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Let her eat CAKE!!

So, as many of you know Alyssa is potato and soy intolerant. She also cannot have fruit and sugar within 8 hours of each other. This? Means that dessert? Is nearly impossible… delicious dessert? Even farther from impossible. Unless… you have an amazing diva auntie (read miss Julie AKA Birthfree) who loves you enough to send home ground flour to your mommy… and then? when she finds out the day before the cupcakes are to be made that the cocoa isn’t available locally? Well… that auntie uses her lunch break to run safe cocoa to the PO and overnight it… seriously. Overnight cocoa? That’s love right there.

Here’s the kicker… shortening has citric acid in it… so she can’t have that with sugar… but heck! A girl needs buttercream icing! So, I scoured and found an amazing recipe that contained only butter, sugar, flour, and milk! WIN!! Place it atop cupcakes made with all safe ingredients? And… tomorrow? My daughter who has about 90809 things she cannot eat? Gets to eat CUPCAKES with her class!!! The best part?! They are good enough that even those of us who eat “junk” like them!! So she’ll get to eat the SAME snack as the rest of her class!! For the first time ALL YEAR!! I’m so crazy excited for her for this little bit of “typical” on her Birthday… and I’m so crazy grateful for Julie for loving her enough to get me the tools to make it happen :-* YAYAYAYA!!!

AnnnnD? They are even PRETTY!!!!

YAYAYAYAY!!! Yes… I am *THAT* excited about CUPCAKES!!! YAY!!!

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Well, in the grand scheme of things I feel that her IEP was handled amazingly well. One thing I haven’t really touched on is how outlandish her original IEP goals were. They were set by Child Find… without our input… after spending a combined total of 3 hours with my daughter. I still remember making eye contact and then looking at Neil in a way that said “Is she kidding?!” after each goal was read. We told her at the time that they seemed far-fetched but alas they remained. A few highlights were: 1)Alyssa will get her jacket on and off without assistance. 2)Alyssa will drink from an open cup without assitance. 3)Alyssa will identify 50 nouns using 2 adjectives. I mean, I’m not a pessimist. I don’t think she will NEVER do any of these things. However? I think expecting her to conquer all of that in a year was simply setting her up for failure.

Fast-forward to this year. I walked into that room expecting it to be her teacher & therapists as well as the general education teacher. Instead? Her teacher said “I think this is the most people I’ve ever had at an IEP!” LOL! We had the teacher, the aide, the gen ed teacher, the nurse, the nurse that was going to be taking over for her, the OT, the ST, the PT, the director who oversees the PT/OT in the district, the guy from transportation, the vice principal, and myself. It was a full house for certain.

As we set up to begin the meeting I felt the need to preface. Since I’d gone in thinking that everyone outside of transportation would know my daughter I wanted to let them know why I elected for her to not be there. I just briefly told them that although we want to work hard to push Alyssa to the grandest of her abilities that we didn’t deem it necessary for her to hear about all she wasn’t doing. Everyone understood and I felt more at peace to be able to talk in a manner that I wouldn’t have if Alyssa was in the room.

Overall? Everything went swimmingly! The goals they set seemed realistic yet exciting! Everyone was very positive and excited for what the remainder of the year would bring. We are really going to work on incorporating feeding into her daily routine at school which I think she will really enjoy at this point. Speech is working closely with her with the iPad and I got some good information on some apps so that we can utilize the same tools at home as at school.

As we rounded the table and got to transportation he asked if I had any issues. Well, about 2 weeks ago Alyssa had arrived at school covered in puke and no one on the bus saw it happen. Awesome. I had since talked to both of the aides, her teacher called transportation, and I felt like things had been resolved. I said quite simply “Nope. I think we’re good now that the bus aides have the understanding that Alyssa is the reason the are there.” We all talked for a few minutes… and then? It happened. The transportation guy said something to the effect of “While Alyssa is the reason the aide was put on the bus… they are also responsible for the rest of the kids on the bus.” I felt my WHOLE body get warm. I wanted to fly over the table. Every other child on Alyssa’s bus rode the bus without an aide from August until December. You know why? Oh yes…because they don’t qualify for an aide. We had to fight tooth and nail. Typically? I’m pretty laid back. However, transportation makes my mama bear come out like nothing else. These people have my child when I cannot see her. I took a deep breath and replied: “I’m trying to think of a calm way to reply to that statement, but I’m coming to terms with the fact I’m just going to have to be overly blunt with you for a moment. I’m going to go ahead and call BS on that.” His eyes grew to the size of quarters. LOL. I could tell he didn’t know what to say… so I continued: ” There is not a single other student on that bus who requires an aide. Surely I don’t want them neglected if their is an issue. However, I was told REPEATEDLY by several people from transportation that unless there was extenuating circumstances there was no reason for an aide. That the bus drivers are trained to handle non-aide situations. That unless my child was proven medically fragile she didn’t get an aide. Now? The aide is for everyone?” You could feel the air suck out of the room. He said “Well, sometimes although individual kids don’t qualify for an aide they do as a group due to group needs.” Yeah… I *almost* lost it. That was the point my hands started shaking. I looked at the teacher and said “Please… correct me if I’m wrong. However, the other kids have the same driver they’ve had all year? correct? The driver that each of their parents put them on the bus with without an aide for months?!” She nodded. He began to speak. I cut him off. I said “OK. The fact of the matter is? You, as a group at transportation, need to pick one way or the other. The reason I’m calling BS? Is due to the fact that the last IEP we had when the guy found out that there was an aide in the afternoon? He removed the aide THAT DAY before school even had a chance to let out. Obviously these kids don’t qualify as a group.” I was livid. I don’t like having to get to that point. I could feel myself start to shake. At that point the supervisor for the therapists requested that we move forth. It was good. I’d said my peace. He wasn’t in a position to change anything… and really? I did it without crying! WHEE!!

