Mess Maker, Mess Maker, Make Me a Mess!

If you meet me five years ago (heck even three years ago to be honest), you may have noticed that I have some quirks (okay...a LOT). Especially when it came to chaos. I like structure (to a degree). I like things being played with in a careful manner. I like toys being put away not just thrown into a random bucket. I like the floors clear of hurdles. These likes do not always go hand in hand with having children. I knew this. I also knew that there were ways to help you chid learn to put toys away properly. When I worked in pre-school that is exactly what we did after free play...we cleaned up and put toys in the designated storage place. Everything was labeled with the item name and a picture. The adults helped. Easy-peasy!

Fast forward to the present.....

Rae doesn't make messes. She never has to put her toys away. She doesn't leave blocks or dolls strewn all over the living room. She never drags my tupperware out to use as a drum set. She doesn't draw on the walls or herself (heck, she would prefer to eat the crayons than draw with them). She doesn't splash water all over the bathroom or pile bubbles on top of her head. Her books stay neat and tidy on the book shelves. If I lay her down or sit her in a chair she is going to stay there. Her clothes are always exactly where I leave them (usually on the chair in her bedroom) and she has yet to misplace a shoe.

This list could go on forever.

It is one of the biggest changes in me that has taken place since Rae was born. Now I love it when my friends bring their kids over and tear up Rae's therapy space (it looks like a toy store). I smiled when one brown haired cutie toddled around my kitchen opening all of my cabinet doors. I joyfully chase after them as the run around trying to find something else to get into. I listen to their endless chatter about absolutely nothing and revel in the beauty of their jibber jabber. The things that used to work my last nerve have become a reprieve from my reality. I don't want my friends to apologize (in fact I apologize for not being "baby proofed"). Heck, I don't even care if they help me clean up. I just want to bask in the normalcy of the mess.

One of the things that bothers me though, my former self is so burned into some people's memory that they feel I am going to get upset if their children bring chaos and messes (gasp!) into our home. Don't get me wrong...our life can be a bit chaotic and messy, but it is a totally unwelcome type of mess. The revolving door of therapists and doctors. The ever growing collection of medical equipment. The box of empty medication bottles and precarious mountain of plastic syringes. The towering stacks of medical paperwork and bills (all of which gets filed in our own Big Book of Boo Boo's...at some point). No one wants that kind of mess!

But, for those brief visits I get to see the messes that could have been and boy it would have been something else! (I wouldn't have appreciated it if Rae wasn't who she is) Looking at it in the rearview mirror allows me to see the beauty of those messes and also shows me how much I've grown from the lessons Rae has taught me (all my former habits can't change...I still keep her toys pretty tidy). I still have so much to learn from her.

A place for everything and everything in its place!

The Quilt I Wear

Every morning, after I throw my blankets off and crawl out of bed, I pick up a quilt at the foot of my bed, wrap it around my shoulders, and weigh myself down day after day. After a year of dragging this quilt around every where I go, it is starting to look a little worn and a few places have become threadbare. The weight makes me feel exhausted (mentally, physically, emotionally, & spiritually). It's not the prettiest quilt, by anyone's definition, but it is mine and I just can't seem to leave it at the foot of my bed where it belongs.

It's my Guilt Quilt.

My quilt is made up of everything I feel insecure about and all the things I feel I don't do well enough. Every square is another piece of my guilty conscience (justifiable or not).

