Let's do the Zoo!

 The girls have been waking every day since summer vacation officially began by asking: "What are we going to do today?". Most days my answer is something along the lines of grocery shopping or playing in the yard. However, Tuesday dawned bright, dry and beautiful. It was a top ten weather day, so I summoned up my courage, packed up our bag, our meds, and the chair and told the girls we were going to the zoo.

I was nervous and this surprised me. I take all three of them a lot of places on my own, but haven't really done much in the past few weeks. Molly has been pretty weak and uncoordinated as of late and well, Zoey has been so fiercely independent - she insists on walking everywhere and additionally, she's newly wearing underpants. In my overzealous efforts to keep them safe, I pinned my business card inside Keddy and Zoey's skirts and instructed Kennedy on what to do if she should lose me, while telling her she better not lose me and she was in charge of holding her little sister's hand at all times! And with that, we loaded into the van.

We headed to the Beardsley Zoo right for opening, arriving shortly after 9am. Thankfully, we have a zoo membership that was a birthday gift for Zoey from my parents and an absolutely perfect one as we definitely don't need more stuff in our exploding house. I knew as we pulled in, I'd made the right choice. The girls were being patient, they were listening and best of all - they were smiling. I unloaded Molly's chair, and Kennedy dutifully grabbed hold of Zoey and off we went.

We saw many different animals - favorites of the day was the rooster and the Prairie Dogs - or at least their tunnel! The zoo does have a beautiful carousel - but I had prepared the girls ahead of time, telling them that I just didn't think I could handle all three of them by myself on the ride. Well, as we took a quick bathroom break, I complimented them on how good they were being and explained to them, if they could be patient - we would ride the beloved carousel. I lucked out - there was only one other group there, so we were able to slowly board the ride and choose our vessels. It had to be one where I could stand between Molly and Zoey and hold on to both of them for different reasons and still see my middle cowgirl in all her
beauty.

We then ventured to the small playground so they could do some climbing and by then  I could tell Molly was not going to last much longer. It was getting hot, and she was getting wobbly. Kennedy seemed to understand and the girls were delighted with a quick stop in the really affordably priced gift shop.

I should have stopped there - it was a picture perfect outing for us. But, then we went to Target. I can't really complain as we made it out in one piece with just about everything on my list. All I can say is - Thank GOD there is a Starbucks in Target! I'm also, shamefully grateful that Happy Meals have reasonable portions and a reasonable price tag. I know they aren't the healthiest - but man are they convenient every now and then!

I might get this summer thing down, just in time for it to all change when Molly goes to summer school on Monday. Remind me, is it me or her that craves routine???

The Day That Wasn't

Today should have been a fabulous day. The sun was shining, the temperature was pretty perfect and we had nowhere we had to be and nothing we had to do.

Perhaps that's why days like today hurt so much. They literally bring tears you didn't know you had. When your little girl sits on the steps with tears rolling down her face saying "I really want to be alone, but I don't like how quiet it is when I'm alone". When she just wants to lie on the couch or walk in patterns around the house telling stories in her head; what do you do? You can't stop her, you can't change her course - you have no idea why any of this happens. You call doctors because of strange rashes, you try to figure out why she's so tired all the time, why she's falling, why she feels "not herself".

You foolishly expect answers, but once again, there are no answers to be had. And this mystery haunts your sleep, your days, your thoughts. You have to think of ever "what if" before you can plan anything. You feel helpless and sad and then the guilt settles in. You have three children after all, you knowingly brought them into this world to be a part of this craziness. While you worry about your oldest, you can't forget about the needs of your other two - not that they would let you for one second.

And so this glorious day becomes a precarious balancing act. You are a short order cook, a nurse, a medicator, a comforter. You pull down underpants 100 times, you do laundry and dishes, clean up spills and step on countless legos while your toes are trampled. You thankfully remembered your anxiety meds and are grateful for the leftover eggplant you managed to eat for lunch while playing hide and seek with your youngest. You organized all the bills - house bills, medical bills (they never stop), and the budget that never seems big enough. Oh and you got in a few hours of work as well. You dreamed of going for a walk, but somehow knew that it was not a good idea. And somehow, as you tucked your youngest into bed for the tenth time, you find yourself thinking that maybe tomorrow we'll all go to the zoo or at least to Target!

