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I Fell And I Can’t Get Up – CMT Bad Days Exist

November 8, 2017 by Ashley 2 Comments

This post is a little late as I intended for it though be posted in September because it was Charcot-Marie-Tooth disease awareness month. I didn’t want to bombard people with boring statistics about my disease. Instead I wanted to talk about one of the big things that I deal with being a person with CMT. One thing I wanted to showcase is that my life isn’t always easy.  I do get CMT bad days as I call them.  They are days when nothing seems to go right.

The scariest moment I have had as a mother happened to me when my son was around 9 months old, I’ll be honest that I can’t remember exactly how old my son was when this happened, but the day will be I gained in my memory for life. When my son was little I did a lot of running around the house because he was not an easy baby. I could never set him down for long before the screaming began.

On this particular day my son was acting up and I needed to get more diapers and wipes from his room in the basement. I laid him down in the living room in a spot where he couldn’t be hurt if he rolled over. I was thankful that he didn’t really like rolling over and wasn’t mobile. It was supposed to be a fast and easy task, but he had started screaming before I even set foot on the stairs. The next part is a blur. I panicked and moved too fast; the next thing I knew I was on the bottom of the stairs. We don’t even have just a single flight of stairs; we have a split set of stairs that I somehow slid down the stairs.

This was one of my CMT bad days.

When I tried to get up I just couldn’t. My whole body was in shock. I could barely feel my hands and feet. My legs wouldn’t hold any weight. Heck I couldn’t even sit on the ground because I was hurting so bad. I “crawled” which was actually me dragging my lower half across the floor 10 feet to get to my phone. I called a neighbor, but she wasn’t home. I was really starting to panic because my son was screaming at the top of his lungs and all I wanted to do was be there for him.

I turned back around and dragged myself up the stairs without letting my feet or ankles hit the stairs because that made me feel like I was going to black out. I can’t tell you how long it took me to get to my son, but I did it. I was bawling my eyes out as I picked him up. All I could do was hold him close to me. I felt like the worst mother. I had felt like I failed my son and it was all because of this stupid disease that I have.

In the moment I felt helpless holding my helpless son. It was in that moment that everything changed.

From that moment on I told myself that I was going to do everything in my power to keep myself safe and care for my son. I make sure that if I am feeling flustered or feel like my body is getting stressed out I take it easy and move slow to help prevent myself from letting my body get out of control. I struggle every day with caring for my son. Some days are easier and some are harder, but in general I manage every day.

Do you have any daily struggles that you live with?

Filed Under: Featured, Parenting Tagged With: Charcot–Marie–Tooth disease, CMT, Disability, Disabled, Parenting

ecoAble All-in-One Cloth Diaper Functionality Review

August 9, 2017 by Ashley 4 Comments

This is a sponsored post thanks to ecoAble who sent me a diaper to review.

Cloth Diapers can be daunting to new parents, hell they can be daunting to experienced parents as well, especially to those of us who have limited mobility and have to itemize what they do in a day so that they do not run out of energy to complete the day with. (Check out Spoon Theory for a better explanation.)  My son is 17 months old and we have used disposables from day one with no issues aside from the nagging feeling in the back of my head about how much trash we were making and how much money has been wasted on these disposables.  This is why I decided it is time to find out which Cloth Diapers will work with someone with limited dexterity in their hands like myself.  Today I am starting this journey with an ecoAble All-in-One cloth diaper.

ecoAble All-in-One Farm print Cloth Diaper

Diving into the world of cloth diapering still scares me, but I am diving into the shallows first.  All-in-One diapers are known for being the easiest diapers to work with because they do not require a cover and don’t have to be stuffed though you can stuff them if you need extra absorbency.  The ecoAble All-in-One diapers come in snaps or hook and loop like you see above.  Today I am just reviewing their hook and loop cloth diaper for functionality.  I chose to start with hook and loop because I will admit that I am terrified to actually attempt snap diapers.

ecoAbleecoAble AIO Design

The ecoAble AIO cloth diaper has a nice sleek design; the interior is made of soft charcoal bamboo fleece that helps to wick moisture away from baby’s skin to help keep their skin dry (and hide stains easier than white material).  This diaper is made with a sewn in absorbent material so there is no need to stuff the diaper.  It does however come with a bonus pocket that allows for the stuffing of the diaper if you have a heavy wetter or want to use the diaper for overnight use.

