Sunday, May 13, 2012

MPS-Sanfilippo Syndrome: Suzanne's Caregiver Story

     Suzanne lives here in Louisville, MS, where I do.  She was Corey's homeroom teacher in the 3rd grade for part of the year.  The rest of the year, she was on maternity leave after giving birth to a baby boy.  That's about all I knew about Suzanne until the past couple of years. That's when her life changed forever, and our community came to learn about MPS-Sanfilippo Syndrome.
     Quinn was that baby boy born 5 years ago.  Just 2 years ago, he was diagnosed with MPS, or Mucopolysaccharidosis. It is a very rare genetic disorder that I had never heard of.  Since then, Suzanne has been a warrior of an advocate for Quinn and all of the other children and families suffering with this disease. Through Facebook, I've been able to learn about Quinn's life, both the triumphs and struggles. MPS is such a different diagnosis, a life-threatening one, than what my daughter lives with.  And although I've extended an empathetic ear to Suzanne many times, I just couldn't relate to what her existence was like. That is, until now.  I'm so grateful to her for sharing her story with me. I know it will inspire and encourage others, just as it has me.
     I thought it would be best to begin this interview with a description of MPS Suzanne shared with me. It surely explains it all...

Understanding What MPS III-A
Does to a Child and the Family
by Lucas Hembree on Wednesday,
February 8, 2012 at 11:47pm

Let me introduce myself. My name is Mucopolysaccharidosis (MPS III-A). I’m also called Sanfilippo (pronounced San-fa-lee-po) Syndrome named after Dr. Sylvester Sanfilippo, who discovered me in 1963. I am an awful genetic disorder. I affect 1 in 70,000 little children. I cause the body not to produce a specific enzyme that helps to break down dead tissue in side the little one’s body. Since the waste can’t be broken down I cause the body to store the waste in places it’s not suppose to be. Like the brain, central nervous system, bones, joints, and vital organs. So now that this young child is at my mercy let me tell you what I’m going to put him and his family through for the next 10-15 years. That’s right, 10-15 years is about all I’m going to let this child live for.
 Then to make it worse they is no cure or treatment to get rid of me.

Let’s start out easy. Within the first 2 years of this child’s life I’m going to cause him to have several developmental delays. This includes learning to walk, feeding himself, and talking. After he does learn to walk he will be very unsteady on his feet. This is because I’m already starting to affect his joints. He will have several ear infections and will soon lose some of his hearing. Thanks to me he’ll never be able to enjoy hearing things like birds singing and crickets chirping. I’ll set back and laugh while the parents scurry around to all the different specialist trying to find out what is wrong. The parents schedule will soon fill up with appointments to specialist and physical therapy visits. I’ll let them enjoy their time of semi-normalcy for another 2-3 more years before I really start getting nasty.

Now by this time the parents usually know what is going on. They see him constantly chewing on things and having behavioral problems. That’s from where I’m storing the waste in his brain and I’m slowly making him mentally retarded. He will start to become more aggressive, hyper, and harder to control. He will have sleepless nights. His behavior will be similar to an Autistic child. It will be harder for him to walk without constantly falling down. He will become more resilient to pain and have thicker skin so you’ll have no idea of how bad he’s hurt when he falls because he won’t cry as a normal child would. I will start to change his outward appearance. I will cause his hair to become more course and his eyebrows thicker. I will widen his jaw and gap his teeth apart. All the complements on how cute and handsome he is will soon start to change to stares, gawks, or people looking away because they won’t know how to take his appearance.

Now to slow things down a little. Because of all the waste I’ve stored in the joints I’ll take his ability to walk from him. I’ll see that he’s confined to a wheelchair. I’ll cause him go into a vegetative state at this point. He’ll not be able to be potty trained or able to feed himself. Most of the children I affect will have to get a feeding tube put in. I’ll no longer let him communicate with anyone. You’ll look into his once vibrant beautiful blue eyes only to see a loving child trapped in his own body. I’m now going to really make it hard on the family. I’m also going to cause this child to have frequent and violent seizures. This will come along with the added complications to his heart and immune system.

Because I’m a rare genetic disorder the insurances company’s will be reluctant on covering his medical needs and equipment. As things become worse one of the parents will have to stop working in order to care for me full time. I will mental, physical, and financially drain this family. After all of this torment and anguish I will take the life of this child as I have so many in the past.

This is my interview with Suzanne:

Tell me about your son, and describe his disability.
Quinn is a 5 year old little boy that can light up the room with his smile. He can also destroy the room very quickly. Quinn was born in December 2006 very healthy and a happy baby. My second child, so I was calmer too. He was so very quiet, never cried, or made many sounds.  Ear infections started at 3 months of age, and finally at 9 months he got his first set of tubes.  The tubes didn't help, he continued to stay sick with green snot, fever, and yes, ear infections. Three ENT's later and our 3rd set of tubes, we learned that Quinn had moderate hearing loss in both hears. There is not a day that goes by, that I don't wish I had handled hearing loss better. Maybe I would not be typing this now.  Hearing loss and hearing aids were the end of the world to me at that time.  However, I finally accepted it, and I just wanted to hear Quinn say the word Momma!!  So we drove Quinn an hour and half to school at Magnolia Speech School in hopes of him learning to talk.  During this time I wanted to know why Quinn was losing his hearing.  He had passed his hearing test at birth. Tests after tests brought no results. Finally, in July 2009, we went to see a genetic doctor.  He walked in the room, took one look at Quinn, then said that he had something genetically wrong. Really, just by looking!!  At this time, Quinn had 12 tubes of blood drawn, urine sample, and EEG. We drove home to wait for the results. On August 12, I received a phone call saying they found something, and it would be 2 or 3 weeks before we could come back to hear the results. We could not except waiting that long. Brad called and found out that our precious baby boy had MPS.  The nurse told him not to look it up because there is no cure or treatment for some of the types, and we don't know which one Quinn has. Well forget that, we were on the computer all weekend. From the beginning, I prayed, please don't let it be type 3.  However, the more I studied, I knew that was the type Quinn had. Sadly he was one in 114,000 live births with this disorder. He has Sanfilippo Syndrome, Type A. This type of Sanfilippo affects the brain with no treatment and the shortest survival rate. Quinn is missing an enzyme that breaks down the waste in our body. Since he is missing this enzyme, the wastes build up in his central nervous system, bones, joints, and vital organs. Quinn's started in his ears with the hearing loss and is quickly moving throughout his little body.

What are his limitations?
Quinn requires full care 24/7.  He can't dress himself, feed himself, or follow simple directions. He watches a lot of television, because this makes him happy. He use to play with toys, now he just beats them. Every once in a while, he will push a truck the correct way. He is 5, but is mentally on an 11 month level. Sadly, this test was a year ago, so I am sure he may be more like 7 or 9 month level now. He will get to a vegetative state. Most of the time this happens by the age of 11, but since it affects the nervous system each child is affected differently.

On a daily basis, what is the most challenging part of caring for him?
He can't tell me what he wants. He gets frustrated, and so do I. He would love to just run and run and run. Thankfully and sadly, he falls a lot, therefore,  I am able to catch him.

What are the most difficult things you deal with in regards to his disability?
He is going to die. I pray daily he just doesn't suffer too much. No, really to answer the question, it's watching him slip away. Some days it's like he knows what he wants to say.  His little lips move and nothing comes out. Some days he is here more than other days. That is hard knowing all the things he was able to do at one time. 

