it."

May seemed to fly by...Ben was playing baseball, we had play dates in the park, some big milestones for Nate, Lincoln started to really struggle with walking, and HUGE news for me.

Nate really started to shine in May. His independence was growing and this was period of calm for him and he started to do things on his own that we all thought would never happen (even though we knew they would, we just forget that he likes to do things on his own timetable). First, he finally went poop on the potty. Previously, he would ask for a pull up, do his business, and then he would asked to be changed. He attempted full potty training multiple times, but his anxiety took over, and he just wasn't ready. One day, I asked him if he wanted to sit, he did, he went, and never looked back. Oh, what an accomplishment! Second, he was ready to swing on his own at the playground. Not on a baby swing, but on a big boy swing! It may sound silly, but so many things have to happen for a kid to want to swing alone. His core strength was never strong enough to hold himself up and balance at the same time. Again, one day, he asked to sit on a swing, and then asked me to push him. I think I may have cried just a little. And finally, he became a coloring fool. One of my kids actually wanted to color! I know it sounds crazy, but coming from someone who couldn't hold a crayon the correct way until a few months prior, this was huge for him. So many things to be excited about! :)

Okay, so my news (this might be old news for those of you that know me in the real world!)....the day before I left for my first bowling tournament of the year, the NY Times article came out online. Whoa. I was speechless. I never, in a million years, ever thought, something like this would happen for me. Here I was, sitting in a chair getting a pedicure (haha!), reading a NY Times article about me, duckpin bowling, my accomplishments on the lanes, my kids, and the fact that a sport I am completely in love with is fading away. What a moment! I cried. I laughed. I shook my head in amazement whenever I looked at people's reactions on Facebook. I couldn't have been more proud to see my sport get national headlines that it so deserves. And the fact that someone thought enough of me to include me and my story in it? Wow. So humbling. If you haven't read the article, here is the link The Lost Art of Duckpin Bowling I hope you enjoy it as much as I loved sharing my story.

On the same day that the article came out, which was the Sunday of Memorial Day weekend, I was bowling in Hagerstown, MD. It just so happens that I broke 2 world records in the process of winning my 20th tournament. It may have been one of the best weekends of my entire life.

Ben playing baseball

Ben

The boys dancing in the rain

me & the boys on Mother's Day

Nate swinging!

me & Lincoln

Ben playing basketball

NY Times article, second page

NY Times article, Sports section front page!

And just like that....a few weeks go by and I still haven't posted this. Even though, this particular post is somewhat unfinished, I'm still going to post it. Life is certainly reminding me that if it's not one thing, it's another. Nate's had a busy few weeks, but more on that later....he certainly keeps us on our toes! ;)

Until next time....

February 2016

For those of you that are new to our blog, I am currently catching everyone up to speed this post will get you through February 2016. It's important to me that you know our back story and how we got to where we are today; so, if you are new, you may want to start from the beginning so you don't feel lost. Thank you for joining us on our journey.

"It's not enough that we do our best, sometimes we have to do what's required." -Sir Winston Churchill 

Reflecting back on the way January ended, it definitely took me a few days to get my footing back and realize that Nate's eye appointment wasn't the end of the world, but just one more thing to overcome and get through. Sometimes, I feel like that's all we're doing; just trying to "get through" life. Is that okay? Is that normal? I honestly don't feel like it is. I want to live. I want to not be anxious about the little things. I know I have to make the conscious decision to do that and just do it. Ahh...if it was only that easy.

"Tough times do have their benefits. They show you who you can really count on."

As of February, Nate had been continuing his weekly appointments with the nutritionist to check his weight, which has remained unchanged, and his height. At the table, we discuss the foods he eats (which now consists of hard boiled eggs, blueberries, strawberries, the random PB sandwich, sometimes waffles, cereal, M&M's [haha!], and water), and all of the foods he refuses. We talk about techniques and suggestions and everything in between. I honestly don't want to think about it anymore. That's not to say I'm giving up on trying to have him at least "try" chicken, meat, fish, pasta, or any vegetable, but I just don't want to continue to worry about what's going into that little body of his. In February, we discuss a method called Food Chaining (What is it?) and I attempt it at home. Needless to say, it was unsuccessful. Was I always consistent? Probably not. Am I going to force feed my child? Nope. 

We always try to celebrate all of the little things that the boys do, especially those that they've been fearful of trying. In February, Nate put on his first tattoo. I know it sounds incredibly silly to most people, but for Nate to be willing to do something new, especially putting something on his skin, and be excited about it at the same time is cause for celebratory champagne (I'm kidding, well, maybe).

So exciting!

We took a family trip to our place in Florida; it was really nice to feel the sun on our faces, but I was sick almost the entire time and even had to visit the doctor while down there. No fun.

