Good luck has come my way. I hate to jinx things, but I wonder how long it will last. For now, I need to just enjoy it.
I got the job! I will officially be working from home starting July 12th. I don't have words to describe how ecstatic I am! It's been so hard the last year. I've felt like such a failure being unable to help provide financially for my family.
The part that gives me pause and makes me worry about my luck changing again is that it is a temporary position until September or so. The silver lining is that if my ratings are good, I could be offered year-round work, or at the very least could start up again in January when their season picks up again. If nothing else, it will provide me with more recent work experience that could help me in the job hunt.
This couldn't have come at a better time. I've been slipping into a darker place recently (one reason I haven't blogged in awhile!) and really needed things to change. Now I just have to pray that things continue to improve!
I'm most happy that we can be a bit financially secure right now, and am hoping I keep the job so that continues. I feel horrible that we can't provide the things that I would like to provide for our children.
Speaking of the children, Kierra said something to my husband the other day that totally made me stop and marvel at her. My husband and the kids were waiting in the car for me. Kierra tells him that she wants to be a doctor when she grows up. She has said this a lot in the past. So he asked her why. In the past she's said because she wants to "feel people better." Sounds goofy, but the sentiment is beautiful. This time she says, "So I can fix Mommy so that she can run with me." I'm tearing up just typing that out even! She's always had something special to her. Not to push my other kids to the side since I know they have their own special gifts as well; but she's always had this wise-beyond-her-years understanding of people and genuine empathy. I've always felt that she was a healer, like me. Of course I won't push her to do that with her life if she doesn't choose it, but I will support what she wants to do. And I really would not be surprised if she wants to become a doctor.
This whole discussion reminds me of something I considered doing with her. This has pushed me further to the side of wanting to do it. I found Reiki healing classes for kids, but she has to be a bit older yet. I'm sure many will think I'm crazy for believing in that "made-up stuff," but I have seen energy healing firsthand and have been told that I am an energy healer if I ever would open myself up to it. I want classes for myself as well; but I do think Kierra has some amazing gifts as well.
The Winds are Changing
Busy Summer
I've been meaning to get on here, but it's always one thing or another keeping me busy. Summer tends to be like that. ;)
This post will have to be a bit brief since it's late and I want to get a shower in before bed yet as well. That's one thing I miss from before kids - being able to shower whenever I wanted!
I might have a job offer tomorrow. I'm supposed to be getting a call letting me know if I got it or not. It's a work at home position! The bad news is it's seasonal and ends in September. The silver lining is that if I am a good worker, they might extend me a long term, year-round position. I'm hoping tomorrow brings good news!
The baby of the family will be walking soon, I think. Bittersweet...sigh. She's 10 1/2 months and today she pulled herself to standing and then let go and stood for a good 15 seconds before plopping back down.
Her sisters are doing well. I have more to say on them, but I really must shower! I will come back tomorrow with the job news (hopefully good!) and write more about the kids then.
Free Book Giveaway Winner!
The winner, randomly chosen, for the free copy of The Heart Mender by Andy Andrews is Sarah! I will contact you, Sarah, through email so that I can mail you your free copy! :)
If anyone loves to read, I highly recommend checking out Book Sneeze. They were the suppliers of these books. In return for me providing reviews, they send me free books and sometimes a book to give away as well. I just received my second book, Mystically Wired by Ken Wilson, from them. I will review it here when I am finished reading it. No book giveaway this time, but I am very excited to get to reading it so I can share the review.
Free Bowling for the Kids!
Great idea to help with those bored kids this summer! Free bowling! Go to this site:
You can search for participating centers at the website. If there is one near where you live, you can sign up and put in any children under 18. Each week, you will receive coupons for free bowling for the children. The coupons are good for the bowling only - shoe rental is a separate cost. Some centers will let you buy season shoe rental passes for a reasonable price. My local center charges $2.00 per rental, or $20.00 for a season pass. If we would go 10 times, the pass paid for itself and any visit after that would be "free" shoe rental! They also offer a family season pass for $24.95. This pass is good for the adults in the family and will allow you to bowl whenever your kids use their coupons. For families who love to bowl, this is a great deal! For everyone else that just would like something to do with the kids here and there, the free bowling coupons are still a great deal too! That's what we did, and can't wait to use them!
Be sure to check your local centers' available bowling times and any other rules they may have. My local center started the free bowling program in April already, and it goes until September.
Also, you can add Kids Bowl Free on Facebook for additional giveaways: Kids Bowl Free.
Finally, for anyone local, Lighthouse in West Bend participates in this program. I also just received their summer schedule from them. It looks like they have some fun things planned for the kids for this summer. I was most interested in their Thursday preschool program for kids age 3-6. For $7 a week, the kids can bowl, make a craft, and do other activities. We may have to check that out as well! You can find the Lighthouse Entertainment Center's website here.
