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!

Back to School

Today was the first day of school here. Molly embarked on her first day of Third Grade, Kennedy confidently entered the realms of Kindergarten, and Zoey enjoy 2.5 hours of being the only child (half of which she spent n her crib!). And Mommy, well Mommy spent equal amounts of the day worrying, preparing, and wondering and a few minutes sitting down and having grown-up time (something that has not existed this summer at all!). As Molly proclaimed when she woke up, "Today is a Big DAY!" - it certainly was - and they showed every bit of the emotions from today in their tired little faces this evening. And although, Molly is still awake, picking at every scab and fingernail she can find - I'm hoping to see the anxiety leave her soon so she can rest that precious brain of hers before tomorrow's BIG DAY!

The start of the school year is always met with such a mix of emotions for me. As a former teacher, I used to relish every minute of my unscheduled time. Now, granted, there was only one summer I didn't work or have a kid and it was the summer we got married - so it was still super busy - but it was a blissful summer! Now as a parent, I both relish my undisturbed and unstructured time with the kids and count down the days until they are back in the routines schools require. Then there is the planning that goes into sending a medically needy child into someone else's care for 6+ hours. And of course there is the worrying that goes into not having said child in my sights all day, as I have all summer. Unfortunately it was a very tough summer for Molly. She was sick, lethargic and went to doctor's appointments or therapy appointments 2-3 times a week. So, leaving her today was hard. I thank God every day she has an amazing para with her 1:1, keeping tabs on her and making sure she stays safe. 

Molly & her beautiful Para Linda

I think it's normal for parents to worry about their kids when they go to school. Heck, in this day and age, we'd be almost callous not to. But, when you have a child with special needs or a challenging medical picture - it's easy to be consumed by the worry. I didn't realize how much I was worrying about Molly until I dropped Kennedy off today without hesitation or worry, but couldn't let the nagging worry I had for Molly go. I can tell myself all the time that she will be fine, but I've seen her not fine so much lately that it's hard to let it go. 

So, I did what I do best. I organized and I prepped and I made sure everything was in order so that if anything unexpected came up, we'd be ready to roll! I got all Molly's meds together, all the paperwork that goes along with them, Kennedy's updated medical form with her recently acquired immunizations marked and dated, all of Molly and Kennedy's school supplies, and Molly's completed summer packet. Then there was adjusting Molly's meal intake to correspond to the later lunch schedule that 3rd grade brought on. I made her Modified Atkins Lunch and double morning snacks. I got both their water bottles ready and Kennedy's snack too. Everything was nice and lined up. Their first day of school outfits were laid out as well as their new shoes from Goomie. They got up and I fixed their hair. Chris helped me make breakfast and by 8:40am we were on our way down to school.

The school is so great about working with us. They've given us a parking pass so Molly doesn't have to walk too far. They know us and help us with med drop off and disseminating very important information to Molly's ever growing team. They do their best to make me feel comfortable and safe about Molly being away from me. 

Bottom line is that I made it! Best news is that the kids made it too! As the school has been so understanding, I pick both girls up about 10 minutes early to avoid the insane chaos of the end of  the day. I was standing by the main office as Molly came from Science Class back to her classroom. Her para, Linda, was holding her hand and Molly looked about ready to fall asleep. She fought back tears as she saw me. My big girl held it together all day and kept her emotions mostly in tact. When she walked in the door, she collapsed on the couch and just laid there for an hour - emotionally, mentally and physically drained. I guess it's good my other two buddies were there, or I probably would have just laid down next to her and snuggled her for the entire hour! 

so tired after a full day back!

I was thrilled to hear Kennedy chat contentedly about being a Kindergartner. She talked about all the teachers that came into her room, all the kids, the fun things they did. It was hard to keep up with her and it was a welcomed reaction from the grilling I usually have to give Molly about her day! I was so proud of Kennedy. She smiled, laughed and walked like such a big girl into her first day of school.  Today was truly the first day of Keddy's educational career - one that will be as big as she can dream! School is where I found my love of music, reading, math, and teaching and I hope that my girls can stumble upon just as many amazing educational discoveries! 

