*My 13 yr old is an old lady that turns purple*
My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Sunday, November 27, 2011
Happy (Belated) Thanksgiving!
I hope that everyone had a wonderful Thanksgiving! I haven't been on my computer. I have been so busy!!! It's good. :) We are thankful for so much! We are blessed in many, many ways.
I thank God daily for letting me take care of such wonderful children. I realize that, as parents, we all feel that our children are the best, but mine never get in trouble (really!), they are polite and considerate, and truly loving. My oldest is an incredibly talented artist & singer. People are drawn to her, when she's drawing especially. She is very, very gifted. My son is very cute & sweet. He's a complicated little guy, but he's very good and he's the type that will stand up and support those that need it. I feel that he was made to help my Emily. He is her rock, and he needs her too. And Emily... She makes people become better people. They see this small, sick little girl that can't always walk so well, bloated up still on Prednisone to a size that anyone who hasn't seen her in a while wouldn't recognize, with fingers that look like grapes ready to burst at any second, but who is filled with so much love, hope, wisdom, and knowledge. She relies on other people to help her with things like her backpack some days, with stairs when she's feeling up to it, or just having a buddy to ride the elevator with on the bad days. But she is filled with such hope, and she's actually pretty happy. She's been stuck with this crap lot in life, and she gets through it by looking at sunflowers and sunshine, and with a lot of love. She isn't bitter, and she isn't angry. Most of the time she doesn't complain, either. And I wonder (a LOT) how we were blessed with this child. Us! Surely we are not worthy! And yet, here we are. When our family was falling apart, she brought us all together. When we worried about material things, she made us realize that those things don't matter. She has made us see that we can get through anything together. Her situation has taught my children we will go to the ends of the Earth to help them. They know that we are there for them. Her situation has also given us unique opportunities to help people in different ways. Never on a grand scale, but I believe often it's the little things. :) That is why I stop to smell the roses, smile up into the wind blowing on my face on a sunny day like today, and why I smile up into the rain when it's drizzling. We have all learned to appreciate the little things. Butterflies, rainbows, mountains, valleys, trees... God's gifts to us.
Those on my Facebook will have read the rest, but I had to share this with the rest of the world. We found an article online today, but because I don't feel comfortable giving away our school's name and our exact location on here, I am not posting it. I need to protect my beans <3 Last week, I wrote this on my Facebook status: (edited a bit)
have many friends that have had repeated problems with their schools.
So many that it almost seemed like we were one of the rare families that
had a great school. I have been a big cheerleader for them because of
how much thought and care they put into Emily's well being. More than
is likely typical. When they consider classroom placement, they
consider what other kids will be in the class to
make sure someone will be helping her. They made snowmen rice socks last year in her class because she uses rice socks to heat up her hands. (Pop it in the microwave for a minute or so and you have your own heating pad!) They created a system of rice socks around the school since FL
schools have outdoor hallways. Em's Raynaud's was BAD for a long time,
and she had a terrible time with the cold, so they placed them where she may need one as long as there was a microwave nearby. Last year, she was 42 lbs on October 13th when she was admitted to the hospital. When she went back to school in November she was 75 lbs. Her teacher bought her several new shirts, and her school therapist bought her a few outfits, too. When her port was placed, someone sent my son home a gift card to WalMart. Her kindergarten teacher helped the IEP
process so much. She came up with a long list of physical needs that
made it into her IEP. She loved her and carried her around the school.
We couldn't describe how grateful we are to her for all of the love
& care she showed to Em while she struggled the most.
Last week, a group of All Pro Dad's, school families that adore my kids,
school staff, the school superintendant, & other volunteers came
over my house and took care of a bunch of things that Kevin & I
couldn't get to. When you spend so much time at the doctor's, staying
home with sicks kids, running to the hospital (3 hours away) or weekly
therapy as well as working (or in Kevin's case, being sick yourself),
things get let go. This group of amazing people gave us a whole new
yard, replaced my inside doors, put in a new microwave, put up the
beautiful tile back splash in my kitchen that was my vision but I hadn't had the time to get
put up, trimmed trees, removed trees, and painted my house. WOW, huh?
We owe a LOT to a ton of people in the school. Home Depot donated $500 worth
of merchandise, CVS donated cases of water for the volunteers, Publix
donated a gift card, Bob Evans donated a holiday feast, & Ed Morse
donated 2 free oil changes. Winn Dixie donated food for the volunteers. Mr. C donated a birthday party :) He has one of those blow-up bounce house businesses. My back yard will be ready for it now! Mr. G & his wife bought us a new
grill. We are without words... just grateful and thankful.
every great thing that has happened to us has come on the heels of
something horrible, and almost every blessing has come from the school.
We are truly blessed." Thank you again to all of the volunteers- big and little.
stand in my kitchen now and just stare at it, thanking God for
all of the times that He has helped us when we so desperately needed it. I always pray for needs-
never for wants. And yet He provides. How awesome is that??? I thought it was so cool that Em's friends came out to help. What an awesome way to teach children about community.
I was raised to believe that we help the schools. It simply never occurred to us that it may be the other way around. We don't ask for help. I've given up trying to be a volunteer. It seems like at least one of the kids is sick for every event, or something happens at the last minute and we can't go. Heck, we don't even make concrete plans. For anything. A typical day for us is not the same as a typical day for others. We never know what to expect. Most people have the luxury of being blissfully ignorant to what it's like to have a sick child, or multiple sick children. One of these days, I'll have to try to explain what that's like. The short answer is that it's crazy, exciting (not always in a good way), scary, sad, beautiful, rewarding, fulfilling, blessed, and many other things. One thing that it isn't? It's never dull!!!