I figure bullet points are probably an acceptable practice to get everything caught up to date from Feb.

• After much debate and back and forth we decided to remove Alyssa from her school last year. Her teacher was just not a good fit. I look forward to writting a letter to the school district detailing her extreme lack of compassion considering her position. However, I want to wait until I’ve met her new teacher so as not to terrify her into thinking that I’m not a nice lady.
• In late April we took an amazing family vacation with my inlaws to FL. We were blessed enough to not only see much of our extended family but also hit up Disney World. Considering Alyssa’s undying love of Micky? That was probably one of the happiest highlights of my entire life.
• We moved in May back to the other side of the valley for a few reasons not the least of which was to be close to the inlaws. The main driving force behind that? Me returning to work!! That’s right. Miss Alyssa spends a few mornings a week with Grandma Donna and one with Grandma Donna and Grandpa Neil. The super awesome? I get to work for an amazing woman who does nothing but add good to the lives of my entire family.
• I’m working. Yes I know I covered this in the last bullet. However, after four years of not? I figured it could get it’s own. I’m working as the assistant at our chiropractor’s office. If I had sat and created a perfect job for myself at this juncture of my life… I’d not have done this great of a job. It’s a job that I wake up four days a week genuinely excited to leave for. Coupled with the fact that I know my child is in caring arms when I’m gone and that it has gotten Neil in the habit of once a week adjustments? Well… it just truly makes my heart happy!
• Alyssa had an amazing experience at summer school. The staff was kind, caring, and everything I’d wished her teacher last year would have been. Sadly not everyone can be awesome but really all things considered we are surrounded by a whole lot of awesome each day and they were a breath of fresh air after a rough ending last year.
• Our little princess is babbling more than ever. She’s still our happy lady but now she is just so much more verbally expressive. She says “Hi, Dad.” with a distinct clarity. Alyssa loves that man in a way that makes my heart swell.
• We’ve settled into our new digs and adjusted to being a single family home again. We’ve found a rhythm quickly with my return to work thanks not only to us but in a large part to our parents being wonderful people.
• I’m happy. Can you tell? I mean like genuine, deep to the core of my being, don’t have to fake a smile on my face… HAPPY!

OK. Bullets over. Essentially? Life.IS.Good!!! I’d be lying if I said life had been easy from February 2007 to present, but now it is just… exactly where it needs to be. My daughter has an amazing, supportive, and just inspiring support system. We’ve been blessed with people in our lives who make the hard times seem manageable and the good times seem great… so imagine how great the GREAT times feel. We are just.so.lucky. I’m just at a stage now where I’m staying focused on drawing my inspiration from the happy little lady we’re blessed enough to raise. She lives every day to the fullest, enjoys every moment possible, and finds joy in every possible corner it lies. The good days are definitely outweighing the bad and I don’t think I could ask for more than that. I’m going to work on at least weekly updating to help curb the blogger guilt. After all, at this point? I want to remember as much of this truly happy time as possible. I know it’ll continue for years to come!  What a happy little family unit we have built

Happy Little Lady and Her New Frames

It is a different world we live in these days. Distance seems to shrink via the internet. People develop long lasting friendships that tend to live for years beyond moving and relocating due to the ability to keep in contact easily and without much effort. Amidst those relationships there are some that come and go… but there’s others that wind up lasting longer than you could have expected. When I started researching cloth diapers I stumbled upon a board filled with some of the most amazing women I’ve ever met (and yes I’ve actually met many of them in person so they aren’t just “internet friends” lol!). They welcomed me into their little circle even though I wasn’t even yet pregnant. They walked me through pregnancy. They were there when Alyssa was born. They were there when our world crashed to help us pick up the pieces. They’ve been there every step of the way since before the journey ever began. These women? Are like our huge extended family. They are our cheerleaders for certain.

The thing with a cheer squad? There’s always a head cheerleader. You know. The one who started it all? The one who brings it together? That woman? Her name is Berritt and she is this amazing soul. She was the one brazen enough to begin the board we all frequent and invite people to leave a not so friendly board to join. She’s one of those people who speaks her mind, tells it like it is, and somehow manages to do so in a way that she maintains a large circle of friends. Our online personas are quite different but there are few people who make me laugh the way she does in person. She defines “REAL.” The thing with her? She doesn’t even realize how amazing she is. It’s just the person Berritt is. She’s generous, kind, funny, and just overall somoene that everyone should have in their lives. When she gets passionate about something? We all have to hear about it and ya know? we all wind up learning something from it.