Are there more good days, or more bad days?
Quinn doesn't sleep much. At night, it seems as if his brain can't settle down. However, any day he wakes up is a good day. So many children die in their sleep. Some days he is happy, and other days he cries alot.  Sadly, I never have any idea what the problem is.

Do you have a good support system?
Yes, I have a wonderful support system. My husband allowed me to stop teaching in order to care for Quinn.  Also, mentally, I couldn't handle teaching with all the stress of my son dying. My parents and in-laws help out. Quinn does better at home, therefore, we are sadly learning to leave him there more.

Has your situation affected other relationships in your life?
In some ways I would say yes.  Some people just don't know what to say. I will say that you find out who your true friends are for sure.

What do you do for enjoyment?
I am still working on that. Maybe Facebook because I can connect with other parents of children with this disease. I don't know of any children in Mississippi that have Sanfilippo.

What is your favorite attribute about your son?
Quinn has touched so many lives.
He is my little hero!!

What is it about your life as a caregiver that you want others to know?
It's not an easy job, or one I picked for sure. I always say, this is the life that chose me. I also know that my future will be much harder.

How has being a caregiver changed you?
It has made me a stronger person. This is not the life, job, or anything I wanted. I will never be happy with this life journey, but I am learning daily to accept it.

Have you learned anything about yourself?
I am stronger than I ever thought I could be. I have cried more tears than I thought possible. But I am out of bed today, so I am proud. I am learning to enjoy this life. I will never like it, but I am learning to be happy.

What advice can you offer others who are in your situation, whether suffering with MPS or other life-threatening illnesses?
The first year I prayed for this not to be true and for a miracle.  I never prayed for a cure with Quinn because a cure means death. The second year I have prayed just to let the tears and sadness go away, so that I will be able to enjoy Quinn. Also, to learn how to stop wishing for what will never be. Oh how hard that is!!!  Quinn's disease is rare.  People do not understand it. That will always be hard. Quinn looks healthy, but his brain is not because of all the buildup of waste the body can't break down.  We don't have hospital stays; there is no treatment, or anything that can be done. Doctors have no idea what to do.  Some days I would love a time line of how long we have, but this disease affects each child so differently we have no idea.  Quinn never developed cognitively or physically as much as other children have, so does that mean a wheelchair sooner or later?  I wish I could tell you.  All I know for certain is, Quinn is my blessing. I hope and pray one day there will be a treatment for kids like Quinn.  A cure would be even better.  But right now I am just living the best way I know how. There are no rule books with MPS.  I do know that it's a long hard road, but God picked my family to walk it.  We are traveling this journey the best we know how.

Friday, May 11, 2012

Making Felted Wool Dryer Balls: Homestead Challenge #3

     Since I mastered the process of making my own laundry detergent, I decided to find a way to replace the dryer sheets. It didn't take long to learn that homesteaders like to use felted wool dryer balls. You can buy them already made from several sellers on Etsy. I discovered they were very easy to make myself, so I followed the tutorial from The Good
     How do they work, you ask?  The wool balls absorb moisture from the clothes in the dryer. This helps maintain a humidity level during the cycle that keeps static from developing. The tossing action separates the clothes, making them dry quicker and saving on energy costs. Plus it helps make the clothes wrinkle free. Sounds great to me!

     The first thing I did was find some wool.  YOU MUST USE 100% WOOL! The typical acrylic stuff you find will not work.  If you have an old wool sweater or scarf, you could recycle that. I didn't, and couldn't find any wool locally. So I ordered this Martha Stewart roving wool online. The 3 skeins I received were not as big as I was expecting them to be, but were enough to make 6 large dryer balls.
     You must decide what size you are going to make them. Different tutorials suggest different sizes. I decided on a larger size; that was just my personal preference. So I began by winding the wool into balls to form the core. There is no magic method to this, just begin winding! You are forming the core of the ball here, not the finished size. I wound mine until they were 6 inches around; in hindsight, I would have made them a little smaller, about 4 inches around.

     Once the core is wound, the balls are ready for the first of two felting processes.  The instructions say to place the balls into a length of pantyhose, and tie them off with string.  I found a knee-high hose to use, and used some acrylic yarn scraps for the ties. You DO NOT want to use the wool yarn for the ties. Once all of the balls are tied up, I threw the whole thing in the washing machine with a load of laundry. I chose a load of white clothes so I could use hot water.  The hotter the water, the quicker the felting process takes place. Once the cycle was finished, I put them in the dryer with the same load of laundry, and dried them on high heat. After they were dry, I cut the ties and removed the balls from the hose. They are then ready to be wound to their finished size and felted again. The finished size of my dryer balls was about 8 inches around.

Dryer balls after first winding (the core).

The cores after the first felting.

Finished size after second felting.

     The felted wool balls are now ready for use in your dryer. They will continue to felt and become harder each time you use them. If you would like to scent them, apply 3-5 drops of an essential oil to them. Reapply essential oil when the scent fades away. Lemongrass oil is a natural deodorizer, and would be a good one to use. Properly made dryer balls should last about 5 years.
     Cost analysis time! I spent less than $20 on the wool (plus shipping) to make these. And they last for 5 years. Compare that to what you spend over 5-years time on dryer sheets! Plus, these are all-natural with no chemical products added to your clothes or skin. Yep, I'm pretty excited about this project.

Wednesday, May 9, 2012

The Kitty Who Wasn't (Almost)

     A friend of mine posted a picture on Facebook yesterday of a kitten she was going to pick up for her family. It was a cute little Himalayan kitten, which I have always wanted. So when she asked if I wanted one, I went out on a limb (and without the hubby's permission) and said yes. And within 4 hours, we had a new addition to our family.
     She was a tiny kitten, probably only 5 weeks old, and seemed to like a place where she could hide and curl up. So we put a towel inside of a small box for her in the master bathroom, something she could crawl in and out of, and would be out of harm's way. I soaked some cat food in a little water until it was mashable, and she ate it up. I left a nightlight on and closed the door to the bathroom, and she was quite content there all night long.
     This morning, I opened the door so she could explore some while we got the kids ready for school. Kirby went in and sat in the floor watching her, even placing the food dish within her reach. As I continued with our morning routine, I heard the toilet flush in the bathroom. I hollered to Kirby, "What are you doing in there?" Todd, who was in the kitchen with me, joked, "Nothing Mom, I'm just flushing the kitty down the toilet." But as he went to investigate, it quickly became more than a joke.

     From the kitchen, I heard Todd asking Kirby, "Did you flush the kitty down the toilet?"
     Kirby repied, "Yes!"

