Journal#53 – Comfort & Confusion

August 7, 2016

This is what happens when Marvel’s personality, mood, and sleep patterns have been thrown off due to medicine… And when she’s on the brink of another relapse. We go into chill mode and try to keep things as mellow and happy as possible!
We’ve got mattress in the living room, low-sodium chips for snacking, video games, YouTube videos of Disney World, and me crocheting next to my strong girl.

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It’s truly hard seeing her like this. She doesn’t want to be bothered, so sissy is being distracted with videos. My sister-girls are usually inseparable, wanting to be together even when it’s their “alone-time”.
Sitting next to Marvel to crochet, she was quick to let me know she wanted nothing crazy, she typically loves me coming to snuggle her and play.
She’s so distant in these conditions. I know it’s not her fault, and I’m trying to teach her about her medication and how it can throw her off on the inside to where it shows on the outside. She’s not old enough to completely understand, but I won’t stop trying.

I’ll be calling Children’s tomorrow to update them on everything. We’re struggling finding the right dose of prograf while also keeping her personality in tact and keeping her in remission. Praying my little girl comes back to us and for healing!

The Joys of Toddlers and Flu Shots!

October 9, 2015

Let’s start this little fairytale at two nights ago.

I was informing my Hubs on what we had in store the next day. Starting off going to our clinic to get the girls’ flu shots, then probably a treat to settle them down, before heading to the store for groceries and heading home.
You have to understand, Marvel, our 4-year old, has superhero hearing. She wasn’t within hearing distance and I was using my low voice while talking with Hubs.
And here she comes, standing at our feet, and asking, “what about a flu shot?”. Of course she caught that above everything else! Well, I’m not going to lie to my daughter. So here it goes…

I tell her, “it’s nothing to worry about, no big deal”.
She puts her head down and doesn’t move. So I ask her to look up at me. Exactly what I expected, she’s fighting back her worry tears.
“No, no baby. It’s just a real quick thing that will help you not get sick.”
Still fighting back tears, she quietly says, “but I don’t want to get shot.”
“You have to sweetheart. And so does Sissy. You don’t want to get sick do you?”
“No.”
“Ok then. It’ll be real quick and I’ll be with you the whole time. And we’ll get you a treat after.”
She was still fighting back tears.

She’s always fought back tears. I think mainly because I’ve told her “you’re fine, that’s nothing worth crying over” when the circumstance is something little. I’m sure all her times at Children’s Hospital has taught her to fight back tears as well. But it still breaks my heart seeing her trying to be so strong in front of even her Daddy and I. So, of course, I bring her in for a hug.

I go on explaining things to her. Reminding her that she watched and me and Daddy get our shots and it was real quick. I knew the longer we talked about it, the longer the tear-fight would go on. So I moved onto the rest of our tomorrow. I told her we were going to go on a girl’s only date and get a treat, whatever her and Sissy wanted. Then they were going to help me get groceries (I usually go all alone) and they could pick out an extra item each. That got her perked up a bit. Out of her mind. So I thought…

We finished our evening and got the girls to bed. The next day I learned she was worrying more than I thought. Hubs told me when he kissed her goodbye on his way out to work in the early morning, she woke up and said she didn’t want a shot, then started crying. He laid down with her until she fell back asleep.

When we all got up and started getting ready, it was like she didn’t remember she was going to the clinic. And our little Tank, our 2-year old, was just excited to be awake and start the day. Not a care in the world. We got in the car and headed out. No questions or anything about the shots. Until our exit came.

“Mama, where we going first?”
“We’ve got some running around to do today.”
“Ok. Where does this road go?”
“We’re just on our way to our first stop.”
Then she remembered.
“But I don’t want to get a shot!”
Trying to avoid the tears and worry for just a bit longer…
“We’re not worrying about that right now, baby. Let’s listen to some ‘Shaka-hooga’.”
That’s what she calls the song ‘Hooked on a Feeling’.
Entertained, until she saw the clinic. Thankfully I pulled her attention to figuring out what they were going to get for a treat. Tank was still carefree and happy to be out and about.

Checking in, they gave me two slips, one for each girl. I let them carry their slips back, which made them happy and feeling all grown up, and they put them in the basket. Then Marvel started in again. She picked her seat right across from the open door where two nurses were getting their shots ready. Just adding fuel to her fire. That’s not fun to deal with. Thankfully I didn’t have to try to calm her down very long. No wait time.
The nurse asked who was going first. No hesitation, Marvel!