So, the meeting drew to a close with a steady plan in mind. I think the year to follow will be a great one for her. She’s got goals laid out in front of her and she’s got the drive to make it!! I’m so proud of our little lady!

So… one thing you’ll notice about this blog? It focuses on what we ARE doing not what we ARE NOT doing. I figure the list is shorter. After all it isn’t as if we are jet setting across the atlantic, taking on deep-sea diving, mastering chess, etc etc. There are about a billion things going on all over the world that we are not doing. It’s way more streamlined to make a list of the things we are doing… and honestly it’s far more inspiring and far less depressing. LOL!

I think that the people in Alyssa’s life do a darn good job in rejoicing in all of her triumphs, remembering how far she’s come, and not letting the things she can’t do slow down the celebration of the things she can. However, the reality is that celebrating the amazing leaps and bounds she makes annually, monthly, and even daily? Well… those just don’t get her the services she needs at school. Intro… “whatsheisntitis”… also known as the syndrome that requires us to pick apart what she isn’t, to compare her to the standard kid, and really? to paint the bleakest picture we can. Why? Well, to be blunt… the worse off you are… the better your services are. It seems a bit crazy but as is standard… reality is a bit crazy.

Luckily? These reviews are only biannual. Sadly? They don’t get any easier.  Why aren’t they easier? Well most notably due to the fact that we aren’t lying on this paperwork. We aren’t making stuff up. This? is reality. It’s just… well to us on a normal day? It isn’t so very important how close Alyssa is to acting like a typical 4-year old. What is so very important to us is how close Alyssa is to being her very best. The problem comes in when the IEP rolls around… that isn’t what is in writing. What is written is how she’s measuring compared to the textbook 4-year old. It’s pretty obvious if you’ve met Alyssa that she is not a typical textbook 4-year old.

Now, don’t get me wrong. I’m not in denial every day outside of IEP day. I know that a typical kid Alyssa’s age is running, jumping, talking, etc etc. I don’t live in a bubble or under a rock (although my knowledge of pop culture often disputes that fact 😉 ). I know what a typical kid her age is capable of. The thing is? I also know how very little that the world thought this little girl was capable of. Yes, there was the mourning of the little girl who I thought I was going to have… but the reality? This little girl? Well, she’s cause for celebration way more often than the little girl I thought I was going to raise. It’s a matter of… we knew very early on that we weren’t going to be raising a typical kid, that she wasn’t going to race through milestones at lightening speed, and that she’d have to WANT to work to get over the hurdles in her life. From the time Alyssa was diagnosed Neil and I looked at that as a blessing. I know, again with the crazy 😉 , but what a blessing to be given… to never take one tiny milestone for granted. What we didn’t know early on? Was what this little lady was capable of, how huge of an impact she’d have on the world around her, and how MUCH determination she would be filled with. That? was the surprise of it all. That? is the true blessing of it all! She may not fly through milestones… she may set her own pace… she may do things in her own time… but dangit… she does what she WANTS and she is filled with joy doing it!!

It’s not easy…dangit sometimes it is just plain HARD… but the reality is? God doesn’t set us out on this tough path alone. As much as I know all that I’ve typed … as much as I know what’s on that paperwork doesn’t for a millisecond change the little girl it’s written about… it doesn’t make it any easier to swallow having to look at the “whatsheisntitis.” As I read through the draft of her IEP today I felt the tears fall. No matter how much you are aware of all the legalities it doesn’t stop the mama bear from brewing and making you want to go: “GIVE HER TIME!!” I cried for a bit, reached for my phone and sent a text to a dear friend… with nothing more than “I hate IEPs!”  You know what’s forever amazing to me? How God knows what I need to hear and somehow? who I need to hear it from. After a few texts my soul started to calm. Then Neil got home and in his amazing way listened, spoke gently, reassured me that it was OK to feel what I was feeling, and hugged me until the tears were all gone. As I calmed I got a text from my friend that said “We all need to hear the truth now and again when we feel the walls taller than our faith.” That? Right there? Will stay with me forever. Such an amazing sentiment and so very very true.