Everyday I kiss them goodbye and send them off to the care of their amazing teachers, I am putting complete trust and faith in those teachers hands and in the school. It's harder then I ever imagined, but I know the girls are getting so much out of their time in school that I suck it up each day and try to keep the nagging worry in the back of my head.

vacation with kids

I want to be upfront when I start this blog, under no circumstances did Chris or I expect to RELAX on this vacation. We knew it would be pretty much non-stop with our 3 kids plus a handful more, and we were quite honestly, perfectly fine with that. You see, after all these years, we just cherish the time we get to be all together. I know they say parents need their alone time, and I agree we do, but when time together is a precious commodity, you have to prioritize and we rank being all together at the top of that list.

Packed and ready to go!

and the kids fit!

That being said, when we said we wanted to be all together I don't think either of us meant 15 hours each way in the car! Really, the car trip would have been no big deal had the states of CT, NJ, MD, DE, and VA actually cooperated and kept all other drivers off the road and cancelled road construction when the Renz Family was travelling! It also would have been easier if Zoey didn't vehemently object to being in the car. She was ticked off, and she was making sure we all knew it and we were feeling it. Molly was a gem, tucked in the back seat only asking us what time it was every 15 minutes and Kennedy did great thanks to our new friend - Children's Dramamine. But boy, does it take a lot to travel 750 miles away from home with 3 kids. Our mini-van was packed to the gills and we were thanking God for the Dodge coming with under-seat storage. Because, when you rent a house and don't want to pay extra to rent EVERYTHING, you must bring it all. That meant linens, a pack and play, a booster chair, cooking supplies, sand toys, beach supplies, pool supplies, clothing, cleaning supplies and special dietary food you aren't sure you can get somewhere else. Oh and of course the GIANT bin of Meds and Molly's push-chair and Zoey's stroller - not small stuff!

But, we got there and we were able to visit with wonderful friends who moved to Myrtle Beach while we waited for our house to be ready. The kids all got to stretch their legs and fill their bellies and get excited about being on vacation. But, it was go-time from the minute we pulled out of the driveway on Friday August 17th at 10:15pm until we pulled back in on Saturday August 24th at 11:30pm. We played, we swam, we boogie boarded, we laughed, we explored, we hugged and we had a great time!

totally done with the car!

not happy

Chris and I learned a few things. Our kids are not ready to make long car trips - or maybe we aren't ready to make any more car trips. The baby cage that could turn into a baby gate was worth every penny when we went out to buy it after being in the house for less then 24 hours as someone rescued Zoey from the giant staircases for the umpteenth time. We learned that we love that our kids have their own rooms (well sort of), it was nice to be able to keep an eye on them and hear them sleep, but we would rather do it on the monitors and allow them to make their restless sleeping noises without waking each other up. We learned three was and is the magic number for us - it was great having more kids there so Kennedy had playmates all week, but it was a whole new perspective herding more then the 3 that we are used to herding. We also discovered how wonderful it is to have grown-up time. Chris referred to it as the detox portion of the night, where we could play a non-Candyland type games, speak about topics beyond Disney Junior and diapers, and actually sit down! Of course, Zoey knew this was "our time" and she wanted a part of it 3 out of 7 nights - but, that's ok.

grown up games!!

no kids awake, and he's asleep...

One thing I made sure to keep telling myself, especially when I started getting frustrated when someone was crying again or when I was dragging someone else back through the current because they couldn't seem to pay attention at the beach or when I was cautioning someone else to stop jumping for the thousandth time; was that there were plenty of parents out there wishing they could have those experiences just one more time. That there was a mom out there sitting next to her son's hospital bed, willing him to start screaming and wishing she was rocking him to sleep. Each day truly is a gift, and we considered this vacation to be winning the lottery. We got over a week of precious time to spend with our three favorite little people on the planet. We saw a million smiles, heard a million giggles, watched discoveries, got hugs and kisses and snuggles, and just spent time together. That's not to say our life is sunshine and fluffy clouds, but life is how you look at it and it's what you make of it.

pool time with the kids

In addition to our family unit of 5, we spent a week with people who are like family. They are some of the best friends we have ever had and are important parts of our lives. They understand that our life is in constant flux depending on what Molly is doing or how she's feeling. They pitched in without being asked and the girls LOVED all the attention. It was just a wonderful experience and an amazing group of people who I am eternally grateful to have in my life!

You know, the issues we battle at home, followed us on vacation, but just like a home we tried really hard not to get hung up on them. Did it mean we skipped the water park? Yes. Did it mean we used Molly's push chair everywhere we went? Yes. But did we  have fun no matter what? We sure did!

