This is what community looks like. Our group of five families said lets have dinner together. Let’s pack our meals, grab a little take out, carry a blanket and set up on this lawn. Let’s talk, even if in broken conversation as we ask our kids to eat, sit still, chew or swallow. Let’s watch our kids trip over adults and sit in someone else’s lap, and hug their little friends. Let’s look in awe and wonder as our kids roar like dinosaurs, take their first steps, interact with each other and try to use their words to talk like we do. Let’s watch them try to be a friend. Let’s show our kids friendship, community and acceptance. Let’s foster love.
That’s easier said than done. It takes time and devotion to make a friend and to have the opportunity to be a friend. Deep and long lasting friendships don’t happen overnight. They happen with time and shouldering next to one another through life.
Some in this group I’ve known for 14 years, some for four. I’ve learned it’s important to welcome new friendships while fostering old ones. Make room for people…your heart is big enough to love many people.
No one should have to do life alone. If you notice someone needing a friend, take it upon yourself to be a friend. Take the time to offer yourself, your heart, your smile, your presence in a conversation. For when you do, a community within your own life can bloom.
One thing I’ve learned is that you need to wisely pick the battles you have with a toddler. For me, the nap battle was a losing one. So I ended them.
My friends thought I was crazy…WHAT?!? No more naps? [insert cry emoticon for several rows of text].
It wasn’t worth it anymore. Sometimes we’d do the no nap dance for almost two hours. Reagan was exhausted, she’d drift to sleep, I’d put her in her toddler bed, she’d wake up. Or, I’d put her down and then stand outside her door and put her back in bed every time she got up, which was every ten seconds. Too many tears and too much frustration. It wasn’t worth it. She won, I surrendered.
Our new plan of action is “quiet time” for about an hour or so, because mamma needs a moment. Reagan stays on one side of the baby gates with her toys and her very welcoming room, which begs for a certain little two and a half year old to take a nap. And I hide on the other side of the baby gates, in the kitchen eating fist fulls of trail mix, working to sell my listings or online shop (sorry Rob).
So far, Reagan has decided not to nap during the allotted “quiet time” but she has flirted with her bed and gotten in it, laid down and promptly gotten back out. She can’t say no to the freedom! I’ve had lots of suggestions to help me keep the nap going, but honestly, I don’t need them. The nap is now her choice, and it has to be for everyone’s sanity.
The day after the naps ended, my neighbor asked me to the local high school homecoming parade. I thought, sure…why not. It’s right when nap time used to be, but we don’t do those anymore. A parade sounds great.
Losing the nap is something I’ve accepted. And I’m pretty excited about the epic photos that have already ensued. Like these from the weekend…
Since naps are out…we MUST make sure the wine is stocked. Honestly, I can’t even believe the amount of sleeping she’s doing outside of her crib. It’s WAAAY more than was happening before for nap time, PLUS we’re getting stuff done!
And then there’s also trying to nap at 6 p.m. after a quick trip to the grocery store.
NOPE. It’s not nap time. You had that chance about five hours ago during quiet time.
Having optional nap time in our house has provided us with the freedom to continue on with our day and not be confined to the walls of our home for a nap that may or may not happen. It’s provided Reagan the freedom to make that choice. The other benefit to no naps is immediate sleep at bedtime. The less fighting and negotiating I have to do with a toddler the better. I understand making this choice isn’t for everyone. I certainly don’t have all the answers, but what I know is I’m a happier mommy with the optional napping and that makes for a happier everyone.
One of Reagan’s doctors is moving (waaahhhh!!) He’s Reagan’s neurologist, and one of our three favorite doctors; let me tell you why.
You’ve all heard about the things we were told by one of the other neurologists within the practice: “You need to make her comfortable, she won’t do anything, she won’t walk, she may not learn, she probably will only say a few simple words.”
Those are hard things to swallow. But the neurologist who Reagan saw regularly, he believed in her. Our first meeting after getting out of the hospital he told us that he would be aggressive in his recommendations, and it was up to us how aggressive we would want to be. He guided us with each medication he recommended to help control her movements and was honest, especially when he said: “Seizures won’t be your biggest concern, it will be her movement disorder. We need to try and get her movements under control.”
He had a plan to help.
I remember our first appointment right out of the hospital, I came in with a big tabbed binder with a section for each of her new specialists and red, teary eyes. He spent about 45 minutes explaining how the Basal Ganglia worked on a diagram. My head was spinning as he took the time to explain how the medications he was recommending would react in the brain. He talked about the electricity of the brain, positive and negative charges, how two negatives equal a positive (is that right?). I don’t remember what he said because it barely made any sense to me. What I gathered though was he was smart, and even though Reagan’s combined conditions were SO RARE, he had experience with metabolic patients and also with patients who had movement disorders.
We were in good hands.
He didn’t pretend to know it all, because after all, Reagan was a baby and every medication we’d be trying, wouldn’t be FDA approved for babies, it would be scaled down for her size and weight. When I’d read a disclaimer about a medication, he would calm my fears.
