Deja Vu

Life has finally been going on the upswing for Arley and I. 

So much so that I decided I felt comfortable enough to start a brand new job and re-enroll myself into school so that I could finish what I started two years ago before Arley got sick. 

With all the wonderful optimism of starting 2016 off right, I have this nagging feeling lingering in the back of my head of the deja vu that surrounds us. 

As you may recall 2014 started off exactly the same as this year has and what lay ahead of us just a few short months later turned our entire world upside down. Admittedly it has put me somewhat on edge as I try to remain positive and forge ahead hoping upon hope that everything remains as it currently is and no grand surprise is waiting for us as we approach the warmer months.

It's only natural when going through any challenging time in ones life to worry and tense up as the anniversary of said event approaches, as we hold our breath until it gets here and hope to let out a sigh of relief as it passes. 

I am trying so hard to keep myself preoccupied and take everyday as it comes so as not to overwhelm myself, but I would be lying if I said that I'm not worried about what lies ahead for April. 



On a different note though Arley has been blossoming at school. She loves it so much and looks forward to it everyday. She is doing extremely well and right on track for where she needs to be for Kindergarten in the Fall. 

Arley is also taking after me and following in my foot steps for dancing. She currently goes once a week and loves every minute of it. Right now she is learning the steps to her dance recital routine and already knows most of the words to the song that accompanies it. 

She is truly making me proud and makes parenting so blissfully easy. There are a couple minor things that we need to work on, like coordinating cutting correctly with scissors and learning that it's okay to have kids closely in her space when standing together in a line, but academically she is on point and her teachers have zero issues with passing her onto Kindergarten. 

For a child that missed out on that one extra year of preschool when she was 3, I still managed to keep her right on target with her developmental learning and she never missed a beat and has not a single concern. Fist pump to us for all of this success.

That's about it for now with the updates. There will be some more updates coming up very soon though so stay tuned for it. Until then....

Tis The Season... For Giving Part Two

This past Monday, Arley and I met up with her Bristol Blues teammate Christian outside of Connecticut Children's Medical Center so that the two of them together could deliver the last remaining batch of toys we collected and donate them to the Oncology Clinic and Radiology Department. 

It was great watching the two of them pull a huge wagon full of toys around the hospital and help to stock the toy closets in preparation for Christmas delivery. It's humbling knowing that we get to be a very small part in making other children happy this holiday season who will not be home to spend the festivities with their families.

I remember full well that this was us last year, stuck in the hospital for Christmas and how heartbreaking it was knowing that Arley's biggest concern was "How will Santa find me here in the hospital? How will he know where I am?" At an unusual loss for words I just explained that "He knows exactly where you are and he won't forget about you."

It didn't make it any easier, it was hard on us both, especially missing out on my brothers annual Christmas Eve party, but waking up to some Christmas presents left out for Arley made it a tad bit easier knowing that regardless of where we ended up, Santa would always find us.

In the grand scheme of things, I know this still isn't enough in comparison for all that both Connecticut Children's and Massachusetts General have done for us, but every little bit helps and makes a huge impact on other children in Arley's situation and for that I am thankful to be apart of. 

We also plan to continue this tradition again next year. This time starting earlier in the summer with hopes of partnering up with the Bristol Blues to host a toy night for donations with perhaps some type of perk included (to be determined at a later date), partner up with some local small businesses as well as a local police station so that we can expand more and bring joy to even more children and families. 

With all that being said we want to thank all of our donors for providing extra funding to purchase toys and again a huge thank you to our anonymous toy donor for helping us provide for the families over at Christopher's Haven. 

Until then, we will see you all next year..... you know, only a week away now...

Tis the Season... For Giving Part One

Ever since Arley was 3 months old I have taught her the art of giving and that during the holidays it is far better to give rather than to receive. So, ever since her very first Christmas, we have purchased toys and have donated them to various organizations. 

As each year came, I challenged ourselves to add one more organization to our list than the year before so that we were touching more lives and making a bigger difference. Whether to Toys for Tots, Police Stations, our local News Stations, Children's hospitals etc we have always done it without fail.

This year though has been different. As a single mom I had to become creative, savvy, and think outside the box. I turned outgrown clothes and toys into cash and hoarded the money for months only spending it if I came across a really great deal on clearance (Target during the summer I'm looking at you!)

I also created a GoFundMe when I teamed up with the Bristol Blues to raise additional funds and tried to find a local police station to hook up with too. I was met with a lot of rejection from the police stations because they were already well invested in holding toy drives (rightfully so!) and couldn't coordinate anything additional. 

