Mother's Day

In honor of Mother's Day, I wanted to make a post about my own mother. ;)

My whole immediate family has not had the easiest life. I know every person has his/her own set of obstacles to overcome, but I often felt like we seemed to have more piled on top of us. The biggest trauma that happened to us is that my father passed away suddenly at the age of 42 of a heart attack. My brother was 15, I was 11, and my sister was 6. In one night, my mom found herself a single mother to three children.

We were recently posting memories of our dad (he passed away May 5th, 1994) and my mom brought up her recollection of that night. She was at work, while us kids were home with dad. I of course knew what happened at home - the memories will forever haunt me - but I didn't know what my mom went through. It was strange, and heartbreaking, to read. Being a mother now, I put myself in her situation and I cannot imagine what she went through. I know we often find strength when we need to, and my mom definitely did. So much so that I think we all don't truly know how much she suffered. She had to be our strength.

Looking back, I see the sacrifices she made for us so that we could have the best possible life she could provide. Somehow she made it work on only one income, and somehow she helped us through such a traumatic event and we all survived.

My disability was the next big thing to hit me. My mom was there every step of the way - taking me to appointments and being there in every way she could. I know it sounds selfish, but I never really thought how it all was affecting her at the time. I had enough to deal with how it was affecting me. Now I see what she must have gone through as well. I remember our last trip to Mayo Clinic when the doctors told me that they had no clue what I have and couldn't help me...I left the room in tears. I remember seeing her cry as well, and that image seems to be burned into my mind as well. I think that's when it actually dawned on me the extent that my mystery illness was affecting her as well. I wasn't totally oblivious - I knew everyone in my life was affected by it. But to see her grieve for the lost chance of a diagnosis and cure, it made me see that the person that was always so strong and there for me probably shed many tears in private that I didn't see.

She's been my friend, my champion, and my teacher among many other roles that she took with her main role of mother. It sounds so cliche to say, but I really couldn't have asked for a better mother. She taught all of us to go for what we dreamed of, and to not let things hold us back. All of my siblings and I have learned so much from her and have grown to be caring people. And I think the reason we are who we are now can be traced back to our mother.

So, Mom, there's what I wish a Mother's Day card could really say. Thanks for all that you have done and continue to do for us. I hope that you know every day that we do truly recognize and appreciate it all. I think we would have all been lost without you. Love you, Mom!

Group for Families with Disabilities

I decided to finally start one for Washington County. I've been wanting to do something like it for awhile, but wasn't sure where to start. So I decided to just make a group on Facebook (link here). And made a public blog page here. I also posted on craigslist that I was looking for interested people. I'm going to be safe about it since I know the scary people that can be lurking online, but I figured it was a quick way to get the word out. I will screen each person that contacts before just meeting with them.

It can feel very lonely to be a parent with disabilities, and I'm sure it's also lonely when it's the child that has disabilities. I was hoping to set up a sort of support group and possibly play dates and local handicapped-friendly events.

I'm not sure if I'll find anyone interested or how else to advertise (preferably free for now!) but figured I have to start somewhere! ;)

Time for a party - a pity party that is

I'm warning you this will be a pity party post. Just let me get it out of my system, and then I'll go back to my normal self - not really Susie Sunshine, but trying to be hopeful with a dose of realism as well.

I didn't get the job. Yes, I knew this was a big possibility. I told myself not to get my hopes up. But that's hard when I was facing the prospect of almost doubling our income. I was dreaming about the bills we could pay and the things we could finally do. It was like dangling a much-desired object in front of me, but then snatching it away right when I had the hope to finally reach out.

Okay, maybe a bit melodramatic. But this job would have made us financially set. It was above and beyond what I was hoping for. Not only was it high-paying, it also had flexible hours. The job was with youth, one of my favorite populations to work with. And it would involve planning the whole program...I LOVE planning.

The key part that reeled me in? I could actually physically do the job! It was part time, so it wouldn't tire me out. There were no personal cares involved which I physically cannot do. The likelihood of violent clients was also low. Finding a job I can actually do is very difficult. That would be why I graduated last May and have been looking for a year now.

I LOVE staying home with my kids and would be fine doing that and volunteering if that was financially possible. Unfortunately, we are just scraping by. Finding a part time job will make me feel less like I'm failing my family.