"Why don't you just give up?"

We had a doctor's appointment with Molly yesterday with the developmental pediatricians at Yale. We had started seeing them when our insurance was not accepted at Boston Children's and we needed help. Since changing our insurance 2 years ago, we have been able to be back at Boston, but have kept the Yale department in the loop. We see them infrequently, but they are intelligent doctors.

It's taken me close to 24 hours to process the discussions we had during this appointment.

The first topic, I agree with. They aren't sure how they actually fit into the treatment picture for Molly. I agree, they don't fit in. They were there when we needed them, but we completely trust our doctor in Boston even if we don't always agree.

The second topic, I'm still struggling with. The doctor asked me if I ever thought about just giving up because we may never get a true diagnosis.

We've heard a lot of Molly's current symptoms are the autism from some doctors and definitely neurological from others. We've had doctors tell us they know there is something, they just don't know what. My baby girl is a big old question, for which there is not a proper answer yet. Would you stop looking?

I had to listen closely, to try not to be too defensive. She went on to explain that in looking at Molly's chart, there have been a lot of Emergency Room visits and admissions and various specialists. I can't argue with that. There have been a lot of visits. All except one, were directed trips by a medical professional, who we called. We don't just pack her up and go to the emergency room for a fun time. The pediatrician's office closes at 5pm, and our uber-popular Dr. C is often scheduled to the max and can't always make time for Molly.

Some of her symptoms are really vague. Some of her symptoms are really scary. The large, red, painful welt on the entire back of her leg or the agonizing stomach pain that woke her from a sound sleep at 2am, or one side of her face that drooped followed by an inability to walk straight three hours later - all sent us to the ER. They all happened after hours, and they were all very scary. There have been more - falling out of nowhere multiple times a day, upwards of 6 or more zone-out spells in one day when she hasn't been having any.

Then there's the nights where she looks at me with tears in her eyes, reaching to be held as tight as possible, uttering the words - "I just don't feel like me, I don't feel right". We don't go every time, if we did, we'd move in to the hospital!  But to stop looking? I don't know how to do that. What if there is just one tiny thing that we uncover that helps to put all the pieces into place.

I know we see a lot of doctors. Trust me, I get the bills.

So, we've been told she fits into an autism diagnosis, but it doesn't truly explain her completely. What? At this moment in time, autism is the best diagnosis they can give her.

We've been told she has seizures, but she's not seizing, but that might have been a seizure more times then I can even count. You get why I'm so confused right?

Listen, I'm not going to put my girl through anything painful or stressful unless it's completely necessary. Routine blood work is necessary. Recurrent EEGs, probably not - so let's get those down to once a year or every 6 months unless it's an emergency! But, I'm not pushing for painful procedures - I'm asking for help. I know what I see, and my girl hasn't been the same since whatever that mystery illness was at the end of June. Very similar to right now, a few days of cold symptoms and a mild sore throat. Then she's just zapped and out of it and having all kinds of issues.

She now needs orthopedics to help keep her ankles form rolling. Her gait has become more narrow, her balance is less. The say, this happens to kids with XYZ, but she isn't diagnosed with XYZ....

So, NO - I will not give up. How can I give up? I know there may never be an answer, and our ultimate goal is to keep her as happy and successful as possible as well as safe. But, I look at kids who are now in their 20s and are just getting diagnoses for diseases that hadn't been discovered when they were little. Their parents never gave up - and it was not easy. I will never give up looking, because to do that feels like I'm giving up on Molly.

Thanks for listening to my stream of consciousness.

this kid has timing

From the day she entered this world eight years ago - my Molly has had timing! It is certainly not my idea of GOOD timing, but it's timing none-the-less. My head is still spinning and I am extremely grateful to Disney Junior and basement playrooms at the moment - as well as for the ability to have a hot cup of coffee this morning as I write what's been going on.