However, the gift giving Gods must have been watching me because they sent an angel in the form of a Police Officer. I won't mention the name because I know that this police officer is very humble and doesn't want to take any credit. (even though the local newspaper ran a story on this person!) The police officer didn't make any promises, but assured that whatever was in their power to do to help Arley with her toy drive that they would do it. 

And let me just say that this police officer came through in the biggest way possible! Arley and I were invited down to the police station and welcomed to any of the toys they had available so that we could donate them. We chose specifically to donate a good majority of the toys we selected there to go to families staying at Christopher's Haven for Christmas, as well as the Oncology clinic at Mass General and to the toy closet at the place she received her radiation treatment. 

The rest of the donations we purchased on Black Friday with our own money plus the additional $125 raised on the GoFundMe will be dispersed through a bunch of local community organizations that we hand selected whom we thought would benefit the most.


While Arley and I may not have much ourselves at times, we have always felt the need to give back to others and spread the love and good karma to all with the understanding that whatever good we put out into the world, the good will eventually make it's way back to us.

To be continued.....

Preschool

It has been almost a month since I last updated and several weeks since Arley started preschool. Life has been hectic lately and I don't see it slowing down anytime soon.

I am happy to report though that the transition to preschool was completely flawless and went without a single tear shed on her part. I think it helped tremendously that I talked preschool up as much as I could all summer, and knowing that her cousin would be in the same class helped to ease any fears.

Perhaps though admittedly they were my own fears and she would've been just fine the whole time, but that's not a gamble I was willing to take. The thought of her going to preschool was met with a lot of overwhelming emotions especially because she has never been in the care of anyone else aside from family for a long period of time. While independent, she is very cautious and doesn't like me out of her sight. 

Regardless, I have never been more proud of the accomplishments she has made over the last few weeks. There is never an issue with waking up early in the morning to make sure we get to school on time, she excitedly tells me about what she learned when I pick her up and she always looks forward to going back the next day.

I've said it before, but I am truly blessed with her. She's such a great kid and she has conquered every new milestone effortlessly. She surprises me everyday. She has truly crossed over into big kid status.

She turned 4 recently and we said goodbye to the toddler stage and tucked those memories into our hearts where they will remain until she's older. 

I am however trying to be proactive about next school year and called the Board of Ed to find out where she will be district for Kindergarten since there are several schools nearby. Once I found out, I took a quick drive over to that Elementary school and had a very lovely conversation with the schools Secretary. 

I found out that the school she will be attending is one of the best in the area and read up on the website about the Principal and the excellence that she strives for within the school. I feel very confident in Arley attending there and love the close proximity we have so that I will be able to drop her off and pick her up with ease.

I also told the Secretary that I have plans to join the PTA committee and have hopes to be a chaperone as well when needed. While it's still a full year away it's good to get the ball rolling on these things so as not to wait until the last minute and left scrambling. It also takes away the anxiety of the unknown too so I'm happy I have that under control.

For now, that's about all the news. We have an appointment coming up in November for a follow-up, have more scans that need to be scheduled for December and a few other appointments I need to schedule for next month when I get a break in my schedule to do it. Other than getting over a bad cold this week, Arley is her happy 4 year old self.

These are a couple of photos I took of a back to school session back in August that I never got around to posting.

She picked out her backpack and lunch box all by herself. I had originally thought she would want Frozen or My Little Pony, but nope, she wanted Teenage Mutant Ninja Turtles. Couldn't be more proud!

September is......

September is Childhood Cancer Awareness Month and if you "follow" this blog then that means you know someone who has cancer. This month is very important to us and we need help to spread awareness so that research can be done to help these kids fight this tough battle and live long, fulfilling, healthy lives.

I also invite you all to join Arley and I by showing your support with wearing either Yellow (for childhood cancer) or Gold (for Rhabdomyosaroma) throughout the month and to post photos using the hashtag Team Arley Sage.

If you wish to do something more or in addition to wearing our support colors, I would like to offer the following sites to consider donating to. A lot of these places have contributed in some way or another to Arley's journey and by donating to them you are donating to her and other children like her. Thank you!

Connecticut Children's

Massachusetts General

Make A Wish CT

Christopher's Haven

Clay Buchholz Foundation

Binkeez for Comfort

Sayonara Summer!

I had high hopes for this summer, I truly did. I thought, we had two awful summers health wise, we couldn't possibly go for a third. Or could we?

Sigh.....

Arley has had some minor setbacks that we have been dealing with since the end of May that resulted in an impromptu visit to the emergency room when she spiked a fever and continuously kept vomiting despite our best efforts to keep it at bay.

