Taking a Sick Day

Being sick, sucks. Plain and simple.

Stuffy nose, clogged ears, fever, can't get your head off the pillow sick is not fun. I try REALLY hard not to get sick, but this winter has been absolutely wicked on me. I feel like I have had the same recycled sinus infection since right after Christmas and it keeps coming back for more. Moms in general should not be allowed to get sick. We are the folks who tend to keep it all together and when we are sick it's not that I am saying things fall apart, but they do become a bit undone.

Being sick and having a child with SMA or with any disability or chronic illness brings the whole "Moms should not be allowed to get sick" rule to a different dimension. When one of us gets sick in this house whether it is Ron, Heather, my Dad or myself we basically quarantine ourselves from Dyl. There is constant hand washing, antibacterial gel using, clorox wipe cleaning, etc that is happening all day long to try to hold off the spread of germs. Then we just sit back and pray that he doesn't catch whatever we have because if he does and he gets really sick it will turn our life into more of a tailspin than it already is. It is just hard for me to not be involved in what is going on with him ever...I am such a control freak that I feel upset when I can't pick out his clothes for school or make sure his bags are ready for the next day or read to him at night. I know that there are very capable people filling in for me (ie, Ron, my Dad & the nurses.) but being sick and out of control still gets on my nerves. Plus how many Jersey Shore and Law & Order Marathons can I possibly watch.

Need to feel better....fast so I can get back to doing what I do.

Dylan's Mom vs Heather's Mom

Yesterday I registered Heather for Kindergarten. It is kind of a bittersweet moment as I realize my baby is no longer a baby.  As I walked into the room for registration there was a big sign that read "Welcome Class of 2024!" Yikes! I sat down with the school administrator and she asked me some questions about Heather.

Has Heather ever had Developmental Delays? No
Has Heather ever had Early Intervention Services? No
Had Heather ever had any serious health conditions? No (knock on wood)

As I am answering these questions I realize that the same answers for Dylan were yes, not just yes, but YES with a capital Y.

I feel that I have mastered being Dylan's Mom. I can list all of his sugeries, hosptializations, therapies, equipment, nursing schedule, and drs appointments by memory. I know our insurance policy like it is a recipe for macaroni and cheese. I know how to operate, maintain and fix all of his medical equipment. I can field the, What's wrong with him? What disease does he have? Will he ever walk? questions with ease. I can now even handle the stares and dumbfounded looks I get from people when I take him out...ok, maybe this one still gets to me sometimes. I relate easy to other SMA parents and parents of kids from Henry Viscardi where Dylan attends school.

Being Heather's Mom in a lot of ways is different from being Dylan's Mom. Being Heather's Mom means, ballet class, soccer, school playdates...things that most Mom's of healthy children do. I enjoy it, but sometimes I feel a little out of my element. I have been trying to get better by being more open about my situation with Dylan to some of the mom's I have met and have also taken some help from these mom's when it was offered to me (something that I really am not good at). I also have to make sure that Heather is able to experience things that Dylan might not have been able to experience. I can't hold her back in ways that I held Dylan back......not that she'll let me. I have said this before that I love how Heather is able to see our life as totally normal. It is what she has known from day 1. Now I just have to work on that, thinking my life is normal and that I am just a normal Mom like everyone else.

Here's to the balancing act that has now begun...hopefully I can land somewhere in the middle.

Holiday Overload

Celebrating Ronnie's Birthday 

We have had a very busy holiday season here at the Cuevas house. To be honest it has been a bit of a whirlwind here since Thanksgiving. Now I am looking forward to a couple of weeks of down time before I get into full swing planning the Greater NY Chapter events for 2011. Here are some highlights from our holiday season...

To kick things off I planned a surprise birthday weekend for Ron which included a surprise visit from Lisa (Ron's sister) who lives in Florida and a surprise get together party with all of his closest friends. We had so much fun spending the weekend with Lisa and really appreciated her coming to NY to spend time with us.





