Monday, July 28, 2014

Why I Write

When I was in first grade, I misspelled my first word on a spelling test. Dinosaur. I had never misspelled a word on a test before, and rarely have I misspelled a word on a test since that moment.
When I was in third grade, I was given a free-writing assignment. I chose to write about a recent dream I had. I remember becoming so engrossed in the assignment, that the time allotted was not sufficient for me to finish my story.
In tenth grade, I loved vocabulary assignments. I loved learning new words, and writing elaborate, poetic sentences on the white board.
Writing has always been a passion of mine.
But as I got older - and busier - I stopped making time to write. I also felt like I had nothing to write about. I read other blogs and thought, "I'm not an expert at anything. Nobody will want to read my blog."
Because, let's face it, I actually want people to read what I write.
Any other blog I've read is written by experts. Expert photographers. Expert designers. Expert chefs. Expert home organizers. I'm not an expert in any of those areas.
I was facing major writer's block.
Then we were blessed with Hazel.
I realized that my area of expertise is my own home. My own children.
Raising a child with a developmental difference can be stressful at times. Hazel came with her own bag of parental concerns. Is she holding her head up steadily enough? Should she be as physically active as she is? Is her back okay? When was the last time I checked her soft spot? When is her next checkup? Can this concern wait until we see the doctor next? Is that a concern for her pediatrician? Geneticist? Orthopedist? And the list goes on.
In this whirlwind of confusion, I have been blessed by other Mom bloggers who have been where I am now. I have become part of a wonderful community of parents who are going through the same struggles (and joys!).
Social media has been a helpful tool for myself and my family through these past months.
Writing has become an outlet for myself, as well as an educational tool for others (I hope!).
I don't have all the answers. I don't know everything there is to know about raising a child with achondroplasia. But I am learning.
God blessed me with a special little girl for a special purpose. And I'm not about to sit back, and let my gift go to waste.
Through this blog, I hope to educate, bless, and connect.
I am not an expert photographer, designer, chef, or home organizer. (That last one makes me laugh!)
But I am an expert at being Mommy to Annabelle and Hazel.
And that is a good enough reason to write.
Thank you all for joining my journey, and I hope you always leave blessed.
Here's just a fun little picture of me with my girls on Cow Appreciation Day.

Wednesday, July 16, 2014

Equal Restroom Access For Little People

At nearly 3 years old, Annabelle has become quite the independent little girl. When she needs to use a public restroom, she waves her hand, and tells me, "Just don't watch. I can do it." I stand off to the side, peeking at her so I can help if she falls, or starts taking too much toilet paper. She wriggles herself up onto the toilet, and I take a deep breath, ignoring all the germs she is touching.
That's what soap is for, right?
She steadies herself on the toilet, and does her business. Now for the hard part. One hand on the toilet seat, she leans over to reach the toilet paper, and pull it towards herself. She's almost there.
A wipe, hop, and flush later, and she's done. She did it all by herself!
I hoist her 27-pound frame to reach the sink. She squirms uncomfortably, as I need to do this with one arm around her waist, while I balance Hazel on my hip, mindful of her head, which could flop back at any moment.
Bubbles foam, water splashes, and we are done.
I can't wait til she is tall enough to do this all independently.
For the LP community (people with dwarfism), this is an everyday struggle. It's not just preschoolers.
I spoke with one Mom, Chrissy Bernal about this.
Her daughter, Sienna, has a form of dwarfism, called primordial dwarfism. When Sienna was 13, they took a trip to the movies. When they needed to use the restroom, Chrissy was faced with a decision. Did she lift her teenager up to the sink, so she can wash her hands? Nope.
"Normally I would lift her up to help her wash her hands in the restroom, but I wanted to see how she would do on her own,"Chrissy recalls. "Without hesitation she climbed up on the counter and washed her hands."
Sounds legit, right?
Young teenage girl, hopping onto a counter to wash her hands.
Chrissy coninues, "Two ladies were near her and didn't see me. I saw them snicker about her ."
Not only can this be humiliating, it can also be dangerous.
Chrissy saw a need for change, and was not going to sit back.
She started asking local businesses to place stools, or lower sinks in their public restrooms.
What can you do to help?
First, I ask that you consider joining this movement. The next time you use a public restroom, take an extra minute to speak with the manager of the establishment, and ask about placing a step-stool at the sinks.
Second, please take a moment to sign and share this petition for change.
Third, follow the facebook page for updates on the changes that are occurring across the country, and hopefully around the world..
This change is not only for the LP community, but also for young children.

These images were provided to me by Chrissy Bernal, to illustrate a few of the many options available for equal access.