A week ago - Monday the 11th - Molly woke up sobbing in pain at 2 o'clock in the morning. The intense stomach pains scared us as this is not typical for Molly, nor does it ever happen in the middle of the night. We called the on-call pediatrician and they suggested getting her seen. So, off Molly and I went to the ER. The nice thing about going to the ER at 2:30am - is there is usually nobody there - and since Molly's pain was presenting quite like appendicitis, we got right in. They did an extensive abdominal ultra-sound which revealed a perfect looking appendix (phew!) but showed multiple swollen messenteric lymph nodes. I had to look it up and have Dr. C explain this to me. Basically you have lymph nodes all over your body. They get swollen when there is some sort of infection in them - viral or bacterial. They cause a lot of pain and some patients were suspected of having an appendix rupture and opened up on the operating table only to find a normal appendix and lots of swollen lymph nodes. While in the ER - they dipped Molly's urine and concluded it was suspicious for a UTI. They started her on antibiotics and we returned home.

Fast forward two days to Wednesday the 13th. We had Molly's 8 year check-up. Dr. C spent a ton of time with us as there are a lot of legitimate concerns. We found out there was no UTI - hmmmm.... Also, we raised her newest med this day - guanFacine or Tenex. It's for ADHD, but it's also a blood pressure lowering medication (this becomes important). Wednesday she was off. She was tired, she could barely bare her own wait, she had no emotion behind her speech, she was slurring, she was stumbling - you get the picture.

Thursday was her birthday - the excitement of that seemed to give her a little pep in her step - she smiled a lot, she looked tired again by mid-afternoon but it was definitely better. Friday we took her to NYC to have tea at the Plaza Hotel and visit FAOShwartz - It might have been her favorite present ever. As she and I sat on the train, I barely knew who I was riding with. She looked so very tired, and so very ill. It was her first train ride, normally she would have been bouncing around with excitement, but she sat curled up in the seat - so anxious about every stop we made, looking like she should just fall asleep. She was barely able to wait for a cab from Grand Central to the Plaza and then she collapsed in her stroller-chair when Chris met up with us. She didn't move from her chair but a few times. To see a few things in the Eloise store, to dance on the Big Piano at FAO (which she abandoned early because she was too tired) and to look out Daddy's office window. She passed out on the car ride home, while playing iPad.

Saturday and Sunday were more of the same, but getting progressively worse. She couldn't form sentences, she was so spacey we had to repeat ourselves 3 or 4 times. She complained of feeling clumsy, of a headache, of not being able to focus. By Sunday she was walking into walls, slipping off step stools, falling off the couch and just looking like she was asleep sitting up. I should also mention that from Thursday on she has had black stools (I hope that's not TMI). So, around 4:30pm on Sunday - I called the pediatrician. He suspected the Tenex - which I didn't disagree with, but since he didn't prescribe it, he suggested hanging tight and talking to Boston. At this point Molly had curled up in my lap and was crying because she just didn't know what was wrong but she just didn't feel well. So, I followed my instinct and called the on-call epilepsy fellow up in Boston. His initial reaction was to hold meds, but since we couldn't tell if the increase zoneyness was actually seizures and because she seemed to be spiking a temp and because there were just so many factors - he suggested she be seen in the ER. I had to agree with him.

Now remember what I said about timing. We headed to the ER around 5:45pm last night (Sunday). Chris's car service was picking him up at 3:45am Monday morning to go to MN for business. This would surely be tricky, but her health and well-being comes before tricky parental planning! Luckily my amazing parents and my awesome friend Amy both volunteered to help should Molly be admitted (which she almost was). So, anyway - we got there, and they put us right back in a room. They wanted to check some things out, draw some labs and see if they could get stool. When they came back to do vitals - things got interesting. Molly's blood pressure took a dip. So the plan for labs changed from just getting labs to getting labs and putting in an IV and giving a bollus of fluids - which did bring her blood pressure back into the normal range after an hour. The team at Yale talked at length with the team in Boston and they decided to have us hold meds and call the team in Boston first thing this morning (which is what I am doing right now).

