I haven’t taken a vacation since 2022 and that vacation was cut short because I got COVID while we were there, and had to come back to PA due to how severe my symptoms were. Not many people know this, but I actually didn’t even want to go on that vacation because it was a trip my mother arranged for all of my immediate family to go on, knowing that she would not survive her cancer to join us all. It made the trip even more emotional than I could have imagined, then to get COVID for the first time while there- it was really just not my ideal vacation. Now I’m seeing photos of everyone on their beach trips, mountain resorts with their families, road tripping to other parts of the country and European backpacking adventures and I’m downright jealous. Jealous mainly because I feel like I deserve a vacation after four years of grief, stress, anxiety, navigating this life filled with so many unknowns and uncertainties. I want to go on a vacation. Heck, I NEED to go on a vacation.

Today would have been my mother’s 69th birthday. I can’t even imagine her being so close to 70 since her passing away at 64 felt like yesterday. Hilton Head Island was my mother’s favorite beach for so many years. She started going there with my grandparents long ago (in the 1970’s I believe) and among her family trips, then branching off to bringing her own children there, we all have a very soft spot for HHI. My siblings and all our children love the beach and the South Carolina sun and each summer I urge to go so badly. But as many know, traveling with a child that has Autism as severe as Greyson’s, is not an easy task. Honestly, it’s really freaking hard. I can’t even imagine trying to go on a vacation as a family of four. It would be nearly impossible for us.

Not many do know what all goes into traveling with a medically sensitive and severely Autistic child. I plan for trips like the vacation to the beach, for about 3-6 months before we go. Not only do I need to strategically look at rental properties that would be best for Greyson, like: are the TVs all mounted, is the distance to an elevator/staircase and handicapped parking feasible for him, are there many knick-nacks or glass tables that could be eaten or broken, etc., but I also need to take into consideration the distance to the nearest hospital(s) and the time of year we would be going. July is notoriously bad for Jelly Fish in HHI, so we try to avoid July, but June is when the beach is super packed because school is out for summer and everyone wants to be on the beach. Mid to late August is ideal, since schools in the south typically go back fairly early on and our schools don’t go back until the end of August. The rates for many places go down and we are able to book a place while saving money and the headache of too many tourists.

I’m sure there are many families that are in a similar position as we are, but I don’t know how families travel without a nurse or another adult to assist with the medically fragile child. I don’t think we have anyone in our life, with exception of family, who would be crazy enough to spend a week with us at the beach without lots of alcohol or by getting paid to be there. Derek and I don’t live in a box, we understand that our family dynamic is a lot to handle and Greyson can be quite challenging for many. But when all is said and done, Greyson loves the water and hanging out in his swim vest, catching some waves breaking along the shore, and I am typically found on the beach with a book in hand.

This has been an emotionally charged week, for sure. First, the 8th anniversary of the Grandfather’s passing was yesterday. It’s insane to believe that he has been gone for 8 years already. Again, another close loved one who left us all too soon, and I miss him every time I open my mouth to sing, or hear a jazz song. As I mentioned before, today is my mother’s birthday. I miss her so much. If you have lost a parent or someone so incredibly close to you, you understand how a part of you feels like it’s died too when that person has left you, too. Between my mother and grandfather, I’d say a large chunk of me is missing, and I wish they were here so I could ask them questions, get advice or just to hear their voices. They say it gets easier as time goes on, but I wholeheartedly disagree. I think it will always be hard and difficult. I may not cry as much now as I did four years ago, but I still catch myself tearing up often when I think of them and how much they have missed out on over the last few years. My Grandpa’s voice will always ring in my head, “Diva!”, as he used to call me. And my mom’s incredible laugh and great sense of humor will always be in my heart and on my mind.

Friday is Roslynn’s graduation from Elementary School, the last day of school, and her 11th Birthday. For her birthday, we decided to avoid a party this year and do a “fun day” instead. She has chosen to go to Round One to play games and have fun with the family and to get her ears pierced. I am not prepared at all for summer vacation and I am not ready to entertain these kids for 3 months, but I’m hoping that Roslynn will enjoy another summer at Woodcrest summer camp, and Greyson will enjoy spending summer break at our local community pool, the Autism Clinic and the bowling alley. He went bowling for the first time ever this week, and really had a fun time pushing the ball down the ramp and watching the pins reset between plays. We will most likely be spending at least one day a week at the bowling alley to help Greyson hone his bowling skills. HA!

I was finally able to go outside today, after several days of rain in a row. The kids were playing in the sprinkler and splash pad, so I had the chance to check in on some of the fruits, veggies and flowers that Greyson and I planted earlier this month. He is very interested in the raised flower beds but I don’t want him to be too interested right now, or he will have issues with little hands touching the sprouting plants. My mom loved to garden and plant things, so I’m hoping I can pass the interest down to one or both of the kiddos. I hope the garden does well this summer, I really want the kids to see that effort and consistency will always benefit everyone in the long run.