By looking at the diaper you will be able to see that these diapers have really tight elastics around the legs to help create a great fit on baby.  They also come with snaps on the front of the diaper to change the rise of the diaper so that it can fit a child approximately 10 lbs to 35 lbs.  A great addition to this diaper is the laundry tabs that you can fold over so that the diapers don’t link together in the wash as well as to help ensure that the hook and loop doesn’t get destroyed in the wash.

Hook and Loop Functionality

The hook and loop on this ecoAble AIO is firm, but not too firm that I cannot grasp it.  It is also made nicely so that there is a small tab for me to easily grab and pull the hook and loop apart.  I find this to be great because there are times with disposables where I cannot pull the tabs back off of the diaper when my son is wearing it.  I have destroyed many a diaper by tearing the tabs completely off just so I can remove the diaper.

Now for the scary part; the rise snaps.  I was nervous about the snaps because there have been many snaps on my son’s clothes that I have been unable to snap and unsnap.  Thankfully the snaps on cloth diapers seem to always be the plastic snaps and these tend to be easier to snap than the metal ones.  However I will admit that in order for me to snap these together I must hold the diaper a certain way and use my right thumb on the inside of the diaper and have my left hand holding the rest of the diaper still as well as using my left hand as a brace to push the snaps firmly together.

Final Verdict

I would have to say that I rate the ease of the ecoAble All-in-One cloth diaper a 4.5 out of 5 because I am able to adjust the diaper as well as use the hook and loop feature with ease.  I am not giving it a full 5 because I do believe that disposables are still easier even though they aren’t cost effective or eco-friendly.

Where to Buy

If you are interested in purchasing the ecoAble All-in-One diaper you can check out their website.  You can buy them as single diapers for $15.99 or a 6 pack bundle for $64.99.  Purchasing the bundle brings the price down to $10.83 a piece.  The bundle is a great way to start a stash even if you don’t get to hand pick all of your prints.  You will also want to make sure that you check out their promo page to get the best bang for your buck!

Filed Under: Cloth Diapering, Parenting Tagged With: Cloth Diaper, Cloth Diapering, Disability Hacks, Disabled, Parenting, Velcro Closure

How to be a Great Mom with a Physical Disability

December 15, 2015 by Ashley 14 Comments

Living life to the fullest has always been my motto, but that isn’t always the easiest thing to do when you have a physical disability.  I have been learning tips and tricks to being a great mom while having a physical disability.  These tips and tricks have already been helping me to be a great mom and because of that I really want to share what I have learned with everyone.  I would like to think that there are other women out there who felt lost and frustrated becoming a mom while having a physical disability.

great mom

1. Gadgets are your friend

Growing up with a physical disability you learn ways to adapt your life, but that never quite prepares you for major life changes.  Bringing a child in the world is definitely a major life change and there will be things that you cannot do like other moms out there, but that does NOT make you a bad mom.  You just need to find a way to do it yourself.  One way that I have learned to adapt things is by buying the Button Bopper.  It allows me to be able to push the buttons on car seats, strollers, and other devices that have tough little buttons to help keep your children safe. There are so many more things that you can do to make life easier that will also turn you into that great mom that you want to be.

2. Don’t be afraid to ask for help

Asking for help does NOT make you a bad mom; asking for help means that you are admitting you have limitations.  It also means that you are willing to give your child the best care that they can receive whether or not you are physically able to do it yourself.  This is an important thing to remember because being a great mom means that you are always looking out for your child’s best interest.

3.  Be Creative

Creativity can help you spend time with your children even when you don’t think you have the energy to keep going.  Don’t give up.  If you are feeling tired or too drained to stay on your feet then find an activity you can do with your child on the bed, couch, or floor.  Your little one will appreciate the time you spend with him instead of just setting him inside a play pen.  Have a few little toys that you can play with together or a good book to read.  You won’t want to miss out on these opportunities while you have them.

4. Be willing to use all of your spoons, plus some

Anyone who has physical limitations like me probably knows the Spoon Theory.  If you don’t the spoon theory consists of a theory stating that every day you start with so many spoons and each task you do will take up a different amount of spoons.  The idea is to show the world that every little task can be a little bit harder for us.  Here is the thing when you are a mom and you want to be there for a child it may seem like magically when you thought all of your spoons were gone more appear.  This is okay.  This is great.  You may be extra exhausted when you finally hit the hay, but remember it will be worth it in the end.