As the summer wore on it didn't get any better and still hasn't, but with time I'm hopeful that it will fix itself. I haven't told too many people, even some of those in our inner circle don't know. It's not that I don't want other people to know, it's just a lot of people don't understand and I'm tired of the unsolicited advice I get even though it's full of good intentions. 

The thing of it is, and what people fail to realize is, Arley is not your typical kid when it comes to certain things and I accept that. With having cancer it has also magnified those things even greater. What works for Susie Sunshine down the street, won't work for her. Believe me, I have tried everything.

I will say though, and my wallet growls at me every time, but bribery has helped a little bit with the progression. Very, very slowly we are seeing positive results, but we are still no way near where we should be. Admittedly I'm usually not the type of parent who will use bribery for things to get done, but when it comes to ones health I will do whatever works. 

Learn to pick your battles with kids folks, seriously...

Needless to say, Arley has a fabulous Shopkins collection right now that she is quite proud of, compliments of the one and only Youtube, and it gets her excited and wanting to work hard at being successful which is always a positive in my book.

Currently we are awaiting our next round of scans to be done conveniently on the first day of preschool so naturally we will be missing it. Sad face. We then have to schedule three additional appointments with different doctors/teams to focus on some other issues that still haven't improved yet and could take up to a year to rectify itself. 

On a positive note though, Arley still maintains her upbeat, comedic personality and acts as though nothing fazes her in the slightest. She's looking forward to going to preschool and I hope to enroll her in dance if our schedule and budget allow for it. Plus she will be hanging out with the Hartford Hawks softball team again in a couple of weeks as well as celebrating her 4th birthday. We have a ton of exciting things to look forward to as we head into the cooler months and I'm ready for it. Until next time I bid you adieu. 


PS- Despite all that has gone on medically with Arley we still tried to make the most of our summer. We attended almost every single Bristol Blues baseball game, went to Lake Compounce, The Bronx Zoo, Boston, Museum of Science, Imagine Nation Museum, Peach and Strawberry picking, Jumpin Jammin, Flight Trampoline, the Library and a few other places I seem to have forgotten. 

One thing though that is certain, I will never allow the journey we are on to bring us down. Always moving onward and upward, conquering each battle as it arises.

Goodbye to Blue

Tonight was the final game of the regular season for the Bristol Blues. After the last strike out, it hit me that for now the games are over until next year and the wonderful experience we had has come to an end. 

I never thought in our wildest dreams that meeting some of the players for the first time back in June at Jump-N-Jammin would have turned into what it did for Arley. I knew upon discussions with some of the Blues staff that they wanted to invite Arley out to a game, meet the players, and have her throw out the first pitch, but I never excepted just how big of an impact that the team themselves would have on Arley and in turn her on them.

Every single game we attended Arley was able to go out on the field and say hello to the boys. Whether they were in the middle of warm-ups or tossing around a ball, they always stopped what they were doing to make sure they greeted her with open arms, smiles, hugs, and high-fives.

Not only did all the players acknowledge her, but all the staff knew her name and even some of the other ballpark goers which was always a pleasant surprise. In her own right she was kind of a mini celebrity.

Eventually, as time went on, Arley developed a liking to certain players and I have dubbed them together 'The Fab 5.'

These four guys have been truly amazing, made the biggest impact on Arley and held the closest bond. Christian Budzik (LL) was her #1 buddy. He took her into one of the bounce houses, caught her first pitch, and allowed her to douse him with water balloons during one of the mid-inning games. Gerrad Rohan (TR) and Steve Wallace (BR) presented Arley with the team jersey and Dominic LoBrutto (TL) is always one to have long conversations, take her running around the bases or watch fireworks. 

I hope their parents know that they did a good job raising these boys. The kindness and compassion they showed to the both of us was quite remarkable. I know it may have seemed interesting to some that a 3.5 year old girl was a member of the team, but Arley has such a love and passion for the game of baseball and has enjoyed cheering on "her boys" all summer.

This would also not have been possible if it wasn't for Director of Interns Briana Root and Director of Public Relations Joe Boyle. I thank the two of you immensely and have enjoyed getting to know you both all season. If there was ever a need for anything these two made it happen and they always made sure that no matter what they were doing, they would check up on us throughout the game, or sit and chat.

Another special thank you goes out to the General Manager Rick Muntean and the rest of the Blues ownership for also playing a role in allowing Arley to become a Bristol Blue. 

This summer has certainly been one I am sure Arley will never forget, and one that I know I will cherish forever because despite what Arley has been going through, the Bristol Blues made sure that was the last thing either of us thought about.

So from the bottom of our hearts, please know that we love you, we thank you, we wish you all nothing but success for the future and hope that you all have long careers and make it to the big leagues. See you next season and good luck in the playoffs.