This is the heart of my world

And now, we're home. The laundry is all done, and almost all put away. Chris is back to work, the girls are back to fighting as only siblings can, AND they are back to sleeping in their own beds. I am back to my role as I am waiting for a call from the doctor regarding abnormal results on Molly's pre-vacation blood work and doing my very best not to worry and to prep 2 little girls who start a new school year on Thursday. Real life is back in full force!

See - smiles & giggles!

So, while vacation with kids is not about sitting in lounge chairs sipping adult beverages, it's still one of the most rewarding times we get as a family. I do get that we need us time and I need me time, but the girls are only these ages for so long and I've seen way to much loss lately - so I choose to cherish these days as a family and enjoy our vacations together! I hope everyone else got to make happy memories this summer as well!

What a way to end a trip - no pants and a bag of chips!

The Sibling Effect

Feisty Girl

I have been getting extremely frustrated with my 2nd born lately. She's 40 inches of pure precociousness and every bit as feisty. She's affectionately referred to as TURBO or BIG TROUBLE and when she's being sweet, she's our Keddy-Bear. We've tried rewards, we've tried consequences, we've tried kindness and sternness and it doesn't seem to make a change in her behavior for more the 5 minutes at a clip. I find myself being short tempered and extremely impatient with a 4 year old and then I get mad at myself for losing it with said 4 year old! So, I took a step back, and tried to perceive our life through her eyes and not my own. What I found was both comforting and eye-opening at the same time.

They really are best friends

Kennedy is our middle child. Her older sister is 7.5 years old, but functions at about the 4 year old level in a lot of ways. Molly cannot dress herself most days, she cannot shower herself or properly clean herself; bottom line is that she needs A LOT of assistance throughout the entire day. Kennedy's younger sister is almost 15 months and she cannot do anything for herself yet. She needs to be changed, be fed, be bathed and be babied, because SHE'S A BABY. So that leaves Kennedy assuming a lot of responsibility. We expect her to dress herself, to take herself to the bathroom, to help set and clear the table, to clean up her toys and to help her sisters with the things they are unable to do. It totally makes sense to me as the parent and adult. The one who can do, should do and the ones who can't get more help. I looked at this through Kennedy's eyes though, and what I saw was my sisters getting a lot more attention for day to day tasks, being praised when they pulled their pants up or followed a simple command. What I saw was if I refused to do things or cried about them, Mommy and Daddy would sweep in and help - or would they? There was not clear boundaries for what Kennedy can expect from Chris or I. Sometimes we help her, sometimes we make her do it herself - she has no idea what to expect, and so she pushes limits and forces our hand. Something to consciously work on, it wont' be easy, but we can fix it.

Waiting for Molly again

And so my observing continued. Molly has autism as one of her lengthy list of diagnoses. This leaves her unable to play easily with others and often times just playing inside her head. Kennedy will often say to her, "Oh Molly - you're in your own world again". These times, I think - wow, she really gets it. But then seconds later, the Molly, MOOOOLLLY, MOOOOOOOOLLLLLLLYYYYYYY begins and I realize, she just wants her sister to play with her. Kennedy is searching for a way to connect with Molly and just finding road blocks. The game that engaged Molly yesterday, is met with defiance and tears the next day. I know that feeling, I carry it with me as a parent. But, to be 4 years old, learning the ins and outs of social protocol yourself and have to navigate the dramatic responses of someone you've known your whole life, it's a heavy burden and one we need to help Kennedy with more.

Another appointment, waiting for the car

It's been a long summer of doctor appointments and therapies in our house, most times 2 or 3 a week, sometimes more. Most of them for Molly, who's been struggling with an unknown illness on top of her current issues and Kennedy has either been dragged along or left with family members. She has gotten very little time at playgrounds, beaches, swimming pools, at friend's houses. Molly hasn't felt well enough most of the summer to go outside, and so Kennedy has to make due. Kennedy's also begun to vocalize that she doesn't want to do these things alone, not understanding that Molly cannot do them. I'm excited to go to Myrtle Beach with friends and my husband and other kids, because if Molly isn't up to doing things - Kennedy still can. I'm also happy to see the return of the school year. There will be much needed structure for Molly and a whole 3 hours in the morning that are just me with Keddy and Zoey.

alone time at the beach with Mom

I know parenting is difficult. There are choices to make, there are paths to lead them along and there are lessons to be learned by them and us. But, this feels tricky. With Molly, I'm worried constantly. Being her Mom is almost equated with being her nurse and her counselor. There is a lot of hands on stuff needed for Molly and it does take a lot of energy, focus and time. With Zoey, she's a baby - so everything is exciting and special. Each new word or sign, each new thing she does - it's worth rejoicing. And with Kennedy, I feel like a life guard, constantly watching her to make sure she doesn't go too far and hurt herself. Constantly trying to help her express her emotions through language and not whining. And constantly reminding myself that she is only 4.5 years old.

Sassy girl - all of 4.5!

her favorite place - Mommy's lap!

I see her seeking attention; she was singing to herself the other day, and when I didn't react, she says, "I'm in my world today, this is Kennedy's world". I see the frustrations as she screams, whines or cries the minute she's told "No". But I also see the love she has and the admiration as she tells people her sisters name, and as she proudly walks beside Molly's stroller - not even noticing the looks we are getting. Really, I think the weight she carries on her shoulders was made clear to me, when she hugged Molly as we hurried off to the hospital one night and said "be ok, I love you". And so, I know she has been made a better person for having a sibling with such specific and special needs and I know she will do wonderful things with her life. But, I must remember that she needs us as much, if not more then her sisters, because she is special too - in a different way, but definitely special!.

The Molly Renz Symposium

In my perfect world, located deep in my imagination, I have gathered every single one of Molly's specialists in one room and they are discussing and working together to figure out what the heck is going on with my special little girl. In the real world, this symposium occurs in my mind alone as I make the phone calls and emails and doctor's appointments.

Molly's path has had a lot of ups and down. However, she's been struggling for a while now, seeming to be fatigued and lethargic a lot of the time. She appears tired, uninterested, and sick without an acute illness. Back in the middle of June, Molly seemed to be ill. She initially complained of acute belly pain, for which we took her to her pediatrician. Her rapid strep test was positive and we began treating her with antibiotics. She appeared to be getting worse. She was very tired, she started complaining of a sore throat and she just didn't feel good. We changed antibiotics and then we did some lab work. This began on a Friday night and continued until a Wednesday when we ran some labs and found out she didn't actually have strep at all.

It was then the 4th of July and we went to my parent's house for a day of swimming and relaxing. It was just the five of us and the two of them. A quiet day by all accounts. Molly seemed to be having a great time. Then, out of nowhere, she just started sobbing, while in the pool. She was making no sense. We pulled her out of the pool and held her on our laps until the episode passed, which it did. She was very zoned out by this time and shakily made it down the stairs. She then attempted to take a step up to go change and fell twice in the attempt. Her body seemed to just crumple under her. The next day, I emailed her Boston team, but given the holiday weekend, the email went to the on-call provider, who as appropriately concerned and sent us to the local Emergency Room.

We had her evaluated and she had multiple elongated absence type seizures while we were there. It also took them five sticks to get an IV in her because she was so cold - an unusual symptom for her. They decided she had a seizure and sent us home. Apparently there was a mis-communication somewhere along the way and Molly should have been admitted for monitoring.

So, we called, we worked the schedule, we took Zoey in for her Ear Tube and Adenoid surgery and then had Molly admitted that following Friday, July 12th for continuous EEG monitoring. She had some episodes, but apparently they didn't register as seizures. They told us she had diffuse slowing - we're still working on getting the EEG read a 2nd time. Regardless, Molly seemed tired but very content in the hospital.

We came home from the hospital and Molly just seemed to go downhill. She appeared increasingly fatigued and I would even qualify it as lethargic. She doesn't want to go outside, she doesn't want to swim, she just wants to lie on the couch and color. She cries for no reason, she gets really scared for no reason, she's not herself and it's breaking our hearts.

She had some more concerning episodes. One where she just suddenly fell out of a chair, whacking her elbow and sending us back to the Emergency Room, where we were again told she needs a specialist - they just don't specify which one! Then there was some drooling with confused talking and slurred speech with unresponsive pupils. There's a lot of little bits and pieces.

So, we started the route of doctor's appointments.
The Developmental Pediatrician down here thinks she's depressed and her anxiety needs to be controlled. They have not laid eyes on her. They say weekly talk therapy sessions.