The Challenging Month of May
May has been quite the month. It always seems to be. There's so many good things that happen (Kierra's birthday being one), but then there's also often trials we encounter, and of course the reminder of pains that we endured in the past.
The irony that this all occurs in the month of May does not escape me. Spring is supposed to be the time of new beginnings, right? Yet the month seems to always be a time of new beginnings, sometimes endings, and then reflections on the past. I'm often left in a strange mood like I am today. It's hard to put it fully in words. I'm sort of melancholy, but also there is hope and excitement underlying somewhere in there. I tend to withdraw a bit. My communication with other people tends to become more superficial if I even do communicate with anyone outside the immediate family. This year, I was trying to change that with this blog. I wanted to try to get those emotions out that are often very difficult for me to verbally express.
I don't even know if I'm making much sense. I feel like I'm rambling. I apologize for that! ;)
I'm left thinking of all those big questions that we often don't really want to think about. I even worry I have become a bit death-obsessed lately. It happened the first time when my dad died. I was always worried if someone took longer coming home than usual. I've gotten a lot better over the years, but I feel those fears creeping up on me again. I worry about something happening to me. I don't feel ready to go anytime soon, but yet I worry that it might happen. And then I worry what that might do to my family. My fears next center on my husband. What if something happened to him? I go through every member of my family, until I realize how morbid my thoughts are and force myself to do something else to get my mind off of it.
Soon we will be into summer and all the events that come with it. I'm sure I'll get busy and most of these morbid thoughts will fade away again. Or maybe not? This year seems to be a big one of change. I don't know yet if the overall change will be for the better or for the worse yet, though. Guess I'll just have to try to hang on to every shred of optimism that I have left.
I wanted to write more, and am hoping what I wrote even makes sense, but I have to go take care of the kids now. I guess I will leave this here for now, and concentrate on the treasures in my life for now. :)
Book Giveaway! (and Review)
I'm excited to offer my first giveaway! Yay! I was given two free copies of the book The Heart Mender by Andy Andrews. One copy was for me to read and review for all of you, and the other copy was to give away to one of you! First, let me review the book.
I wasn’t sure if I would like The Heart Mender by Andy Andrews. While I do like to read some historical books and I also like to read love stories, I haven’t read many stories set during the WWII period. I was pleasantly surprised with this book.
The book is part historical account, part mystery/thriller, and part love story. I tend to figure out plots and twists in them fairly quickly and easily, but this book was actually able to throw a few things in there that surprised me.
The characters were well-developed and came to life. I felt like I really knew them by the end of the book, and loved to find out that the story is based on a true story. I came to care for the main characters of Josef and Helen, and loved the way things ended for them. Josef was a German man that was aboard a U-Boat in WWII when he washed ashore in the Gulf of Mexico. Helen, a widow who lost her husband in the war, found him and nursed him back to health. She had to deal with her intense pain and anger in losing her husband to the Nazis, and found that Josef is not the hated enemy she first believed him to be.
The story’s inspirational message is a great one to be admired. It is a story of forgiveness and letting go of anger before it consumes you. Love can often times be found in the most unlikely of places, as this story shows.
The book did start out a bit on the slow side and made me think I wouldn’t like it after all, but when I got into the story it became intense enough that I didn’t want to put it down.
If you like love stories, inspirational stories, thrillers, mysteries, or historical books; then this is the book for you!
Now onto the fun stuff. As I said, I'm giving away a new copy of The Heart Mender for free! If you would like to enter, here's how to get some entries:
1) Post a comment to this post, including your email address. (One entry)
2) Follow this blog, then post in the comments section of this post that you follow the blog. (One entry)
3) Refer friends and make sure they post in the comments section that you referred them. You will receive one entry for every friend referred.
4) Subscribe to this blog's feed and again, post a comment that you did this.
5) Post about this giveaway on your blog or social media site. Post a comment telling me you did this. (One entry)
I will take entries until May 28th. That gives everyone a little over two weeks to get those entries in! On May 28th I will use random.org to randomly choose the winner. The winner will be notified through email and I will ship the free book to the winner once I receive address information.
Fairly easy, right? So, please enter and pass the word to friends!
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!
I might be scarce for a bit...
My laptop will hopefully be fixed, so I don't have as much easy access to the internet now. I would often go on the laptop late at night in bed, but without it I only have the desktop. It's hard to find time to sit down and get on it during the day.
I'm hoping the laptop doesn't cost too much to be fixed and can be fixed since I will be taking online classes starting in August. I'm going to get a certificate that will prepare me for AODA licensure. Hopefully that will help with the job search!