Oh… good… grief! That girl does not like to be held down. I had her in my lap, turned sideways, holding her hands down with one hand and pushing her head into my neck with my other hand. That girl likes to see what’s coming. She yelled at me before screaming at the nurse when she got stuck. Oh, did she scream… Screamed! And she was not wanting to take the three, yes three, stickers the nurse was trying to hand her. So I had to pass them along. And there was a box of suckers, on the counter, she got to pick from. She limped the five steps over to the counter, got a sucker, and limped the five steps back. Seriously.

I looked at Tank right after her sister screamed. She had a look on her face that said ‘what in the world is wrong with you sis?!’. Tank wasn’t scared, or happy, or sad, or anything. Just standing there. Once I knew Marvel was fine, I picked up Tank and sat her on my lap. Same routine. She doesn’t like to be blinded either. I hid her face in my neck and she yelled “Mama!” at me before grunting at the nurse for sticking her. Yep, just a grunt. Maybe it was a growl, either would make perfect since with her. But the nurse slapped on a bandaid and that was all Tank could think about was a Bugs Bunny bandaid… Until the nurse gave her stickers and let her pick out a sucker too.

All done!

When we were walking out the door, Marvel asked me “Mama, can I rub out the pain?” Throughout the years, anytime they’ve had to get shots, I rub on it (mainly to distribute whatever was in the shot) and say “you gotta rub out the pain”. Plus, it really does help. Obviously she’s caught onto that. Then she said, all sad and defeated-like, “I gotta shot.” Hearing her, Tank shouts with excitement and a big smile, “I GOTTA SHOT!”

These two make so many emotions run through me on a daily basis. It’s no wonder why I’m so much more emotional after becoming their mother!

I can’t wait until years down the road, when I get to embarrass my girls with their stories, and then laugh about it with them!

Until then, we can look at my girls eating their free frozen yogurt from the clinic.

I strongly encourage you to take your kids for their flu shots, and get yours while you’re at it. With Marvel, if she gets sick, especially flu sick, it’s almost certain she’ll relapse and have to go back to Children’s Hospital. I do everything I can to protect her, but she’s now in preschool and gymnastics and Sunday school.

And now I go into Mothering Mode, or lecturing, or whatever you’d like to call it! Some will agree, some won’t, some minds I may change for the better…

I learned years ago, I don’t have control over everyone getting their flu shots. I pushed for all our family to get shots for two important reasons. First, so they wouldn’t get sick and go through that misery and then not get to see our little family for a long time. Second, they could still carry the virus and feel well if they didn’t get their flu shot. Even after informing them, some family still didn’t get vaccinated. I’ve done my research and 20%-30% can carry the flu virus and have no symptoms. That’s really scary to think that anyone who was in that 20-30 percentile could get my girl sick. But, like I said, I don’t have control over everyone getting their flu shots. But some do. My parents and brother, for example, let me know when they get theirs every year since Marvel’s diagnosis. I love that they tell me, it puts my mind at ease. They probably really tell me because they know I’ll be bugging them soon if they don’t! Ha-ha!

Just protect your family, your kids especially, and make sure your family gets their flu shots! Most insurances cover it anyway. What could it hurt? Besides a little sting (unless you do the mist). And if my girls can get through a little sting, anyone can!

One more thing you may not know about Nephrotic Syndrome, the mist is not allowed, it has to be a shot! And anyone who does the flu mist shouldn’t be around those with NS for a certain time period.

My Mothering Heart will always tell me to protect my girls to the fullest of my ability… To infinity and beyond!

New Memories

September 18, 2015

First off, I’ve come up with the perfect nickname for our girl. My little fighter. My tender-hearted love. My adoring daughter.

Marvel.

I’ve wanted a special name to call her. Something that was mine. One word that would sum up how I felt about her. Marvel is perfect.

When I first thought of it, I knew it was perfect. Then I laughed inside because my hubs is crazy about all the Marvel movies coming out. I looked up the actual definition out of curiosity for all meanings, and fell more in love with the nickname.

Marvel (noun) – something that causes wonder, admiration, or astonishment; a wonderful thing; a wonder or prodigy.

Marvel has never ceased to amaze me. She is so strong. She loves hard. She is dedicated. So much in one little girl. She amazes me in so many ways.

