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.

herrarelife with a dog

As they say, cleaning up after kids at this age is like brushing your teeth while eating Oreos, and so pretzels are not on my grocery list this week.  My daughter will snack on many things.  Sometimes she will eat chips, sometimes she won't.  Sometimes she will keep her snack in the cup and other times the cup is emptied on the floor.  Most of the time our dog Daisy is our little vacuum and will eat the snacks that Sadie spills.  I was reminded this week that pretzels and cheese crackers are not going on my grocery list for a while.  I can't imagine having Sadie without Daisy around. And that's the glorious life with a dog and a child living with a disability.  =)

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.

SibShops

After participating in my state's Partners in Policymaking program 2010-2011, I learned that another PIP graduate brought SibShops to my area for her end of the year project.

"Sibshops are best described as opportunities for brothers and sisters of children with special health and developmental needs to obtain peer support and education within a recreational context. They reflect an agency's commitment to the well-being of the family member most likely to have the longest-lasting relationship with the person with special needs."

~ http://www.siblingsupport.org/sibshops/frequently-asked-questions-about-sibshops.pdf

At that time in 2011, Sadie was nearly 6 and her younger sister was nearly 3; therefore, she would have to wait at least three years to attend a meeting.

Shelbi was able to attend her first meeting this past November.  Happily, she instantly connected with the people running the meeting and also the other children in her group.  She enjoyed the meeting so much that she was excited to attend the next one.  However, due to scheduling, she couldn't attend the next meeting until yesterday.

At the meeting yesterday, she was so excited to be there, so much so that she actually didn't want me to stay with her for the meeting.

When I arrived back two hours later to pick her up, she was modeling playdoh and chatting with another sibling. This also gave me the opportunity to drive around and explore the area, stop at a few shops and grab a coffee.  We both benefited from the morning.

I'm so thankful for programs in our area to support the lives and health of siblings of people with developmental/intellectual disabilities. 

Virtual Waterway on the floor with puddling water sounds too

Beach Life

Sadie loves hanging out and playing with water.

Spicing up life

Thanks Sadie... I just said this morning that I needed to put a lock on that cabinet!

Rheumatology appointment

Last week we took Sadie to see her 11th doctor, a Rheumatologist. We have had concerns about her lack of circulation and also her super red hands and purple feet since she was a baby. When she is sitting in certain positions, her feet would turn VERY purple, but especially when we would hold her in a certain position. Her casts from 4 days old up till her surgery at 7 weeks made it worse. We notice her hands the most when she has a fever or she is exposed to more extreme temperatures. Finally after asking all the doctors with no known reason, it was recommended that we rule out Raynauds. After a long overview of Sadie's medical background, the doctor thoroughly examined her. She most confidently believed that Sadie does NOT have Raynauds. However, she explained in cases like Sadie's when kids have hypotonia (low muscle tone) that they usually have slow vessels and blood flow. She called it Vaso Motor Instability or blood pooling in the fingers and toes mostly due to low muscle tone related to blood flow and vessels. She also believed the color change in her hands during temperature change are related her Thermal Regulation or her body can't regulate itself in higher or lower temperatures. This pretty much explains her cold hands and feet. But it is scary when it's hot outside or very cold. Her little body has trouble adjusting. Since Sadie is having dental and a heart echo under anesthesia in February, she ordered a long list of blood work to get a baseline for her levels of autoimmunity, CBC, and thyroid.