As 2018 winds down, Rob and I sat down to reflect what this past year has looked like. And more importantly, we wanted to document things we never want to forget from this past year.
I’m not a scrapbooker, we rarely print pictures. Social media documents our progress and this blog knits the highs and lows into a tapestry of our life.
And so this is where our family keeps some of our sacred memories and moments and we share them with you.
I never want to forget
When Reagan would blame everything on her elbow. She’d take a full cup of water, purposefully dump it on her bathroom counter, and point to her elbow and laugh. Or take her plate and dump all her food on the table, as I watched, she would calmly say, “Elbow” with pure comedic genius.
When she learned my mom’s name, Thelma, and started calling her by her first name.
Then she started calling Daddy, “Daddy Robert” and giving us her signature mischievous grin.
She started adding “ie” to words. Do you want a snack Reagan? “Chippies. Orange chippies!!” Which means she wants cheddar and sour cream ruffles. And Huggies. She comes toward us with arms wide open saying she wants a hug, “HUGGIE PEAS!!”
Reagan tries to discipline Bauer when he barks. “No barking Bauer! Sit down Bauer!” Bauer doesn’t listen, which makes me so gleeful, because it gives Reagan just a taste of how annoying it is when someone doesn’t want to listen to you. She also wants Bauer on her bed for bedtime stories and to stay until she falls asleep, and he totally obliges.
She drives her power wheel with no hands and rarely does she look forward. She totally understands how to put it in reverse and turn the wheel, but has determined that driving with hands is 100% overrated.
We are always always impressed that Reagan has her dance routines memorized. And while she isn’t on beat, she knows the moves, and does all of them to the best of her ability. If she’s not feeling a particular costume accessory, like gloves, well…let’s just say it became our Waterloo.
Why you might ask? Why? Why? Why? Why? We’ve entered the why phase. Is it going away anytime soon? No. Why? Well I’d tell you to ask Reagan but then you’ll be 45 why questions in and forget where you started in the first place.
Getting the award for Most Talkative in dance class. (What?! How?! So excited for this one).
Asking to play with her friends by name.
Reagan has come into her own, fashion-wise. She LOVES picking out her outfits, changing them after school, after dance, after painting, after being outside, after her first nightgown, after getting food on any part of her outfit…you get the picture. More than that though, she dresses herself.
Her bravery. This year she connected the dots when she was at the hospital for a blood draw.
One thing I wish I didn’t have to write, but am going to anyway. Reagan’s extreme strong will has broken us more than we’d like to admit. On our very first Kindergarten school field trip to the zoo, Rob was one of the chaperones and I volunteered so we could help each other out. Turns out, we needed one another more than anything. Reagan became frustrated at lunch, and the talking back turned into screams and a meltdown that prevented us from moving forward more than once. We ended up having to leave the field trip, apart from her class and our hearts were so broken and burdened by what this means for our girl, who sometimes has such a hard time with emotional outbursts and behaviors. I cried for days and both of our spirits were so low.
Luckily, we have amazing friends who sat down with us and brainstormed how we could get her attention to a correct this behavior. Since clothes are the #1 thing she loves, we told her that for talking back and screaming when we ask her to do something, her punishment will be having batches of clothes taken away. It was a hot button item for Reagan and one fateful Tuesday morning in December, the plan was put into place when she started talking back to me. I came out with a handful of princess dresses and put them in a trash bag in front of her. Her reaction definitely let me know I had her attention. Unfortunately, her will of steel was still in full force. At the end of the day, three trash bags of clothes and four drawers were removed from her room. I honestly felt for all of us. I don’t want to do this, it makes me cry that we have to. Reagan can earn her items back with good behavior. We are filling up a mason jar of fuzzy pom-poms, affectionately called “warm fuzzies“. Reagan can earn warm fuzzies for listening, having good behavior and being kind. In just a day, the jar was half-full.
This brings me to another thing we are keeping in mind. Reagan is being weaned off many neurological medications. She’s currently off of two completely. Everyone’s parenting journey is different, and while I’m being super candid about ours, her struggles aren’t lost on us. In the same respect, we still have to parent and discipline. Even though she has trouble speaking, is being weaned from medications, has a genetic disorder and suffers from irreversible brain damage, she still has to be disciplined. And that is something we struggle with. Is it too much, not enough? I don’t know, she’s our first and only child and so we’re doing about as much right as we are messing up. But we’re doing all we can.