     I rushed into the bathroom. Todd asked again, "Did you flush the kitty down the toilet?"
"Yes," Kirby said again. I searched the bathroom for anywhere the kitty could have been hiding.  No kitty--anywhere. Todd put his ear up to the side of the toilet, listening for any sounds.  Nothing.  We stood and looked at each other in disbelief, mouths gaping open. My heart was racing, my legs turned rubbery, a warm, sick feeling came over me. I couldn't believe this! We asked Kirby several more times if he had put the kitty in the toilet and flushed him down. Each time, his answer was "Yes". 
     The next 20 minutes or so are a blur to me. We load the kids up for school. Kirby is talking, but I'm not hearing anything he's saying. All I can think about is the poor kitten being flushed down the toilet. How horrible! Todd, Corey, and I are just sitting in the van stunned at what had just happened. Nobody is saying a word.  Having just gotten the kitten last night, we hadn't become attached enough to shed tears over her. But I had the most sickening feeling in my whole body.  I couldn't escape the image of this poor kitten being flushed down the toilet. I felt very near a full-blown panic attack.
     After all the kids had been dropped off, we return to the house. We both walk in, and go straight to the bathroom. Why, I don't know. Returning to the crime scene? Maybe. We quietly stand over the toilet. I hear a faint "meow". I ask Todd, "Did you hear that? I heard a meow!" Then we both hear another one, very faintly. "Oh my gosh! I hear it!" I said. Todd reaches back to turn off the water to the toilet.  He guesses it's probably stuck in the S-shaped part in the base. He runs off to get some tools to take the toilet apart, while I began quickly moving things out of the way. Then, we hear another meow, but it's a little louder this time. Todd follows the sound to the rocking chair, just outside of the bathroom door. He looks behind the chair. "Mama", he said, as he pulls the kitten up from her hiding place.

     She was dry as a bone, and perfectly fine.
     What more can I say?
     I guess Kirby has a wild (sick) imagination.

Sunday, April 22, 2012

Let There Be...Shade: Homestead Challenge #2

I must confess--we did this project a few weeks ago. But it definitely qualifies for the Homestead Challenge.

Our house is surrounded by old trees that bring some pretty awesome shade. That is, except for the west side of the house. It takes in a lot of heat in the afternoons, especially in the summer. That side of the house is where the master bedroom, bathroom, and my workroom are. It was added on many years ago, and was cooled by an ancient, unreliable air conditioner that we replaced with a window unit. Even at that, it takes a lot to keep this west-facing side cool.

So we've planted a few trees to help us out. We chose 5 red maples that were under $30 each.  They were great looking, tall and leafy. We bought them from a co-op about 25 miles from home one afternoon when we were on the way to watch our son play baseball. Turns out that wasn't such a great plan on our part. What we didn't consider was the ballgame was about 30 miles past that co-op, on the highway, with that same distance to travel back home. It goes without saying that trees don't like to travel at 70 miles an hour in the back of a truck. We watched anxiously as the poor things were wind-whipped they whole entire trip. The leaves that were down in the truck bed were fine. But the ones up higher and hanging off the back were badly dried up and/or withered. This picture is a bit blurry, but it shows how the leaves looked once we got home.

Fortunately, all of the trees survived, and we spaced them out on the west side of the house. They are thriving, putting out new growth everywhere. Boy, are we lucky! We hope in the years to come, they will provide great shade and keep us cooler in the summer. And as a bonus, I'll get to see some fantastic red leaves in the fall (love me some fall foliage!).  It seems like a good investment, considering what they should save us in electricity eventually.

Saturday, April 21, 2012

Save the Bananas!: Homestead Challenge #1

Ok, so it's the first day of my Homestead Challenge. I'm looking around, trying to decide where to start. After all, there are so many things I want to try. But wait--hang on a minute--what is this sitting on the counter?

Now, I know you've seen this before...
You probably have some rotting bananas sitting on your counter right now, don't you? 

Here's a homesteading "a-ha" moment. Normally, these would go straight to the trash. But this time, I'm not going to waste them. And who doesn't love Banana Bread? (Well, some people don't, I'm sure. But I do!)

Homemade Banana Bread
3/4 cup sugar
1 1/2 cup mashed bananas (3 or 4)
3/4 cup vegetable oil
2 eggs
2 cups all-purpose flour
1/2 cup chopped nuts (if you like)
2 tsp vanilla
1/2 tsp salt
1 tsp baking soda

  1. Preheat the oven to 325. Grease loaf pan with shortening.
  2. Mix sugar, bananas, oil, and eggs in a large bowl. Stir in remaining ingredients. Pour into pan.
  3. Bake until toothpick inserted in center of the bread comes out clean, about 60-70 minutes.
  4. Let cook 10 minutes, then loosen sides from pan and remove loaf. Let cool completely before slicing.

It was fast and easy to make, and so yummy too.  And it felt good to rescue those poor-looking bananas from their certain demise! Challenge #1 is a success!

Friday, April 20, 2012

Take the Homestead Challenge

I've been giving a lot of thought and consideration to homesteading recently (in case you didn't notice--I'm quite obsessed!). In my reading, I've come to learn that there is a great movement out there to natural living.  People are returning to their roots in many different ways. The definition of homesteading is as broad as the population. It can be anything from using cloth napkins over paper, to living off-grid and having a well.

The primary reason I began looking into natural living was to find ways to save money. Let's face it, prices are going up on everything, with no end in site. I get a sinking feeling when I go to Walmart and drop $100 on just a few bags worth of items. On top of that, the items I often buy are filled with who-knows-what in terms of additives and preservatives. I want better than that for my family, and I bet you do too! Here are some reasons people are joining the homestead movement:
  • To save money
  • To live closer to the land
  • To embrace homemaking
  • To return to the basics
  • Self-sufficiency
  • Community building
  • Teaching children the value of hard work
  • Preparedness
  • Conservation
  • Environmentalism

But where do we start? As I mentioned, homesteading can be defined in many ways. I've learned that living a more self-sustaining lifestyle includes any/all of the following:
  • Don't waste anything! Use/reuse/recycle everything.
  • Choose reusable items over disposable ones wherever possible
  • Make your own household cleaners
  • Make your own personal care products
  • Explore natural remedies
  • Learn to sew
  • Line-dry your laundry when possible
  • Conserve electricity
  • Be prepared for emergencies
  • Buy in bulk when the price is right
  • Plant a garden
  • Plant fruit and nut trees
  • Preserve your harvest
  • Use captured rainwater for your garden
  • Choose local farmers for your produce, dairy, and/or meat
  • Stock your freezer with meat when you find a good sale
  • Raise chickens for eggs and/or meat
  • Raise cows or goats for milk
And the list goes on...

It's a long list, and might include some things you are already doing. There might be other steps you might be ready to start right away--go for it!  But some of these things might seem totally unattainable to you.  Perhaps you live in an apartment or rental with no prospects for a traditional garden. Think outside the box! Could you grow in containers? I know you've seen those tomato plants that hang upside down-could you try that? If all else fails, support your local farmers by buying from them what you can't grow yourself. If you truly want to incorporate these steps into your life, find ways around what seem like roadblocks.
This list also contains ideas that can't be accomplished overnight. Perhaps you are like me, and you have lots of room for animals and gardens. It doesn't have to be done all at one time. Life is a journey, right? Start small, and don't get overwhelmed. Plan your course of action, and work to move in that direction.

Does this natural lifestyle appeal to you? Are you ready to be as self-sufficient as possible? I am, so why don't we get started...

Take the Homestead Challenge

I am going to try something new every day for the next 14 days that will give me a good start on this new way of living. I may find it's not for me (though I doubt it). I may discover it's what I should have been doing all along. I'm taking tiny steps, making small changes that I hope will eventually lead me to my goal of saving money. I will post my challenges to show you what I'm doing, and evaluate the benefits. My hope is that what I share will educate and inspire us all, and that you might give some of these challenges a try too. Be sure to let me know what you're doing; I want to learn something too! So off we go---happy homesteading!