Monday, July 14, 2014

Messy Monday: Slime With A Twist

Having a child with eczema makes sensory play a bit of a challenge. But when that child loves sensory play, you make it happen.
Having made slime (corn starch and water) a few times already, I wanted to give it a little twist this time. After a quick search for "eczema friendly sensory play", I found Interaction Imagination. Her method used lotion and corn starch, but suggested trying coconut oil.
Coconut oil? We love coconut oil!
Here is what you will need:
I melted small Dixie cups of coconut oil, and added a few drops of green food coloring. I wish I had thought ahead, and had Annabelle help with this step. Being water-based, the food coloring did not mix with the oil. Instead, it bubbled, as it sank to the bottom of the cup. A quick stir with a chopstick broke up the bubbles into several tiny specks of green, floating in the oil. What fun that would have been with multiple colors in a clear cup and a flashlight.
I then placed the cups in the refrigerator to quickly solidify the oil. I was hoping this would enhance the sensory experience. While we waited, an impromptu game of balloon baseball with a hair brush broke out in the living room.
Annabelle especially loved trying to catch the balloon, while I kept whacking it with the hairbrush, out of her reach. She did correct me at one point, however. Apparently, you are only supposed to hit the balloon with the bristles.
Hazel enjoyed the show, too. She got excited whenever the balloon floated close to her.
Before long, the coconut oil was solidified, and ready.
Just like the baking soda experiment, I started by giving Annabelle one component of the activity at a time. She played with the corn starch like it was snow, scooping, scraping, and sculpting to the best of her ability.
After about 10 minutes, I added the oil. If I were to do this activity again, I would have left the oil at room temperature, so that it would be a solid state, but not so hard. She struggled to get the oil out of the cup and melt it with her hands. This caused her to lose some interest in the block of oil, until I helped her by squeezing it between my fingers.
Once that was done, though, her mess was under way. The highlight of the activity, was when she discovered she could make farting noises by squeezing the mixture between her palms. She giggled as the goop oozed between her fingers, and the fart noises abounded.

She played for about an hour, covering her arms and face in corn starch and coconut oil. Clean-up took about 10 minutes (not including getting herself cleaned up, which wound up being a quick bath).

Thursday, July 10, 2014

The Power Of A Smile

Summer is my busiest time of the year. Since Annabelle was a baby, I have babysat through the Summer months. Having children in the home who are in different age groups can be a challenge. This Summer has been no exception. This week has been no exception. This is the first year that I have three different age groups in my home: Hazel, being a very needy infant; Annabelle, being an independent pre-schooler; and this year, Gretchen (name has been changed for protection, since she is not my child). Gretchen is 6 years old, so that gives me my third age-group. School-aged.
So we have three very different sets of needs, schedules, and interests.
We have managed so far with walks, visits to parks, and reading books from the library.
This week, Gretchen has been at day camp!
Great. I will be loaded up, and out of the house by 9am every day, ready to run my errands. Then I can come home for swimming, lunch, and naps.
Who was I kidding? It's been more like: running out to the van, racing against the clock, breakfast half-eaten and shoved in my bag, jamming more into my morning than I accomplish in an average week, late lunch, and fighting an over-tired pre-schooler down for her afternoon nap, praying she doesn't wake the sleeping infant in the next room.
Three days in, and three out of four of us simultaneously ran out of steam.
I struggled to get out of bed by 7:15, Annabelle struggled to follow simple directions, and Gretchen struggled to get excited for camp.
We talked in the van about how much fun she would have with all of her friends, but I wasn't getting anywhere with either of the two girls.
If I didn't figure something out fast, we were in for a long, grumpy day.
So I did what any Mom would do in this situation.
I cranked up the radio, and danced like a fool at a stoplight. I I think I embarrassed the girls, as they begged me to stop.
"I'm not stopping until you both give me a great big smile!"
Finally, they cracked. Big, bright smiles crossed their faces, as they started to giggle.
Then Annabelle said something insightful.
"Smiling makes me happy."
So simple, and so true.
Smiling makes me happy.
If we would all wake up, and greet the sun with a smile, our mornings would go much more smoothly.
I held onto those words for the rest of our day, as we smiled through a near-empty gas tank, late lunch, and rough nap routine.
We all need to smile more.
Because smiling makes you happy.
Children can be out best philosophers, as they have the freshest, most innocent view of their world. They don't add caveats to their thoughts, or complicate them in feeble attempts to be poetic. They are just straight-forward and simple.
Smiling makes me happy.

Wednesday, July 9, 2014

Summer Update & First Times

I shared in a previous post that I have a Summer to-do list that I created with Annabelle in mind. I felt like I hadn't completed anything on my list. I felt like I has already failed, and I would never complete all of the tasks. So, I read it over. And guess what!? We did more than I realized. We have caught fireflies, read several books, made s'mores, met with friends with a picnic.
And today, Annabelle got her first haircut!
I was excited for it until this morning. My baby girl isn't a baby anymore. She is really going to do this. She is going to get her hair trimmed.
I opened the door to the small purple building, and guided Annabelle up the step, and into the salon. We were greeted right away with a friendly, "What can we do for you today?"
Before I could even open my mouth to answer, a small voice answered for me, "I need my haircut. But just leave it on my shoulders." Annabelle flipped her hair back, as she answered her hairdresser so kindly. I chuckled at my miniature teenager.
Our hairdresser was amused as well, and made small talk about what a talker Annabelle is.
When it was her turn, Annabelle waltzed right up to the chair, and hopped onto the booster seat.
Has she done this before?
I bright yellow cape, adorned with colorful monsters was draped around her, and fastened on the tightest snap.
Annabelle smiled through the whole process, barely moving a muscle. She loved the special attention, and compliments on how pretty she looked. I couldn't be more proud of her.
And her haircut was perfect.
She didn't lose too much length: just cleaned up the ends, and added the slightest little bit of layering.
At the end, Annabelle was presented with a certificate, which I will keep forever. I'm not usually attached to things like that, but this was a special moment.
I want to thank Jenn from Drangonflies Salon for Annabelle's wonderful haircut, and such a friendly experience. They offer haircuts for children at $1 per their age. So, Annabelle's haircut was only $2. You can't beat those prices. But more important than price, is the atmosphere.
Stay tuned for more Summer updates coming soon!

Wednesday, July 2, 2014

Sleep Study

Once Hazel was diagnosed, our first order of business was to schedule a sleep study. Sleep study? She's the better sleeper between her and Annabelle. She has slept through the night since birth. There's nothing wrong with her sleep. Or is there?
The questions and doubt flooded my heart. She sometimes snores, especially when she's in her car seat. And she does that funny thing with her head to open her airways. Maybe she's sleeping too soundly. Maybe I'm sleeping too soundly. Maybe, maybe, maybe....
Deep breaths.
Count back from ten...
I can do this.
One day at a time.
One step at a time.
Okay. I can do this. We can do this. We will do this.
I had no idea what to expect as the day approached. I Googled, Facebooked, and did my research. I read blogs about other experiences with sleep studies. I saw pictures of other babies hooked up to all the sensors and wires. In doing so, I mentally placed Hazel in those hospital cribs, with the scratchy sheets and gauze wrapped around her face, wires surrounding her tiny body My heart broke. I was still at a loss.
The weeks passed, and the day quickly arrived for us to load up, and travel back to Delaware. Annabelle was so excited, as her and Daddy were going to sleep in a "princess bed " at the Ronald McDonald House. I was to stay with Hazel through her sleep study.
We had an appointment with the pulmonologist in the afternoon, which set my heart and mind at ease. The team at Nemours was friendly and welcoming once again. I cannot say enough for the staff there. Every person in that building greeted us with smiles, answering any questions, and extinguishing any concerns we had.
After we finished up with the pulmonologist, we took advantage of the beautiful weather and the playground. Annabelle was getting antsy, after being stuck in the car all morning, then playing quietly through Hazel's appointment. She was excited to have a chance to run, climb, slide, and swing her energy out.
Before long, we had dinner, and headed back to the hospital. Hazel took a catnap as we navigated the halls towards the sleep center. I got myself turned around at one point, and was helped by a kind maintenance worker, who pointed me in the right direction.
The room was plain. Nothing special about it. A couch on one side, a bed on the other, and a crib in the middle. It was all set up, waiting for Hazel.
This is it.
She was rather tolerant of the wires as they were glued to her hair and face. The technician wrapped a roll of gauze around her head and face to hold all the sensors in place, and wrapped more sensors around her torso. She looked a little silly, with her face all scrunched, peeping out of the gauze wrap. She didn't seem to mind at all.
She nursed.
And fell asleep.
And just like that, the study began.
She only woke a few times, and was settled back down without needing to be held, or nursed again. She really was a champ through the whole procedure.
6:30am came around, and the study was over, just as quickly as it began.
She was cleaned up and sent on her way.
That's it? We're done?
"We will have your results in about two weeks," we were told.
Two weeks? I  have to wait another two weeks to find out if my baby is breathing in her sleep?
When we received the results of the study, we were told that she showed no signs of central sleep apnea. In other words, she's not holding her breath in her sleep. This can be common in achondroplastic children, and can signify bigger proplems. Whew! However, she did experience some obstructive sleep apnea. Snoring. Her airways are so tiny, that any slight inflammation, irritation, or even a little boogery nose, can affect her breathing more than an average child. It wasn't bad enough to cause a need for a CPAP machine, but she was prescribed a few medications to help clear up her airways. She will also have a follow-up study in November, to see she is doing.
Yup. We get to go through it again.
But this time, I know more of what to expect.
Yes, she will be older. Yes, she will probably put up a fight next time. No, it will not be fun.
But it's in November.
Today, I am dealing with today.
Today, she is learning to roll, and reach for toys.
Today, she is starting to babble, and blow raspberries.
Today, she is smiling all the time.
Today, I am choosing to live in the present.
One day at a time.