5. Let your instincts take over

Don’t question yourself as much as you want to.  It is okay to let your instincts take over.  Just because you have limitations it does not mean that those instinctual motherly actions and feelings won’t come into play.  Instead your body will guide you and help you to know what you can do right to take care of your child.  You have an inner strength that grows even stronger with that bond between you and your child.

Just be the Great Mom you know you can be!

 

1improve blog hop

Don’t forget to visit these awesome bloggers who are helping us all improve our lives in 2016! From reducing your carbon footprint to becoming a better parent, they’ve got it all!

Improve Your Photography – from Slap Dash Mom

Start a Budget in 2016 – from Life on Deer Run

Improve Your Relationship With Your Teen – from Five in Ohio

10 Ways to Reduce Your Carbon Footprint – from Driftwood Gardens

6 Easy Ways to Improve Yourself – from Bits of This and Pieces of That

5 Easy Ways to Lose Weight – from Walking on Sunshine Recipes

7 Ways to Eat Better in 2016 – from Wendy Ilium

2016 is My Year to Forgive Myself – from Witch Weigh

Stress Less About Cleaning – from Ooh Shiny

Be a Better Mom – from It’s a Kono Life

Be a Great Mom With a Physical Disability – from Parsimonious Pash

Making Better Time with Twins – from Twins and Testing Things

Fall in Love With YOU – from Crazy Bloggin Mom

Filed Under: Family, Featured, Parenting Tagged With: Disabled, Education, learning, Parenting

Dear Baby Mama Marketers

November 11, 2015 by Ashley 1 Comment

baby robert
My nephew, Robert, in my sister in laws double stroller.

I am writing this open letter to all baby product manufacturer’s out there; this is written by a flustered first time mom.  I want to be over joyed about the birth of my son coming in the new year, but every time I start to feel elated something weighs on my heart.  All of your companies set out to make products that make the top of the market and are best seller’s.  This is a great thing because your products are helping so many families out there.  However you are forgetting a huge sect of people on the market; you are forgetting all of the physically handicapped parents and grand parents out there.  This is what saddens me.  I cannot shop like other mother’s out there.

Picture your average first time mother who is getting excited for her new baby; she goes to the store and eagerly starts to pick out the items that she wants to add to her Baby Registry.  She knows that if she does not receive these items that she will find a way to get her hands on them whether it is by buying them new or used she knows she will find a way.  I have seen these mother’s in the store.  You can see the twinkle in their eye and the smiles on their faces.  They are talking to their little one’s growing inside of them telling them just how lucky they are going to be- but alas that is not always the case.

baby productThe experience is completely different for me.  I go to the store with a smile on my face ready to hunt for the best products for my little one.  I track down some of the highest safety rated products and find that I cannot use any of them.  My smile fades and my shoulders slump.  I know this feeling too well; the feeling of utter disappointment while shopping for something I will never be able to have.  I press on.  Why do I press on?  I press on because my child will need a car seat, a stroller, and so many smaller items that I won’t even touch base on right now.  I know that my child’s safety is the biggest concern and because of this I truck on trying more and more products.  Hopeful, that I will find that one magical item that I can press the darn button on.  After going down aisle after aisle of products my defeat is sinking in.  Tears of frustration are brimming in my eyes.  I don’t get to have that twinkle or that excitement in my voice talking about all of the amazing products that my baby boy will be able to experience once he is born.

After trial and error I realize that I will never find the perfect product.  I will never be able to buy my first pick item that has the highest rating because I will never be able to work the buttons, clips, and latches on them.  I have to give in to the fact that I will always have to have help from another individual.  It isn’t fair.  I can function daily on my own without help.  I go shopping alone. I drive my own car and I manage to keep a house orderly however I cannot travel with my child alone.  How is this fair?  How is it fair that I have to struggle and try to get creative to make things work?  Should I really have to attempt to create gadgets to help me do all of these buttons and clips?

It isn’t fair.  It is your job to create products for everyone.  The disabled should get just as much attention as the general public.  We are consumers too and we will buy your products if you make them handicap friendly.

Sincerely,

The Defeated New Mom

Filed Under: Baby, Family, Featured Tagged With: Baby, Baby Products, Disabled

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