Ron & Lisa

The Long Beach Crew

Ronnie with his BFFs...Tommy, Dave, & Vinny

Also during that weekend we all attended Dylan's first wheelchair basketball tournament. It was such an amazing moment for our family. Our family was out in full force with banners and everything. Dylan even scored a basket and had an assist. We were all very proud of him. Even Lauren...Ms I'm Gonna Kick SMA's butt right out of town...from Team Run 4 Owen and who is also one of our very dear friends came to cheer Dylan on. Dylan was so happy and surprised to see everyone there to show him support.



Team Dylan



Dylan with the ball....

Speaking of Lauren...she ran a race in honor of Dylan in Central Park on December 19th. Dylan still is mad at me that we didn't take him, but he had a bit of a junky night and morning that day and it was pretty cold. I promised him that I would bring him to one of Lauren's runs in the Spring when the weather is better. We can't thank Lauren enough for how special that she made Dylan and our family feel.



Dylan & his #1 Fan, Lauren



The following weeks included...Heather's Christmas Show, going to see Tangled, baking cookies, Heather's Pajama Day at Dance, baking more cookies, Dylan's Holiday party, Ron's office Christmas Party, taking the kids to see Santa (same Santa every year and he always remembers Dylan & Heather by name), putting up Christmas decorations, finishing Christmas shopping, wrapping presents, oh yeah and baking more cookies....etc, etc, etc.....

Everyone here in Rockville Centre is very considerate of our family and have been a tremendous support to us throughout the years we have lived here. Once when our generator blew the Fire Department was here in 3 minutes with one hooking it up to Dylan's room, during a blizzard in 2009 our Police and Fire Departments got us to the ER when Dylan had RSV, and when we were having problems getting permits for our elevator the Village Administrators could not have been more helpful. Every year on Christmas Eve the Rockville Centre Fire Department goes up and down the block with Santa on the Fire Truck and the kids go running outside to meet the big guy. Every year when they come down our block, Santa gets out of the truck and rings our bell and comes up to make a personal visit to Dylan and Heather. It was really fantastic this year as Heather really understood what was happening. We can't thank those guys enough for all they do for us. Heather remarked to me how.."See Mom I told you I was on the Good List" since Santa had made a personal visit to our home. Yeah, her head really needs to be bigger folks. It has been a very busy month here to say the least. I am actually glad to exhale a bit and get my life a little organized but almost sad that everyone is back to school and work...I kind of liked having everyone around.

Getting down to some SMA business....pls go to the following link and vote for FSMA to get $50K for much needed specialized equipment for our SMA children. You can vote every day for the entire month. I know it is a lot to ask people to vote every day but there are so many people without insurance and jobs who can't afford this stuff on their own...so please consider taking a moment to vote. Here is the link:

http://www.refresheverything.com/smaequipment

Also the very amazing Erwin Family are in the midst of organizing their Team for the NYC Half Marathon which is taking place on March 20, 2011. Here is the link where you can either register to be a runner or you can just make a donation: http://www.fsma.org/Fundraising/EventsCalendar/index.cfm?ID=5779&TYPE=1392

Finally, there are so many sick SMA kids out there. Please say extra prayers that these kids stay healthy during the Cold/Flu season which is so rough on our kids.



Being Thankful

I've always loved Thanksgiving,. The food, the partying, the shopping and most of all spending time with my family. What is there not to like about this holiday. Since my Mom died it has been a little rough since Thanksgiving was always "Her" holiday and of course it is rough to go visit your Mom at the cemetery on Thanksgiving instead of watching her cook in the kitchen and basically running the show on that day. Anyway, we had a great day celebrating Thanksgiving with our family. The next day Ron and I actually took some "couple time" and went out wine tasting on the North Fork of Long Island. It was a nice relaxing day. The weekend was filled with more fun as we visited some SMA family homes here in the NY Area with Santa aka my dear cousin Doug and my Elf cousins.

Unfortunately all of this fun and happiness was halted by the untimely and sudden death of our dear family friend, Ashley Frangella. Ashley and her family are all very special people in our lives. I have known her parents since the day I was born and had watched her grow up into a special, beautiful young woman who unfortunately had to live with severe allergies. Ashley is forever an angel at 20 years old. Please help her family raise awareness of Severe Food Allergies by visiting http://www.foodallergy.org/ and spreading the word to raise awareness.