It is so frustrating to go through so many years of college and end up with a Master's degree that is proving to be useless for me with my disability. I'm either overqualified, underqualified (not licensed is a big one...duh I can't become licensed until after I get hours in at a job!), or I'm qualified but can't physically do it. Or the company doesn't want to deal with my disability. Yeah, try proving that discrimination happened.

I just want to take care of my family. I don't need a swimming pool in our yard and a BMW in the driveway. I just want to make sure that my kids have everything they need. Why is that so much to ask for?

Okay, pity party done. Now back to the regularly scheduled blog. ;)

Facing the Fears

I'm sure many of us know of or have heard of someone who is disabled and rarely leaves the home. Some may wonder how that happens. After all, most places are handicapped accessible now, right?

It's not that easy though. I know all too well how easy it is to be trapped up in the fears and anxieties. I fight hard to not let myself be controlled by it though.

Yes, many places are handicapped accessible. Yet that doesn't mean that it still might not require an extraordinary amount of effort. It also requires facing the public, which is something I still struggle with to some degree whenever I go out. It can be little things...someone glancing at me a bit longer with an odd expression on their faces or sighing in exasperation when I'm not walking fast enough. Or sometimes it's even big things like someone confronting me about parking in handicapped, because a young mother of three couldn't possibly be handicapped. It's hard to face this daily. Sure, you can say, "Don't care what people think or say!" but it's hard to ignore when you're faced with it daily. I'm open about my disability. If you ask me politely, I will tell. But I don't like being looked at like a freak show, or even with a look of pity. Don't pity me. I just want respect and to be viewed as another human being.

The psychological aspects of being "on show" when in public can be daunting enough for many people and that's what mainly keeps them home as much as possible. The logistics of physically going out can sometimes make the task insurmountable at times. Going out in a snowstorm alone and trying to walk on unshoveled sidewalks? Forget it! There's no possible way I can do it. So unless I have someone with me I can't go to any location that doesn't have clear walkways.

Then there's also the assumption that anyone disabled is wheelchair-bound. Don't get me wrong, I am very thankful for all of the aids that we have available and don't believe that I'm somehow more important than someone in a wheelchair. But it would be nice if all modifications were not only made with a wheelchair in mind. I need ramps to get up curbs. Steeper ramps are very difficult for me, whereas they may be alright for someone in a wheelchair. So even the term "handicapped accessible" might not mean that it's overly accessible to me.

So, yes, going out in public can be scary. When I'm not out as much, I do see those social anxieties creep up and it bothers me so much. My disability has taken so much from me, but I'm not letting it take the freedoms I do have left from me.

The first snowfall of the winter we were leaving and Michael was helping me out the door. I'm not proud to say I sort of snapped at him. I felt he was babying me, and I bristled at it. I realized instantly that he was just trying to help and I was being unnecessarily mean, so I quickly apologized and explained that I needed to do it myself. I needed to remind myself that I could walk somewhat on snow and needed to do what I could do. If I let him help me all the time, I would become paralyzed emotionally and not be willing to do it on my own anymore. I think he understood and all was well. Yet I think of that day often as a great example of what it's like for us sometimes.

Besides me fighting the fears and trying my hardest to not allow myself to become housebound, I've found having children has helped me greatly with this. Like many other things, it makes me do things sometimes that I would probably not do for myself. I would do anything within my power for them, even if it means braving a world that may not be overly accessible, or overly accepting. My hope is they receive gifts as great as that from me as they have given me.

Products for Disabled Parents

Is there stuff out there for us? If not, why not? I realize there isn't a huge population of disabled parents out there, but there are still some. There are also grandparents or other family members with disabilities that sometimes care for a child I am sure.

If your know of a place or product that exists out there, please let me know about it!

If you are a company or person who sells products that could make a disabled parent's life easier, I want to know about it! I also would be willing to do reviews and giveaways. Products don't have to be only for disabled parents. I'm open to learning and sharing about many different products. Please contact me to discuss my terms at sarahlea1717@yahoo.com.

Until I find something specifically marketed towards disabled parents, I'll have to use mainstream products and see how they work for me. I will post reviews of items when I can. And also ideas of how things can be adapted.