Thursday, April 19, 2012

Essential Oils & Aromatherapy

My first homesteading projects include making some all-natural household products.  In the research I've done so far, I've found that some of these homemade products actually work better than their store-bought counterparts. And who would have thought that the main ingredients are things that are probably in your home right now? The basic items for many of these recipes include baking soda, cornstarch, and vinegar. All of these are natural and cheap!

One of the other main ingredients in almost all of these homemade items are essential oils. I've never used these aromatic oils before, but they add all-natural scent to everything from household cleaners to toothpaste. I found a good source at, and have ordered several of the most commonly used oils to add to my products.

What I hadn't considered about the essential oils is that they are also used for aromatherapy.  Aromatherapy is the practice of using natural oils to enhance psychological and physical well-being. This is an added benefit! My daughter has a lot of trouble with congestion, so I researched which oils would combat that.  I'm anxious to receive my order, and give these a try.

I thought I would share which essential oils I ordered, and what healing properties they carry. Most of these suggest adding a few drops to your favorite lotion, massage oil, or aromatherapy diffuser.

  • a very potent fresh, minty aroma that produces a cooling and refreshing sensation. 
  • used for inflammation, nausea, indigestion, fevers, flatulence, headaches, migraine, liver problems, arthritis
  • vitalizing, refreshing, clears negative energy, increases alertness, stimulating, and cooling
Tea Tree
  • can be used by the drop directly on the skin which helps cleanse and purify
  • used for immune support as well as relief from colds, flu, skin infections, cold sores, warts, acne, burns, athletes foot, thrush candida, fungal infections, viral infections, bacterial infections, inflammation, shock, hysteria, and glandular fever

  • used to relax, soothe, restore and balance the body and mind
  • may also be beneficial for skin conditions such as burns, rashes and psoriasis; headaches and fevers; insomnia, PMS, stress, scarring, inflammation, and infection
  • cleanses, purifies, and renews the spirit and mind
  • used for acne, asthma, colds, dull skin, flu, varicose veins


  • a familiar component of bug-repelling sprays
  • astringent and cleansing citronella is also useful for oily, blemished skin and large pores. It can be irritating, so be sure to dilute properly.
  • works as an insecticide, deodorant, tonic, stimulant, diuretic, emmenagogue, antiseptic, and reduces fever
  • uplifting, energizing, refreshing
  • used for sore throat, nervous conditions, blood pressure, digestive problems, gallstones, debility, fever, anxiety, as a tonic, astringent, and antiseptic
  • useful as a laxative, for diarrhea, tones the liver, used for asthma, bronchitis, catarrh, throat infections, hypertension, tones the heart, lowers blood sugar, helps arthritis, acne, broken capillaries, varicose veins, clears the head and helps combat depression and combats fever
  • maintains a wholesome, positively charged atmosphere
  • used for depression, anxiety, constipation, nervous conditions, muscular spasm, as a tonic, sedative, antiseptic, diuretic, for palpitations, bronchitis, flu, improves immunity, promotes the production of collagen and increases the circulation of lymphatic fluids.

  • purifies the atmosphere and clears negative energy
  • helps sore throats, coughs, bronchitis, sinusitis, skin infections, ulcers, sores, rheumatism, aches, pains, antiseptic, anti-inflammatory, diuretic, cystitis, nephritis, cleanses the blood, lowers sugar levels, improves circulation, respiratory problems, reduces fever and relieves headaches.

  • is an antibacterial, antifungal, disinfectant, insecticide, and deodorant
  • used for nasal and chest congestion, muscle pain, cramps, spasms, joint pain, gout, circulatory system disorders
  • must be diluted before use.  Also, you must take care that you do not inhale its vapors directly as it can be toxic and fatal in some extreme cases.

And to think I was buying these just for the scent! I'm definitely going to research more of these essential oils to find more that might benefit us. And I'll be sure to share what I learn.

Sources:, ,,,

Wednesday, April 18, 2012

Wordless Wednesday: Hideaway

Can you make her out?
It's our cat, Smokey, hanging out in one of our
huge old oak trees.
She's hiding from our stray cat, I'm sure!

Tuesday, April 17, 2012

Make Your Own Laundry Detergent

I can't believe I hadn't done this before!

Once I hit the blogosphere, it didn't take long to find some great ideas. One of the first ones I found was how to make your own laundry detergent.  When you have a family of five, you do LOTS of laundry.  And that stuff is expensive! So I started asking about it on my Facebook page. Turns out I was the last to know about this money-saving treasure (well, not exactly the last...). But many of my friends were already doing it, and saving big-time! One friend suggested looking up for more information. Her post on making homemade laundry soap gave me all the information I needed to get started.
So I made my first batch a couple of months ago, and just finished it last week. I wanted to use it for a while before I formed an opinion. Now that I have that experience, I will share it with you.

What you need:
1/2 cup Borax Powder
1/2 cup Washing Soda
1/2 bar Fels-Naptha Soap
box grater
large pot
large bucket for mixing
2 empty 1-gallon jugs

I found the Borax, washing soda, and Fels-Naptha soap all on the same shelf on the laundry detergent aisle at my local Walmart. The boxes are each between $3.-$4., and the soap was $1. And considering that you only use 1/2 cup of the powders per batch, you can see that the cost per load is very minimal.  The box grater and large pot are from the kitchen; they wash up just fine after using them.  I bought a 5-gallon bucket for mixing.  It's plenty big; the recipe makes about 2 gallons, so there's plenty of room to stir.  And I recycled 2 gallon-sized milk jugs to hold the finished product.  You could also recycle your laundry detergent bottles for this. Now, just follow these directions:

  • Grate the soap, and put it in the large pot. Add 6 cups of water and heat it until the soap melts, stirring occasionally.
  • Add the Borax and washing soda, and stir until it is dissolved.  Remove from heat.
  • Pour 4 cups of hot water into the large bucket.  Add the soap mixture and stir.
  • Add 1-gallon plus 6 cups of water to the bucket and stir.
  • Let the mixture sit for 24 hours. It will gel during this time.
  • After sitting for 24 hours, give it a good stir to prepare it to be poured.  Place a funnel over the top of a clean, empty gallon jug. Pour slowly; the detergent will be somewhat lumpy.  The recipe makes about 2 gallons.
  • Use 1/2 cup of detergent per load.
I do not have a high-energy washing machine. But from what I've read, this detergent is safe to use in them.  It is very low sudsing.  That was the very first impression I got when I used it for the first time. I added it to my water as it was running, and there were hardly any suds.  However, it's not the suds that make your clothes clean-it's the ingredients in the detergent. Here are a few more impressions and opinions I have on the detergent:
  • It has a different consistency than the store-bought liquid detergents. It's sort of liquid, sort of gel-like--that's ok.
  • Once it has been sitting, it will separate somewhat. This is a picture of my jug that has been sitting untouched for a while. That is also ok.  All I do is give it a good shake to mix it up good each time before I use it.
  • It leaves a very faint clean smell to my clothes after they've been washed. Now, I like a good smelling detergent. I will probably add an essential oil to my next batch to give it more of a scent. Lemongrass oil has deodorizing properties. So I'll just add 1/2 to 1 ounce of that during the mixing process. 
  • It cleans my clothes. That's the most important thing after all, right? My son plays baseball, and had a real dirty uniform after one particular game. It was the perfect test for my new detergent. It was a small load, and I used the 1/2 cup of detergent on a heavy-duty cycle. The uniform looked good as new!
  • The cost savings are incredible! One batch makes 2-gallons for less than $.75. You just can't beat that. For that reason alone, I strongly recommend taking the time to make your own.