Molly is still curled up in my bed sound asleep. The two littles are down in the playroom, as they got up about 5:45am! Kennedy has an awful cold that just won't go away, and Zoey is every bit a feisty almost 18 month old with a drippy nose. Chris got on his plane successfully and my wonderful father is going to come down so I can do a few things today (like clean the bathroom!). Tomorrow, Molly and I travel to Boston to be fitted for her ankle braces and meet with the orthopedist to discuss our next steps.

The journey of a special needs parent is filled with a lot of twists and turns, a lot of bills and a whole lot of difficult decisions. However, it's also filled with cherished memories, millions of moments you don't take for granted, and big words that make you sound really smart. Heck, I pulled out Mesenteric Lymphaditis last night. :o) Thank you for your continued good thoughts and prayers for our family and for our Molly. She truly is a special spirit and we are blessed to be her parents.

And if you're interested in reading more from me, I am a regular contributor to the blog: www.smartappsforspecialneeds.com.

<3 Amanda

Molly's marathon appointments - October 2013

It has been quite a few months for Molly. After spending a great majority of the summer on the couch, so fatigued she was unable to do anything, Molly did start to get some of her spark back. Vacation to Myrtle Beach helped a bit, and getting back into the routine of school really seemed to help. If we've learned nothing in the past almost 8 years, it's that Molly LOVES structure and routine and thrives on it.

After July's hospitalization, testing and appointments, we did our best to get a program in place that would work best for Molly. We got an out-of-network exception and were able to get a private ABA therapist in the house 2 days a week to work on the behavioral aspects of Molly's impairments. Ashley and Britta are a wonderful team and Molly is progressing with their help. We've kept the 1:1 at school and every pull-out and push-in therapy we need is in place (minus in-school ABA); this is all helping Molly keep up with the rigorous third grade curriculum. As far as seizures go, we've noticed some staring spells, but no convulsions (knock on something!)

So, a lot of good stuff. However, on Saturday of Columbus Day weekend, Molly was just standing in the hallway one minutes and the next minute she was like a rag doll and had crashed to the ground. We didn't know what to make of it initially and chalked it up to something suspicious - but just kept an extra eye on her, I even went to her theater class with her. She seemed zoney and tired and a bit wobbly. Shortly after coming home from theater class we heard a huge crash in the bathroom and found a rag doll slumped on the floor again. Now the hairs on the back of my neck were standing up. As Chris and I tried to decide what to do, she fell again outside. Somehow she didn't seriously hurt herself - thank goodness! We called the pediatrician's office hoping they'd just say keep an eye on her, because we knew calling Boston would mean going to the ER. Well, the pediatrician's office agreed that the ER was where we needed to go, as these could very well be some new seizure type. Turns out the docs agreed and she was admitted for eventual monitoring and then a quick MRI. Nobody discovered anything, but her mental status had returned. So - no answers - just more questions.

This takes us to our marathon of appointments the last 2 days. We started Monday morning with the Keto Dietitian and Doctor  - since Molly is on Modified Atkins (or Modified keto) we have to closely monitor EVERYTHING. We don't weigh or measure her food, but she's on a very high fat, very low carb diet - like 15 grams of carbs a day. She gets a bunch of Mayo and whipping cream. And, although we've seen a new piece of Molly unlocked with this diet, I fear her little body can no longer handle the stress of it. When we began in April her total cholesterol was only 178, on October 2nd it was 338. That's a big jump, but not unexpected when you're on the diet and it almost always resolves when you go off. However, the concerning part was that her fasting levels yesterday (10/29) were 429 - so it's gone up incredibly fast and is higher then any of us are comfortable. It's one of those awful decisions where you have to consider the piece of her you've unlocked, versus giving her heart disease at a really young age. Since we weren't using the diet to control seizures, we are going to back way down on the fat. Our plan is to slowly transition Molly to an LGIT (low-glycemic index treatment) or South Beach style diet. The reasoning is her doctor feels Molly did so well cognitively on the diet, not because of just the diet, but because of the structure of the diet - so we don't want to lose that! Molly is also still growing at the 95th percentile for both height and weight, but her BMI is in the acceptable range.

