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Archive for January, 2011

I think that this will be my new mantra. I have always tried hard to find the humor in every situation. Granted some days it is a LOT easier than others and some days I just lose the ability. It’s not that I don’t struggle with emotion, deal with sadness, and on and on… it’s more that once I’m over it… I’m over it. I’m not someone to be bitter about something that happened years after it happened. Really? I have a hard enough time remembering what happened yesterday. I cannot fathom having to remember what someone did to upset me years ago. Furthermore, this carries over to nearly every aspect of my life and probably most notably my manner of parenting a special needs child.

I’ve somewhat struggled to acclimate into mom groups, as I firmly believe we *all* do, because I don’t really fit in with any general stereotype. I’m too soggy for granola moms and too crunchy for mainstream moms. Then throw in the fact that my kid gets fed through a tube, doesn’t speak yet, and is in a wheelchair? Well… let’s just say showing up to a mom group without any explanation would be about as likely as walking into church naked and not having someone ask what the heck was going on. It just doesn’t happen. Furthermore? A special needs kid? For some reason? Makes people feel like they are entitled to ask you anything that pops into their head. I went through a phase where I’d immediately hop on the defense. Then? One day a woman asked a question and for some reason it clicked that the most offensive questions asked are typically only offensive due to the fact that ignorance of the asker inhibits them from even considering the fact that their words may cause harm. Certainly you’ll run across the random jerk who is out for venom but really truly I think about 95% of people have no ill intent. Also? I’ve realized that all too often the children who stare… do so because they’ve been reprimanded for asking questions. So, instead of staring back (as I have done a time or two 😉 ) I’ve now made it a habit to get to their level and say “Did you have a question you wanted to ask?” and I’ve yet to have a child ask something that wasn’t completely benign.

All of that to say… I’ve regained a sense of levity. It never completely left. I never lost my ability to take a joke… but I’d gotten to the point where sometimes I was nervous to make them. I got to a point where I was nervous to offend. Nervous to let lose and be me! Luckily I have an ever-expanding group of people who “get” me. People who know that my heart is in the right place and that I don’t say things with the intent of hurting the feelings of others. They get the fact that really? we have two options here. We can choose to wallow in self-pity oooor we can choose to focus on the good and laugh at the difference. It’s the contrast of  focusing on the things that we are unable to do versus drawing our attention to the things that we can do… and letting the rest of it roll off our backs through humor. We’re choosing the latter at this point and for certain? We’re doing it with a group of people who know us well enough to know that we aren’t out to offend we are just out to show people that with a little bit of laughter it’s a lot easier to get to know people who at first glance aren’t “typical.”

A friend of mine made this shirt for Alyssa…

and it seriously makes me laugh every time I even think about it. Certainly… we all know she isn’t just in it for the parking. After all… as my friend’s father pointed out? She can’t even park 😉 LOL!! The thing is… I’m not out to undermine her disability or even to make it seem as if it is all worth it for the parking. The shirt for me? It symbolizes the fact that as we guide our daughter through life we will guide her to have the ability to laugh at her difference rather than cry about it. Certainly there will be days she is sad that she can’t do everything typical kiddos can do. We’ll be here to snuggle her extra on those days. On the other hand? She does things every day that typical kiddos can’t do. We’ll be here to remind her of how amazing she truly is.

It’s all a matter of showing her that life is too short to take everything seriously. Above all? People can only tear you down if you give them the ability. Yeah words can hurt but what a blessing to be able to turn it around with humor and make someone realize that the next time they think of saying something… they may want to think twice. I feel so grateful to be surrounded by family and friends who remind me so often that laughter truly is the best medicine. I know that Alyssa will walk, or roll 😉 , through life with a sense of humor about the differences she faces. After all… I think it would be pretty impossible to grow up surrounded by the people she is and not know how to laugh!! It all goes back to one of my favorite sayings: “If you can’t laugh at yourself, then who can you laugh at?” Once we learn to let go and laugh about our struggles…  they don’t feel like struggles at all! Today I feel lucky and grateful to have friends in our lives and to have the laughter that they bring with them!