Top 24 Guilt Quilt Squares

1. I don't spend enough time doing therapy with Rae, I don't make her work as much as she should, and I cave in to her will on a regular basis. 
2. I'm not being as proactive as I should in finding help/assistance for Rae.
3. I don't keep my home clean enough. (UGH...chores!!!)
4. I don't keep my yard trimmed/cut. (Double UGH...more chores!!!)
5. I don't bake/cook as often as I think I should.
6. I don't get the laundry done. (if I do manage to wash everything it will lay on my dining room table for a few days before I put it all away).
7. My husband and I don't spend enough time together without all the distractions of life (Rae, emotions, "stuff") getting in the way. (this is a doozie and often leaves me feeling lonely)
8. I can't really return "favors" or do things for the people I care for & love.
9. I don't call my family/friends often enough to see how they are doing.
10. I don't do anything with my photography website or photography in general.
11. I don't make all of Rae's food. (seriously I'm doing the best I can)
12. We don't get enough sleep...I constantly toss and turn (the sand man needs to give me a double dose!) and my husband snores so I'm always shaking him to make it stop.
13. I'm angry, sad, resentful, mean, depressed, exhausted, selfish, crazed, mad, nit-picky, lazy, undisciplined...okay this list can go on forever.
14. I'm not as neighborly as I want to be or think I should be.
15. I don't exercise and I don't eat well. (Oooo....Taco Bell Thursday!)
16. I did this to my daughter because it is likely a genetic thing and that comes from us.
17. She doesn't walk, crawl, or roll over because I don't work with her enough.
18. She doesn't talk/sign/communicate because I don't work with her enough.
19. I should have caught the seizures sooner. (Why oh WHY didn't I see it sooner???)
20. I should have noticed there was a problem sooner than five months. (Yes, I was a new mom, but I should have known!)
21. I get frustrated with Rae. (every parents struggle)
22. I have to make decisions about who gets medical treatment based on finances...I really need to have my knee x-rayed, but I can wait because we have to have another MRI that has to be done for Rae and it's more important. (yes, I know that I need to take care of myself so I can take care of her and I promise I'll get to it...eventually)
23. I really shouldn't yell so much when I'm upset...at least I don't hit.
24. I never finish ANYTHING! I have so many little projects just sitting in piles that I could open my own craft store. (okay maybe I'm exaggerating a little, but I really need to finish something)

Now that I've talked about the guilt that has been sewn together to make one giant, heavy, burden that I carry around all day, I'm going to share the beautiful aspects of my quilt and the lessons it has been teaching me. These quilt squares are the things I believe I'm doing right. (the list probably isn't as long as my guilt list)

Top 10 Positive Quilt Squares

1. I love, Love, LOVE my daughter!!! She is my joy, my passion, and my purpose.
2. I try to show my husband that he is as important as Rae and that I love him too (I don't always succeed, but I try). It's easy to lose sight of the people around you when you're struggling with something or to take the frustration out on them.
3. I keep all of Rae's medical "stuff" in a fairly well organized binder (it's the only organized thing in my house). This one little show of organization makes bills, receipts (very important), appointments, insurance info, doctor contact info, and programs easier to find when I need them and offers me some peace.
4. I research what I believe may help Rae, her doctors, or us in helping her make further progress or figure out what is causing the problem. I have learned to limit this research by declaring computer free/doctor free days. This allows me to focus on the ever growing list of things I haven't gotten around to doing. I feel a greater sense of accomplishment knowing I finished something...even if it was simply dusting the living room, mowing the grass, or just playing with Rae.
5. I am learning to ask for help (that is never easy for the person who is used to being the helper). When it comes to something I need for Rae I am going to pull every string and ask for any assistance we may qualify for (which isn't much right now). I will have no shame when it concerns our daughter's needs.
6. I am making time for myself, for "us," for Rae, and for our friends/family that isn't centered around our current distressing situation (if you haven't started doing this I highly recommend it). Rae spends at least one night a week with her Mimi and G-Boss. This gives us a much needed break and allows us to enjoy a night to ourselves. Thank God for Grandparents!
7. Even though I think I'm not being proactive enough...I am being proactive. I don't have to sit at the computer all day or tie myself to the phone in order to get anywhere. I am trying to keep it simple and focus on one task at a time.
8. I allow myself to feel the emotions that present themselves. I don't wallow in them. I acknowledge they are there and then I work to move forward. Yes, some will circle back around, but I'll deal with them when they get here.
9. Some days are better then others and I'm learning to seek out the good things, not the bad.
10. Even though it is frustrating to no end, I have NO control over this situation and I realize that I have NO control. We will have to roll with the punches and have faith. (thanks for all the encouragement Maria, you are one of many prayer warriors that keeps me grounded)

It's always been easier to see the bad things in life, the things we do wrong, and the shortcomings we see in ourselves that other probably don't see. They hold us back and keep us from becoming the people we want to be. I challenge everyone that reads this to make an effort to find the positive things, no matter what the struggle is, seek out the things you are doing right. You'll be surprised what you find out about yourself. I always knew I was strong and in my weakest moments, when I feel like I can't take anymore, strength to rise up and push forward always seems to find me.

"Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong." 2 Cor. 12:10