Also, our dear friend Lauren from Team Run 4 Owen is running a race in Dylan's honor on December 19th in Central Park. Here is the link to her fundraising page. http://www.firstgiving.com/teamrun4owen1 Donations go to the Gwendolyn Strong Foundation. For those of you who don't know, The Gwendolyn Strong Foundation was founded by Bill and Victoria Strong shortly after their sweet daughter, Gwendolyn was diagnosed with SMA Type 1. I was lucky to meet Bill, Victoria, & Gwendolyn at the FSMA Conference earlier this year in California. We are so proud and honored that Lauren is running for Dylan and donating the money to the Gwendolyn Strong Foundation. Thanks Lauren for running SMA right out of town!

Dylan will be playing in his first wheelchair basketball tournament this Saturday. We are so thrilled and excited about this, especially my Dad who used to coach CYO basketball when I was a kid. When I told Dylan he would be playing wheelchair basketball this year he said to me...Mama I thought this day would never happen. I can't believe I am going to be playing basketball on a real basketball team at my school. We are very proud of all he accomplishes every single day but this one is definitely over the top for us. Team Dylan and his number 1 cheerleader, Heather will be out in full force on Saturday at the Henry Viscardi School. Look out Lebron, stand back Kobe, take a seat Shaq...here comes Dylan.

Praying for all the SMA kids out there to stay healthy for the holiday season.

Happy 7th Birthday, Dyl at OneTrueMedia.com

Video made for Dylan's 7th Birthday.

Make an on-line slideshow at www.OneTrueMedia.com

Lucky 7

This week my son, Dylan turned seven.

Seven. Could somebody pinch me. Could somebody please call the obnoxious, I am god like, do not dispute my prognosis doctor who told me my son would not live to be two. Seriously pinch me, slap me, kick me, I don't care because this week I felt like I was living in a miracle to see my son turn seven. Imagine what it is like to feel that your child's seventh birthday is a miracle. For some of you reading this blog the idea of a child turning seven is a given, something that is supposed to happen. Unfortunately, for the SMA parents or families reading this blog, turning seven is no easy feat. We celebrate birthdays in months, not years because sometimes months is all we have. Seven years of feeling every emotion known to man. Seven years of living life completely on the edge, of seeing things happen to your child that you never in your wildest dreams imagined you would have to witness. Seven years of fighting doctors, insurance companies, school districts and anyone else who would come in the way of having your child treated not like a person who is supposed to be dead, but one who wants to live and wants all that life has to offer. Seven years of meeting people who want to help you instead of just dismiss you. Seven years of people bending over backwards to help include your child and sacrificing things in their lives to help you.

Seven years of finding out who you can count on and who you can't.
Seven years of taking chances on things we didn't know would work but prayed would.
Seven glorious years that have opened my eyes to how life truly should be lived.
Seven years of joy, laughter, tears, heartache, pride, inspiration, determination and most important love.

Dylan, all I ever wanted to be in life was to be a mom. I am lucky to have been blessed by being yours. Even with all of the hard times we have been through all I needed to do was look into your sparkling blue eyes and I knew you would be ok. You amaze me everyday with your unending strength and love of life. You have inspired me to become a better person. As I always tell everyone, everyday I have with you is a day I was told I would not. I will never stop helping you to follow your dreams and to live life to the fullest. You have conquered more in seven years than most will in a lifetime. Happy 7th Birthday.

I love you forever and a day....Mama.

Road Trip

When Ron and I first dated we took a few short road trips together. We never thought that road trips would become our only way to travel but it has. This is always one of the areas of our life where the fact that Dylan has SMA can't be ignored. We love to travel and although Dylan's SMA has not stopped us, it hinders us from showing our children certain things we would love for them to experience. A trip that should be a 2 hour flight ends up taking us 2 full days of driving. The amount of equipment, backup equipment, medical supplies, etc for Dylan just makes the thought of flying overwhelming to us. Not to mention the horror stories we have heard from other families of baggage getting lost or wheelchairs getting broken. In order to not have any of that happen we settle for driving. I think I know every rest stop along I-95 (thank you Heather). We are starting to see we need to take a deep breath and let go of some of our fears related to Dylan and SMA.