Reagan loves art. She started coloring more in the lines and her art table is a place of peace and calm. Art helps Reagan calm down, and she loves to create things.
We’re adding a larger patio to our house, Reagan tells everyone it’s for her bubbles.
We had a friend make a new table and bench, before it came Reagan would sign “different” and tell everyone “new table“.
Reagan used to sign “kind” and now she says we are “kind Mommy and kind Daddy.”
Reagan prays at night, she asks God to help her to talk. And she prays for her friends and Mommy and Daddy and MéMé and Bauer.
After a particularly tough day of discipline, she read her Bible until falling asleep.
Her love and loyalty to the little friends she’s made and kept for the three years she’s known them.
She helps with family art projects and the art that Rob makes for our house.
It’s not green or blue, it’s “Aqua” and she’ll correct you.
Reagan saying Obama for umbrella.
When we ask Reagan a question, the answer is always no. Then we wait, and she’ll tell us what she really means. We’re working on having her first answer be the one she wants to say.
“Do you want pizza, Reagan?”
“Yeah…yeah!!! YEAH DADDY!!”
The only word she can say that starts with an S is Snoopy.
Reagan’s first haircut in a real salon.
Loves playing hide and seek but is terrible at it. She says, “I’m here!”
If someone else burps, she says “Excuse Me” for them.
One of my most favorite memories is Reagan being a flower girl in a wedding. She walked down the aisle by herself, she held her flowers up to the sky at the altar, and walked into the reception like everyone was there for her exclusively.
She climbed a ladder to the top of a playground all by herself.
Her love for Santa and for Halloween. But she never eats her halloween candy.
This year we were able to be at the beach for hours and she would cry when we had to leave.
Losing three teeth and only finding one.
Positive flying experiences.
Reagan saying “I’m a miracle.”
I recently read a passage from Streams in the Desert by L.B. Cowan. It talks about taking the things the enemy has used to wear you down and bring against you, the war that he’s waging against you—to take that suffering, and turn it into spoils.
Romans 8:37 says that we are more than conquerers through Christ Jesus. And being more than a conquerer in war, means driving the enemy from your field, taking all the food, supplies, ammunition—it’s the spoils. And so much war has waged in our life, on our field, through our daughter Reagan. And with Jesus, we are fighting back, taking our spoils and being more than conquerers.
L.B. Cowan compares the storms of life this way: “Like the eagle, who sits on a crag and watches the sky as it is filling with blackness, and the forked lightnings are playing up and down, and he is sitting perfectly still, turning one eye and then the other toward the storm. But he never moves until he begins to feel the burst of the breeze and knows that the hurricane has struck him; with a scream, he swings his breast to the storm and uses the storm to go up to the sky; away he goes, borne upward upon it.”
There are many times that I hate our storm and the war we have to fight. But knowing that the storm can help me go higher, and knowing that there are spoils from the war being waged that we can appropriate for our family, allows me to look back and see, that we’ve actually done that, and continue to do that.
All the things I don’t want to forget this year…these are our spoils, and we’re not done.
December 18th, 2018 at 6:15 pm
My beautiful & wonderful family. A real testament of God’s presence in our family & being thankful & grateful for who He is—always faithful & ever present no matter the circumstances & always He is in control.❤️❤️
December 18th, 2018 at 8:05 pm
You both should congratulate yourselves on your own courage and stamina to help Reagen become the best she can be – it reminds me of the Helen Keller story and what Anne Sullivan had to do to help Helen and we all know what the world benefited from having Helen Keller with us
Just please take time for yourselves and date nights
December 19th, 2018 at 2:51 am
I know all about that iron will. My daughter has been left with nothing but basic furniture in her room on more than one occasion. She will be better for it in the long run, but for now / hold on for the ride because it’s going to be a wild one!
December 22nd, 2018 at 2:50 am
You share the struggles and challenges & you share your family love story. Being real and vulnerable out loud and publicly brings it’s own range of emotions , I see the celebrations and the bravery. I know Your courage and faith will always be connected.
God bless you all each step of the way
December 22nd, 2018 at 2:53 am
Grit + Grace .
Battles + Blessings .
Heroes + Hope.
Fears + Fashion .
Potholes + Potential.
Trust + Tutus .
Exhaustion + Exhilaration
Friction + Fuzzies
God + Promises + Joy + Progress + Love +