Monday, April 16, 2012

Is Homesteading for Me?

I can't express enough how many great blogs I've found. One that peaked my interest early on was The Homestead Experiment.  JulieAnn, her "Hubs", and their 3 young children are from Ohio, and have decided to jump headlong into the homesteading lifestyle. What is homesteading? Homesteading can be loosely defined as a return to a simplistic life. You know-gardening and preserving, poultry and dairy farming-that kind of thing. It was the lifestyle of your older parents or grandparents. I've been following their progress, and the more I read, the more fascinated I become about this natural way of living. And it made me consider my role in the family.

Now, I'm not sure why, but I feel a bit at a crossroads in my life. The headlines today are questioning whether being a stay-at-home mom is actually work. Well, duh...of course it is! But it has made me consider whether there is more I can do at home to benefit my family. The answer to that, for me, is yes. And let's face it, it can't hurt to be as self-reliant as possible these days, right? The times we are living in frighten me sometimes (that could be because I watch too much of the news!).  But really, it would be empowering to know that we don't have to depend on others quite so much for our needs. Finally, our financial situation is changing. We will soon be debt free (the subject of another post to come), and the only areas to save money now are on electricity and food. Considering all of these factors, homesteading seems like a good next move--a better way of life.
Perhaps you share my situation or concerns, but aren't ready to make this kind of commitment.  Not everyone has an abundance of property for all of this. Nor can everyone take the time to milk a goat everyday. But it doesn't have to be all of that for you. I think of homesteading as being as natural and self-sufficient as your situation allows. Do you have the space for a container garden? Can you sew? Could you make your own laundry soap or cleaning products? Do you hunt and preserve your meat? I believe homesteading can be done in some degree in everyone's life.

So I consider--is homesteading for me? (Humor me as I rationalize...)

Do I have the time to devote to this lifestyle?
Well, I don't work outside of the home. At the present time, I have an Etsy shop that brings in more personal satisfaction than money.  And I wouldn't have to give it up, just scale it back some. So why NOT devote my time to making homesteading a way of life? It would be time well spent, and beneficial for me and my family.

Do I have the space for a homestead?
Yes! We live on 3 acres. Our house sits on about 1/4 of that space. We have plenty of room for gardening, fruit tree groves, and a greenhouse. And hopefully, city ordinances will allow us to have chickens and goats.

Do I have any experience to draw from?
We have had a couple of gardens before that did yield some vegetables. And, as luck would have it, my husband is already taking a Master Gardener class! Yipee! His background is in turfgrass management, so he is a wealth of knowledge when it comes to plants and weeds.
I have frozen my vegetables before, but never canned. But I'm totally up for that. As for chickens and goats--eeh, not so much. I do love animals though, so that would be exciting for me.

What would I hope to gain from homesteading?
Oh my, there are so many benefits!

Financially, I would expect to save money on my groceries and necessities. And by making less trips to the store, I would save on gas. Speaking of gas, if our entire property was filled with gardens and barns and chicken coops, we'd spend less trying to keep it mowed.

There are health benefits as well. The physical work required would be much more activity for me than sitting in front of a sewing machine all day. Plus, making my own foods from scratch is healthier than any processed food. The same goes for my soap, shampoo, dryer sheets, laundry detergent, cleaning supplies, deodorant, toothpaste (and the list goes on). All of these things can be made with all-natural ingredients that are often better than their store-bought counterparts.

Self-sufficiency is a huge benefit. I would love to know that, in case of any crisis or emergency, that I was prepared. It would be quite personally satisfying knowing that my hard work was benefitting my family in such an important way.

Homesteading would teach my children responsibility and the importance of hard work. Oh yes, it will be a family affair! I will not get on my soap box about laziness in our society today. And it runs rampant, especially where we live. Children need to learn that nothing is free. Everything must be worked for. Enough said on that subject (I feel my blood pressure going up!).

So, with all of that said, I cannot think of a good reason NOT to homestead. And we might as well start sooner rather than later. Yes, I'm a bit obsessive.  I've already started doing my research, and I'll share my knowledge and experience with you along the way. I'm going to just take one step at a time, and watch the small changes add up to a whole new, natural way of living. 

Sunday, April 15, 2012

Autism x 2: Karen's Caregiver Story

Living in a small town and being at home much of the time leaves me lacking for close friendships. Being the mother of a disabled child makes it even more difficult to find people to relate to. However, I have had the pleasure to meet some wonderful people online since starting my Etsy shop. And best of all, I've found many mothers of children with disabilities.
One of my first online friends was Karen from North Vancouver, BC, Canada. Karen is a doll fanatic! She is a blogger extraordinaire, writing for several blogs devoted to dolls. She also has an Etsy shop where she sells her doll clothes and other items.  I came to know her when she asked to interview me for her blog. She was so kind to do a feature on my shop, which I will shamelessly link here! We kept in touch afterwards, when I learned she was the mother of 3 boys. It turned out our love of dolls wasn't the only thing we had in common. She shared with me that 2 of her sons are autistic.
April is Autism Awareness Month, and I couldn't think of a better story to share than Karen's. It was a thrill for me to turn the tables on her, making her the interview-ee instead of the interview-er. She was so gracious to agree, and here is her story.

Tell me who you care for, and briefly describe their disability.
Well, I am a mom of three boys. My oldest is 11, and I have an 8-year-old and a 4-year-old. Both my 8- and 4-year-old boys have Autism Spectrum Disorder (ASD). My 8-year-old also has had angioplasty, and is doing very well. Both of them have sensory issues and are considered "moderate" in the severity of their disabilities.

What are their limitations?
Limitations are a difficult thing to describe. The boys have issues they are working on. We run an ABA (Applied Behavior Analysis) program at home that really helps us all as a family to communicate and function well. While there are several non-preferred activities and actions that they each have, I prefer to not look at these things as limitations. I prefer to encourage them to overcome roadblocks, and we go on from there. Labeling the limitations seems to give the limitations more power then they need. Instead, we try to target realistic goals and reach them, surpass them, and move on to the next one. 

On a daily basis, what is the most challenging part of caring for them?
As a mother of three boys, I am told there is a special place in Heaven reserved for us! The most challenging part is sending them to school, where I do not have the control or ability to assist them. Putting your faith in others to guide them as you would is the hardest part for me. Okay- that and the lack of sleep. Mine are not great sleepers.

What is the most difficult thing you've ever dealt with in regards to their disability?
Stigma would be the most difficult thing  I have ever had to deal with. As my children do not have visible trait disabilities as other children with special needs do, if we have a problem in public, I am always met with questions and disapproval from others. Other people always believe they have the right answers and love to tell me "your son is too old to behave like that"- or my favorite "Your child really is spoiled, isn't he? You really need to just smack him...". Or when I let them know he has Autism, they always offer their unsolicited advice as to how I can "CURE" my child. Even when they are well meaning, it is hard to take.

Do you have your situation under control, or are you struggling with it?
With help and support, we mostly have our situation under control. But I do struggle with it the same way any parent struggles with what is handed to them. I try to take things as they come, pick my battles, and take lots of tea and hot chocolate breaks when I can.  I do not drink alcohol, which is a personal choice, and am always hearing from people that, if they were me, they would "take up drinking". It just doesn't sound like the solution for me.

