Great Beginnings…….Sophia’s Journey through Spinal Muscular Atrophy

Somewhere through this journey………we have been able to let go of the fear, let go of the pain and to enjoy this journey together……as a family. It is hard to pinpoint when the transitioned happened……it just did. Individually and collectively as a family things have gotten so much better than they were even a year ago. I know as a father I have been able to put so much anger, hurt and questioning to rest,……….and to begin to Love life in it’s entirety again. I have been fortunate enough to be blessed with an amazing wife, and although there were so many challenges along the way; Finding that inner peace, has not only helped my marriage become the best it has ever been, but it has enabled me to become a better father. I would venture to guess there were many factors that contributed to that renewed outlook on life. Watching Sophia enjoy life has helped my psyche immensely. Prior to Sophia’s trach surgery the middle of last summer, she always was so very fragile………That has changed……….the quality of her life has never been better……and that in turn has greatly improved our lives as a family unit. We were always paralyzed with fear, afraid to take her places or be around other kids. We were always worried about her catching a bug from another child, knowing she probably would not make it through that illness. Sophia has taken us by the hand and led us……and showed us that things are okay now, telling us she can handle this. Let’s conquer this world together……….

The unsung hero in all of this is my son Jackson. He has brought another layer of Love into our lives. Watching him at 22 months interact with his big sister has been therapy in itself. Jackson has brought a purity and gentleness that one would never imagine possible from a toddler. Jackson can be playing in the backyard with his cousins, and in a full out sprint….will turn and head for his sister to give her a kiss. There have been times we are in the middle of rigorous therapies with Sophia…….and he will just start doing the same to himself almost to tell her things are okay. When he wakes up…..he makes sure to run into his sister’s room to say hi before anything else. Sophia now has a best friend and the strength of their bond is more than I could have ever asked for as a dad.

The past month we have been taking advantage of every second of the beautiful weather. Getting out and about has left little time for anything else so I apologize for the lack of blogs. The sun began to shine here in NY on Mother’s Day weekend. It was great to get out and we took the kids to a new handicap park called “Let All the Children Play” in Eisenhower Park. Sophia loved riding on the bouncing bridge and vocalized to go back over again and again. She really got a kick out of the musical tiles on the floor. We would hop the front wheels of her stroller up and down on the tiles and they would each make different sounds. I think Sophia’s favorite thing though was interacting with the other kids and watching her brother zoom over her head while he was on the swing. Jackson would giggle when he was overhead…..After playing in the park for hours we went to a restaurant for lunch with outdoor seating. We met up with Denise a fellow SMA parent and her daughter Madison. We had not had the opportunity to get together since the passing of baby Diana in December. Denise and her husband Marcello are like an Aunt and Uncle to Sophia. It was great to see them and to catch up on things. Jackson seemed to have his first crush on Madison an older girl. Madison was so sweet with Sophia and Jackson. When they left and walked to their car Jackson was straining to watch her the entire way………..it was like watching the girl of his dreams walk away. The following weekend we headed for the end of Long Island and to the Organic Farm. Sophia loved the long drive. While there she helped me to pick out all of the plants for my garden. She was very excited about that…….the prior weekend we had planted all of the flowers in Sophia’s Garden together. We had purchased a raised bed garden from The Montana Wood Store, a planter specifically designed at the perfect height for Handicap Strollers and manufactured by a fellow SMA parent. It’s safe to say Sophia has a green thumb and everything we have planted so far together has done awesome. Last weekend for Memorial Day we had a big BBQ party and invited over the cousins. The kids all had a great time and Sophia certainly is the princess of the family. Everyone else is a boy…..and if anyone had any ideas they would have to get through some fierce bodyguards. Especially the eldest of the bunch cousin Kevin. Kevin and Sophia have such a special bond. Kevin is Autistic and they just seem to get each other. They are so sweet together and really enjoy being in the company of one another. Today we are hanging out in Sophia’s paradise….her backyard and resting up for something special we have planned for next weekend! Shhhh it is a surprise and Sophia is going to love it!

It Doesn’t Matter How Long Your Journey Is in Life………..It’s About What You are Able To Accomplish along the path!

Comments

  1. Happy summer to your family!!

  2. Mary Ladd says:

    What beautiful words. You are a great dad and have an amazing family! Everyone can learn a lesson from you Vinny! God bless you always!

  3. Ksthleen Piazza says:

    Awesome blog…awesome family!

  4. I’ve always said sma is like traveling through a dense jungle in 100 degree heat with 100% humidity. It’s brutal and hard slashing your way through. Every once in a while you reach a peak or cliff with a vista where you can look out and see for miles, take a deep breath, gather yourself and pat yourself on the back for getting to this place before heading on out on the journey again.

  5. Vinnie you never cease to amaze me …your undying love support and appreciation of your family, your constant devotion to SMA and finding a cure for all children. Your wonderful positive attitude and your strength and courage to experience a colorful world with Sophia. You are also a very good writer and bring tears to my eyes I am so so proud of you I can’t even tell you. I wish everyone had a parent like you it would be a better world. I am happy you are getting to enjoy life and each day with your beautiful wife and children. May god bless you. Love always aunt janet

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