Posted on April 30, 2014
Posted on April 30, 2014My fundraiser ends today and I wanted to say thank you one last time. I will always be grateful to everyone who shared an interest in mine and Julianna's health. I am touched by everyone's generosity. Some donated money, some medical equipment, some sent me messages of support and love and it all has made this easier for me. It wasn't easy putting up a fundraiser for myself and I am glad I had caring friends that talked me into it. I had some people look down upon me for doing this, but having a disability teaches you that you need to ignore the negativity, there isn't room for it. I have by far had way more people reach out though. I have even been reunited with my father whom I had barely known as a child. So, I can say I have no regrets whatesoever about asking for help, I just hope I can do enough to give back.
Jeremy does murals for special needs children at no cost to the parents. He was first motivated to do this by seeing the kindness and generosity of people in the special needs community. It's unfortunate that we didn't get to see this part of people until being parents of a child with special needs, but we are always moved by watching families, friends and organizations come together to help one another.
If you know of anyone who could benefit from Jeremy's charity..please contact him. He's backed up until summer with the charity. Unfortunately, he has to do his paid work to keep us afloat, but he will always find time to schedule in more murals for Castles In Air.
So much love,
Posted on April 23, 2014
Posted on April 23, 2014I made a video that I posted here. While it may not have a lot to do with eds..it's basically the reason why I did the fundraiser in the first place, to be able to be the best parent possible to Julianna. She's amazing..the video is the best way to show others a little about autism..the purity, the happy times and the rough times as well...I hope you enjoy it.
Posted on April 18, 2014
Posted on April 18, 2014Again, it's not easy to keep up with updating like I wish I could. Julianna went in for surgery last week to remove her adenoids and there was much more tissue than expected. The surgery was very successful, but her ent still thinks this could be central sleep apnea. Now we just wait and see. She slept good for a couple nights, but is getting up for hours at a time again. It's hard..when I don't get enough sleep my eds symptoms are so much worse, sometimes mimicking the flu. I've had a lot of migraines and swollen joints and my first true hip subluxation. My hips and knees get sore alot, but seem to be more wobbly lately. Luckily, I have been fortunate enough to have the funds to buy a lot of things to help me.
This fundraiser has enabled me to get a wheelchair, braces, shoes to fit over the braces (I had to get rid of all of my shoes), two orthopedic sports bras, two orthopedic shirts, a full bodysuit back brace, a blood pressure machine, a tens unit, bracing for my hips, ring splints..I even bought an adult tricycle to try to get some exercise. It's the first time I have been able to ride a bike due to my balance issues so it's pretty exciting. I did realize that I now need soft wrist and knee braces after a quick bike ride so I think I will pretty much be braced head to toe, but if that enables me to get some exercise and have more endurance than that works for me :)
I wanted this to be a better update, but I am exhausted and have a migraine so I apologize if I am rambling or if this is getting long.
I am so thankful to friends, family and strangers who have reached out and selflessly and generously donated to help me and my family. Of course the same to those who didn't donate, but read about eds, autism, cerebral palsy...thank you for taking an interest in our lives and please know what a difference you have made. I guess I don't quite have the words to accurately express my gratitude, but this was me trying my best.
thank you so much!