Really busy around here, the whole month really. This weekend we have Mother's Day and Kierra's birthday party. Then we don't have a weekend totally free until June I think!
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. ;)
No news is good news
I wish that went for job hunting too! I haven't heard a thing about the position I interviewed for on Monday. I did send a thank you note and will call if I haven't received a call by Monday. I just was really hoping to have heard something by now. The interview went great and I felt fairly confident when leaving. Of course they could have applicants better qualified. I'm still keeping my fingers crossed!
Kierra and Ali went to class yesterday morning for the first time. My mom took them to classes at the Y. I am so thankful that my mom is able to help with things like that. I think that really helps the kids not feel so much like I'm holding them back. What I can't do, Michael or another family member can. The classes went well my mom said. Ali did have her moments of being uncooperative, and that's one of the reasons that I wanted her to go to class. I want her to socialize a bit and get used to following classroom rules. Of course, to also get used to not being with her big sis. Those two are attached at the hip, but Kierra will be in 4K this fall and I thought these classes may ease that transition a bit.
Tomorrow, Kierra and Ali are going to Wisconsin Dells and staying in a hotel with an indoor waterpark. Again, my parents are taking them. Running around in a waterpark is another thing I can't do. The girls enjoy their grandparent time, though. So I'm very glad and thankful they get opportunities like this.
So, it will be Michael, Baby Lina, and me for most of the weekend. No big plans - just relaxing and getting household chores done. We have enough busy weekends in May, so I'll take the downtime!
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.
Exciting news for me!
I wanted to post this yesterday, but as I said in my earlier post we've been sick here. We're both starting to be able to function a bit now, so I thought I would post now.
I sent in a resume for a part time job a few weeks ago. I got a call back! They set up an interview for Monday. I am very excited. It's working with youth. I've been waiting for a position like this to open up for awhile. Would appreciate good thoughts, prayers, good luck vibes, whatever you call it that the interview goes well and that this position will work for me! In my situation, it's VERY difficult to find positions that can work.
I have more thoughts on that matter, but I think I need to take my mind off of it for a bit. I tend to get myself too worked up over things if I let myself.
Other than my exciting news and us being sick, there hasn't been a whole lot going on around here. Which is good...it's nice to have a bit of down time once in awhile. More time to enjoy the children, and they have been cute lately. Sometimes I look at them and feel so lucky and wonder how I could be so lucky in this part of my life. Of course there are other times I wonder how three cute kids can be SO bad, but fortunately those times are short-lived! ;)
Oh, and something that should be duly noted - the floor by our laundry gets slick right after cleaning. This combined with socks equals a painful fall. I have bruises all over. Then I got sick, so I couldn't tell if the aches and pains were from the fall or illness. To top it all, Kierra says, "You slipped on the clean floor and not on my toys, Mommy?" Great...now she probably thinks a clean house is more dangerous and she will work harder at her path of destruction!
Being sick is no fun
I have a lot of things I want to say, but Michael and I are battling some kind of stomach bug here so I just don't have the energy. I just wanted to post that I have not forgotten about this blog already, and hope to make a "real" post either later tonight or tomorrow.
House Party
I wanted to post about this since I've been chosen for two parties so far and it's been a blast!
If you go to House Party, you can see the various house parties that you can apply for. Basically, companies will give you FREE products if you're chosen and then you hold a house party and share the products with friends and family. I've been chosen for a Clairol party, and also for a DiGiornio party. Both boxes of goodies were awesome - free hair color, free samples of bath and beauty products, free pizza, an apron, and great coupons just to name some of the great offers. It was really fun, and I recommend it to anyone who would love free products and loves having parties.
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.
Free Family Night - Gardening
For anyone local, here's a free event I just saw and wanted to post about for anyone interested. It's at the Kettle Moraine YMCA in West Bend. From their website (kmymca.org):
Spring Fling - Free Friday Night Family Night
Friday, April 23 from 6:00pm - 8:00pm
Free community event! Spring into the Y for our family night filled with tips and projects on gardening for kids and adults. Kids plant your first garden of the year. Moms and Dads learn about container water gardening.
Sounds cool, huh? I'm going to try convincing my dear husband to go. ;) I really want to have a garden this year, so it's perfect timing. I have such fond memories of my parents having a garden growing up. I also want my children to learn those invaluable lessons. I don't want them to be like the children on that TV show Jamie Oliver's Food Revolution that didn't know a thing about fresh fruits and veggies!
We don't have a Y membership right now, although we may get one in the future. So I'm not overly familiar with our local one so can't give much of a review. My mom did take my older daughters to another free event they had and she told me that the kids did like it. My guess is they will love this as well. Neither one is afraid of getting dirty and Kierra loves worms!
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. ;)
