I have been struggling with how to write this, what to say, what not to say and also how much to share.
We share a lot. I feel like everyone who reads this knows everything about our story. But some things feel sacred or maybe I just want to keep the new harder things secret. Didn’t God give us this incredible story; this “good ground” and platform, through our daughter, to share her miracle-witnessing story? Am I being prideful, vacillating between sharing and not?
As I was talking to my friend Jessie, she told me that she remembers some really transparent, vulnerable, hard blog that I wrote years ago, it didn’t have a positive spin, it was raw and emotional, she said it stuck with her. She pointed to that, and knowing where we are now, was able to visibly see the growth, the miracles and the progress in our story. An unlikely field, that had good soil beneath it, ready to produce a crop where it once seemed improbable.
Let’s dive in. We are dealing with a lot of new and really hard things. We all have problems, but even when you find a solution for old problems, new problems will arise from solutions to your old problems. Perfect and problem free living isn’t the reality of this world.
Reagan is off of three neurological medications, which is great! She was put on the medications over four years ago to help protect her from any potential future seizures and also help her mind and body figure out how to work together, to overcome her uncontrollable movements. As a result of removing three neurological medications, with precise weaning and over the course of eight months, a new problem found its way in: intense emotions and outbursts that can last a really long time.
The neurological medications she was on, likely had some of her emotions “sedated” for lack of a better word. Maybe she wasn’t feeling all her emotions, and now she’s feeling them times a thousand. We think she’s even more aware of how she feels when her peers want to play with her. We recently learned from her teacher that she’s starting to withdraw when her classmates want to include her in imaginative and dramatic play. Reagan is creative and silly and funny but it’s still hard for Reagan to verbalize fast enough and in a way others can understand, so she opts to not play and removes herself from the playground or from the situation. And, it’s possible she’s not feeling confident in her ability to use all her words with friends, yet. She knows people have a hard time understanding her and it frustrates the heck out of her. I wonder if instead of dealing with the frustration and hurt of trying to engage, she chooses to withdraw. In her mind, maybe this is a win? She doesn’t have an outburst or tantrum at school, and continues being the “good girl” that she’s expected to be and the kind and courteous girl that her teachers know.
I’ve cried a lot of tears recently because Reagan is social, but she’s adapting against her natural personality so that she doesn’t get frustrated or caught not knowing how to participate. This was not something we were expecting, but I guess it shouldn’t come as a surprise. Even though she’s social, social interactions with her peers are becoming more complex, and this is another area we need to catch up, an area we didn’t think we’d need to worry about.
Reagan is also having a hard time reading and sounding words out, she can’t say all of her sounds to begin with, so combining letters and sounds to make out a word that the teacher can understand is hard too. Even though she’s talking so much more and we can understand her more, this is another area she needs to work harder at to catch up to her peers.
She has to fight so much to even sit still enough to learn, combine that with difficulty talking, writing and other school related things, the distance between her and her peers is a constant push and pull. Contrasted with earlier in Kindergarten, when Reagan would correctly choose an answer for reading or math, now she’s having a hard time, and we wonder if she’s grasping the material.
She can’t write legibly, and truly, this is the VERY last thing I care about, but it’s also a way a teacher could test a student’s knowledge. It’s not possible to test Reagan’s knowledge through her writing numbers or letters, yet.
It’s hard for Reagan to manipulate a mouse and computer. Touch screen would be a bit easier, but the school doesn’t have that, even if they did, Reagan’s fine motor accuracy is not great and she gets frustrated now with her iPad if she messes up in selecting something for a game.
Did I mention Reagan is a perfectionist? When she would use her talker (which she adamantly refuses now) she would start to put a sentence in, and if she made one mistake, would erase the whole thing and start over. She gets frustrated if one of her baby bottles that is rounded on the bottom, won’t stay up straight. Also, why can’t these toys be made FLAT to stand up normally? Fine motor movements, specifically with her fingers and hands can be a challenge, so things are constantly dropping and falling. Reagan’s gross motor skills are good enough to get around, but she also runs into doors, and steps on our feet with her converse more times than we have patience for.
And yet she says, “sorry” so clearly. A word that’s hard to say, because of the ‘s’ and she says it in a kind voice, over and over and over. Our feet get stepped on a lot, and Bauer often yelps when he gets fallen on and stepped on. But she’s really sorry, she can’t help it or control it. We’re all frustrated, exhausted and sorry.
I want to be honest with those who follow our journey because my goodness, Reagan has come so far and we never want to forget that and we always want to acknowledge what God has restored. But the truth is, we’re constantly playing catch up with what she’s supposed to be doing for someone her age. We still feed her sometimes, because if we always left it up to her, we’d be too far away from her dietary goals, even as we’ve allowed ourselves to become somewhat relaxed, we can’t be TOO relaxed.