The Developmental Behavioralist in Boston, who also didn't see her, thinks she needs intensive autism specific therapy, like really seriously intensive.

The Yale neuro thinks there is definitely some over-arching genetic disorder that we still haven't put together yet.

We saw Our top specialist today, epilepsy at Boston. She feels that Molly is actually neurologically the same and somewhat stable. She is concerned and acknowledges that she seems to be in a slump. The theory is that a little virus back in June, totally through Molly completely out of whack and that the autism symptoms are what we're really seeing. She feels that we need to address what could be behavioral to truly understand what is behavioral and what is something more. She did note a change in Molly's gate and a new posturing of her left hand, but wants to see if this disappears when she comes back to baseline.

We are seeing the sleep specialist next week. We are trying to get in with our pediatrician to help us put this big picture together and help us make sure we aren't missing something. We are working on an endocrinologist to see if any of it is hormonal.

My poor Molly. I feel for her. She has the biggest imagination and talks about all these things she wants to do, but she then doesn't have the energy to do anything. Her lung function is down, per the pulmonologist. She has some sort of confusing central sleep apnea. Her EEG was abnormal, her blood work appears dehydrated - but she's clearly not. She's fatigued, she complains of various ailments. And here I sit as Mom, unsure if I should hug her and comfort her as she cries her eyes out - or if I'm to treat it as a behavior and ignore it.

We worked to get ABA for Molly. This is in home behavioral therapy. Our insurance only covers limited providers, so we went with who we had to. The organization we are working with cannot find a provider in our area and so they want to train us to do it ourselves - but this is so emotional and too hard to decipher what we should do. SO - we'll fight that fight. We'll fight the fight of mounting medical bills, because every appointment and every medication and every therapy comes with a co-pay.

So, you can see why having all Molly's doctors in one room would make life so much easier. We are blessed to have some pretty incredible doctors on her team, but when you parent a special needs child, you must constantly push. You must think outside the box, you can never settle.

I try to remain positive with Molly. She wakes up every morning. She smiles at me most mornings, she hugs me and she can say "I love you Mommy". It's hard to separate how worried you are with what is really happening. And I am forced to take a step back and reflect on what I'm truly worried about. Yes, I'm worried we could lose her in her sleep; she certainly has enough issues and that worry has been addressed. Yes, I'm worried that I won't be able to protect her from hurt, because Molly is  a sweetie who loves with her whole heart and doesn't understand a world that is unkind. I'm truly not worried what people think of her or of us, I know who we are - a family that works together to give our members every advantage possible. I think I'm truly worried that we're missing something, that something else is wrong. I think that's because Molly doesn't fit into any one category. She's a little bit of this and little bit of that with a dash of something else and a lot of curve-balls thrown in. We don't have a specific diagnosis and so we have no prognosis or course of treatment. We blindly pave the road ahead of us as we try to make the best decisions we are able to .

We'll keep walking the road, and I'll try to keep this better updated. Chris and I so appreciate all the thoughts and prayers we've received. We are surrounded by a lot of love, and we can feel it. Thank you for carrying our special girl in your heart. She's truly a blessing.

black eyes, broken glasses, ear infections and meltdowns

 I swear I blog in my head daily, but by the time I get to sit in front of a computer, I'm usually too tired to type a single word and all the emotions, frustrations, and feelings of the day get so jumbled up inside my head - I can't make heads or tails of what I really want to say! So, here we go again...

Things have been crazy around here, as should be expected with three very vibrant and needy little girls taking up residence under the same roof. This leaves one very tired mama at the end of each day, but a happy mama none-the-less. Let's start with Molly.

About a month or so ago we started Molly on the Modified Atkins Diet with hopes that putting her body into ketosis permanently would allow the clarity we saw in her when she was sick with the stomach bug. Modified atkins restricts the carbohydrate intake and forces the body to burn fat for energy. Unlike the much stricter ketogenic diet, MAD doesn't require us to restrict calories or proteins. It seemed to really be working initially. We are working with her doctors and we had all her appropriate lab work drawn. There was an amazing clarity about her in those first few weeks. She heard us, she asked us how our day was, she interacted with us - it was like we were meeting a deeper level of our daughter. It was a happy two weeks - but now we're back to managing behaviors, she's zoney, her attention is that of a ping pong ball, and the meltdowns are  worse then we've ever seen. Today was one of those days. We were the object of the stares in Target as my seven year old daughter alternated between slouching beside me as I pushed the cart and running away from me screaming and crying. She sobbed, she told me she didn't want me to be her mother anymore, she sobbed some more, she refused to get out of the car. It was gut wrenching and broke my heart as she said between the sobs "I don't want to be a brat, I don't want to be bad, I'm so sorry" and then began sobbing and screaming again. We're at a loss....