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Trying Harder

When I chose the URL for the blog it was when I was working hard at trying to come out of being Alyssa’s advocate and gravitate toward enjoying my time as a wife and mother in a more “typical” stance. I think since the blog began I have done a better job at taking the time to rejoice in the kid who Alyssa is while still searching for avenues to make her life the best it can be and pushing her to take the next step in her own time. There are certainly days where I feel more like an advocate than a mother but they are fewer and farther between. Over the last few months our lives have gravitated to a place that, while not typical, is certainly far easier on all of us than life has been in the past. One thing I’ve realized over the last four years, eek…FOUR YEARS, is that as the BIG problems subside there are typically small problems that become more visible and manageable. It’s the getting over an allergic reaction to a med and realizing that the vomiting you’ve been battling has been caused by inflammation, it’s the seizures subsiding and realizing that muscle tension needs to be dealt with… really it’s just the massive amounts of stress that you don’t even realize you’re dealing with being relieved and allowing you to see something that wasn’t entirely visible before.

This time it was something I didn’t even realize needed to be looked at. This time? It took a whole lot more admitting that I didn’t have things nearly as put together as I wanted to. Really… this time? It took admitting that until I take the time to take care of myself? I’m eventually going to run out of steam to take care of the little girl who we are working so hard to provide the best life possible for. This time? It wasn’t about Alyssa. This time was about… me. We’ve all heard it said “You can’t take care of anyone else until you first take care of yourself.” The thing is that it is sometimes hard to remember… and even more challenging to actually execute.  As we go through life we get pulled in numerous directions. We get pushed to the breaking point. We have more asked of us than we ever thought we had to give. Then… when things settle, when the dust fades, and when we are left with a calm situation we truly get a chance to see what’s under it all.

To put it lightly the last six months have been a whirlwind. Between beginning chiropractic care, allergy elimination, intolerance testing, etc etc and on and on things were completely different from what they had been prior. However… like most phases of life… we’ve fallen into a new “normal” and I will say that I think it had become my most favorite “normal” to date. On the other hand feeling so confident in the little girl who I was spending my days with gave me a chance to slow down enough to realize how little confidence I had in the woman I had become. It caused me to sit and truly realize how far I’d gotten as Alyssa’s mom and at the same time  how far away I’d gotten from Jessica. It’s not as if I feel it is a bad thing to be the best mom I can be… it’s more that I realized I wasn’t being the best mom I could be… because I certainly wasn’t caring for myself. You’d think that realizing it would be the hardest part but it certainly wasn’t. The hardest part? Was saying something out loud. It was cutting through my sarcastic exterior and letting someone see me “raw.” It was coming to terms with the fact that in order to get back to the confident self-assured person I once was … I was going to have to put in the work.

I fumbled with where to begin. I didn’t say anything to anyone for a while. I took time to process. I wrote some privately. I struggled to find a way to get back to the peace that I once felt while not giving up on taking care of our little girl or my husband. Then? I took the first outward step. On 1/11/11 I walked into the chiropractor’s office but for the first time… I was there for myself. The thing is that as much as life throws challenges our way God has always had a way of sprinkling these amazing people into the challenges and making them seem so much more manageable. Dr K? Is one of those people. Even when I wasn’t going in for me… I never walked out the front door without taking something away. I danced around it for a couple of weeks but in my heart of hearts I knew it was the right place to be. It was actually harder than I’d imagined it would be but by the end of it… I felt a sense of relief that I’d not felt in a long time. It was a long talk with a good friend who just so happened to have the skills and ability to help me cope. The anxiety that I’d felt about saying something out loud and having someone think I was a horrible person? Well… that was gone. After the first adjustment… and the few that followed… I was exhausted. It was an exhaustion I don’t even really think I can explain. It was as if the emotions of months, maybe years, were coming out in minutes and completely wiping my energy level. However, it was somehow a good? exhaustion. I felt like my body was working toward healing.

Healing? It seems silly because it isn’t as if I had anything visible that needed to be healed. I was functioning… getting through the days… and living life. On this inside? Things were just not where they needed to be. Luckily that first step was the most challenging. Dr. K did an amazing job of not overwhelming me with a huge game plan but instead establishing baby steps. At first making appointments for myself was a struggle, but now I sincerely look forward to “my” time! Then… this week? Something amazing happened. It was almost as if… and yes this will be cheesy… my soul woke up. I’ve been trying to find the words to explain it but that’s as close as I can get. There have been times in the past where I focus on my body image… I want the outside to be in “good shape” and then the inside will follow. This time? I feel like the inside is getting knocked into shape and dragging the outside along with it. I’ve been doing breathing exercises upon waking and prior to sleeping and getting at least an hour of exercise in each day. For the first time in my life I don’t feel like exercise is a chore. This morning I couldn’t wait to get outside to walk. Then when Alyssa was restless after school instead of getting frustrated I simply took another walk. This evening? Same thing! We walked to the park, Neil joined us, and the three of us went on a walk together. Granted the weather was exceptional today, but the thing is… I WANTED to be out in it.