From there we went to endocrinology. With thyroid issues in her genetic make-up and a wonky test, along with some of her strange autonomic issues - we decide to get a full work-up. As of right now - no endocrine issues - good news! She just has to have a thyroid function test yearly and since there was the presence of antibodies, she will likely develop hypothyroidism - but we're totally on top of it.

Next we went to a research study, which was quick and painless and then we found our hotel and Molly discovered the swimming pool, Texas Roadhouse, the mall and how to take up and entire King-Size bed and use your super cold feet to push Mommy out!

Tuesday morning - we had to be at the hospital when the lab opened at 8am for a fasting blood draw and then straight upstairs to development for an 8:30am appt. Her dr. was pleased by the progress she's making and attributes a lot of it to the coping skills we've taught her, to the ABA therapists, to the 1:1 and to the program at school. Molly talked about FRIENDS by NAME!!! she talked about things that weren't completely Molly-centered and she drew a detailed picture - these are HUGE accomplishments. There is still a lot of concern about the structure and semantics of her language, the reciprocal interests, the emotional connections and understanding. The biggest concern, right now, however is attention or lack there of including the fidgety "ants in her pants" syndrome she seems to have. We've been talking about a med since before Molly was 5 to help with this. We've tried everything we could to help control this piece of Molly's make-up without using medication, but it's not working. Molly needs help to calm her body and her brain and the Depakote alone isn't cutting it anymore. So we're going to try a very mild and long used med that has virtually no side-effects, because everyone believes Molly is EXTREMELY medication sensitive. We go back in three months - but we have a lot of good information and support form them!

Next we checked in with orthopedics who had made a special appointment with us, since they knew the 15 minute slot allotted in clinic would be no where near long enough. He was still in surgery, so Molly and I traipsed over to the Galleria and she got a real, hot breakfast at 11am! She was thrilled by her omelet and strawberries with whipped cream. We talked, we laughed, we colored and she told me this was the best vacation she ever had because we got to be together. All the doctors, all the poking, prodding and pushing and she couldn't be happier. Afterwards we found Mommy a big coffee (cold kid feet and no room in bed) and went to wait in orthopedics.

I was skeptical, as we'd been dismissed from an orthopedic when she was under 3, saying she was normal and nothing was wrong. But, I've seen a great change in her gait. What used to be very wide-based is not very narrow, one foot turns really far in, her knees knock. Her movements are very jerky. I knew it wasn't ok and the doctor agreed. He really didn't like how floppy her ankles and knees were, how easily he could roll them and move them all about. He watched her walk, he played with her legs and he promptly ordered she be fitted for custom SMOs and that we also get elastic knee braces. We would get these made, come back for a fitting and then x-ray her hips and back to see where the issues really begin. The hope is that the supports and continued therapy will correct a lot of the problems. We'll see. We ended the day at the brace shop getting casts made of Molly's feet so they could create her custom ankle braces and we'll head to Target today to try and find the right size in knee braces. This is a whole new avenue, one I know little about, so I'm learning as we're going. But Molly was happy to pick out butterfly patterned inserts with purple fabric straps.

Between orthopedics and the brace shop we saw our beloved Dr. P. who was as concerned as we were with all the falling. She was reassured to see Molly be able to walk a straight line as this meant her cerebellum was in tact. She's unsure what to make of the episodes, but wants Molly watched closely. She says we cannot increase the Depakote, as Molly's white count is too low and higher doses have depleted this even further in Molly in the past. She has agreed with the development dr. to add Guanfacine (Tenex) to her regimen, but extremely slowly and cautiously. She's also said to come off the diet once we get that up and running, but to go ahead and cut back on the fat now. She, however, does want us to stay on some kind of a diet plan. We go back in February to see her and development and they are always available to help us.