It wasn’t too long ago Berritt started pimping the bone marrow registry like it was going out of style. A simple thing to join. Something that could save a life. Something that would give each of us a chance to help someone who needed it. I remember thinking “Gosh but it is such a painful procedure to go through for a stranger, but how would I feel if it was my own family that needed it??” I want to think I’d do it for a stranger. I guess I won’t know until the time comes. However, Berritt never even hesitated to sign up. That was perhaps what made the news she shared last week feel like an ever so much greater kick in the stomach. The news? The love of Berritt’s life, the man who completes her, the husband who is so cheesily in love with her that if we didn’t love her we’d have to hate her? Well… that man was diagnosed with Chronic Myelogenous Leukemia or CML. At the time of the news I cannot even begin to imagine what she was feeling. Her world as she knew it will never be again. That? Is for certain. However? At the initial consult they were worried that her husband may already be in the terminal, or blast crisis, phase of CML… at best they thought he was in advanced. The tears fell and the prayers began. Although she was worried about their time being cut so short… so many of us held fast to the fact that he WOULD pull through this and that they WOULD get more time together. That? Is what I will continue believing until events prove me wrong… which I will pray every day that does not happen. This family is strong. This family is fierce. This family? Has the brazen force to fight like Hell until there is nothing left to fight for.

After days of prayer and hope. After tests had been run. After everything fell into place? They walked into an office yesterday and discovered that not only is NOT in blast crisis, he is NOT in the advanced phase and he IS in the chronic phase!! That? was enough to make me the happiest I’d been for anyone in a quite long time! That means this is a battle they can fight! That means that odds are he will, and knowing his stubborn spirit… it’s pretty much certain, respond to medication and get more time with his family! Amazing news… right? So… what’s the hold up? Why not dance around under the sun and sing from the rooftops? Well… OK we’re kind of doing that anyways BUT this is still only the beginning of their fight. As so many of us know the largest struggle with anything medical is funding. I don’t want to get political… especially since he’s served our country… but the health care costs on this are not going to be pretty. Berritt and her family are currently facing an over $7,000 bill for medicine… A MONTH!! A MONTH!!! 7K?! Yeah… it’s enough to make me want to puke that this is even an amount that a drug company can charge. The thing is? You cannot put a price on keeping your husband around. DUH!! For sure!! Berritt and her family WILL find a way. Letters will be written. Phone calls will be made. New jobs will be searched out. This medicine will be where it needs to be! For certain.

We are all doing what we can. We are all bowing our heads in prayer when it crosses our mind. We obviously don’t individually have the funds to help in a *real* way. Heaven knows if I had a spare $7K lying around each month? I’d be shipping it their way!! It’s just not feasible. However, we’ve all seen it time and time again how so many small things lead to one huge thing. How 30 people chipping in 10 dollars can get a woman flown somewhere she needs to be. How 60 women spending money on some fabric can enable a family to get their daughter the medical testing she truly needs. There is nothing that can overcome the power of numbers. So, instead of asking for donations directly to Berritt? She still can’t shut off her generous spirit and just welcome donations. Instead? It would be amazing if you, your friend, your sister, your friend’s sister, etc could swing by Lille Skapet and purchase a pattern or two… or three. Whether or not you sew odds are you know someone who does. Buy a pattern as a gift, buy it for yourself, buy it for a stranger at the local Joanns. Really? It’s a real way to help financially without shelling too much out of your personal family budget. When you’re finished there… check out her other store Birdiful Stitches! For some patterns with a bit of extra flair for the things that you most likely carry around with you anyways! It’s a matter of little things adding up to something HUGE! I think that this is a situation in which that is ENTIRELY possible.

If you cannot swing a pattern? Don’t allow guilt to enter your mind. Not even for a minute. If it tries? Push it aside. Replace it with a positive thought, a prayer, an affirmation… whatever needs to be said. Lift this family up. Give them a bit of your strength, your love, your light… because the reality is that there is no price to be placed on that. There is no price that can ever be placed on the power of positive thinking. This family could use every ounce of it you have to spare. I assure you it will be received with gratitude and with hope… hope for the future, hope for life returning to a new “normal,” and the knowledge that their family will never again take a single moment together for granted. It truly is a reminder for the rest of us that life is short and we never know exactly when things will change… or how they will change. All I do know? No matter the struggles in life? They are easier to face with friends like these in our lives <3

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!!!

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!

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’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!

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! <3

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!

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!!! <3

Then, this morning happened. At about 3:15 am Alyssa woke up and was just acting “off.” In hindsight, she was acting quite the same as she did the last time she had a big seizure. At 3:30 I had Neil come in and grab her. As soon as we unswaddled her it was apparent she had a fever but we didn’t want to dose her with motrin without knowing how high it was. She began to seize but stopped right around the one minute mark. We loaded into the car to go purchase a thermometer. You know…because they freaking grow legs the moment you actually need them. Took her temp in the parking lot… 103.5. OK. We decided to go home, medicate, and see how she did. Then, about a mile from home she started to seize again. We made the decision to turn around and go to the super close hospital… I’ll be nice and let them remain nameless.   Better to be safe than sorry with two seizures that close together. She seized for nearly five minutes and stopped just as we arrived at the ER. We were quickly brought in, everything went speedily, and after a tylenol suppository she seemed much more herself. I was initially quite impressed with the efficiency of the staff. They ran the standard blood/urine/chest x-ray tests. The doctor seemed relaxed, willing to listen, and kind of “let’s just make sure there’s nothing underlying before you’re on your way.” We figured once the results came back they’d send us on our merry way.

