The below was pulled out of the archives (a.k.a. my journal) from 2010. It is very raw and very real with some harsh language. I share this with tremendous vulnerability as a supplement to Episode #7 of the LOMAH podcast. I am thankful for how much God has changed and continues to challenge, my heart since this summer of 2010.
It is 12:30 AM. I just returned from a road trip that was supposed to take 7 hours but ended up taking 13. I am glad. I am glad because it was during the last hour my heart changed.
Hour 13 was needed for expanded perspective.
Everything about last week was last minute. In fact, we each only had 2 outfits which required multiple laundering, sometimes in the hotel sink. Every new leg of the trip happened without much thought and on a whim.
I cannot remember the last time I had so much 1:1 time with Miranda.
Since the age of 18 months, her weeks have been shared with therapists or her Dad. This trip put us together without the support of others from sunup until sundown, day after day. We slept in the same room and often the same bed.
There were several times I found myself getting agitated.
For example, when she was doing her high-pitched scream. Imagine nails on a chalkboard. Now add 10 more sets of nails and pump it up to a volume of 10. Now picture yourself in the car with that sound for hours. This was the setting for Miranda's sister and me and at one point friends, we were with.
During the screaming fits, I found myself feeling sorry for all of us in the car and just wishing Miranda would cool it.
During one leg of the trip, we stopped in the Cherokee Indian Village just so we could get out of the car (noise) for a bit. The screaming continued and we drew a crowd. I’m not kidding. While Miranda was aggressively rocking a chair and screaming, a crowd gathered.
Similar attention was given at McDonald's. A well-intentioned elderly man tried to give Miranda money, I assume to make her happy and thus stop screaming. It was nice. Nicer than the looks from the table full of judgment as Miranda lay in the toddler area of the playland with her entire hand in her mouth drooling.
Okay, maybe that judgment was warranted but she can’t scream with her hand in her mouth so I wasn’t going to correct that one. I also noticed the looks and comments when Miranda was ripping and chewing paper, or licking the wall, or drinking water from the hotel pool. I didn’t stop her. It’s impossible and not worth it.
Miranda did drink a lot of pool water. During one leg of the trip, Kendall and her friends played in the pool until exhaustion. It was great. While they went down the slide and played with squirty water things, Miranda sat and blew bubbles in the kiddie pool. Any attempt to move her came with a loud “NO!” She would stay there all day if I let her. Seriously, all day.
I am glad she can say no.
It is one way we are able to know her wishes. Lately, she has been saying "no" when she sees her bib. She is 6 1/2 and does not want to wear a bib. Who can blame her?
I am happy to finally be home after the trip and long drive.
Everyone is asleep as I write this and I should be too. As is common with autistic kids, Miranda has a hard time with sleep. This past week there was only one time she slept more than 7 hours. Most nights were 5-7 with no naps during the day. Maybe that is why I am writing this now…habit of being awake!
Hopefully, I am not giving the impression the trip was all bad. It was not. There were plenty of highlights. I am only sharing these lowlights so you can have some background in understanding the a-ha moment that opened my heart during hour 13 of the drive home.
Around hour 10 into the drive, Miranda started into a screaming and thrashing fit. It was intense. Around hour 11, I started having horrible thoughts.
Thoughts like if Miranda was not my daughter and I didn’t have to live with all she brought I would be just fine with that.
Thoughts like I wished our family could just have all “normal” kids.
Thoughts like had I known what I was signing up for I would not have had her.
Yes, those kinds of thoughts.
Horrible thoughts that make me glad others can not mind read. So hour 11 went on like this.
By hour 12, I was mad a God. In fact, I kind of gave him a tongue-lashing.
Pretty bold. But I figure I’m in a relationship with Him and all relationships go through these spells so I didn’t hold back. I told Him how mean it was of Him to do this to Miranda.
I’ve come to terms that she is not going to get much better through the years and it is quite possible her easiest times have already passed. Damn it that made me mad! What the hell? I asked God how her life could possibly be worth it for her if this is what it was to be.
It must SUCK to be her!
It was about this time that it hit me, it must suck to be her.
Not it sucks to be me because I have to clean the kitchen floor a zillion times a day but it must suck to have to wear a bib at age 6 because you can’t close your lips around a spoon.
Not it sucks to be me when I have to clean a shirt soaked with drool as a result of both hands shoved in her mouth but it must suck to be her because she can’t soothe herself.
Not it sucks to be me because she is causing a scene, but it sucks to be her because she can’t tell me her belly hurts (she had the runs the next 2 days…from drinking pool water is my guess!)
Not it sucks that Miranda won’t let me move her from the kiddie pool but it must suck to be her and be held hostage by a compulsive behavior and not be able to talk to peers.
Not it sucks to be me because I am sleep deprived but it must suck to be her because she has insomnia almost every night! Have you ever had insomnia? Doesn’t it suck? Miranda has it more nights than not!
Oh and by the way I was wrong a while back when stating Miranda was asleep…she is still awake. It’s 2:03 AM and she has been up since this morning. I just heard her, but Daddy’s got it so I continue on…
Once I was able to empathize with her my heart began to explode with love for her.
My inconveniences seemed minute compared with what it must be like for her to be trapped in her own body. Can you even begin to imagine? Try going there.
Once I got to that place it was like the Grinch and Cindy Lou. My heart grew not one size but two. It took an entire week of nonstop interaction and inconvenience for me to really see Miranda’s world.
How on earth could I have missed that all of these years???
I hope this is a turning point not just with my daughter but also how I see other people. The thing that happened was I was WITH Miranda. Even during hour 11 when I had horrible thoughts of there was no getting rid of this person. Thoughts of life would be better without her because she did not go along with my plan or because she tarnished my image. I was convinced at hour 11 that life would be better without her.
BUT….because she is in my life, my heart is growing in capacity to love.
How many people have we thrown out of our lives because they wanted different things than us or did not do what we wanted them to do? How many people have we thrown out of our lives because they tarnished our image or required too much work? My prayer is that God will continue to force those people to be in my life and not allow me to cast them aside because it is through them, I learn to love like Him.
Podcasts episodes on travel: