Our Journey So Far

How it All Started

“When you hear hooves, you expect horses, not zebras”

An old saying that dates back to the 1940’s. It was intended to remind doctors to look for the common ailment instead of the rare. It has been since adopted by the rare disease community, calling our kiddos with rare diseases, like WAGR Syndrome, zebras. They are not typical in any way shape or form. We have to expect the unexpected and can’t predict much of anything.

My perfectly, unexpectedly, rare newborn

And my family has adopted it. Little Miss is our little zebra. When she was born, I expected a horse (ok not literally). I expected the normal, happy, healthy baby to be laid in my arms. Ok this isn’t 100% accurate. We knew she had a heart murmur but were told this was common and would heal on it’s on. It did. Life went on expecting normal. We encountered a “normal” tongue and lip tie followed by a quick revision. Again, we continued expecting normal. But deep down, I knew life wasn’t normal. I just had no idea how not normal it really was.

On December 20^th, Little Miss wasn’t even a month old yet, we all went to a “normal” winter holiday party. We were surrounded by friends, having a merry time, and being quite “normal”. That night definitely did not end normal. What was a normal, typical night, took a turn for the worst when, in the excitement of the party, the baby was bumped and we were concerned she had a head injury. We took her straight to the local children’s ER. After a very frightening several hours, we were told that there wasn’t any major head injury but my daughter had a rare condition where she had no iris in her eye and had bilateral cataracts.

My little black eyed beauty

The next few days were a whirlwind off doctors, tests, uncertainty, and google searches. By the end of the year, I was filled with more dread than hope and still had very little idea of what lay ahead of us.

My research had shown that Aniridia, or the no iris condition, was typically caused by a dominant trait that had to be passed down. Layman’s terms, either I or her father had to have it for her to have it. Obviously I didn’t have it or I would have expected it at birth but her father was a bit of a mystery. Not being someone I could contact and me not remembering his eye color at the time, I had convinced myself that he had a mild case and had hid it from me and lied to me. My mind could not even comprehend the other option so I fully blamed the one person who was not there. Again, I still had no idea of how wrong I was.

We finally got into one of the top children’s hospitals in the world to see a pediatric eye doctor specializing in cataracts. That was the first step we had towards answers. Such a difference from the doctors back home who left us with more questions than answers, we actually left with a plan and an idea of what our future might be. It wasn’t the prettiest future but at least it was becoming clearer.

Eye protectors after surgery.

Our new doctor didn’t want the cataracts to remain in her eyes any longer than they had to and he immediately got us booked for surgery. What I didn’t understand at the time, all baby’s eyes are born underdeveloped and the child’s interaction with the world stimulated the growth and development. The cataracts in both of her eyes were blocking that stimulation. Surgery was needed to remove the cataracts and give her eyes the most opportunity for growth and development possible. And when the doctor said he wanted them out as soon as possible, he was not kidding. We were back in a mere week later prepping for surgery. That was one of the most difficult things I have ever had to do. Even with everything else to this point, it’s still the hardest challenge we’ve faced.

The next few weeks were filled with multiple trips to the hospital for appointments and follow-ups. We found many more eye conditions in my child’s delicate eyes. We learned that she has nystagmus which causes her eyes to bounce. She has foveal hypoplasia, or underdeveloped back of her eye. This was a bit of a hit to us. It meant that no matter how much we worked with her and how many opportunities we gave her eyes to develop, she would never see perfectly. I don’t know if they did it on purpose, but never once in the early weeks did the doctors say the word blind.

When they remove the cataracts in babies, they do it just like they do in the elderly, they remove the whole lens. The biggest difference is that they don’t want to replace it immediately with babies. A baby’s head grows so much in the first year of life and so does their eye. An artificial lens doesn’t have the same ability as the natural lens to grow with the eye. Our doctor wanted to wait as long as possible, a year was the goal, before putting the artificial lens implants in. That meant that Little Miss needed some type of corrective lens. A typical corrective lens in someone with glasses only has to correct by 2 or 3 points. Little Miss was going to need a correction of upwards of 25 or higher. Glasses for that size of a correction would have been so thick it would not have stayed in an itty bitty frame for babies. That left contact lenses.

Picture from http://eyepowerkidswear.com/infant-contacts-101/

Most people were shocked that my daughter at the young age of 3 months was wearing contact lenses and the first question most asked was, “but how does she put them in?” The answer, simply, is she doesn’t. I do. And a new doctor, one specializing in contacts, had to teach me how. These were not the soft lenses that most people use. These were rigid hard lenses and had a special way of handling. Our first contact fitting wasn’t just a fitting, it was a lesson to me. It was a major anxiety attack. How could I do this to my poor little baby? She did not like it but could I blame her, she had just had surgery on her eyes and had never seen the bright lights and colors that surrounded her after a lens focused it all in her eye. Oh did I not mention earlier, aniridia comes with major light sensitivity. But after a few lessons and some major frustration, I learned to put her contact in and out like a pro. I felt things were starting to normalize (I had given up on actual normal at this point but had hoped for our new normal). Again I was wrong.

Only two weeks after her cataract surgery, her eye pressure spiked to a dangerous 54. If you don’t know anything about the eye, basically normal (there’s that word again) eye pressure is under 20. Unfortunately for me this happened the same week that Boy Child ended up in the local hospital with a mystery infection in his leg. The eye doctor was so concerned about the number that he would not let us go home until it had lowered at least some. Turns out his magic number was 35. We got her pressure down to 35 and were released for the night. She had a follow up scheduled the next day but I was able to go home and spend the night in a different hospital with my other child. Thankfully, he was fine and released the next day so I didn’t have to worry about him quite as much. That week would not have been possible if I didn’t have the amazing support from my whole family. My mom and dad (who have been divorced for a few years by that point) tag teamed sitting with Boy Child in the hospital while I had to be out of town with Little Miss. My grandmother kept Little Miss AND administered the slew of eye drops through the night so that I could spend the night with Boy Child where I was needed most. Little rest was had by anyone.

That week led to another surgery, and another, and another. By mid-March we had 4 surgeries under our belts and a laundry list of eye disorders and conditions we had been through. We finally had our genetics appointment. As I said earlier, MOST cases of aniridia are from a dominant trait being passed down but not all. That other option was that it was caused by a sporadic deletion on chromosome 11. This option would take the blame off her father but also include so many other health issues. This was WAGR syndrome. Now you can see why, in those earliest weeks, my mind couldn’t comprehend this option.

After we met with the genetics department, discussed in detail both Little Miss’s history and mine, and had a hefty amount of blood drawn from the baby, we were put on a waiting game. I was told that the genetic spread would take a few weeks to come back. I left still feeling very confident that the tests would show nothing and that her father was completely at fault. We continued on with our new normal life.

That was March 23^rd. April 12^th started out pretty normal, just like that day almost four months previously. It became our next earth shattering day. I took the kids to a local music class. I went to the Y for some Mommy time. I went grocery shopping. As I was loading both the kids and the groceries into the car, I got a phone call that changed everything. The phone call I was anxiously waiting for but also dreading.

Little Miss had WAGR Syndrome.

I couldn’t believe it. I had convinced myself that she just had aniridia. I was sure of it. There was no way she could have had WAGR. There was nothing else wrong with her. I mean, how could there be? My sweet baby had been through so much already with all the eye disorders and conditions. But there it was. The nurse explained to me a little of what to expect and what the next step was but I was numb. I was in shock. Thankfully, the kids were already fastened into their car seats. They both rear faced too so I climbed in the front seat and silently cried. I called my mom and told her the news. She cried. There was nothing else we could do in that moment.

At four and a half months old, the fog of denial and uncertainty had lifted. I knew what was to come, or I thought I did. Of course in my research, I learned that it was extremely rare. Even though I just knew she didn’t have it, I still looked up the basics on it anyways. I knew pretty much there were so few cases that no one really knew much of anything in depth on WAGR. I felt totally alone. No one I knew had ever even heard of WAGR let alone been through it. That day was the turning point for us. We had to become the experts. We had to be the ones to watch over this precious child who never asked for any of the challenges that she faced but was handed anyways. After those tears (and honestly, many more to come) I learned a valuable lesson in strength. When life throws you stinky piles of manure, you use it to grow something extraordinarily unique. Our little zebra, and her gorilla family, would stand tall and persevere. 

Toys Galore!

***I would like to start out with an apology for missing this weekends posts. Life has gotten in the way unfortunately. 

I’ve not been able to declutter quite as fast as I had hoped. My original plan had been to show my amazing kitchen declutter. Well, that didn’t exactly happen. Life slightly got in the way. I did however manage to tackle our mass amounts of toys.

Now I didn’t declutter all of them but I did pull several out to add to our yard sale this spring. The rest I have divided for toy rotation. I’m really hoping that the kids, specifically boy child, will understand that we half the toys are on vacation for a couple of weeks and that we are only going to have access to about half our toys at any given point. The last time we rotated toys, he really struggled with the idea that some toys were just put up for a short time. We even tried a trading system where he had to trade one toy type for another. Little miss doesn’t seem to notice when toys are missing so I don’t think she will mind the rotation. The change will be done while both kids are not at home and hopefully the toys will spark the new toy joy when they see them.

Such total concentration.

Now on to the declutter. I totally forgot before pictures but you can imagine how messy it would get. The kids would dump out all the toys in the playroom all at once even adding a few from their rooms. Same thing would happen in their rooms too. Now it didn’t take me long to clean it up since everything has always had a home but it would completely overwhelm the kids to the point that they would refuse to play in there and couldn’t clean up themselves. This is what spurred my decision to focus on toys first. Hopefully, simplified toys will occupy the kids so I can spend bits of time focusing on the rest of the house.

I first tackled the playroom. I did most of the work after the kids were in bed. I do go through and purge the toys on a fairly regular basis for toys they have outgrown so there may not be quite as many as you might think in the yard sale pile. So here are the toys that didn’t make the cut.

• Older Fisher Price Little People play house – This was given to us about a year ago by a friend who was moving and couldn’t take it with but it was slightly broken. Then Little Miss was given the newer one for Christmas this year so there really is no need for double doll houses.
  
• Plastic ring stacker – Both kids have pretty much outgrown the baby toys so this one finally is getting the boot. It was much loved and used to help Little Miss make some connections that typical kids make easily.
  
• Vibrating Back Massager – The Boy Child used this as a sensory tool for a while but since it has not had working batteries and he hasn’t cared for a while now, it’s time to pass it along.
  
• Various other odds and ends – Little Miss has a tendency to tear everything up so we did find a bit of destroyed books or shredded tissues stashed in the corners. We also tossed a handful of other baby toys.

That doesn’t seem like a lot to get rid of but I tamed the clutter monster through toy rotation instead of purging in this case. A few toys will remain in the room at all times like the play kitchen because let’s face it, no one has room to store a big play kitchen for it to be rotated out. Here’s the toys that are currently in rotation.

• Musical instruments including the new big kid keyboard.
• Wood blocks
• Balls
• The Fisher Price Little People with the doll house and princess castle
• The Hungry Dino (because I don’t remember the actual name haha)
• A handful of smaller board books and the 2 electronic books.
• The bead slider whirly toy.
• The brailled alphabet apple.

That still seems like a lot of toys but truthfully it is a whole lot more manageable than what we had in there before. Here’s the list of what is put up and out of rotation.

• -Lego Duplo’s because well choking hazard.
• -Chunky and knob puzzles simply because they don’t get played with right now.
• -Baby doll accessories.

Ok so it really does not seem like a lot taken out. The biggest help with the chaos is the Duplo’s. I love Legos and so do my kids but they sure are a huge clutter inducer. Little Miss will dump the whole box just to hear them dump or Boy Child will dump them to find the exact piece he wants. Then, neither of them will want to pick them up. So removing the Legos alone helped tremendously.

Our amazing finished play room

Then I moved on to Little Miss’s room while she was eating lunch the next day. Here room was a disaster. She had everything on the floor and way more toys than she could play with at one time. So while I had a few minutes where the kids were completely occupied with stuffing their faces, I dove right in. These are the few toys that didn’t make the cut.

• Her bigger baby doll.
• The Little People roaring lion that has no off switch.
• The basic shape sorter that somehow had the top disappear.
• Numerous single pages from multiple former board books.
• A weebly wobbly beady popper toy.

I didn’t do a whole lot of actual sorting in her room. I basically sorted it by what was staying in the room and what wasn’t. The rest of what came out of the room for out of rotation toys is as follows.

• 3/4 the first builder Legos.
• The small baby doll accessories that were choking hazard.
• The Little People farm animals.
• The play garden mini jungle gym to eventually take out side when it gets warmer.

A peak into the previous chaos.

Again, this doesn’t seem like much but for her little tiny room, it was a lot of stuff in there. She still has plenty of toys to play with back there if she wants. Here’s the list of the keepers.

• The new toy washing machine.
• Her smaller baby dolls with all her doll clothes that she can practice her favorite past time, folding laundry, without spreading and mixing our clean and dirty laundry all over the house.
• A small box of the First Builder Legos.
• Little People zoo animal with the safari train and one zoo keeper to drive the train.
• Jumbo stacking cups.
• The bigger cars.
• A small box of random smaller toddler toys including a teething ring and the small stacking cups.
• Her toy camera, chair, and push train.
• A few stuffed animals.

She also has a bean bag chair that we store extra out of rotation stuffed animals. Boy Child has one too but we will get back to that later. Her room is so much more manageable now that there aren’t as many toys. She is really starting to actually figure out how to put Legos together but she really doesn’t need 200 of the things. Plus, with her propensity to put things in her mouth, even the bigger Legos has some possible choking hazards in the smaller pieces. So those just got weeded out temporarily and might get added back as she discovers more and more of what she is capable of building with them.

The shelf in Little Miss's bedroom completely tidy.

Before Boy Child went to bed that same night, I started in on his room. He had an even bigger mess and I pulled a laundry basket full of toys and stuff out of his room. Although not a lot ended up in the yard sale box. He already has several toy set put up in the top of his closet as one out at a time toys because they have the teeny tiny pieces that need to be controlled. The main thing I got rid of in his room was all the scribbled, stickered, and torn coloring pages and trash and tags that he had collected. Unfortunately he thinks he should keep every single tag with a picture that he likes on it. He even had a couple scratch off tickets that were used and not worth anything in his stash. I snuck all the trash out of it and neatly stacked his coloring books and note books in the box with his crayon box and magnifying glass.

Basically the toys we pulled out were mainly for rotation. I guess I really have stayed right on top of the kids’ toys and keeping them to the minimum of what they play with. He did decide to get rid of a couple of books he said were scary but that’s about it. Well here’s the list of out of rotation toys.

• Baby dolls and accessories.
• My Life boy doll and accessories.
•  Wooden train tracks and trains.
• Matchbox cars.
• Wooden play castle.
• About half his book collection.
• Stick horse.

He helped me choose what went up and what got left out. He was put in control of the choices. Here’s what he chose to keep out.

• Dinosaurs.
• Dress up clothes.
• His favorite books right now.
• His Little People pirate ship and airplane.
• The art easel, coloring books, and crayons.
• His guitar and ukulele.
• And the ten stuffed animal friends we had agreed upon previously.
• The Cat Car RC.
• Toy vacuum.

He does also have a reading chair and the bean bag filled with his other stuffed friends in his room but those will always stay. The bean bag is actually one designed to hold stuffed animal and is easy for him to open to swap them out. We have established some rules recently about only having ten out at a time to keep the mass amount of stuffed animals at bay. It really made the room appear way neater with them all put away out of sight. Then there are the 2 giant stuffed animals and his electronic green scout dog that he has loves since he was an infant. Little Miss has one of her own that is purple.

Incredibly they were so much more calm after the room was cleared.

It’s amazing how much of a difference that made to the feeling in the house. Since I finished, it has been so much calmer and under control than before. Even the kids’ behavior has improved and they have been more willing to play independently than before. It was definitely worth dealing with before anything else. Now I’m more motivated to attack the rest of the house.

10 Self Care Tips

As a single mom taking care of both special needs kids and my disabled mom, it is extremely important to remember to take the time to take care of myself. I’ve always said, “You can’t take care of others if you don’t take care of yourself.” It really took me a long time to figure this out.

https://goo.gl/DM87FC

Thankfully I got it figured out before I had kids but I lost friends when I wouldn’t meet my own needs. I put so much time and energy helping my friends and making sure they were taken care of that I didn’t leave enough time for myself. I did not realize that I kept using up my fuel tank for others, but never once used some of that energy, to refill my tank. A car can only go so far if you don’t stop for gas. I would always end up snapping and not able to function.

But all that has changed. I eventually realized the importance of refueling and slowly found ways to add to that tank. Over the years, I have amassed a list of various ways to take care of myself and now I want to share it with you.

1.  Journaling

One thing that always brings me closer to empty, is when my mind is so full of stuff that I can’t focus or sleep. One thought is followed by another and another. It’s an endless train of ideas, thoughts, worries, and replays. The best way for me to clear my head when I’m dealing with this, is journaling. Writing out what ever thoughts are flying through my mind always allows my mind to rest afterwards. Writing also prevents you from forgetting any new, amazing ideas you come up with. I don’t know about you but I am super forgetful most of the time. If I don’t write it down then I don’t remember it. A simple notebook or even just some clean paper and a pencil is all you really need. Or if you prefer to use technology you can type it up as well. I’ve used both. I honestly think I prefer actually writing it out. There is just something about focusing on my hand looping all the letters that really help center and calm my mind. I also am able to add sketches to my journal.

2.  Exercise

Keeping your body is good physical condition is very important in maintaining your health and well-being. Even a short walk a few times a week helps keep your sanity. Exercising releases endorphins, which are the feel good hormones that your body makes. These endorphins will help energize and lift your mood. I will load my kids into our double stroller and hit the block or the mall depending on the weather. I discovered that if we walk the outside perimeter of my local mall, not going into any stores, it is about a one mile loop. I measured it once with an app that tracks my walks. I have yet to figure out a good path in my new neighborhood but I used to have a route I walked in my old one that was about 3 miles. This semester I plan to visit the campus gym a few times as well. I will hopefully have a few days a week with some free time while the kids are at daycare and school and I’m hoping to use that for a little self-care.

3.  Hot bath or shower

When stress starts adding up, a hot bath or shower can relieve that stress. Whether you like sinking down into a hot bubble bath or letting the steamy water pound on your back, it can be amazingly relaxing. When I get the time to actually enjoy a shower or even soak in the tub, I never regret it. I usually just stand in the shower and let the hot water pound on the sore muscles in my back. Even if I don’t have the time to soak or enjoy, I take a moment to let the hot water pour on my back to relax. Even just a couple minutes is better than nothing.

4.  Pamper yourself occasionally

One way to really take care of yourself is to pamper yourself. Getting your nails done… Having a makeover… Getting a massage… All are different ways to pamper yourself. Everyone enjoys a little pampering. This is an obvious method of self-care. It is spending time on yourself. I don’t get to do this often but I never regret it.

5.  Listen to music

https://goo.gl/6CvQDy

Everyone’s taste in music is different but most people enjoy listening to some kind of music. Music feeds the soul and refills your inner tank. We turn music on to give me energy when I need to complete some housework. Added bonus is when we just decide to have a random dance party in our living room. If I’m feeling sad, I turn on some old school Linkin Park or Evanescence and jam out my sorrow. There is just so many different types of music. You can find one to fit every mood and situation.

6.  Eat a balance diet

Everyone knows that you have to eat a healthy balanced diet in order to stay healthy. You have to stay healthy in order to take care of others. If you are not healthy, then you will not be up to doing much for anyone else. A healthy diet needs to consist of mostly a variety of vegetables and fruits with healthy whole grains and small portions of meat. Portion control is also key. Over eating can cause a lot of not fun discomfort.

7.  Stay hydrated

Water is key to life. Staying hydrated allows your body to function at its best. I am not particularly fond of plain water most of the time, though. I usually try flavoring some the night before by slicing fruits and veggies and soaking them overnight to infuse the water. My favorite combination is lemon cucumber. You can really use any fruit or veggies you want. You can even use frozen fruit. I also prefer filtered water, so I try to keep a pitcher to filter my water available.

8.  Read a good book

I, personally, love reading. It’s an escape from this reality into a fantasy one. You can travel the universe, jump through time, or visit places only found in dreams. Reading can help take your mind off of any troubles or stressors. It can also just be enjoyable to help you refill your tank. You don’t have to purchase every book you read. See if you have a good local library system. Ours here is amazing. We have six different branches in town each with hundreds and hundreds of books to choose from. We also have the ability to do an interlibrary loan to get books from other library systems that ours does not carry. There are also ebooks that you can read. You don’t have to spend any money. Amazon regularly has ebooks you can “purchase” for free. Many times it is a first in a series to try to hook you and encourage you to purchase the rest but you don’t have to. They do also have single books in there and they change every day.

9.  Get plenty of sleep at night

https://www.nia.nih.gov/health/good-nights-sleep

Sleep is when your body regenerates from all the wear and tear of the day. Your body and mind can’t function without rest. Sleeping at night is important too. Your body creates a hormone, melatonin, at night to naturally help you sleep. Sunset and the low light level triggers melatonin production. You also don’t want to be watching any screen late at night. The blue light from the screen tricks your brain into thinking it is still daytime and doesn’t produce the melatonin needed to put you to sleep.

10.  Treat yourself to something decadent

Lastly, treating yourself to something that you really enjoy like your favorite dessert or treat. Even healthy diets need a splurge occasionally. Just whatever is your favorite. Currently I am really enjoying ice cream sandwiches and Swiss Cake Rolls. Don’t go overboard or you end up with the same issues if you don’t eat a healthy diet. 

What is the World is WAGR Syndrome?

W.  A.  G.  R.

WAGR syndrome is an extremely rare genetic disorder caused by a sporadic deletion on the eleventh chromosome. The name is an acronym standing for Wilm’s tumor, Aniridia, Genito-urinary anomalies, and Range of developmental delays.

Wilm’s tumor is a form of childhood kidney cancer. Typically, it is a pretty aggressive form and masses can grow rapidly. WAGR kids have about a 50 percent chance of developing a tumor. Of course, that means not all kids with WAGR get wilm’s tumors. They all do go through regular kidney scans to watch for the formation of a tumor.

You can see her eyes look solid black but really they have no color a all.

Aniridia is a rare eye condition where a person is born with no iris or color part of the eye. In 75 percent of cases, it is a hereditary disorder and usually has very few other issues beyond light sensitivity and visual impairment. The other 25 percent, have the deletion and WAGR syndrome. Tehre are many other eye conditions that can accompany aniridia, including cataracts, glaucoma, nystagmus (eyes bouncing), or optic nerve hypoplasia (under developed optic nerve).

Genito-urinary anomalies is basically a fancy name for abnormalities in the groin area. This would include kidneys, bladder, reproduction organs, or infertility. For boys, a common abnormality is hypospadias or undescended testes. Girls deal with streak ovaries commonly.

The “R” used to stand for retardation but it has been changed to Range of developmental delays to be less offensive. I personally prefer the range of developmental delays better because it better portrays the fact that no one case is exactly the same and that it is a range and not a set issue. It also encompasses more with the developmental delays which could be speech or gross motor and not affect the child’s ability to learn.

WAGR can also include so many other little concerns and health issues. We have heard a lot of kids struggle with sleep, respiratory system issues, and behavioral problems. Many kids have an additional deletion that includes another gene that causes a predisposition to obesity. For more information on WAGR syndrome, www.wagr.org is the website to visit.

www.wagr.org 

Unfortunately, since the disorder is so rare, there are no WAGR specialists and most doctors have never heard of the disorder. The parents end up having to become the experts on the disorder. It’s not easy and I learn new stuff about what to expect every day. 

What does minimalism mean to me?

Minimalism has been on of the hottest topics around the internet lately. Everywhere you look, someone is talking about discovering minimalism or decluttering their house. I will admit that I didn’t know much about it myself until it a couple years ago.

I had gotten to a point where I was so overwhelmed with the amount of stuff in my house and finally was ready to do something about it. I immediately turned to my favorite site for finding information and help with almost anything, Pinterest. I eventually found the book, “The Life-Changing Magic of Tidying Up” by Marie Kondo and the Konmarie method of purging and letting go of your belongings. I had spent about a year prior to reading her book, decluttering using various other methods but it never seemed enough. I was still very much attached to my belongings.

Something in me just clicked once I stumbled on Kondo’s book. I started following her method. I will admit, it didn’t fully work for me but I loved the concept of everything having a home and returning it to its home every time you finish using it. I also liked the concept of keeping only what brought you joy. My mom joked with me that the vacuum doesn’t bring joy so time to pitch it. The process made me look deeper into what I thought to be joyful. The vacuum stayed since having a clean house and not stepping on bits of dirt, food, or cat litter brought me joy and the vacuum was the tool needed to achieve that joy filled house.

My attempt at the paper category of the Konmarie Method.

But I didn’t fully finish her method and as time went on, it seemed to work for me less and less. The categories I had completed kept re-cluttering themselves. Especially the kids clothes. I mean kids outgrow clothes so fast that you have to constantly rotate. Add in my daughter’s health effecting her growth pattern, her clothing size changes were not predictable like my son’s. But Marie Kondo helped me focus on what I truly wanted, a house filled with only items that are useful and joy inducing and nothing more. I wanted the simplistic life that was portrayed in Marie’s book and I still do.

Since the konmarie method was abandoned, I have still worked toward only having what I have found useful in the house. I was getting very close to the minimum number of belongings I needed to live the life I wanted to. Unfortunately, I then had to combine households with my mom to help her out. Two households shoved into one means double of EVERYTHING. So now we must work to purge the unused, unneeded duplicates while trying to figure out what exactly is needed for our new household configuration. This is where this blog comes to play. I will be sharing my journey towards my ideal minimalistic home.

But what is my ideal minimalistic home? To me minimalism isn’t the stereotypical minimalist home with all white stark house with very few modern furniture pieces and no personality. To me minimalism is having only what you need to live the life you want. If you want to travel the country, then living in an RV full time with very few belonging would be ideal. If you want to homeschool and work from home selling several different products, you might need a separate office and school room fully stocked with inventory, supplies, and equipment. For me this is only enough dishes for those in my household out for everyday use and a stash of additional dishes for when we entertain. It means only the books I actually reference regularly and use the public library and internet for pleasure reading. It means not having so many items in any category that it takes hours and hours cleaning. But most importantly, it means I’m not being weighed down by the chaos of my material belongings so that I can spend valuable time with my family creating happy, calm memories.

Sandwich What?

*** This is a little bit of a shorter post tonight. We had a busy day today at church and with the kids. Sorry in advance.

My mom has Parkinson’s disease. I have small children I have to take care of. I also happen to be the only family my mom has in town. So, that leaves me to be the one to pick up the responsibility of her care as her disease progresses.

It is expected that you have to care for your children. It is many time even expected that you will one day be responsible for your parent’s care. Not many people end up taking care of both their parents and their own children at the same time. Those who do are lumped under the umbrella name of “Sandwich Generation”. Basically we are sandwiched between care for our parents and care for our children.

Typically, people in the sandwich generation are in their late 30’s or 40’s and are caring for teen agers and getting kids through college. My situation is unique in that my kids are still under the age of five. My mom is also quite a bit younger than the typical elderly parent needing care. She is disabled. My daughter is also disabled and my son has unique needs that require unique care as well. It is definitely not your average sandwich. I will have many years full of doctors, therapists, and medications ahead of me.

This isn’t something that I am bitter about or anything. It is just the reality of my life. While I hate watching my mom get to the point of needing help, I am glad I am able to help her out as much as I am able to. We may not get along all the time, what mother daughter pair do, but we are there for each other when we can be and I will always be there for my mom.

I am still learning what all it means to be in the Sandwich Generation but I would like to share my journey down this road every Sunday. Follow along as I come to and tackle every obstacle that gets thrown in my path. 

Why the Crunch?

Crunchy. Green. Natural. Sustainable.

All ways to describe my dream lifestyle. But what do they actually mean?

According to Dictionary.com*, sustainable living is “any lifestyle based on energy-saving and environmental responsibility” but that doesn’t fit my vision exactly. For me, sustainable living does include energy-saving and environmental responsibility but also being reliant on my own “village” and community for your wants and needs. But it also includes living frugally. To be sustainable, you have to be able to afford your lifestyle too. It’s not necessarily natural or green (except for the money saved) but it would be sustaining the way you live.

*Photo from www.lexingtonky.gov/recycling

Most people have heard the term green living and connect it to natural. Crunchy is one of the newer terms out there though. Crunchy is a spin-off from the reference to those following a more natural minded lifestyle and the granola that was a very common snack. Granola is crunchy so it morphed into the crunchy lifestyle.

So what does that mean for me and this blog?

My vision of my future would include living a lot crunchier than I currently do. I try now and have dabbled in many different ways of saving the earth and saving some money but my situation previously didn’t allow me to really continue any of it. Now that I have kids and also take care of my mom, it is even more important to me to live a sustainable lifestyle.

Healthy, affordable food is a must in this house and with only one person in the house able to work, money tends to limit our access to healthy food. Growing and preserving my own food, especially now that I am no longer living in an apartment, is going to be the easiest way to offset our food costs. Plus, it keeps us from relying on other people for our own food.

Budgeting and living frugally is another stepping stone towards sustainable living. This goes back to the lifestyle sustainability that I want to achieve. In order to feel the safety of knowing I am able to get all the bills paid and provide for my family is a major desire and a major aspect of my dream of sustainability.

I also want to preserve the earth and the environment so that my children and my children’s children are able to enjoy this gorgeous planet we call home. Again, it’s about sustaining the Earth. So recycling, striving for a waste-free household, and conserving resources are all going to be seen.

*Photo from https://www.nasa.gov/topics/earth/index.html

It all interconnects. Each one a single aspect of my vision, my dream. As I push myself toward my dream, I’m taking you along with me.

Each Saturday, I’ll share a new tip or trick that I’ve tried along my journey to sustainable living. It could be budgeting or growing your own food, green cleaners or composting. You might even see posts about saving money or increasing your income. There are just so many different branches off the tree of sustainable living for me.

Whether you are completely new to the crunchy lifestyle or an old pro, there will be something for everyone.

* http://www.dictionary.com/browse/sustainable-living