My little Marvel. That’ll be her nickname from now on when I write on this blog. With all she’s gone through, it’s perfect.

 

Ok, after rambling on my new found nickname. Onto the second thing…

This upcoming week “Marvel” will be going to her second day of PreSchool. She loved her first day. We go to our church’s preschool, so she meets up with her friend during recess (unfortunately, they aren’t in the same class). She loved her teachers and all the fun they had.

Her teachers said she was so sweet and excited. They said they enjoyed her so much. She amazes me with how she touches peoples hearts; whether in gymnastics, during doctor visits, Sunday School… She wears her heart on her sleeve.

It was hard for me to let her go. I don’t care if it’s just one day. It’s 5 stinkin’ hours that she’s not with me!

But it did give me and my little one some quality time together. I’ll look forward our 1-on-1 time every preschool day (and look forward to a big hug from my big girl when I pick her up).

So proud of my Marvel and the way she takes on the world.

 

Third thing… Yes, third… My baby girl’s nickname…

Tank.

I’ll start referring to my youngest as “Tank”. She’s hardheaded, challenges everything, bulldozes what she can, and she’s an absolute mess. My hubs called her Tank one day, and we thought PERFECT! Why not?! That’s exactly what she is. A strong, hardheaded, little lovable firecracker. So, Tank it is!

I prefer not to share their given names to the world anyway.

Marvel & Tank (for two little girls, HA!)

My Mermaid Turning 4

February 1, 2015

Yesterday my oldest had her birthday party. She’ll be turning 4 within the next few days. I don’t like it, but I can’t stop time, so I guess I’ll throw her another party.

She is in love with Ariel (The Little Mermaid). She better likes Ariel in her pink dress, but the one she would be wearing was the Mermaid dress… Therefore, the theme was “Ariel – ‘Under the Sea’ and Above”. The living room was ‘under’ and the dining room ‘above’.

I’d been making decorations for a couple of weeks and managed to hide all finished products from her. The night before her party, after she went to bed, I got busy decorating. I wanted her to wake up to the house changed over to her birthday party theme. She was so excited the next morning. She went through the rooms quickly, then she went back to study the details. Now, I do love creating a world inside my house, but I love more when my babies adore everything. I do it for them, and I created this Ariel theme for her. Made my heart happy to see her looking at the details and admiring everything all day. She couldn’t hardly wait to get dressed and have everyone come to her party. But she was most excited for Daddy to come home from work so she could show him her birthday party decorations.

Thank you to everyone who came out and celebrated our little princess. Family and friends are what make moments like these even more special… And we’re so blessed by all of you. Biggest “thank you” is going to God. He gave me this precious little girl along with her special needs and I couldn’t be happier to have her in my life. Thank you, God!

Fun, New Routine

January 25, 2015

I started the girls on a new routine this past week.

Being a stay-at-home Mom, it’s easy to get sucked into the mindset that “I have to clean the kitchen before I start breakfast” and “I need to start the laundry” and “I have to keep up with cleaning the house” and “I have to make sure the girls’ toys aren’t overtaking their playroom” and “I have to make lunch (and dinner)” and… Then between all that, there’s “Mama, I need to potty” and “Mama, I’m hungry” and “Mama, I wanna drink” and “Mama, Sissy took my toy” and … When there is finally a short, very short moment of peace, I think that moment will last long enough to relax and unwind… No.
I realized I was spending all my days giving the house more attention than I gave my girls and that their acting out was just them wanting to spend time with me. They just want me to love on them.
Now, it’s not all as bad as I just made it sound. We have loads of fun times too where all three of us girls color, or play-cook, or I try new styles with their hair, or we bake, or… Lots of things. But it wasn’t enough.

All of this to say… DING! (the lightbulb)

We haven’t been taking the girls to Sunday School due to all the flu types going around with our girl’s delicate condition. But I wanted to make sure my girls got to hear about Jesus in words they understood.
I’ve always wanted to learn how to sign, and I’ve always wanted my girls to learn. It helps motivate that we have a sweet little cousin who’s deaf. So I wanted to make sure they learned Sign Language, and I along with them.
Our girl is very much into learning. She can color great, beyond her age. She’s learned her name song, dinner prayer song, bed-time prayer, ABC’s, counts to 20, and more. She loves learning, and even better, she wants to learn. So I wanted to teach her.