The truth about this situation? As much as tomorrow is not going to be fun, exciting, or positive… it will lead to fun, exciting, and positive days. It will wrap our amazing little girl in all of the care that she can possibly have each day. We have decided that she’s not going to the IEP. That will be a first for us. Everyone that is going has met her and interacted with her for a while so we don’t feel like she will be a “number” to them. That was why it was vital to us she go to the first couple. However, we know she’s starting to understand more and we don’t for one minute want her to feel as if we are focused on what she’s not doing. So, tomorrow I’ll go… I’ll deal with a good dose of “whatsheisntitis” and then? I’ll come home to my family and we will return to our regularly scheduled programming. Why? Well… because focusing on what she isn’t doesn’t change who she is … it just takes time away from celebrating it!

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!

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! ❤

 

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! 🙂

 

 

Usually throughout the day I kind of “rough draft” a blog post in my head. Actually, if I’m being honest? There are far more blog posts stuck in rough draft mode in my head than I have ever actually found the time to write. However, the typical thing that first pops into my head is a title. I don’t know why but after I start to formulate our day that is what rises to the top…oooh and then it is ACTUALLY at the top. Ha.

Today? All I keep thinking is “No.Frickin.Way.” …but I didn’t feel that was an appropriate title. I didn’t feel that it gave the appropriate amount of weight to what today encompassed. Not to mention? It doesn’t envelop the … gosh. I don’t even know that I have a word to express the level of combined excitement/joy/hope/pride/etc that I hold in my heart at this very moment. I just keep thinking “No.Frickin.Way.”

As I started to formulate this post my mind went back to three months and eight days ago. I sat across the desk from Dr. Tish and received the news that our daughter was potato and soy intolerant. I got that news just after I had  to ask for a towel to clean up the vomit from my child’s shirt… just after I had seen a look of compassion, concern, and worry rush over a near stranger’s face at the sight of my child choking and fighting to catch her breath. Three short months ago I packed extra blankets, waterproof pads, and extra changes of clothes. Our days revolved around trying to get her meds in her at just the right moment so that she would keep them down and hopefully tolerate enough of a feed to where we weren’t concerned for the day about her hydration.

What amazes me the most looking back? Is how much I didn’t realize the strain that was present. For us? It was our “normal.” It was all Alyssa had known. I woke to the sound of her gagging daily and just figured it was how things were. We stripped sheets daily and had just factored it into the daily routine. We planned when to feed her, tried to get a quantity that would stay in for car rides, and overall? without even REALLY realizing it? We were in constant “wait” for the next time she’d vomit. . . and we didn’t even realize it. It was just how life was…. until it wasn’t that way any more.

September is a blur. There was a lot of the “worse before better” that came with trying to dial in her diet. The vomiting increased. It was harder to handle because it wasn’t laced with the smell of vanilla. There were calls to Windrose for advice. There were moments of worry. There was a time when we wiped her intake down to just coconut water because she wouldn’t tolerate any thing else. There were moments when Neil and I lost it together after she was in bed. There were days when I wanted to give up. When it felt TOO HARD. When we’d go to the chiropractor… do the NAET (http://www.naet.com/) testing and find out we had to cut out something else for a day… and I’d want to throw in the towel. Instead? We stuck it out. We muscled through. Alyssa once again showed us that if we are willing to put in effort…she’d not only match it but she’d surpass it as well.

September faded into October and October into November. It was a trying few months in many ways. November is for some reason always an emotional struggle for me. I don’t quite know why… but it seems to happen that way. However, over the course of those months something amazing happened…well somethingS amazing. Alyssa is not the same weak little girl who sat nearly lethargic as I got the news that day at Windrose. Alyssa is not the same little girl who had to be slowly and gently fed so as to keep her from vomiting. Alyssa hasn’t woken up gagging…in…well… I don’t even remember the last day. If she spits up now? It is just a tiny amount.

At any rate… as you can tell… all of this stuff has been gradually changing even if rapidly. So … why am I so speechless about today? Why am I without a title for the events of today? Well… it is a day that I didn’t think I would see for a *very* long time. It is a day that I honestly didn’t know if we would ever experience. It is a day that I for certain would have never placed in 2010. It is a day that once again showed me what a determined and strong little girl we get to spend our days with. What happened today?

Well… Alyssa did not receive any food via her g-tube today!! Not.one.bite. She ate 100% of her food calories off of a spoon. What’s more? SHE ENJOYED IT! She lights up when you say “Do you want to eat?!” and she actually stays interested until the bowl is empty! Of course she still got her supplements, medicine, and liquid via her g-tube. However, she consumed 30 fl oz of purred food off of a spoon today. Now… say it with me. “No.Frickin.Way!!!!” 😀 I just cannot even begin to put to words the emotion that it fills me with. Maybe after a couple of days I will be able to, but probably not. I am *so* proud of her. So very VERY proud. Also? I’m so EXCITED for her. I’m simply THRILLED for her that for the first time in her life food is not a source of pain or discomfort. I’m elated for her that she’s gone a long enough time without food causing her pain that she can actually enjoy meal time. Finally? I’m a bit…ok a LOT… excited for Neil and myself. It’s just…well…EXCITING!!! I’m hoping that today is just the first of many to follow!!! ❤