Keeping It Together

Hi, world!  I feel badly that I haven’t updated in, oh, 4 months.  :)  This winter really kicked my trash!  Does anyone else with EDS just get clobbered from November to January?  I am going to find someone to live with in Arizona next winter- mark my words!- and see if it really is the weather or if the last two Winters in Wheelchairs are just a coincidence.

So you know when you’re disabled and in bed a lot, there is only so much tv to watch or books to read before you start feeling the need for more fulfillment in your life.  Lately, I’ve been crafting.  It’s really fun!  I like CREATING things (awesome video below).  I’ve also made a goal to something for someone else at least once a week.  Combining the two is the best.  :)  Any hospital around will gladly take decoration for their childrens’ ward, for instance.  It’s really not as difficult as I thought it would be, and if you write it on your calendar, you can refer back to it on the harder days when you feel frustrated that you’re not doing what you thought you would with your life.

Here are some of my favs as of late- all projects that I could do while laying down for the most part.

I hope everyone’s doing well.  I know there are so many people out there struggling, and my thoughts and prayers really are with you.

-Jenn

Valentines’ Garland (or anytime garland!)- made from a heart punch, thread, and junk mail.  The best thing to use is old Anthropologie Catalogues.   The colors are the best!  Here’s the link to the instructions:

http://flowerpatchfarmgirl.blogspot.com/2011/01/valentines-day-craft-1-heart-garland.html

Ok, this picture is HORRIBLE because I couldn’t find my memory stick as the baby shower started!  But this garland is super super cheap and easy to make.  Each sheet of felt at the craft store is 20 cents, and for each 10-footish length of garland I used 4 pieces of felt (aka 80 cents).  You just cut a ton of circles out (I put two sheets together, traced various kitchen objects, and cut out both at once), and then stick ‘em in the sewing machine one after another (I do NOT sew, and this was easy).  Here’s the link for this one:

http://checkoutgirlcrafts.blogspot.com/2008/11/baby-its-dark-outside.html

Ok, I’ve made a few other things lately, but just realized I didn’t take pictures of those, either. Someday I’ll get on the ball and do that.

Favorite video:

www.invisibleillnessweek.com

I forgot that this week was the National Invisible Illness Awareness Week until I saw a girl’s blog today about Lyme Disease: http://victoriawilguess.blogspot.com/.  It is so funny that people can have such similar stories with completely different illnesses.  Being in lots of pain, taking years to get diagnosed with the correct thing, not finding doctors who will take on your case, struggling with the day-to-day, and not having people understand.  I’m constantly being surprised by stories of people who struggle with the same feelings, even when their circumstances are different.

I won’t take the 30-question survey this year, but this week we can all find a way to raise awareness, even if it’s just by changing a status on facebook or actually telling the person at the store who asks what’s wrong the actual story.  Do you guys do that, by the way?  Tell people what’s actually wrong?  Sometimes I do, but sometimes I don’t want to get into it since it’s such a long story so I’ll just lie.  If I’m too tired to explain why I have a crutch or scooter I say, “surgery!”  One time when I was particularly frustrating trying to get shopping bags out of my trunk a neighbor walking his dog said, “what happened to you?” and I just said, “I was born!”  Probably not the best way to raise awareness, but I was exhausted!  :)  Anyway, this week try to think of something to raise awareness with and we can all ban together to make the world a more understanding place.  Cheers!

Have you guys seen this article? It’s very interesting. This little girl is super super cute, too. I want to know more about this specialized Lycra suit! I’d trade looking like a freak for going on walks any day!
Also it was nice to see something in the news that’s not making people with EDS out to be circus freaks.
Check it out HERE!

So I am working on making a headboard from the wonderful site Knock-Off Wood, where they show you how to make Pottery Barn and other super nice furniture yourself for much cheaper. I sanded and sanded and sanded and sanded, till my ex came over and asked, “how are your splints doing with that?” I looked down and saw them. “NOOOOOOOOOOO!!!!!!” I sanded my stupid splints! What the heck was I thinking? They’re so much a part of my hands now I barely even notice them, so of course I didn’t think to take them off while I sanded. I’ve been so careful, too, to keep them nice and shiny! Whoops.
So, I think we can all take a lesson from this today; don’t sand your jewelry. It’s just stupid.
On the upside, I can now get a macbook with the aluminum it normally comes in instead of special-ordering the cheap plastic stuff. I mean, why stop now?! Hmmm. Maybe I should also paint a room and stick my fingers in a shredder. Maybe this is freeing! ….Maybe I want my shiny splints back!

I don’t really have an outlet for what I’m feeling right now, so I’m going to write about it here!  It’s not really EDS-related, but it’s (always) on my mind.

I have a niece and a bunch of nephews.

I used to live with them, and see them every single day.  Their mom was sick, and I took care of them like my own children.  My little niece, Ellie, was truly like my daughter.  She was with me from the ages of 1 to 3 1/2.  She was mine.  I try and explain this to people, and they tell me it’s different, but I know in my heart it wasn’t.  I loved her like she was my own sweet little girl.  We went shopping together and cooked together and did her hair together and read stories together and went for walks together and put her to bed together and snuggled together and watched movies together and held hands together and played together and did a hundred other things that made my days bright and each moment with her heaven.  She was the best snuggler ever.  That’s not really pertinent to the story, but she would seriously just let me hold her and snuggle for several minutes at a time without moving a muscle.  Anyway, I remember one time while I was making dinner she was throwing a huge fit on the floor, screaming and yelling and kicking, and I was so overcome with love for her I started to cry!  I never knew that love like that even existed.  I love my niece and nephews with all my heart and trying to put this even into words is ridiculous, because it can never come close to expressing how I feel about them, and how empty my arms are without them.

When their mom got better, and my Ellie bug was taken away… I don’t even know how to say it.  I felt like I would just implode.  Every day it’s just this profound emptiness and ache everywhere.  I hurt so much and am appalled that the world is still turning, still going on around me while I am feeling numb inside and grieving over the loss of my little girl.  I have prayed long and hard about it, and I know that I was given this kind of motherly love for her for a reason.  I don’t know if that’s because I will never have the chance in this life to have a child of my own, or what exactly the reason is.

I miss my nephews and I miss my little girl.

My ex-husband just got back from their reunion and told me that the kids kept asking to call me.  Their parents won’t let them.  He told me that my niece kept bouncing in saying, “I wanna call Jenn!  I wanna call Jenn!”  I know he wanted me to feel happy, but the truth is that it broke my heart even more.  It’s been a week and I can’t stop crying!  Of course, I’d already been crying all month, since finding the perfect little necklace to remind me of her.  But still.

I haven’t seen my babies in over a year.  My worst fear in the entire world is that they will think I’ve abandoned them.  I know they already did when I tried to make it better by moving here.  I moved an entire state away, in an effort to seem like less of a threat to their parents, and hopefully at least be able to call them on the phone.  Instead, I had to live with just mailing them packages every month with pictures and goodies and letters and hoping they were receiving them on the other end.

Today I found someone’s blog who recently lost a child.  I know my baby didn’t die, but being apart from her and knowing she will never ever remember me is absolute torture.  I’ve been through a lot of things in life, and this one is the worst.  It involves unimaginable pain.  Pain that I know will engulf me if I let it… and a lot of times I just wish it would.  On this family’s blog was posted a song from Wicked.  I always thought it was beautiful before, but listening to it with my sweet little girl in mind made it completely different.  It expresses a lot of what I hope she will know about me, if she remembers even a tiny bit of our time together. The only difference in the song is that I know I WAS changed for the better! Having a child makes you a completely different person.