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.