The month ended with our favorite canine deciding he wanted to take a jaunt around town. Now, mind you, he was diagnosed with Degenerative Myelopathy (What is it?) in January after a few months of symptoms. He ran off of his collar and was gone for almost an hour. I couldn't find him and I knew he couldn't have gotten very far. I didn't have much time to continue to look for him as I had the boys and Nate was in no condition to help look. My in-laws were kind enough to head over and continue to help look for him. On their way, they saw a police officer and asked him if they had a report of a boxer being picked up. Sure enough, they did. I headed across town to pick him from the pound. He must've been afraid knowing that his first therapy acupuncture appointment for his legs was that afternoon. Damn dogs. :)

 "I love those people who can make me laugh during those moments when I feel like I can't even smile."
 

January 2016

In reflecting on the events of this past January, I feel like it was emotional and worry-filled month. Thankfully, it was nothing too life-altering, but the worry and anxiety that comes with post-surgery things with Nate can affect so many parts of this girl's heart. His adenoid removal surgery was on December 31. In the immediate hours post-surgery, he was doing fantastic. The ride home from Boston was smooth, he ate ice cream as soon as we walked in the door, and was in happy spirits. Day two was very different. He complained that his head hurt. He NEVER complains his head hurts. He seemed out of it and simply "off." This started my internal struggle of when to call doctors and when to just wait it out. This is never an easy decision for me, but I always try to err on the side of caution. Thankfully, our pediatrician's office is very patient with me and understands my worry. When a child with a brain tumor and hydrocephalus complains that their head hurts, it's very difficult not to go to a dark place. The likelihood of something going wrong with his head is slim to none (at least that's what I'm going with!), but there's always a chance of his ETV closing up and him needing immediate medical care and emergency surgery.


As the days went on, his head pain seemed to subside, but he continued to not be himself. It ended up taking almost the entire month for him to return to his normal "Nate" self.  One of the worst things to deal with was the bad-breath that occurs from removing the adenoids. If you've never been around it, be grateful; it's definitely one of the worst smells ever. Thankfully, that went away too.

One of the best things to happen in January was Nate wanting to begin to write and color. He wanted to write his name on everything and color anything that was handed to him. I was beginning to worry that he would never want to do it, let alone get excited about it! I longed for the day that he would want to sit with me at the counter and color our hearts out. Now, it's an everyday event for us and I love every minute of it.

writing on the paper at the doctor's office

practicing his name

I also bowled in and won a tournament in Connecticut that was held in honor of my dear friend, Theresa. She died way too young and is missed terribly. She would've loved Nate and I know she has a hand in him loving the color purple. :)

The month ended on a difficult note. Nate had an neuro-opthamologist appointment in Waltham. It was supposed to be his "last" appointment of his cycle of appointments related to his tumor and he was supposed to be given a year break from it all. I went into the appointment with such high hopes. I don't know why I do that to myself! The initial exam was done by a nurse. She had never met Nate before so it was nice to get a new set of eyes to look at him (ignore the pun!). She took out a camera to take a video of his eyes which started to get me a little worried because no one had ever done that before. She explained that she noticed something a little "off" and wanted to catch it on video in case it was something new and something the doctor hadn't seen before. The doctor finally came in and did her exam on his as well. I love this doctor and have since day one. She is fantastic with Nate and is very calming. She explained that she saw what the nurse saw too and said she didn't remember him doing it before. She noticed a "fluttering" with his left eye. She told me that it could be the result of pressure building in his head, tumor growth, or just something quirky that he does without thinking. I could feel myself getting upset, but I was able to hold it together in the office. She was leaning more toward it being a quirk and said that she felt comfortable with not scheduling an emergency MRI and just seeing him again in 6 months. Although her outlook made me feel a little bit better, my insides were ready to explode. I knew I had to get out of there because I was going to lose it.

He and I walked downstairs and of course, he wanted to watch the big ball machine that is in the hospital lobby. I sat off to the side and let him do his thing. Ahh, to watch him and know that he has no idea how serious things can get with him and he simply lives the only way he knows how to: inquisitively, full of curiosity, ignorance and bliss. I lost it; right there in the lobby. Uncontrollable tears streaming down my face. I'm sure I'm the ugliest crier out there, but I had no control over it. I just thought he would get a good chunk of time off from this. Nope, just not yet. As I start to look for some tissues, I look up and see his neurologist walk in. I didn't think she would even see me, nor even recognize me in the sea of people. She walked right over, sat down, and asked me what happened. She glanced over to him to make sure he was okay too. She took the time to listen to the concerns. Ironically enough, she was headed up to see the same doctor for her own daughter and said that she would tell her that she saw me in the lobby and figure out what the best next step was for him. I can never express my gratitude that I have to be surrounded by some of the best and most supportive doctors in the country. Nate is one lucky kid.

Candyland while waiting for the doctor

exam at the eye doctor

the fascinating ball machine!

"In life, you will realize there is a role for everyone you meet. Some will test you, some will use you, some will love you, and some will teach you. But the ones who are truly important are the ones who bring out the best in you. They are the rare and amazing people who remind you why it's worth it." -Unknown

Raja (my 1st ever cat who died 1/6/2016)

Ben playing hockey!