Beautiful Molly was wiped last night and crashed hard. She made it to school today , and we'll see what kind of shape she's in this afternoon since we have to go to Target to pick up meds, the braces and a few odds and ends.

So - if you wondering what was going on - there you go, if you weren't - I gave you WAY too much information. We're happy to share Molly's journey, as she is such a strong spirit and she never gives up. She actually asked me, "Remember when I couldn't read Mom? Well, I just kept trying super hard and I didn't give up - now I can do it!". She's so right - every day is a new challenge and every challenge brings a lot of questions. But her amazing spirit and sparkling smile keep us pushing forward. Thank you for thinking of her and we'll keep letting you know what we find out as we find it.

Disney Magic

Back in the Spring, a story broke on the Today Show about socialites who were hiring disabled individuals as tour guides to either pose as family members or part of their party so that they may gain faster access to rides and cut their wait time down at popular attractions at Disney World. Being a mom of a special needs kiddo, this story made me sick to my stomach. To think there was such insensitivity and a sense of entitlement in the world - just blew my mind! Being the Disney lovers our family are, we have followed the stories that have been coming out quite avidly. With Disney set to unveil new rules regarding Guests with Disabilities, the web has been abuzz with blogs - some full of speculation and others fact. But, it was the comments from others that got my blood boiling. Things like, "just teach your kids to deal with lines, I manage my 2 year old!" or "if you don't want to wait in lines, then don't go to Disney World". The biggest problem, in my opinion, is lack of understanding on the general public's part both into Disney's policies and into what life is like when you have a special needs child. 

As I tend to not be able to "just let things go", I called Disney up this morning. I asked them about the policy changes and how this will directly impact MY CHILD. Molly has Autism, ADD, Seizures, Heat Intolerance, Sensory Disorder, Developmental Coordination Disorder, and Asthma, with more diagnoses likely after upcoming doctor appointments. Due to all of these conditions and her treatments she also fatigues very easily and is unable to stand for lengthy periods of time. Heat and fatigue mean more seizures and uncontrollable meltdowns. We discovered, very early on, that a lot of these issues could be kept in check if Molly was allowed to stay in her special chair while waiting in line or watching shows. Instead of managing meltdowns and constantly replacing ice packs in her cooling vests, we are able to push her through the parks and wait in lines with her seated. She is able to focus on reading the map or her beloved guide book, instead of falling into people or accidentally stepping on everyone within a certain radius of her. I still carry and manage my 2 younger, somewhat typically developing children. There are still rules and expectations put in place for their behaviors. 

To the people who say, then don't go to Disney if she'll have a meltdown. I ask you, what you think I should do? Should I sit in my house all day, emerging only when you will not be inconvenienced by my child trying to express her needs? Should I not try to make memories for my family that are not filled with hospital rooms and doctor's visits? Is it not fair that I get to capture those happy moments on my kids' faces? My daughter was made different, her brain works differently. She's had people tell her their kids can't be friends with her because she's different. She's been told she cannot do gymnastics like her sister because she's different. She's been told, no - you can't eat that piece of cake or that apple because it's not on your special medical diet. She's been told no so many times in her almost 8 years. She's also been told, yes you have to have another blood test and yes another doctor has to examine you and yes you have to have all those buttons glued to your head yet again. You, the naysayers, have no idea the day to day dealings with my child. You also have no idea the intense planning and saving that goes into a Disney vacation for this family. We only go during cooler months and when it isn't as crowded. This means that the kids miss school - but since Molly cannot handle crowds or heat - we already make this accommodation. We save for years to plan our trip. We don't go out to eat, we don't go to the movies, we tell our kids "no" a whole lot - so that we can say yes to a magical trip every few years - filled with memories and happiness. 

