Time is a Thief

I don't remember the first time I heard the sentiment, "time is a thief." Recently it is heavy on my mind. I haven't posted on this blog in 6 years. My 48th birthday is this month and it's been a rough year to say the least. My father passed away last year. We didn't have a good relationship since my mid-20's. Regret, what-ifs, sadness, shock are a few feelings that have stuck with me for the past 13 months. If I could go back, what would I have done better or different? How did his parenting affect and influence me? Being a responsible role model and showing my girls love have been at the top of my list. I want them to know, no matter what, I have their back and they can count on me. I think their dad and I have coparented well. Looking forward, my daughters are now teenagers and my oldest will be 18 soon. How can this have happened? Where did decades go? Where did 18 years go? Looking back, I started this blog 15 years ago after Sadie's rare chromosome disorder diagnosis. A moment that forever changed who I am. I wanted to share our story with other families who felt lost. I hoped I could connent with other families with 8p22.2 deletions. I knew nothing about Facebook in 2007 and could have never imagined to connect with so many people on online. They have brought me comfort and connection, even though we have never met. The beginning of our journey felt so lonely, I wanted to meet other 8p22.2 deletion families, but along the way I was met with a surprise. There are so many families on their own journey with a different diagnosis, but as parents we are all so connected, we are all the same. Searching for answers, friendship, connection, and the hope to be accepted and understood. I met the most amazing people through local disability organizations. In the beginning, there was so much energy and drive to fix her through therapy and education. Pressure to be faster than time and wishful thinking that she would talk and be more independent. Please give me a heart full of courage, for if you think about it too long, your heart will break for wanting her to have the life everyone else does. I thought for a while I could advocate to help make change in programs and services, but it becomes exhausting challenging the system to understand and to do the right thing. Oh the tidbits of wisdom, I have now that I wish I could have passed down to my younger self. I hope I was able to help a few people and make a little change. Angelia Schwindt said, "While we try to teach our children about life, our children teach us what life is all about." I am a better person because of my children. Fast forward, don't blink, and here we are, December 2022. She is having dental work under anesthesia at the children's hospital in a week. While she is sedated they will also do a heart ultrasound to check on the VSD hole in her heart and the amplayzer device that was inserted in the ASD hole in July 2017. Next month I will start tackling the to-do list for all the documents and legal paperwork needed to prepare for her 18th birthday. The special needs trust, guardianship, Social Security, etc. It will just be another day to her, but to me, I worry about growing older and staying healthy as long as I can. Please let me live to 100 to take care of her. I worry what the transition to adult doctors will look like and leaving the comfort of pediatic physicians, all of them have been amazing. I think she's happy and likes school. She loves to ride the bus to school, but it's bittersweet to see my friends' kids, all her age, begin to drive and get their first jobs. As I've gotten older, it is easier to accept, but sometimes the sting of envy gets me and I feel choked up a bit. We have a lot to be grateful for and I try to remember that. Even though she is fortuate enough, thanks to the hard work and advocacy for IDEA, she can stay in school till she is 22, but the early morning bus rides at 6:15am and long days are exhausting for us both. When the time is right, we will follow our own path. Maybe we can start our own day support or social group and make new friends. There's so much possibility. On that note, I will conclude with the true sentiment, "Motherhood: the days are long, but the years are short." - Gretchen Rubin and Time is a thief.

Surfing for the first time...

Surfers Healing Camp was in our area yesterday.  (click here for the History of Surfers Healing)

Our plans for the day included watching a friend's daughter surf in the morning and going to a Virginia Zoo event in the evening.  A full day ahead, I had no idea our day would be so rewarding and exciting.

Eager to get there on time to see our 7 year old friend surf, we started our 10 min walk to the beach. We hustled to the beach and walked to the Team Hoyt Tent , telling the volunteers we were there to watch, but weren't participating in Surfers Healing.

Immediately, I saw a friend who said the surfers will take some of the extra kids out to surf if there's time. I thought, that's pretty cool, but really didn't expect for Sadie to go out.

With in minutes, Sadie's dad walked over to the line and asked if they had room for Sadie.  With in seconds, they were putting a life jacket on her and walking her to the surfer and board on the beach.

It all happened SO fast...one minute we were getting settled on the beach to watch and hang out, and the next I'm scrambling to get my camera out to take photos.

The view of your child sitting on the end of a surf board, as a professional surfer (volunteer) is paddling her out to the break...so surreal and so emotional.  It was one of the most amazing events to witness. Watching them sit in the calm water rolling with the ocean.

It was a moment in time where I had no fear, only joy that she was able to sit out there and feel the breeze, feel the water, and experience something new and exciting.

We stood at the waters edge with the volunteers lining the coast to help, watching as the surfers in orange rash guards paddled out to the break and sat calmly on their boards, while children with disabilities lay happily on their stomachs protected by a team of passionate surfers.  Each hoping to give a child with a disability an experience they would always remember.

Watching from the water's edge, it looked calm and peaceful.  Living so close to the beach all my life, I have never surfed, but I felt absorbed by the moment and emotional.  I felt secure too, as if I was letting go a little bit, that someone else was able to keep her safe.

Sadie's surfer (I wish I knew his name) took her out 3 times, and only wiped out once.  He had amazing strength, as he pulled Sadie up with one hand as they were riding the wave.  When he lifted her up, she tucked her feet under her and didn't put her feet on the board.  He was able to hold her in the air.

In the end, she was given a medal, and her family a moment to feel grateful and joy for the memories that this day brought to us.

It really was one of those times in your life where you know you will remember every moment and cherish the volunteers, surfers, and organizations that care so much and offer so much to people with disabilities. Thank you Surfers Healing!