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

Expectations

From time to time when my husband and I get into a disagreement (read: argument) I find myself asking him to specify what his expectations are of me. I feel that I am not able to meet expectations when I have no clue what they are. Seems logical...right? Well, his simple reply is always the same, "I don't have any expectations." That's when I call B.S.! We all have expectations. I, foolishly, even have expectations of complete strangers, which are often met with my being disappointed, but that's another story.

Recently, I find myself having to readjust my stance on expectations. I can not have any expectations of our daughter...at least physically speaking. All those lovely, insightful, books that instruct parents as to the "normal" development of their child is reduced to kindling for my burn barrel in the backyard. Since Rae has been diagnosed with Hypotonia, I have found that any expectations I daydreamed about while pregnant have become just that...dreams.

Rae is now 13 months old and if I can get her to roll over on her own ONCE during the course of a day then I feel like we have accomplished something. My heart melts if she places her tiny hand into mine when she wants to be picked up because that is quite the feat in our home. The simple achievement of drinking an entire 3 ounces from a regular bottle in one sitting is cause for celebration, which I do whole heartedly of course. Every minute, almost undetectable movement can be and often is considered progress in our eyes.

On occasion, I find myself daydreaming about when she'll stand or maybe, dare I hope, take her first step, but those dreams are masked in a fog of mystery because I can't have any preconceived notions of when to expect her to meet those milestones. When Reality body checks me (which it gladly does on a regular basis), I curl up inside myself, silently crying, hoping someone may hold the key or at least offer an answer as to WHY this has happened to our little Engel (No, that isn't spelled incorrectly, it's German). Then I pick myself back up, brush away the fear of the unknown, re-calibrate my thoughts, and move forward.

So, do I still have expectations...absolutely! I expect to have more blood work, more tests, more x-rays, more doctor appointments, more medical bills, more therapy, more smiles, more laughter, and most importantly more PROGRESS! Because even though her milestones are much smaller she is still making them...one roll at a time.

Oh, and I still have those pesky expectations of my husband, even if he claims to have none of his own for me. Round 32...ding, ding!!