Persevering Momma

Taking The Day One Spoon At a Time

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

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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?

Breaking The Stigma: Disability or Not I Can Cloth Diaper

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I was a chicken.  I will admit that now.  I was terrified of using a cloth diaper on my son for a variety of reasons.  Of course a year and a half later I really, really am starting to regret not cloth diapering my son.  There are so many things that I have learned about disposable diapers as well as cloth diapers in this last year that I didn’t know before I was a parent.

When you are a soon-to-be parent there is an overwhelming amount of knowledge that you feel you need to learn about and unfortunately there isn’t enough time to learn it all.  That is why I want to share this with you all.  This is especially for those soon-to-be parents who just can’t decide what the best option is and ultimately go with the easier of the two options like I did.

 

Why I ran away from cloth diapers before giving them a chance.

The biggest reason I ran away from cloth diapers was because… dun, dun, dun… I was afraid of the mess.  I know, know.  That is so typical isn’t it?  I was afraid I wouldn’t be able to handle the mess that comes with cloth diapering and I felt like I didn’t have the time to learn how to care for cloth diapers before my son was born. (I also didn’t think I would be able to teach hubby how to care for them either; I was nervous enough about him washing the baby’s clothes as it was.)

Should I have been afraid of the mess?

I can’t really say, but I do know that the first two months would have been really hard for me because I was healing from surgery and could barely do the stairs to make it to our laundry room.  So, realistically it would have been a real mess.  As a parent though I have come to realize that even without cloth diapers I don’t escape the mess so there was no reason to be scared of it.

The fear that brought me to tears was completely different from being afraid of the mess and that was the fear that my disability would make it impossible to cloth diaper.  In hindsight I realize that the fear was real, but that it was heightened by the fact that I was hormonal and everything felt way more extreme to me.

Should I have let my disability get in the way?

I shouldn’t have let my disability win; instead I wish I had gone to a cloth diapering class and could have gotten hands on experience with some of the cloth diapers on the market today.  There is a wide variety of styles out there that I could have used/tried, but I was too scared of them.  I chose to chicken out and go the easy route with disposable diapers.

When you have struggled with clasps, snaps, and some velcro your whole life you really start to doubt your abilities to care for your children and I will admit that I was terrified I wouldn’t be able to use cloth diapers without help from someone else.

Instead I am now saying I can cloth diaper!

My current determination to not let my disability win is why I am trying out a variety of cloth diapers.  I want to prove that someone with weak hands who often can’t even button a pair of jeans can use cloth diapers on their children.  This is why 1.5 years into being a mom I am deciding to put my foot down and start this new blogging series about cloth diapering with a physical disability.

Dating While Disabled

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Being disabled and jumping back into the dating scene is not as easy as some people would think.  Actually, most people probably do not even think about how much more difficult it can be for someone who is disabled to jump into the dating scene.  Dating in general is not the easiest task for most people.  It can be rather frustrating when you cannot seem to find someone that you connect with and it can be even harder to date when you are disabled.

Why is it so hard?

That is the common question isn’t it?  The reason that it is so hard is because every time you want to go on a date you need to think about what kind of a date it is going to be.  You need to plan ahead and make sure that it is something that you can handle in both a mental and physical way.  That alone can be problematic and when their plans don’t work with what you can and cannot handle then the long discussion begins about your handicap and what it all means.  This often takes a long time especially if your handicap is an “invisible” one.

The biggest problem that I come across is the fact that I have what I classify as an invisible disability.  Charcot Marie Tooth disease often is a visible disease in many ways although that is not the case with me.  I am ambulatory and often I do not wear my leg braces or I have long pants on that hide them and make it impossible for you to be able to see my handicap.

Remember this…

No matter how hard it may seem always be up front with people.  I have found that being upfront removes a lot of confusion and frustration down the road.  If someone is going to accept you for who you are they are going to do it from the start.  There is no need to hide it and it will make for a much easier dating experience as everyone will be able to understand what your possible needs are.

My last piece of advice…

Never give up! I know won’t!

International Day of Acceptance

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Day of Acceptance Disability Awareness

Day of Acceptance Brought to you by

3E Love.

I don’t think I can ever say enough about how important this topic is for me and so many people in my life.  You hear in the news and on social media all the time how we need to be accepting of people based on their race or color or religion, but the one thing that seems to not get much hype is acceptance of everyone even the handicapped.

I want you to think about it… how many people have you stared at because they looked different or were acting different?  Maybe, you don’t do it but you have seen people do that or they have done it to you because you are different.  I could write a book about all of the different things that people of all ages have done and said to me over the years.

January 20, 2013 is a day internationally where we can stand up together and show our pride.  Show that we share the need to promote a Day of Acceptance.  A day where everyone is truly equal no matter what.  Another reason this is so dear and close to my heart is because this day was started in remembrance to a close friend of mine who passed away a few years back.  I have talked about 3E Love here before because I love the organization and it is run by my friend in honor of all of the hard work his sister put into creating this amazing idea!

So, please check out the International Day of Acceptance and get your Facebook icon and Cover HERE.  You can also join the Facebook Event with me!! If you Tweet about this event please include #dayofacceptance in your tweet!  I would love to see you there and hear why you are joining me in doing this!  Who do you know with a disability and what makes them special?

Where is the ADA & the Constitution when we need it?

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Credit: AP

I have sat idly by for awhile now watching as things unravel and change here in our country. This morning I woke up to find out about this story that is all over the news and internet. I am not sure if you all have read it or not, but I couldn’t stand by and not discuss it.

A family in Missouri had to go through a huge ordeal just to fly to Orlando to go to Disney. The Transportation Security Administration (TSA) detained a wheelchair bound three year old girl, took away her stuffed lamb, and refused to allow the parents to videotape them patting down their daughter.

You can read the full Fox News Article or The Blaze’s article for full quotes and the the full story. Part of what bothers me so much is the fact that as you can see in the picture above the TSA is claiming that their pre-check should be helping people to NOT have to remove their shoes, laptops, and other things and what they did here is the opposite of this idea.

I understand wanting to ensure the safety of the passengers on a plane, but what they did here is just way too extreme. From everything that I have researched there is no law stating that the parents could not video record the pat down of their little girl. On top of that it is beyond wrong that they singled out disabled people to do searches on. I am rather appalled that they would traumatize a little disabled three year old so much that she was screaming and crying for her “lamby” and saying that she doesn’t want to go to Disney anymore. Her mom did what she could to calm her daughter down, but how do you really explain to your daughter who is that little what is really going on.

If I had been in those parents shoes I am unsure that I would have been that calm. My instinct would have been to record everything as well and to NOT let them touch my daughter without proof that they were allowed to do what they were doing. After arguing with a lot of people they ended up proving that much of what they were being told was not right. I hope that you all stand up with me when I say that we cannot let things like this slide in our country. Whether it is because you are disabled or any other situation that is similar to this one and there is no law backing what is being done.

With all of this being said I ask you to watch the video below that they did record despite being told that it was not allowed.