Excuse me while I indulge in a gymnastics illustration. We live our life on a balance beam. The balance beam is four inches wide and four feet off the ground. The room for error is unforgiving and mistakes on the beam are obvious and glaring, our life includes so much falling, failing and frustration and we just can’t seem to master anything on our beam of life. Meanwhile other people seem to be doing a flawless floor routine, with stable legs on a flat even surface. It doesn’t look like any of their obstacles are even challenging. I think to myself, “Do other people even have obstacles?” Of course they do, I know we are not unique. Our problems are different but no one is problem free.
When people say: “Reagan is doing SO GOOD!” or “How is Reagan? She seems like she’s doing amazing!” I don’t want to disappoint their high high expectation, so I say, she is doing amazing while adding, she’s a real sassy pants, because that’s cute and adorable, so the banter continues, “who isn’t sassy, she’s just knows what she wants!”
From where we came from, she’s succeeding beyond what we ever thought would be possible. But I’d be lying if I said “yes she’s doing great” and didn’t fill in some color and details. Things are still really hard. Short of a full restorative miracle, I imagine things could always be a struggle.
I say all that BECAUSE I am CLINGING, like every single day to Romans 8:28. I put it in three different translations below because I want to KNOW this truth in my soul, and I want YOU to know it.
When I’m crying because I had to carry her out of HomeGoods like a football, or when she pulled a different Mom’s hair at a Dr. appt. and I had to discipline her (Reagan, not the mom) in a Nemours lobby, amongst people coming and going, swirling about, I need to truly know that God is working something good out of it. When I lose it and all of my cool and scream back at Reagan within the walls of our home, where no one is watching except God and the dog, I need to know, God can work that out for good too. I want to remember, our daughter is good ground that God has GIVEN to us to tend.
Here’s what Romans 8:28 says:
And we know that in ALL THINGS God works for the good of those who love him, who have been called according to his purpose. Romans 8:28 (NIV)
And we know that God causes EVERYTHING to work together for the good of those who love God and are called according to his purpose for them.Romans 8:28 (NLT)
And we know that for those who love God ALL THINGS work together for good, for those who are called according to his purpose. (English Standard)
He doesn’t work out Tuesday’s mess ups but not Wednesday’s. He’s not going to put only part of our story on display and keep hidden a different part (this part). No, he’s taking ALL of it, EVERY outburst and tear, and he’s working that jazz out, FOR GOOD because we love him. He’s called us to this.
We all have our own God given field to reap and sow in. Rob and I so much want to sow good things into Reagan. And we know God can, will and IS using her story. When I get mad at God that this is our path, I am reminded of Romans 9:20-21:
“But who are you, a human being, to talk back to God? “Shall what is formed say to the one who formed it, ‘Why did you make me like this?’” Does not the potter have the right to make out of the same lump of clay some pottery for special purposes and some for common use?”
I don’t know what kind of pottery we are, but the way God made us and our family is no accident. It’s not what I thought my path would be, but I know that God WILL work ALL things hard. messy and seemingly impossible things in front of us for good. God’s got so much good waiting for us, even when our feelings say the opposite. Which is why we can’t rely on our feelings, we HAVE to rely on our faith and God’s word. It’s the only thing that’s true in this whole entire world.
January 29th, 2019 at 1:02 pm
I recognize so many of these feelings! The struggle of unmet dreams for our kids. Their need and difficulty in being heard, understood, and ultimately, respected by their peers and educators. The headstrong work we all (parents, kids, teachers, therapists alike) put in to move forward. The fear. Oh the fear! I kept thinking of Paul’s letter to the Philippians, where he encourages them to keep their heads up and strive toward the truth of things: “And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ.” I am emboldened by your tenacity and your vulnerability. I’m grateful that you share so much. Our family prays for you— and particularly R— on a regular basis. And on days when it’s hard for you or Rob or Reagan to remember the truth about things, I hope you’ll remember this verse that often holds us up: “Oh our God, We do not know what to do, but our eyes are on you.” ❤️
January 29th, 2019 at 10:23 pm
My heart breaks for you and Rob as I have walked in your shoes. Our kids are considered disabled, vs having Different Abilities. Even our able bodied kids are always being compared to others. It is so much more difficult for our special kids. Our world sometimes makes us feel like all the miraculous accomplishments they have made is never good enough. It helped me to focus on all the miracles God worked in my Childs life when no one expect it. The world will always have us compare ourselves to others and with that we will alway feel less than. You and Rob are the perfect parents for her, and she is fearfully and wonderfully made. I wish our special kids could celebrate all they have overcome, vs being frustrated for all they can’t do. Thanks for sharing your heart. Hugs to you.
January 30th, 2019 at 9:32 am
As I read your blog I am identifying with all the emotions that you write and the pain and anguish that you are experiencing as you watch with that helpless feeling of wanting so much for Regan and seeing a different reality.
Please take a minute and watch this song and https://www.youtube.com/watch?v=NLVIp_pOxMY
as it epitomizes the feelings of every mother of a special needs child. I am the grandmother of such a child. At the end of the day all we really have is the power of prayer and to do whatever we can to make the lives of these innocent souls reach the maximum potential they can. You have been entrusted with a beautiful soul and clearly you are special also. May each day bring you solace and may all your prayers be answered..