Do you have a good support system?
I think I do. I have a great husband that I have been married to for 13 years. We met when we were in elementary school, so we have known each other for what seems like forever. I have a great family support network. My sisters, brother, Dad, mother-in-law, father-in-law, and sister-in-law are incredibly supportive and a gift! I have a best friend who, even after working 80 hours a week, comes and spends Friday night just watching TV with me and having dinner.  I do not go out alot socially, and it means so much that people go out of their way to make my life easier.

Has your situation affected other relationships in your life?
Absolutely. I am not normally a person who likes confrontation. Being a parent, especially when you have kids with special needs, means you have to become an advocate for your child's rights and a voice to those who's voice cannot be heard. As for friends, I consider myself lucky to have the supportive friends and family in my life, though my circle is small. It is the quality of my relationships, not the quantity, that matters.

What do you do for enjoyment?
I enjoy crafting, I always have. Recently I have turned my hobby into a business. I have a weekly craft column on I also taught myself to sew doll clothes in October 2010 after my mother died to keep myself busy. I started to sew doll clothes for my 5 nieces' American Girl Dolls. From my sewing and crafting, I began blogging on Christmas Eve 2010 (, and have had more than 100,000 visitors since then. I also have three other blogs,, and an American Girl Mystery Book Club blog called I collect dolls; I have 4 American Girl dolls, 1 Maplelea doll, 1 Australian Girl doll, 1 My London Girl doll, and 2 Springfield dolls. So I have become a writer, blogger, crafter, and Doll Collector in the last two years.
I also bake obsessively ( I have weekly orders at a law firm). You may find this funny, but I am a huge NASCAR fan. I am Canadian, do not drink or smoke, and I love NASCAR. It is a sport I completely understand and am fascinated by. I find the sights, sounds, and smells of NASCAR to be more calming than spa music or aromatherapy. For our tenth wedding anniversary, my husband took me to Daytona International Speedway in Florida, and I did a hot lap with Richard Petty Driving Experience. I loved it! So much so that for Mothers day the following year, I did a hot lap at the Las Vegas Motor Speedway, and my boys all got to watch! I have been to tracks at Daytona,  Delaware, Las Vegas (twice) and Texas. I saw my first and only live races in Texas, and hope to one day see many more races.  It is the fault of Disney Pixar that I fell in love with racing and something I will be ever so grateful for!

What is your favorite attribute about your sons?
That they are kind and caring, non-aggressive boys. I am so very thankful for that!

What is it about your life as a caregiver that you want others to know?
I would love people to know that it doesn't help anyone when you say "I don't know how you do it!" or "God only gives you what you can handle".  I think that makes them feel better, but doesn't make me feel great. I also hate being called a "Super Mom", as that just puts me on a pedestal I do not deserve. I have good days and not so good days, just like anyone. I yell, have dirty dishes in my sink, the kids rooms are always an organized disaster, and I suffer from C.H.A.O.S (Can't Have Anyone Over Syndrome) despite my best efforts with fly lady, which is a great web site, and one I use as much as I can (
The fact is I do what I can. I get up every morning and put on my "big girl panties" and deal with my life the best way I know how.

How has being a caregiver changed you?
Well, it has helped shape my life in so many ways. I think as an oldest child, I have always been a caregiver. Having kids solidified that. I think I have become more sympathetic to the needs of others regardless of abilities. I think it helps me remove myself from my situation and look at others and marvel at their abilities, despite their own disabilities.  I think it is important to realize that everyone has special needs regardless of diagnosis. No one is so different that they do not respond to human kindness.

Have you learned anything about yourself?
I believe I have. I have learned that it is the connections you make with each and every person that help you become the person you are. I have learned to step back and embrace what others have to offer, take the best of what they have, and mold that into myself and who I am today.

Saturday, April 14, 2012

Slow Cooker Saturday: Roast with Onion & Mushroom Gravy

I really found a keeper with this one! It is easy, has very few ingredients, and tastes fantastic. I know I've mentioned before what picky eaters I serve. Well, we have made this roast twice already. That is saying a lot, believe me! I served it with mashed potatoes and corn--yummy!

Roast with Onion & Mushroom Gravy

2 1/2 lbs chuck roast, trimmed
3/4 tsp black pepper
1 can (14oz) low-sodium beef broth
1 can cream of mushroom soup
1 envelope onion soup mix
2 Tbsp cornstarch
2 Tbsp water

  1. Sprinkle roast with pepper, then place it in a slow cooker. Add beef broth, mushroom soup, and onion soup mix.
  2. Cover and cook on HIGH for 1 hour. Reduce heat to LOW, and cook for 7 hours or until tender. Transfer roast to a serving platter, reserving juices. Keep warm.
  3. Whisk together cornstarch and water; slowly whisk into juices.  Increase heat to HIGH, and cook uncovered for 1 minute or until slightly thickened, whisking frequently. Serve roast with gravy. 

Thursday, March 8, 2012

It's Time for Baseball!

Well, it's that time of year again. Corey's Junior High Baseball season began last week.  The first game was away, so I wasn't able to watch it.  But I was there for the first home game this week. He's in the 8th grade, so he's considered an upper classman this year. And I must say, I was taken aback at how grown up he's getting.  It hasn't really hit me yet that he will be in high school next year.

If you follow my posts, you know that Corey is active in every sport they offer in school. But baseball is his favorite.  He's played since he was 7 years old, when he made the All-Star team after the little league season.  His Dad got a tournament team together after that, and they travelled on the weekends to play. They did that for several summers. I have to say...they weren't very good. Wins were very few and far between. But they all learned a lot, and enjoyed getting to play and travel.  A couple of years ago, Corey joined a tournament team from a neighboring city. They were a much better team than our local one. But he really missed playing with his friends.

So now, he and his friends are junior high aged, and they are still playing together. They still have a long way to go, as far as skills go.  But I always enjoy watching them, no matter the score! I'm proud of Corey for always trying to be a leader on his team. And, of course, I think he's pretty awesome :)

Monday, February 20, 2012

Custom Cheerleader Outfits

I often have requests to make doll-sized replicas of girls' cheerleader outfits. If I have the time to work on them, I love the challenge! They are very time-consuming, but well worth it when the final product is a success.

I was recently asked to replicate this outfit for a group of little cheerleaders in Texas. The customer asked for 8 sets of them! She had been granted permission from the designer of the uniform to have these made, but we weren't allowed to duplicate the logo. The customer was going to add the "bling", as she put it, afterwards. At first glance, it didn't seem like there would be too much involved in reproducing this set. The design itself wasn't that difficult to create.  But once I got started with the sewing, I realized that I would need to change thread between the white and navy fabrics. And although this wasn't difficult, it did take a lot of extra time. But the results were definitely worth it:

These are some I've made that were more elaborate.  So cute--and fun to make! Hope you enjoy :)

Sunday, February 19, 2012

Where Do The Days Go?

I have been gone from the blogs for the past couple of weeks. Where do the days go?  I suddenly had several things going on at the same time, which left no time to write. For now, at least, it seems things are caught up.  Let me give you an update on what's been happening in my world.