Unfortunately… there was a shift change. I had dozed off with Alyssa on the bed while we were waiting for test results to come back. Well, the new doctor came in when I was half asleep and told us he thought she should be admitted by ambulance transfer (because this hospital doesn’t admit kiddos) and he was giving her a round of antibiotics before we left. I responded a bit confused, and then as soon as he walked away… Neil and I started to talk. As I woke up a bit more I realized how confused I was about the “whys” and about the fact that he hadn’t asked a single question…just spouted off what was going to happen. Luckily Neil was alert enough to ask me the “why” questions. I got up to go find the doctor and about 45 minutes later he finally came back to us.

I expected to have a more coherent discussion with the doctor, reevalutate things with him after he knew more about her history, and make a more appropriate game plan based on Alyssa’s history instead of making it based on the textbook. Instead? He had essentially already made up his mind about exactly what was going to happen, he didn’t want to listen, and he fought me every step of the way instead of working with me. The first thing we addressed was the ambulance. We wanted to know why. His only fear? Her having a seizure in transport. Um. OK… I get it. I get the liability. The harsh reality? Our daughter has a seizure disorder. Every time we get in the car we take the risk of her seizing enroute. If anything on this morning we’d be more prepared than typical. We’d have consented to ambulance transfer if he was worried about her breathing, concerned about her contaminating the community, etc. We did wind up convincing him to let us transfer her… although… we wanted to know why she was being admitted. She hadn’t seized again, there was no “obvious” reason for her fever, and she was acting pretty much herself at this point. He was becoming more and more agitated by the fact that we were not simply smiling and nodding. I asked if he would be willing to consult with her neurologist prior to the transfer. After all, we totally understand that it’s a lot to look at her chart when you’ve never opened it before. He agreed…less than willingly. Then? The moment that made his entire head turn red in frustration. Why the antibiotics? He said…and I quote to the nearest and best of my sleep deprived ability… “It’s the standard of care for a child her age with a fever from an undetermined source. It’s like putting on your seat belt when you drive a car.” To which I replied “OK. Part of me gets that. However, Alyssa is not a standard patient. Also, you put on your seat belt because you have to.” …ready for the reply? “Right, think of it just the same. You have to do this.” Um… NO. At that point his head was red, I was fighting back tears of frustration due to exhaustion, and I just wanted the conversation to be over so we could move to the next step. So, I told him we’d consent to antibiotics if he found one that was not grown on a dextrose base… since our child is potato intolerant after all… to which he replied “I don’t have time for that…I’ll try to find a nurse who does.” Um…yeah. You will.

A bit of time passed and he returned saying he spoke to the neurologist who felt she should be transferred but first wanted to give her an additional dose of one of her seizure meds since her levels were down a bit. Fine… we still felt it was overkill…but maybe we were missing something. (In hindsight I think he talked to one of the other neurologists in the practice who are not as familiar with Alyssa, but I won’t know until Tuesday). The nurse came in with the antibiotic and said that the best she could find was that it said not to mix it with other dextrose derived products. We waffled a bit but in the end?  I consented… I still wish I hadn’t. It frustrates me that I was to a point of exhaustion where I just did not have the strength to properly advocate. I’m not going to beat myself up about it, but next time? There will need to be an elevated blood level that indicates bacterial before they get near her with antibiotics. I just feel like he was so concerned with liability that he was over-covering…which I understand…but at the same time? I seriously feel like we were bullied.

After the antibiotics and seizure medicine had made it through the IV we headed to the other hospital. When we got there and the nurse asked why we were there I didn’t even know how to respond. LOL! My favorite part of the visit was when she asked what meds they had given her at the first ER and I listed antibiotics and she said “Why did they give those to her?!” and I replied “..because it’s the standard of care for a patient her age with a fever from an undetermined source.” Her face? Looked EXACTLY how mine felt when the doctor said it to me. HA! I said “THANK YOU! Thank you for making THAT face!” So, they checked her stats, talked things over with us, and called Alyssa’s neurologist. The pediatrician came in and said that the neurologist said as long as we felt comfortable we were safe to go home. YAY!!

So, it was a long day… with a very small amount of sleep… but here’s hoping everything passes quickly and she’s back to her “normal” self soon!