Tomorrow a specialist from Autism Intervention Specialists will come out to evaluate Molly and develop an ABA plan for home behaviors. Monday we meet with the diet team and a nutritionist. I don't know if it's blood sugar, if it's chemical, if it's the autism evolving, or if she's having seizure activity. All I know is the new Molly we were getting to know is not this Molly, I feel like we've gone backwards about 3 years in the last three weeks and I don't know why. I'm not ready to give up on the diet though - I do feel like it can hold some answers for us, we just need help in tweaking it to work for her. Today was very difficult, but tomorrow is a new day. She may have snapped her glasses in half today, but they can be fixed - I only wish it was so easy to make Molly feel better too....


That's enough right there, but we have 2 more kiddos to consider. Next in line comes Kennedy and every bit of her 4 years. She doesn't like being in the middle or being second. She would much prefer to be first, best, most, and the center of the universe. She was pretty sick for two whole weeks. Fever, cough, swollen glands were just some of her issues. They checked her for strep, for mono and came to the conclusion it was just a bad virus. Part of the reason they checked her so thoroughly was that she has been covered in bruises from head to toe. I mean, I know four year olds fall, but this was ridiculous. Her blood work looked ok though, so we still don't have too many answers. As she was finally recovered, she went back to school and that meant a visit to the playground between her 2:30pm dismissal and Molly's 3pm dismissal. Unfortunately this playground visit also resulted in yet another fall for young Kennedy. She face planted, and once again didn't put her hands down to catch herself. This resulted in a huge goose-egg over her eye which now looks like dark make-up applied to her eye as the bruise continues to darken after 6 days have passed. She proudly displays her "big boo-boo" to all that ask. Next I have to figure out why it is that Kennedy is falling so much.

And not to be left out, my baby girl. Miss Zoey is currently on antibiotics for her 4th ear infection. Since number 3 required 4 rounds of antibiotics, we're pumping her full of probiotics and seeing where we go. If I had a glass ball, I'd say we're headed to the ENT but as the doctor has instructed, we're biding our time. Zoey is making great progress physically and developmentally which makes me so happy. She babbling up a storm and cruising around the furniture. However, I am really concerned that her feet turn in so far they are sideways, it's not normal but again, I'm told to bide my time. We've got a GI appt coimng up, to decide what she'll drink after her hypoallergenic formula. She also has her one-year check-up and a neuro follow-up as well as a repeat MRI in the future. Until then, we're enjoying her new found game of peek-a-boo, bouncing to Mickey singing the hot-dog song, and swaying her hips as she crawls around trying to make sense of the patterns of her big sisters.



And where does that leave mom? It leaves me with a lot of unanswered questions. It leaves me doting on my kids but trying to be that helicopter parent. It leaves me scouring books and websites for ideas, recipes, symptoms, commiserations and deals on outdoor paraphernalia. It leaves me feeling very out of control and thus trying to organize whatever pieces of my house I can manage to do when there isn't a kiddo attached to my leg! And it leaves me with a mix of emotions I'm struggling to work through.

I'm happy, because I have everything I could have ever wanted. I devoted and kind husband who is as wonderful a father as he is a human being. I have three beautiful little girls, who sparkle with life and love and intensely enjoy everything they do. I have a wonderful family who is always there, if not physically, emotionally. I have a home, I have passion, I have love.

I'm angry because I sometimes let myself sink into the "why me pity party". I'm angry that my kids have to fight the battles they do. I'm sad a lot. I feel alone a lot, which seems silly because I'm never alone, but I think that's another whole blog about friendships and my attempt to keep them up, but my apparent failures on that - whoops!

So, yeah, because I'm your mom black eyes, broken glasses, ear infections and meltdowns are just part of my day. And you know what, this past few weeks might have given me some new grey hairs, but I've earned each and every one of them! I love you girls with all my heart and am saying many prayers for patience and understanding.