On Sunday, February 5th, I lost my last living grandmother. Genevieve Estep was the mother of my stepfather.  I say that just to put into context how we were related; I don't consider my "step" relatives any different than the other ones. She was my grandmother, and was a wonderful Christian woman. She lived several hundred miles away, so I wasn't able to attend any of her services. But I enjoyed the many hours I spent that week remembering her, and the joy she brought to my life.

While I'm on the subject of saying goodbye, on February 7th, I parted ways with my HTC Hero, and made the upgrade to the iPhone 4S! I was afraid that I would mourn the loss of my Hero; it was my constant companion for almost 2 years. But I do love the iPhone, especially the FaceTime.  It's awesome to visit with my Dad face-to-face, even though we're 600 miles apart.

I had a couple of big orders in my Etsy shop over the past couple of weeks too. This was probably the biggest drain on my time recently. One was a request for custom cheerleader outfits, which I love to do when I have the time. I was very proud of the way they turned out, and I will post about it in more detail in the days to come.

I will also share soon my first run at making homemade laundry detergent. The idea came from Pinterest, and it was so easy.  I tried some ideas for Valentine's Day that also came from Pinterest and other blogs. I found these Valentine's Pretzels at Mrs. Fox's Sweets. 

The card reads "Thanks for 'Stick'ing by my side"--so cute! I found these printable cards at Six Sister's Stuff (one of my favorite blogs!).  I used several of their ideas for Valentine's treats for my crew. One read "I'm 'nuts' about you", which I put on a bag of roasted, in the shell peanuts that my husband loves. The "Life would be un'bear'able without you" card went on a package of gummy bears. And finally, I put a card reading "You have o'fish'ally stolen my heart" on a bag of goldfish crackers.

We finished off this past week by celebrating Kirby's 3rd birthday. He was too excited about it, and I will certainly be posting soon about all the fun he had.

Hopefully, this has me up-to-date.  I've spent the weekend cleaning and washing, and getting things back to normal.  That way I'll have plenty of time to get back to what I love next week--sewing and writing!  Until then...

Wednesday, February 1, 2012

A Call from the Teacher

So I get a call yesterday morning from Corey's band director. It seems my 13-year-old angel has been a bit on the disruptive side lately (who would have imagined that). She filled me in on at least 3 different occasions where he had to be sent into the hall for talking and making noises that were interrupting the class. Once, she even had to take him to the office for a visit with the counselor. During this visit, Corey evidently expressed his desire not to be in band anymore. She even described a couple of instances where he had shown disrespect to her (oh no, not MY teenager!). I apologized to her for his behavior, explained that we don't tolerate that, and promised to discuss it with him. Then, I waited on the edge of my seat for him to get home from school.
We really don't tolerate disrespect. It seems that so many teenagers these days don't have respect for anything or anyone, and it infuriates me. And to hear that my son was acting that way...well, it sure doesn't make me happy. I have been suspecting that his interest in band was waning, and planned to discuss it with him at the end of the school year. But when the instructor calls, plans get changed.
So he makes it home, and I call him out to the back patio. The beginning of our conversation went something like this:

Mom: So, you want to tell me what's up?
Son: With what?
Mom: In band. What's going on with you?
Son: Umm...I had to go out in the hall because I accidently made some noises.
Mom: Accidently? How do you accidently make noises?
Son: (I honestly don't remember what he said here. I was trying to get over the accidently making noises thing.)

I explained to my 13 year old angel the importance of sitting still and paying attention so as not to make any "accidental" noises. Then we got into the discussion of being disrespectful:

Mom: Did she get on to you for talking with the other trombone players?
Son: Hope was asking me a question about one of the signs and I was telling her what it meant.
Mom: And did she ask you if you were finished with your conversation?
Son: Yeah
Mom: And what did you say?
Son: I told her no.
Mom: Was that the right way to answer her?
Son: I was still talking to Hope!

So I explained to my 13 year old angel that the correct way to address his instructor was to say "Yes, ma'am", then shut your mouth. And the conversation continued with me asking him about his future in band:

Mom: Are you ready to get out of band?
Son: I don't know.
Mom: It's ok if you are. I know sports is your thing, and if you don't want to be in band next year, that's fine. Do you want to get out?
Son: (Pause)...yeah, I guess.
Mom: I'm not trying to pressure you to quit. You're not getting out right now in the middle of the year, so you don't have to decide right now. But you think you don't want to do it next year?
Son: I don't know...

Oh, I'm so confused!

I finished the conversation by laying down the law. I made him surrender his iPod and phone, telling him I would check back with the band director at the end of the week and see if his behavior had improved before giving them back. Oh, but he had a better suggestion. He said, "It makes more sense to call her at the end of the week, then take it away if I don't do better."  I'm so weak! I agreed to do that, then made him write "I will show respect to my teachers every day" on the front and back of 2 sheets of college-ruled paper. (Do teachers still make kids do that?)

Why do I feel like this scene will repeat itself over and over again for the next few years?

Tuesday, January 31, 2012

EEBA-Easy Envelope Budget Aid

     Do you use the envelope system for your monthly cash expenses? I do, and I've found a great website and app to help me keep track. I originally found EEBA, or the Easy Envelope Budget Aid, through the Android market for my phone. There is an accompanying website that touts EEBA as a personal and family budget planner, perfect for proactive expense tracking and money management.

      In the past, I've tried to put cash in actual envelopes. I never was successful keeping it all straight. Plus, I'd have to physically go in the bank and ask for x number of $5 bills, x number of $1 bills, etc. (Ok, I'm lazy...I prefer to use the drive thru.) Even figuring out how many denominations I needed got confusing. In my book, if it's not easy to use, it fails. I'm all about easy.

     The EEBA system uses virtual envelopes. You determine what "envelopes" you need (groceries, gas, eating out, etc.), then assign a monthly budget amount to each of those categories. I prefer to use the Android app to keep track of mine, so I will show some screenshots (taken from the Android market).

This shows the virtual envelopes this person has set up. On the far right, it shows what the budgeted amount is for that category (the bottom number), and the remaining balance in that category (the top number). Hmm, looks like they've spent too much on the is never a good color! Anyway, whenever you make a transaction, you record it. You are prompted to assign an amount to the transaction, then select which "envelope" your expense came from. The program allows you to split your transaction into multiple categories, as shown in this image:

It's that easy! Now there is a record of all your cash expenses right at your fingertips.

Now there's no need for figuring out what dollar bills go in which envelope. Keep all your cash together (in one envelope, if you like). And when you need to know how much you have left to spend on gas for the rest of the month, EEBA will tell you.
You may prefer using the website. If you use both, there is a sync button to keep all your information up-to-date on both devices. But which ever one you use...use it! It's a big help in keeping your spending in check.

Monday, January 30, 2012

The Sun's Up?