Onto our new routine…

We had some schedule hiccups, this past week, and I’m learning what the girls can take with their attention span and what most appeals to them. Plus, Daddy usually has a day off during the week and every other weekend off, which means no lessons on Daddy’s days off because they just want to spend time with him. It’s really cute.

Two days a week is Bible Studies and two days is School Studies. I’ll learn the signing beforehand so I can sign while I teach them. When we’re in Studies, we sign the entire time. It’s good practice for all of us and they love it.

Breakfast when we wake up at 8:30 – after our girl takes her medicine.
Studies after breakfast, for however long it takes.
Playtime after the lessons are done.
Lunch at the kitchen table, no interruptions – except potty.
Then baby girl takes her nap.
While she naps, the first half is just me-&-big-girl’s time, second half is her alone play-time.
The rest of the day is free time. Somewhere in there Daddy comes home, baby girl wakes up, and we fit in Sister-play-time.

The second half of the day is where I do everything I need to do to keep up house. Yes, I do stay up late just so I can get in my Mommy time… Which is actually being spent making decorations for our girl’s upcoming birthday, but that’s fun anyway.

My love sofa is full of clean, unfolded towels and sheets… Half the laundry is done, but not put away… Dusting has taken a backseat… As have deep cleaning the whole house… But as one of my favorite poems state…
Cleaning and scrubbing can wait til tomorrow.
For babies grow up, we’ve learned to our sorrow.
So quiet down cobwebs, dust go to sleep,
I’m rocking my baby and babies don’t keep.

My girls are happier, and you can see their eyes because I finally trimmed their bangs, we all get out of our pajamas every morning (ok, almost every morning, or day), their hair is fixed nicely instead of only being brushed, and the best part… I feel so much more connected with my girls.
We get to spend time together learning about God and I get to teach them about the Bible, and school, and Sign Language. They have my undivided attention for at least a half a day, completely undivided.

So I think I’ve got a better… everything figured out… We shall see!

For all the Mom’s out there… Don’t let chores get in the way of connecting with your babies. I gave my girls attention before, but now they have a big amount of my undivided time. I can see how much happier they are. They get so much attention from me, that they’re content playing alone and don’t trail at my feet all day. They make me so happy already, and feeling this connection is wonderful. I’ll never get these moments again, so I have to grab them and hold tight. Motherhood is meant for raising your babies, as God intended. That’s why he gave me mine, and I will love all over them.

Q-Tip Painted Christmas Trees

December 19, 2014

Today the girls painted ornaments on paper Christmas trees using q-tips as brushes. They were excited about their art project today.


And after they painted their green trees, I brought out their pink trees and they went crazy.


They had so much fun and were occupied for for a good amount of time. We hung them up on our room divider by our big Christmas tree. They can’t wait to show Daddy!

Our Special Time with Each Girl

December 14, 2014

For a while now our oldest daughter has been needing some special attention. Both girls play together quite well, and are usually in sync with everything from wanting a drink to being moody. She, being older, is better at listening, following directions and at taking a back seat when her sister is being relentless. Which means she has to take a back seat for my attention, more than I want to admit. The younger girl isn’t able to do as much as her sister, like taking herself potty, so I have to do more for her with certain things. And she’s still learning not to throw fits, that requires a lot of my time in calming her down and talking to her about the right way to act. Plus, between the constant laundry, dishes, house cleaning, and everything else, after I lay baby girl down for a nap, I like to take a break for Mommy-Time. That’s one of the opportunities my big girl sees for having me to herself. Now, when Daddy is off, the girls give him their attention for the most part. I try to let him have a relaxing day off and try not to pass much of my ‘work’ onto him. Basically, it’s everyday with my housework, cooking, and bits with baby girl… Big girl is left without getting enough attention from me. She can get plenty from her Daddy when he’s home.

Lately I’ve really noticed how much she missed me. She’d hold my hand any chance she got (walking me from the laundry room to the kitchen sink), coming to me and saying “I just wanted to give you a quick hug”… And she started acting out every now and then in small ways, but still, it wasn’t her. It was all directed towards me too, not Daddy.

For most of baby girl’s nap time, I started having big girl cuddle with me while we watched a show. That’d get her enough to go play while I had 15-30 minutes to myself, but I could tell later in the day, it still wasn’t enough.

My Mom actually came up with a great idea of having one girl a night. She offered to take one girl for one night while we had the other, then switch the next night. That way, each girl would have special alone time with just me and Daddy. Being a crazy time of year and Daddy not having many days off, we had to shorten the time we got, but it still worked out great.