Random Thoughts on a Saturday Night

I have a bunch of thoughts running through my head and it was hard to condense things to one topic. So, this may be a bumpy ride. Hang on! ;)

Kierra's 4th birthday is May 14th already. I've been throwing around some ideas. So far she is insistant on two things. 1) She wants to go bowling. 2) She wants a Rescue Heroes theme. I figured we could do a really small bowling get together first, then a larger party later. Kierra really wants it at our house, but it's small and there really isn't any parking. We may have to have my mom host it again, which I still feel weird about. I wish we could do it here, but I just don't know how it could be feasible. I also had the idea of a park shelter, but those aren't overly cheap either.

Ali has started with the "Why" questions. When I tell her not to do something, she always responds with "Whyyyyyyyyyyy?" She does it in this high-pitched, drawn out way that makes me want to scream but at the same time she's just so darn cute! At least she listens...sometimes. We often have to convince her it was her idea and then she's more agreeable to going along with us. LOL

Angie is alsmot crawling! I'd give her a couple of weeks and my guess is she will be a pro. She will be 9 months old on Kierra's birthday. Already!

I haven't mentioned in this blog, so for anyone not familiar with me, I have a Master's degree in art therapy. I graduated in May 2009 and have been home with the kids since. I had signed up for classes online last month. I was hoping to get a post-Master's certificate in medical family therapy. But, alas, that won't be happening. They failed to mention to me that the program is aid-ineligible. Yeah...thanks. Ugh. I'm not working so I don't have more than a grand to plop down for each class. So now I am in the process of applying to take classes for AODA certification. I figure this will keep me active in the field and possibly increase my potential for getting hired at some point. At least I hope. I have been on the look out for a part time job but haven't found anything yet. I would need a position that I could do, and my disability seems to always be in the way. Of course they never say that is why when they turn me down. But come on...I go from "Wow...Master's in art therapy! How cool!" pre-interview to "Sorry, you don't meet our qualifications" in the letter later. I can't help feeling my disability has to be playing just a little part in that!

I think that was it for what I wanted to write but it's getting really late and my mind is more jumbled up now than it was earlier. Angie is teething, so it's been some sleepless nights for me lately. Since she's sleeping, it would be wise for me to do the same. ;)

School Registration....already!

I'm registering my oldest for public 4K and I have to admit it's freaking me out. There are so many reasons. The obvious of course being that I can't believe my little baby will be in school! She grew so fast. Sigh. Of course, there's also the worries that I'm sure every parent has. How will she do? Will she fit in? Will she make friends? What if she's bullied? And on and on.

Added to that, I'm also a bit concerned how I'm going to handle it all. I will be driving her there and/or picking her back up four days a week. Michael could pick her up if she ends up in the afternoon section, but if she gets put in the morning section then it will all be on me. This will entail getting all three fed, dressed, ready to go, and packed in the car to drive there. Then I'm sure I will have to get all three out of the car to walk Kierra into the school. To a physically able person this is probably a bit stressful but totally doable. To me, it's doable but will probably have a huge learning curve until I figure out the logistics of it and what will work out best. Adaptation - story of my life! The baby, Angie, will have to be in the stroller since I can't carry her for long distances. Okay...doable. The carseats will have to be switched around so that Angie is on the outside providing me easier access. Okay...doable...I think. This may require Kierra to be in the middle and possible buckle at least part of her 5 point harness. Is that doable? I don't know. Dwelling on all these uncertainties is driving me crazy lately, so I have decided to just let it go for now. I'm not going to worry until late summer. Instead, I'm letting myself get excited for Kierra. I know she will love school. I can't wait for all the good that will come. We'll deal with the challenges. I'm used to them anyways. They just make me enjoy the sweeter parts of life more, right? Or at least I try to tell myself that somedays!

So, the next step is a screening for Kierra on May 3rd. We'll start there. My guess is she will do fine. We'll worry about the carseats later. ;)

The impact of disability on the children

I wonder about this a lot. Will my children grow to resent my disability? I'm sure the day will come when they will wonder why they had to have the mom with a disability. Most kids go through that stage of wondering why they have the parents that they do. My kids have my disability added to the mix. Will they hate me for having them when I'm not the "normal" parent? What's normal anyways???