Celebrating Orestes's 80th Birthday

This Road Trip was a special trip as we visited Florida to celebrate Ron's Father's 80th Birthday. We had a nice time celebrating with Ron's family and the kids enjoyed spending time with their cousins. It was a nice surprise to see Ron's cousins Lissette and Hiro who came in from Tennessee with their children. Hiro was the first person from Ron's family who I met and let me tell you there is not much not to like. He is so much fun to be around, tells the best stories and he's a Yankee Fan. What could be better than that. The kids got to see their first official pig roast at their Uncle Andy's house. Heather had all kinds of questions about seeing the pig which I deferred to her father. We also were able to celebrate the engagement of Andy & Adriana and the birthday's of Michael, Danny, Dylan & the Big H (does this kid's birthday ever end). Ron and I also celebrated our 9th wedding anniversary. It was one big celebration weekend in Miami. Also while we were in Miami we had the opportunity to see Jennifer and her daughter Madison who are part of our SMA family. I love Jennifer. She is such an amazing mom and such a great SMA Advocate.

Playdate with Madison

 

Dylan and Heather at Jacob's Park with Shaina

As we made our way back up north we were lucky to be able to take Dylan to Jacob's Park in Boynton Beach, FL. Jacob's Park was built by the amazing Rappoport Family to honor the memory of their son Jacob Isaac Rappoport who was lost to SMA. When Dylan was first diagnosed Jacob's Website was one of the first ones I viewed. Shaina and Adi were so inspiring to me, doing so much for SMA families while dealing with their own heartbreak. It was very exciting for us that Shaina met us at the park and gave us the grand tour. Dylan and Heather both enjoyed playing at the park. It was especially nice when one of the classes came out and joined in with playing with Dylan and Heather. We were even able to meet Shaina's youngest son, Sam. We had an amazing and unforgettable time and can't wait to visit the park again.

We then took the kids for a surprise trip to Disney. The kids really enjoyed our time in Disney (ok the big kids did too). Dylan and Heather both really love Halloween and had an absolute blast attending Mickey's Not So Scary Halloween Party. Heather was pink Supergirl and Dylan was A-Rod. Of course Heather told Dylan that he needed more of a tan to be A-Rod which made all of us laugh. I think one of the most special parts of the trip for me personally was the fact that Arthur (Dylan's nurse) was able to see his oldest son, Tim, who is currently doing an internship in Disney for college. Many of our nurses are truly family to us instead of people who just work here. I know they not only love Dylan but Heather as well and will bend over backwards to help make our life easier. Throughout the years Arthur has sacrificed so much to help our family. He has really dedicated himself to Dylan many times putting our needs above his own needs so it was great for Ron and I to be able to see the joy on Arthur's face when he was able to see and spend time with Tim. Tim is such a great kid or I should say young adult, a true testament to being raised by two amazing parents.



Supergirl & A-Rod



Arthur & Tim



Dylan and Heather being Heather



There are certain rides at Disney that we can just wheel Dylan's chair right on and one of us sits with him but then there are rides that Dylan would have to transfer out of his chair and sit on one of our laps which is not an easy task and one we have never done. As Dylan is getting older (almost 7) he is starting to get out of the Winnie the Pooh, Small World rides and wanting to go on rides like Haunted Mansion and Pirates of the Caribbean. Of course the Haunted Mansion and Pirate rides are transfer rides. Even though it was a bit of work and stress we made it happen. I sat in a Disney Manual Wheelchair and put Dylan on my lap (vent and all, suction and ambu in tow) and Ron wheeled us down to the ride. The Disney staff was very helpful and stopped the ride so we could get on with all of Dylan's equipment and we were able to go on the ride. Dylan kept saying, Mom,I love you, Mom, this is awesome and it really was. Just to be able to see his eyes light up and know that he accomplished something he really wanted to do made all of the effort worth it. It just goes to show us that sometimes Ron and I have to let go of our fears to allow Dylan to do certain things. It doesn't go without stress but it is so worth it. As Dylan gets older Ron and I need to remind ourselves not to treat him like a baby, we need to do age appropriate things with him even if it is extra work for us and brings us out of our comfort zone.

Another successful Cuevas Family Road Trip accomplished...

On another note, there are so many sick SMA kids out there right now. Seems as though Cold & Flu season has started early. Praying everyone stays healthy and has an easy winter season.