He provided us with a glimmer of hope when we were so, so low, telling us that her brain could rewire itself and find other pathways to do the things the Basal Ganglia was supposed to do. And Reagan’s brain has rewired itself, some other part of her brain is helping her walk, not the Basal Ganglia.
Earlier this year we had an appointment during a string of tough days and he looked me in the eye and said, “You need to be more positive!” It hit me in the gut, but I needed it. He told me to only compare her to herself, not to other peers her age. “You compare her to how she was doing a month ago.” It’s a mantra that has stuck with us.
Reagan’s made such huge improvements since her neurologist came into our life and I’m glad he’s been able to see her have so much progress. Her movements are much more under control, she’s walking, eating and trying to communicate. On Friday we had our our last neurology appointment with him, and he said she looked fantastic and the best he’s ever seen her.
Rob and I always said the neurology appointments were the hardest ones, but he always made them better and they ended up getting easier.
We will miss you Dr. L. You are a fantastic neurologist and our family has been extremely blessed to have Reagan under your care. Best of luck in your newest endeavors.
We just got done with our annual 24-hour EEG and Reagan did awesome. Remember last year’s EEG? We were stuck in a tiny room, in our Dr.’s outpatient facility, it was 80 degrees, we had to share a community bathroom with 12 other patients, Reagan exploded out of her diaper in a bouncer and she did not sleep at night, so we left at midnight with our AC full blast all the way home. It was one of THE worst experiences.
So when her neurologist asked us if we wanted to go to the hospital for the EEG or their outpatient facility Rob and I sung in unison “THE HOSPITAL!”
Dr.: Are you sure? B/c the hospital has sick patients, we wouldn’t want Reagan to get sick. Us: Let’s see…will we have our own room? Our own bathroom? Dr.: Yes. Us: Will it be on the neurology floor not with the general population of sick people? Dr.: Yes Us: Can we have visitors, take a walk around the grounds when we need fresh air, have food other than the provided lunchables and twinkies at the outpatient facility? Dr.: Yes. Us: Yeah, we’re confident we want to be at the hospital.
We couldn’t have even imagined her being as happy and content stuck in a room, in the hospital, hardwired into a wall and computer as she was. She didn’t cry when the probes were put on her head, she was OK with the glue keeping them on, she was even OK with them wrapping her head in whatever it is they wrap it in. The only time she screamed was when they gathered the wires into the sock/sleeve thing. I don’t know what it was about it that upset her so much, but she screamed and held onto me like an octopus.
Reagan played in the water at the sink for hours, she played with the fridge door, she walked around the room and was totally content. She ate well, napped well, played well and gave all our friends that visited and all the nurses and Dr.’s hugs when they came in, and then clapped for herself.
Night time was the true test since that’s when it all fell apart during the last EEG. Reagan and I shared a twin air mattress and she took up the entire thing. She slept great, but I didn’t fall asleep until 2 a.m. and then Reagan woke up at 3:50 a.m. to laugh hysterically in her sleep. I don’t know what’s going on, but ever since the toddler bed conversion, Reagan likes to get up for an hour or two in the middle of the night, and have laughing fits in her sleep. Not giggles, I’m talking, deep, belly, body shaking laughs. I can’t even be mad, I just wish I knew what we were laughing at. Finally we got to sleep around 5 a.m. and she wanted to be up at 6 a.m. Nope! I just kept telling her to lay down, so she laid on my neck and we snuggled for the next few hours.
How did we make it an entire 24 hours smiling and laughing through it? Rob and I were so amazed at her resiliency, which made it so much easier on us.
When the Dr. came in to tell us about the EEG, he said it was pretty good. Nothing major, no seizure activity, but some activity typical for children who are developmentally delayed…whatever that means. This is the same Dr. who said Reagan would never do anything, and for us to make her comfortable. I’ll never forget that conversation, where it happened, and even what he was wearing (a tropical hawaiian shirt and jeans). It was one of those conversations that was so defining, so memorable. It terrified us and will always stick with us; it was probably the lowest point of our lives.
So we couldn’t wait to show him the below video and watch him, watch Reagan walk around the room; he thought it was incredible. And he was truly amazed.
I don’t know why I decided to ask, but I figured his answer would have to be more positive, given all that he just witnessed.
“So Doc, now that Reagan is walking…do you think she’ll be able to talk?”
His answer wasn’t much different than a year and a half ago, “well, I think she might be able to say some simple words, maybe some simple sentences, but nothing too complex.”
What? Did he not just see the video, the walking?
This time, getting that reply was not devastating at all. It was a challenge for Rob and I. Because, that Dr. doesn’t know about our God. Our God can heal her, he is healing her…and she will talk. She will do amazing things, she already is! She is bathed in prayer, she is determined and nothing a Dr. says will change her will to succeed. I think the Dr. is actually very good, but he can manage her meds, read her EEGs and try to keep the seizures at bay, we’ll manage the opportunities we give her to show us how far she can fly.
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