My oldest daughter, Kierra, is turning four next month. The other day my husband, Michael, brought up an interesting observation. He noticed that she tends to prefer the "broken" or "not whole" toys and things. For instance, she has a Rescue Hero figurine that just won't stay standing up. It has become one of her favorites and she will use the other figurines to prop it up. It made both of us wonder if this is because of me. Then I think further and wonder if my disability will increase her empathy, or if she will just eventually resent all of the things that she can't do because her mom can't do them.

I'm reminded of last summer when we decided to take our girls to a local fair. We parked the car and started walking. I had Ali (Alessandra, our now 2.5 year old daughter) in a stroller so that I had something to push and lean on. I struggled to get as far as we had gotten, and was quickly reaching the end of my rope. We were most of the way to the park when I looked up and saw we would have to go uphill even further once inside. I just couldn't do it. Yet there was no way that I was going to ruin the fun for my daughters that were looking forward to a pony ride. So I told Michael to go ahead and take them in and I would go wait in the car. I pushed the empty stroller back to the car, fighting back tears the whole way. Once I got inside, I let myself cry. Cry in anger - that I had to miss out on seeing my daughters have fun. Cry in frustration - that I couldn't do a thing about it. Cry in guilt - that my husband had to take over the task and do it alone. And cry in loneliness - that I had to sit alone and couldn't be in on the fun. I thought a lot in that time until they came back. I wondered what the future held and whether or not my children would ever understand the love I had for them - how I risked my health to have them. Or if they would just view it as selfishness on my part and wish they didn't have to deal with my disability.

Such dark thoughts....

Then I see Kierra and Ali playing with my leg braces (AFOs) like they are the coolest things ever. Kierra asks about when I was little, and is fascinated about when I tell her that I used to be able to run and jump and play just like her. I can tell this scares her even though she can't put it into words. If it happened to me, couldn't it happen to her? Truth is, it could. No one knows. Yet I can't live every day, afraid that I'll be worse the next day or that one of my daughters will become sick or disabled. I have to enjoy the now...and remind myself to take things one step at a time. My husband and I do everything we possibly can for our children. All we can do is hope it's enough.

The First Post - About Me

It all has to start somewhere. I've been thinking of starting a blog for some time. I've been pondering it, but just not sure where to start. I also have 3 very young children (as in VERY young - all age three and under!) so my time is often limited.

Like many things in life, sometimes you just have to jump in and go for it. So here I am!

To start off, I should probably talk a little about myself so you know where I'm coming from. My name is Sarah and I'm 27 years old. I live in Wisconsin with my husband, Michael, and our three daughters: Kierra, almost 4; Alessandra (Ali), 2 and a half; and Angelina (Angie or Lina), 8 months old.

As for the part that makes me unlike many other mothers my age - I have an unknown neuromuscular condition. I've had symptoms since about age 10 or so and got slowly worse. Now I have seemed to plateau and do not seem to be getting worse as quickly. My main symptoms are muscle weakness, nerve pain, and numbness and tingling. Oh and the lovely fatigue - can't forget that! I wear leg braces (AFOs) that go up to just below my knees. This helps bring my toes up so I don't trip as easily. They do work as I don't trip very often at all anymore. Yet I still cannot walk long distances, stand for too long, go up stairs without a very sturdy railing, and I lose my balance easily. I can get injured pretty badly when I fall, so I need to try to lessen the chances of that.

There's so much more to my disability, but it is very difficult to sum it all up quickly. How do you sum up 15+ years of doctor visits, hopes and dreams, dead ends, anger, loneliness, betrayal, and eventually a certain level of acceptance? To make a long story very, very short: I have been to Mayo Clinic and they told me they do not know what I have, but it does closely resemble Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), but could also be genetic even though none of my famly members have ever shown any symptoms. How's that for a huge jumble of words that basically means: "We don't know what you have, why it's happening, what to do about it, or what will happen in the future. So good luck!" Makes me wish that there was an actual Dr. House like the TV show. Sigh...


Anyways, that's my health condition in a nutshell. I will probably explain some things more in depth in future posts, but I probably won't dwell on it overly much. While it is my condition and what I have to deal with daily, it's not the important part of my daily life. It's just a part of me. I'm a mother first. ;)