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.

#hrsnow

After watching Frozen twice, they finally went out for a quick run in the snow. Of course takes one kid at a time to bundle up. Sadie was being impatient, but it was rather cute when she realized the deck was freezing and she ran back inside. I got her dressed and the first thing she wants to do is sit and eat snow. 

Snow Storm

For most families and most kids, including my own, the excitement of the coming snow storm brings giggles, and smiles, the energy surrounding the feeling of going outside to watch the flakes fall and the accumulation begin.

The excitement was building the day before, as the weather forecast predicted 5-9 inches of snow beginning in the early afternoon.  Parents and teachers anxiously await early dismissal, as children try to understand coming home early for highway safety.

As a parent of a child with an intellectual disability, but also, one of the most stubborn children, waiting for school to close and the idea that we are all about to be cooped up together for days in freezing cold weather, can be stressful.  To add to the stress of that, I am the parent that manages emergency closure pickups, which can be especially daunting with a child who weighs 63 pounds and will sometime refuse to walk.  In 25 degree temperature, bundled up so tight that you can barely move arms, just adds to the struggle of getting this child to the car and buckled in without resistance.  

Sadie wasn't interested in walking,
so she was pulled by her dad on a boogie board.

As most parents of young children know, it is utterly exhausting to get every child bundled up for the cold, especially for snow play.  Hats, mittens, gloves, scarves, ski bibs, ski pants, layers and layers and layers of socks and pants, boots and boots and boots, and finally coats.  I can be completely worn out before we even open the door to feel the arctic blast.

The best part of all this frustration, the smiles and excitement of first steps in 8 inch deep snow, running and watching the dog hop through depths as tall as she is.  But most of all seeing your street blanketed in beautiful untouched snow.   The feeling of the crisp air and feeling the crunch of snow and ice underfoot, watching your children pick up snow and touch it to their tongues, throwing it in the air, running through the surprise depths of snow, makes all those frustrating moments worth it all.  Their smiles and enjoying the moment make all of it worth while.

After she kept sliding off the boogie board,
we switched to the wagon.

The most important thing for me about today is that no matter about Sadie's disability and how it can sometimes be hard, we press on and create memories as a family for the sake of our happiness and her sister's happiness, to make the most of the day, but most of all to live in the moment.   

I do have to be honest and admit that while all of that snow and walk around the neighborhood for a few hours was wonderful, I am perfectly content in the warm house drinking hot Irish tea with Sadie and knowing that our other daughter is playing at the neighbors house with her friends.

Being Grateful for Her Friends.

"Goodbye Sadie, I love you!" yelled Albert as I was walking away with her to go home Monday afternoon from school.  I looked back in awe, to see Albert smiling toward us and waving so sweetly and genuinely.  It's unconditional, innocent and the true sign of emotion and friendship between two children with disabilities.

This is Sadie's third year in the same intellectual disability self-contained classroom, which she has shared with several of the same students all three years.  Albert is one of several students who genuinely cares and looks out for Sadie.

Back in October, I attended a farm field trip with the class and saw the friendship between Sadie and her classmates.  Another student also calls after Sadie throughout the trip and smiles and wheels himself up next to her legs to reach out for her like children do with each other.  I feel that tingling surge of emotion to know that she DOES have children that really care about her.

Children's Museum

Last week, I attended another field trip to the Children's Museum and the same children called after her and reached out to touch her and interact and to just simply be her friend.  Even another child with a disability from another class walked up and leaned over and kissed her on the cheek, I dare say this might have been her first kiss, but I'm certain these kids love her and show her affection often.  Toward the end of the trip Sadie accidentally got bumped in the head, and one of her classmates asked over and over, "Is Sadie going to be alright," as she watched with genuine concern while Sadie was crying.

All of these emotions and special moments together really got me thinking about how close children are with each other while they are in a special education class.   They spend all day with each other year after year and form close attachments and bonds with each other.  They are friends. Is it no wonder that when they transition to Middle school that many struggle leaving their elementary school, teachers, and friends behind.

We are busy being parents, teachers, and adults, do we realized these children's lives are completely changing... they lose friends, navigate new buildings, new environments, new teachers and assistant teachers.  Change is hard for those of us who are "typically developing," is it any wonder children with disabilities might struggle with the change of losing a friend, and place they called home away from home for 5+ years.

Sadie won't go to middle school for at least three more years and I'm so grateful for the children she is surrounded with in her class today.  It's the most thankful feeling to know your child has friends.

Beach Life

Sadie loves hanging out and playing with water.

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!

Friendship

Abraham Lincoln said, “If you want to test a man’s character – give him power.”

With power, leadership, control over making the decisions for another person, a person takes on the responsibility to be open minded, challenged to think outside the box, and mostly to be considerate and compassionate to all people. Having the ability to alter a person's path in life is a huge burden to bear, or blessing to witness.

How one chooses to lead the direction of the person that is in question may truly test their character, test their ability to think change and inclusion can be a good thing. For what's one of the most painful emotions...feeling left out.

I challenge every reader of this post to imagine a world where we are given a chance to succeed or fail, before it is presumed we will fail, and are therefore not even given the chance either way.

Education comes in many forms, not restricted to academics. Let me ask you your favorite memory from high school or college...it is academically related or do you remember the people you were with?