I feel like I’m taking baby steps for sure but they are all in the right direction. The amazing side effect of taking care of myself? Not only am *I* happier but so is the rest of my family. Alyssa has shared my calm this week. It will never cease to amaze me how much Alyssa’s moods are dependent upon my own… or how hard that is for me to see when I’m having a difficult day. Don’t get me wrong. She still has emotional moments… as I’m certain I will too. I’m not expecting to never have a rough day again… I’m just expecting them to be fewer and farther between. The thing is… I’m trying harder. I’m starting every day knowing that I’m doing the best for my family by doing the best for myself. I don’t think there’s a feeling better than that one! It gives me the opportunity to savor moments when my daughter’s entire body is filled with joy and allow that joy to seep into me as well.

 

Not that it would be possible to NOT smile when that’s the giggly happy lady that you start your day with. It’s just… I don’t think that smile would have been there this morning if I didn’t walk through that office door a few weeks ago. I’m so grateful for friends, both professional and not, who love me for who I am, tell it like it is, and at the end of the day? help me find the strength to take the next baby step. Here’s hoping the path we are walking continues to be filled with more good days than bad! I think that’s really all I could ask for in this life! I’m going to work hard on trying harder to find the good in every.single.day! ❤

 

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I think we’ve all said it at some point. “There just are not enough hours in the day to get it all done.” Yet, at the same time I’m pretty sure even if there were 36 hours in a day I’d still procrastinate things to the point where there wasn’t enough time to get it all done. I have blogger’s guilt though. Tsk Tsk! It never really occurs to me how far behind I am until someone asks for a link to my blog. Yikes! LOL! I’m going to try to work on getting back in the rhythm of updating. The time that lays blank on the blog most certainly was not left blank in real life. We made it through the holidays unscathed and with family bonds still intact. That’s gotta say something about how much we love the people that surround us…right?

December was a bit of a balancing act. It was a month of eating for Alyssa. She has officially gone from the child who screamed at the sight of food to the child who will drop everything to eat. It’s kind of amazing really. Although sometimes I get frustrated at the fact she wants to tug at my arm because I’m not moving fast enough. The reality is deep in my brain I know that is her first step toward self feeding. She still gets a tubefeed ever so often but it is typically due to the fact we’ve had a rough day or a lot of stuff going on.  For the most part she is taking all her food by mouth and liquids via g-tube. As excited as we are… I think the grandmas are even more so. Nothing like getting to feel like you are back in a position to comfortably nourish your grandbaby.

2011 has been good to us so far. We’ve all managed to be in good overall health and I’m trying to make this the year that I spend a bit more time taking care of me. Alyssa has been benefiting from my need for more time outdoors as well. She tall enough this year that she can properly reach the pedals on her AmTryke. The first time on it and she was already rocking it back and forth. I think by the end of the summer I’ll be chasing her down the road. HA!

Hard to believe Alyssa’s birthday is just around the corner. She’s come so very far this year. Overcome so much! I have a few battles we are going to have to fight this year (that’ll be another blog post) but I have a feeling this year is going to be an amazing one for her. I feel like the trifecta of intolerance testing/chiropractic/modern medicine has really finally all come together to give her the opportunity to be the strongest and most determined kiddo she can possibly be.

We’ve been working on doing more things as a family and the latest was going to the mini grand prix. This kid? Is a daredevil! LOL! She loved going as fast as the car would go, flying on the airplanes, and zooming on the rollercoaster. We were worried she’d have a hard time on the rollercoaster but it wound up being daddy who had the hardest time! HA! Ah well we had a great night nonetheless!

 

See the look of fierce determination? haha. She had to help me steer the whole time…even when we were stationary. It’s definitely something we’ll do again! Of course… we’ll do it again on a week night! Much nicer than being lost in a sea of kids.

I hope 2011 is off to a happy start for all of our friends. My goal is to make it the best year we’ve had so far! I think with the people we’ve got surrounding us? That goal is HIGHLY attainable! 🙂

 

 

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