According to Disney, Molly can still stay in her adapted stroller for those rides with lines wide enough to accommodate it. This means almost every single ride in Disney World. She has always waited in these lines and has never been ushered to the front. There are only a handful of rides that I can think of in Old Fantasyland that don't have lines wide enough for the chair. For these, she would have to get a special pass to come back to the ride at a specified time. We've never cut the line. That is a privilege reserved for kids on a Make-A-Wish Trip. These children with life-threatening illnesses  and their families are THE ONLY kids that cut to the front of the line. This past trip, we were waiting to see Minnie Mouse. Molly was in her chair, 3 year old Kennedy was impatient and 6 month old Zoey was crying. We were put on hold so that a family on a Magical Make-A-Wish Trip could hug and take a picture with Minnie. I explained to my child that just like her, that little girl had to go to the hospital a lot and meeting Minnie made her very happy, but that unlike Molly she just couldn't wait today. I don't know if Molly understood or not, but I watched the smile on the Make-A-Wish kid's face and tears welled up in my eyes. Truth is, someday that could be us, making as many memories as possible in our kid's favorite place in the world - but today it wasn't, today we could wait five more minutes to see Minnie, because we had 5 more minutes. 

And so for Peter Pan's Flight, Small World and the handful more that aren't wheelchair accessible, we'll get a Guest Assistance Pass or a regular Fast Pass. The new policy is put into place because people were abusing the system and Disney had to respond in a way that was both fair and still accommodating. It won't make everyone happy, nothing ever does! My concern really isn't for the new policy, it's more for the culture that some people seem to be raising. One that truly locks special needs children into a room and doesn't let them out to mingle with typical citizens. Shame on that culture. Open  your eyes and yourself to the beauty of a special needs child, the gifts they possess and you will feel your heart open with love. For the culture of families that embrace every child, no matter how different, Thank You! Thank you for raising accepting citizens who understand that underneath disabilities and limitations, there are people who all possess a special gift. 

We're planning our next trip to Disney, and it will be filled with accommodations we put in place for our children, typical and special. It will be helped by Disney being understanding and helpful and it would be nice if every single person in the parks just smiled at my daughter as she rides around in her adapted stroller beaming like the princess she is!

the anxiety attack

Anxiety, you pesky beast. You really do like to strike when least expected! 

That's me on my 1st Birthday with my gorgeous Mom

Baby Amanda

I do find it somewhat amusing that I wasn't able to put the correct name to this feeling I've had my whole life until I watched my own child struggle with her own anxieties. With Molly the world is black and white or more accurately pink and purple. Things are logical, they make sense, there is a why. When things don't fit into her plan, or into the picture of life she has in her head - she will start spiraling. The anxiety she feels over this will set off panic attacks. Her palms will get sweaty, her heart will race, she will have stomach pains, she will cling to me and crawl into my lap. That's the simple part of Molly's anxiety and the part that I finally recognized in myself. What's not simple with Molly is when her tolerance levels are lowered by illness, or seizures, or when unknown stimuli set her off. What's not simple is that she doesn't have the appropriate language or understanding to tell me what is going on. So, she pick her nail beds raw, she picks scabs until the bleed and she goes into "Molly's World".

With Mom and Dad at Molly's age

With my 2 best friends

And so, I must now figure out how to treat myself and give my daughter the coping skills she needs to deal with everyday life. As far back as I can remember I would get sore throats before school, I would get stomach aches to the point it would make me sick. I was bullied as a child. Being overweight and soft spoken, I was an easy target. I was picked on, called names, and even beat up at one point. I tried to fit in, but it wasn't worth it. Elementary school was tough, but I had some really good friends and I had an innate love of learning. Middle school had it's moments. But when I wasn't in the music room, or on the stage, or in the safety of a classroom - I was scared to death. Kids can be really mean. I still hear some of the names from those days, and I cringe - how do you forget years of torture? I think that's when my anxiety began for real. Any time I had to go into a new situation or try something new or if my parents were going away - I would turn to stone inside. I would freeze. Anything that came out of my mouth was wordy and didn't ever accurately express my feelings.