This past Friday, we dropped off both girls at Nana & Papa’s house. Me and Daddy went to watch a movie and after, we picked up only big girl and started her special time.

Since it was already evening, we started with a bath. Me and big girl shared a pink bubble bath. Yes, pink!… dissolvable bath colors. She was so excited. Daddy set us up with a movie and a Diet Coke for me and Chocolate Milk for her.

Then, I put sponge curlers in my girl’s hair while she ate ice-cream and watched Toy-Story. She loves to have curly hair and feel like a princess. I did mine too.

Onto some pretty pink nail polish, complete with sparkles and stickers.

Next, we painted faces on our white lightbulbs to make snowmen… While watching the new Sofia the First : Winter Gift.

Finally, we watched a calming show while she munched on some chips and we snuggled.

We stayed up late partying. She was so tuckered out… I told her to get in the middle of our bed and we’d be there in 5 minutes, after we got ready for bed. She was out before we were done.

The next morning, we got up early and headed to Papa’s work movie. Nana and baby girl joined us three and we watched Penguins of Madagascar.

Then we let Nana take big girl and we got our baby girl.

We had to make a Walmart run, which baby girl loved in the extended seat cart. Then we took her to have lunch at McDonald’s, after she said “eat ah donald’s”. How could we not!

On our way home, baby girl fell asleep. I laid down with her and we napped together for a while. When we woke up, we three got ready and headed to church. It was another Christmas special and some family, who usually go on Sunday morning, was there to listen to three who were in the choir.

Our special time with each girl was done. We had so much fun. Big girl had a lot of spoils and got a lot of time with me. Daddy was ok with that since it’s what she’s been needing, she gets him more often when we’re all together. Baby girl didn’t get as much time as her sister, but she usually gets more attention anyway. She still got spoiled though.

We definitely need to do this more often. Big girl got 21 months of us all to herself, then all of a sudden she has to share. And not with just anyone, but with baby girl. If you know my youngest, then you know she’s very demanding (we’re working on that) and even more ornery. It’s good for each girl to feel extra special from us, from time to time.

Good idea from Nana, and a thanks to her for watching each girl. We love them both our girls so much… We don’t like to be away from either of them, but this was needed and was so nice.

Artsy Decorations

December 14, 2014

Today, we finished our project.

I printed off snowflake coloring pages, which the girls colored beautifully, then I cut them out.

Then, while baby girl was visiting her Nana, me and big girl colored snowmen on burnt out lightbulbs (supplied by my Aunt Barbie).

Daddy helped us with the final step… Hanging them up!

So fun, festive, and the girls are proud of their art!

Thumbprints as Lightbulbs!

December 11, 2014

I’m trying to start an Arts and Crafts time with my girls. Yesterday, we made a Christmas canvas using the girls’ thumbprints.

Today & tomorrow’s craft is snowflakes and snowmen garland. But I went ahead and let them color their snowflakes yesterday so today could be spent cutting out snowflakes and putting the white base coat on the snowmen.

While the girls were coloring their snowflakes I printed out, I was writing on the canvas and drawing the lights’ string. When they were done coloring, I was ready for their thumbs.

We used 5 colors total. Big girl got 3 and baby girl got 2, so baby girl got to pick her color first. They loved getting their thumbs painted and it was so easy to make the print. They took turns and could hardly wait until the other was done.

When the thumbprints were done, I added a few extra touches, including some snow glitter. Clear spray-paint to hold it all on, and done! Fun art that matches our family and even has our girl’s special “touch”.

They really love doing crafts… I needed to start this a long time ago!

 

Chilly for Christmas Photos

November 18, 2014

Between my husband’s holiday work schedule and traveling everywhere… We had very few options for a day to take our Christmas photos. And, of course, the day we chose had to be freezing cold. Winds included.

But our girls did amazing and we had fun with our hats, beards, and moose (quite the list of props). I don’t even know how we’re going to choose which one(s) to use for our Christmas Card this year. We could go cute, or funny, or fun and so on. It’s a good problem to have, especially when our girls are 3 years and almost 2 years. Getting this many good pictures, with a wardrobe change, in cold weather… I’m proud of us 😉 It does help to have a very helpful photographer, Nana (my Mom), who knows how my babies act and can catch them perfectly!