     I woke up Sunday morning to something unusual. Well, it's unusual for me anyway. The sun was up! I had to do the "what day is it" and "where am I" thing, and then looked at the clock to find it was 7:05am. Then I proclaimed out loud "The sun is up", as if it was a strange phenomenon. I did vaguely remember by alarm blaring out at 4:00am, my normal waking time. However, this day it must have been more of an annoyance than a call to rise, as I also vaguely remember turning it off.
     I have not always been an early riser. Oh, the SBK days (single-before kids)... I would sleep until noon, then lounge around with nothing to do in particular. I mean it didn't take long to clean up back then. And I didn't have to make sure anyone was fed. And I didn't have a huge pile of laundry staring me in the face. (Wow, what did I do with all that time?) For that matter, I didn't have that many interests to spur me to action. No, just some TV time and visits with my bestie. I actually couldn't imagine why anyone would want to get up early.
     I opened my Etsy shop in October 2010, right before the Christmas. Let me just say...if you are planning to start a retail business of any kind, right before the holidays is not the ideal time. And I make doll clothes (you know, that falls under the toys category). So needless to say, I was in over my head from the start. I was sewing every waking minute, and that wasn't enough. I needed more "waking minutes", and began waking up super early...4am.
     Well, I kind of liked it! It was quiet, and I didn't have anyone calling out "Mom" every two minutes. I had time to focus on my work, which I quite enjoy. And once the shopping season was over, I continued to get up early. I suppose it had become a habit by then. But I so loved my time alone that I didn't want to waste it. And I still do it today (well, with the exception of yesterday.)
     I love to open the blinds in my workroom (which faces the east) and experience the beautiful sunrises. Nothing makes me stop and take notice more than the dark tree branches against a brilliant orange sky. It is always a spiritual moment for me, one where I get to thank God for another day on this earth. The early mornings also give me quiet time to reflect on things. While I sew, I think about all kinds of things-my husband and kids, family and friends, my home and my work. I pray, and I plan. I imagine and dream. This is my favorite part of the day, "me" time!

     Now, I actually can't imagine why anyone would not want to get up early.


Sunday, January 29, 2012

Multiple Sclerosis: Kim's Caregiver Story

I had already had the idea to do this interview series when I came upon Kim on the Createability chat threads. Kim is 21 years old from Bristol, England, where she operates her two Etsy shops; she sells her handmade items at Peaches and Pebbles, and Dandelion Grenade is her stationary shop.  She was looking for people to interview about their disabilities for her blog. I guess great minds think alike! After talking with Kim some, I learned that she is a caregiver to her mother who has Multiple Sclerosis. Right away, I was anxious to hear her story, as I have an aunt who suffers from the very same disease. Here is Kim's story:

Tell me who you care for, and briefly describe their disability.
I care for my mother. She was diagnosed with Multiple Sclerosis in 1989, 2 years before I was born. She was still able-bodied back then, and did her best for me while she could, but she would have relapses where she would be depressed and have trouble doing what a healthy person would consider to be basic things (using a computer, reading a book, doing cross stitch etc). About four years ago she had a relapse and just never recovered, and now she struggles to do the truly basic things, and has become a completely different person. Multiple Sclerosis, or MS, is a neurological disorder and has affected her ability to think properly, walk, or do much for herself.

Kim's Mom

What are her limitations?
She is unable to do much for herself. Myself, my boyfriend, and my father all do our bit. We have to feed her, wheel her around since she can't walk any more, and forgets things that we told her only a moment before. She also thinks when she hears a noise that it's someone coming into the house to see her, a friend. But when we tell her there was no noise, she's always convinced we're lying - though I think that's to do with her own stubbornness! She can't hold things properly, she shakes and wobbles even while sat in her chair, which she cannot get out of on her own. Needless to say, its difficult.

On a daily basis, what is the most challenging part of caring for her?
The most challenging part of looking after her is actually quite simple. As I mentioned before, she forgets a lot of the things we tell her, so the hardest part is trying not to get frustrated when she asks the same questions over and over if she hears a noise. The worst it's been is when our dogs passed away. She would always ask where they were - I think the last one passed in the summer just gone, and even now, more than 6 months on, she asks where they are, and still thinks we're lying.

What is the most difficult thing you've ever dealt with in regards to her disability?
The most difficult thing I've ever had to deal with was trying to understand what was wrong. Even now, I can't eloquently put it together. I know that something is wrong with her brain, and that she always says her thoughts, no matter how wrong or offensive they can be from time to time, and that she can't do anything for herself, but I can't say I've ever known why. And it's also been the classic case of "you don't look sick". My teachers would get mad at me when she felt too tired to come to parent-teacher meetings, and I always tried to explain why, but I couldn't do it. And even now, she doesn't look sick, the only hint at it really is that she's sat in a wheelchair. She still sings along to music (out of time, and key, bless her) and laughs a lot, but she is sick on the inside.

Do you have your situation under control, or are you struggling with it?
I think we do have it under control, more or less. She won't ever get better, and it's likely that she'll get worse, but it's a slow process, which gives us all a chance to adjust and buy the equipment we need, like stair lifts, different wheelchairs, bath hoists and the like.

Kim's Mom & Dad
Do you have a good support system?
I think we do. My dad is a team leader at an air craft production place, and he knows some people who have disabled wives and children, so he talks to them from time to time. I have my boyfriend, and two friends who are absolutely amazing. So we all get through it as well as we can. We have good days and bad days.

Has your situation affected other relationships in your life?
My relationships haven't really been affected, but hers have. She used to be close with her aunt, who was near her age, and she had three friends she'd known for years. When she suffered that relapse, I think it was one of her friends from Sainsbury's where she used to work who was the first to go. She lived nearby, and still does, but she doesn't come round anymore. Then her aunt stopped visiting, then a while after her other friend left, leaving just one woman - the one who everyone here preferred and thought highly of - who she met when I was born. She used to visit every other Thursday for a chat and a coffee, but we haven't seen her since Christmas 2010. We were very surprised, because she seemed to be doing fine with mum's condition, but we've not seen or heard from her since. We all assume she moved to France. I hope that that is the case, but now all my mother has is us.

What do you do for enjoyment?
For enjoyment, I make things, and I write. I want to write more than anything else in the world, so I'm working hard on it. But otherwise, I make and sell my jewellery and hand-stamped stationery in my two Etsy stores, since it's the only way I can get a bit of money, and I watch movies and play games frequently with my boyfriend. We're obsessed with How I Met Your Mother at the moment, we just keep buying the DVDs!

What is your favorite attribute about your mother?
My favourite thing about my mum is her laugh, without a shadow of a doubt. She goes "Oooh hoooh hoooh!" When she laughs, and it's so funny. As bad as Multiple Sclerosis is, it's changed her into such a happier person. I think it's because it's taken away her ability to worry or fret over things, and as a result, she doesn't go a day without laughing at least ten times. And, the best part is, it's so easy to make her laugh. She never used to laugh much before, but I think that that was also partly because she knew what was going to happen to her eventually. I don't know how I could live with that thought, myself.

Kim, her sister & nephew, and Mom

What is it about your life as a caregiver that you want others to know?
I want people to know that it isn't just the disabled person who suffers. To be a carer, you have to sit by and watch someone you love go through something you can never properly understand without going through it yourself. It's difficult, especially when it changes the individual so drastically, and said individual is a figure of such importance to you, as your mother or father. And I also want people to know that the carer needs just as much support from their friends, and for everyone around them to understand that caring comes before going out and having fun. If you know someone who's a carer, buy them a pot of instant hot chocolate, a bag of marshmallows, and give them a hug.

How has being a caregiver changed you?
I can't really say if it's changed me or not. My mother has slowly gotten worse all my life to a point that I don't really notice it. I never really realised how bad she was until she was sat in a wheelchair. I like to think that it's made me patient, but I have a worrying feeling it's made me less so, but it has taught me the value of doing things while you can, and making the most of being able-bodied and -minded.

Have you learned anything about yourself?
I've learned that the simple things are important. Laughing, reading, drawing, being able to make rational decisions when I need to. Other than that, I don't think there's much else...