Then came high school. I'd love to say I was one of those kids who blossomed over the summer from 8th to 9th grade - but I wasn't. Still overweight, and forever awkward - I was really nervous for school. I swear my amazing friends - who are still extremely important parts of my life, really helped me build character during these years. I joined a peer leadership group, I fell in love with theater and music and I began to learn who I was inside was what really mattered. By senior year of high school, I was confident and I was pretty happy - at least that's what I remember. And then came college - and away went the shy person I once was. I figured out what I was made of being 4+ hours away from home. I made new friends, had some of the most amazing musical experiences and mentors a girl could wish for. That pesky anxiety feeling only reared her head during appropriate times - auditions, solo performances, juries - things that made me question myself and my confidence.

I'm extremely lucky to have had educators throughout my entire life who valued the whole child. I learned math, English, Social Studies, Science. I read Thoreau,  Shakespeare, and every author in between. I discussed politics and learned of cultures I would never see at Disney World! I sang music more beautiful then my ears could have hoped for. But in teaching me all these things, these teachers taught me that I was important. That my opinion was valued and that I had a lot to offer to the world. From the very beginning, I looked to my teachers as mentors to help guide me through life. My parents are amazing individuals who continue to inspire me to greatness. They have strong convictions and raised us with so much love an affection - but as Hillary Clinton said, It takes a Village. I think a lot of Molly's anxieties are held in check in school because of the incredible support system she has. I truly feel like we are a team, helping to shape her. And now that Kennedy has started school too - I see her admiration for her teacher and her desire to learn school subjects and about herself. Kudos to my teachers and to Molly and Kennedy's teachers. Alas, I digress - it's so hard when your brain travels a million miles a minute!

Tiny Baby Molly

So, my anxiety remained in check for many years. It really didn't start rearing it's ugly head until Molly was born. She was early, she was tiny, she made noise! She didn't come with an instruction manual and I was terrified of messing up. I got past that as new mothers do, but then she had her first seizures and life has never been the same for me. A dear friend shared with me that when you have kids like her son or my Molly it's like you are constantly suffering from Post-Traumatic Stress Disorder. You never know when the kids are going to seize, and you know when they get sick - they get really sick. You've seen friends bury their children, you watched in disbelief as toxic levels of medication are pumped into your child. You put them to bed every night, just hoping they will wake up tomorrow. That's when my anxiety and panic attacks hit, about 10:30pm - they kids have been asleep for a few hours, but maybe they bumped into the wall or Molly's playing the "hokey-pokey" in her bed and I'm on full alert. That fight or flight response gets my heart beating faster, my stomach turns to stone and my brain starts spinning. It takes every ounce of self control not to just sleep on their floor. So, instead, I sit on the couch and stare at the video monitor, taking deep breaths and telling myself - it will be ok, and if it's not ok - you'll deal with it then.

Last night's anxiety attack was rough. It started when we put the big 2 to bed and Kennedy said "My tummy hurts". Logically I knew she had not mentioned this at all before, that she had had cheese in her dinner, and that she's a refluxer from way back. Logic wasn't controlling my autonomic system and my heart started racing. My stomach then turned to stone and I had trouble choking down a piece of toast. Some quality couch time with the husband and spider solitaire on my phone succeeded in calming me down - it was a small attack and I actually started drifting off - so we went to bed. Then a BIG OLD panic attack hit. It was awful - but thankfully, I knew to come back to the couch, breathe and hop on facebook chat - and pray for someone who knew me and could talk me down. My dear friend was on, and through typing to her I was able to regulate my breathing and things were fine. I have a prescription for Ativan - I'm too chicken to use it., especially since I know Molly can't be on benzos because it makes her sleep apnea worse.

Just a smattering of our support system

So, year - anxiety is a real thing. It's debilitating and given all the things going on in our  world - it's amazing any of us can function, let alone leave the house. But, I find if I remind myself that each day is a gift, that you need to make happy memories and that worrying isn't going to fix things - I can usually get myself back on track. It also helps that I have some really amazing family and friends. I just feel they put me way too high on that pedestal sometimes. I'm human and I have an Achilles heal - I break too. I guess it's true, every person is fighting a battle that you know nothing about by looking at them. Smile at people, be kind to people, and find ways to make things better!