Inhale...exhale...repeat...

Making myself a salad in my home is an act of courage. So is walking into another room or changing Lily Kate's diaper. Answering the phone is probably the most daring task I can attempt. Why? You might ask. Because it's usually met with painful pinching and protests so loud that the thought of making the call or answering the call seems like the biggest mistake I could've made that day. God forbid I answer a call from a client or her teacher. The world seems to come to an end unless Lily Kate gets exactly what she wants. The problem is that she cannot communicate her wants and needs. Thus, non-compliance has become Lily Kate's way of communicating lately. She can be aggressive, loud and out of control in her attempt to communicate her needs. I try to imagine what it must be like to be incapable of that very simple thing...saying what it is you need. So I struggle between heartbrokenness and anger for having to deal with it. Everything becomes about what we can do to not piss her off. I tip toe around praying that she doesn't have another breakdown. And I hold my breath when I feel one about to happen. There are few breaks and breathers in my day; partially because I have 2 very demanding young children but primarily because we can't seem to get a grasp on how to help Lily Kate. It's so frustrating! Every therapist and behavioral specialist says the same thing, but they aren't living it day to day so do they really understand how to help? When I started this journey I was much more optimistic. It seems with each new challenge my hope lessens and anxiety rises. I got to a breaking point recently and my stepmom and dad swooped in to rescue me for a week. My sweet dad drove more than halfway to San Antonio to pick up Lily Kate so that my precious stepmom, mom and dad could take care of her all week long.

During that week they faced the same challenges and frustrations that I face on a day to day basis. I finally felt validated for this first time since this journey began. It was as if someone finally understood. The day to day challenges that wear on me so much. The depression that all of this has created. The hopelessness I feel in waves. That day it felt like my world was coming to an end, but in one simple text from my dad "I'll come get Lily and take care of her for the week" took more weight off my shoulders than I can describe. I had a whole week without worrying about what would happen if I made myself a salad or what would happen if I decided to sit down to rest for 1 minute. I could breathe a little easier. We spent that week doing "typical" things that "typical" families get the luxury of doing. Going out to dinner, going to a birthday party. We even had a family movie night in sleeping bags with popcorn and candy! I cherished each moment and I'm forever grateful to my sweet family who took my burdens for a week. My soul was restored.

But I missed her so much. I thought about her each day and missed all the sweet little things Lily Kate does by just being Lily Kate. I missed her smile, her laugh, her snuggles, her hugs, and sweet spirit filled with endless innocence and love. She brings something so special and unique to our family. And while I don't yet know the end result of all this, I do know that each day is a lesson and a chance to practice unconditional love, patience and strength. Maybe I'll be an expert by the time I'm 70 God-willing, but for now I'm still learning to inhale and exhale moment by moment to give Lily Kate my best. Most days I fail. Some days I do better than others. Each day whether I recognize it or not I'm thankful for God's grace. I hear a little voice sometimes saying "It's ok Theresa. It's ok to not do it perfectly." That voice had faded out completely by the time my dad sent that text, but a week later I heard it again. For that I'm very grateful!