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.

The Big H

Today was my girl's 4th birthday. We do birthdays up pretty serious here in the Cuevas house. It's more like a birthMONTH than a birthDAY. Anyway even though Heather did have an official birthday party where she received tons of lovin and lots of presents today being her official day we celebrated. At her request we had lunch at her favorite Diner (such a Long Island girl) with Aunt Gen who then took her to the store to buy her the new Tinkerbell movie. Dylan was secretly excited about us having the Tinkerbell movie too as he is a closet Tinkerbell fan. We gave her a pink scooter that she wanted and she is looking forward to racing Dylan in our driveway. We sang Happy Birthday with my Dad, Gen, Roe and Jackie (and of course Ron & Dyl).

Every single thing that Heather does amazes me. I didn't mind the sleepless nights when she was first born. I cried when she crawled and walked. I laugh when she dances. Heather is a take charge kind of gal. She can walk into a room of complete strangers and have everyone wrapped around her finger in 10 minutes. I've been calling her Queen Latifah lately as she refers to her friends as "her sistas"..does not matter if they are boys or girls, young or old...still they remain "her sistas". She is very protective of her family, especially of Dylan. She is able to look at our life as 100% normal, something I don't think even Ron and I can do sometimes. This is what she has known from day 1and it is shaping her into the amazing little being I know she is and will continue to be.

When we were on Dylan's Make A Wish Trip, someone referred to Dylan as "Big D" and in return Heather told that person that if Dylan was "Big D" that she was "The Big H". She will never be outdone....

So many of you who might be reading this blog probably know that we are big Yankee fans around here. When Dylan was really small we would kid around and refer our birthday year to the number of a NY Yankee. For example when Dylan was 3 it was his Babe Ruth Birthday, when I was 36 it was my David Cone birthday, when Heather was 2 it was her Derek Jeter Birthday...get the picture. Anyway, Dylan loves the number 4 (his birthday) and he admires Lou Gehrig. He is always talking to us about how Lou Gehrig had a disease similar to him and yet he was a real NY Yankee. This being Heather's 4th Birthday, Dylan could not wait to wish "The Big H" a Happy Lou Gehrig Birthday. After he did, Heather replied...Dylan you are silly like Mommy. She is so right. Dylan and I had a good laugh.

God bless my sweet baby angel girl who I hope continues to be loving, strong minded, sassy and has 100 more birthdays. Hmmm not sure which Yankee wore that number ;-)

My First Blog

I consider myself a pretty active person in the SMA community and when the Strong Family posted SMA Blog Day I figured it was about time I finally created one...a blog that is.

This is my version of SMA...My husband and I knew we wanted to have children, but when my Mother's cancer spread to multiple organs back in 2003 we decided to speed up the process. I knew my Mother was always living on borrowed time and I wanted to give her the gift of being a Grandparent. Dylan was born on Election Day 2003 after my being in labor for over 30 hours. He was the most handsome thing I had ever seen. Beautiful big blue eyes and golden blonde hair. The first few months were pure bliss. I couldn't believe the happiness that was filling my heart. When Dylan was 6 months old, my cousin Joan who is also a very experienced nurse brought to my attention that she thought there was something seriously wrong with Dylan. Ron and I fought with her, we didn't want to believe her. I read in my "Mommy to Be" books that all kids develop different. Unfortunately she proved to be right. I first heard the words Spinal Muscular Atrophy come coldly out of a Doctor's mouth. In our asking what would happen to Dylan he replied that he would most likely die.
That's it?
Die?
You must be joking. We don't quit here. My Mother should have been dead nearly 10 yrs ago according to Drs and she is still here.
Dylan went through tons of tests and Drs appointments. I have never felt so helpless and empty in my life. It was on Dylan's 9 month BD that my pediatrician called me crying that Dylan was postive for SMA and it was likely that he had Type 1. Devastation is not even a word I could use to describe how I felt.
I remember consoling my Mother who happened to be with us that day.
I remember my husband walking in the door from work asking me if his son was going to die.
I just remember feeling like my life was over.
Done.
Finished.
I am lucky to come from a family of fighters. I remember going to my Aunt's house and as I was crying in her arms she said, We can't give up on Dylan. We will all get through this together. She was right and that is exactly what we did. My whole family came together to support us. Most have sacrificed so much to help us. Some of them have slept on hospital floors, missed things with their own children and celebrated holidays in the hospital just so they could be close to Dylan and to us. I believe it is the strength of their love and hope that has helped Dylan beat the odds of this dreadful disease. We are also blessed to have such excellent nursing care for Dylan. Our nurses have become our family.

Dylan will turn 7 this November. Every birthday he celebrates is a complete miracle to me and I do treat it like a National Holiday. I am so proud of all of the things he has accomplished, he has done more in 7 years than most people do in a lifetime. He is the reason I look at things completely different and appreciate every single moment in my life. My Mother unfortunately lost her battle with Breast Cancer on March 28, 2008, the day Dylan refers to that he lost his best friend. I tell him that he can talk to her through prayers and every night he prays and talks to my Mom a bit. At the end of his prayer he says, Grandma, I Wish for Elephants. I asked him recently what that meant and he said it was his way of wishing that my Mom could talk to God and ask him to cure SMA.

Pretty impressive for a 7 yr old.

Here is how you can help Dylan and kids like him. The Gwendolyn Strong Foundation is in the running to win $20,000. Please see below to see how you can vote.

PLEASE VOTE: It’s really this simple –>

• You can vote once EVERY DAY from now until September 29th at 5 PM EDT
• Go to VoteForSMA.com, select the Gwendolyn Strong Foundation, enter the two security words, check the Official Rules box, and then click “Vote Now!”
• That’s it! It’s really that simple
• Don’t forget to add your name to the DailyVoteReminder.com list so you don’t miss a $20K vote.
• And…don’t stop there — SHARE!

Thank you for reading our first blog post. I will continue to write about the things that are happening in Dylan and his #1 Sister, Heather's lives.