June 14, 2016 by Deb - Mom of 3 Girls
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I know I say this every year – as does every other parent of a school-aged child, but really? Where did this school year go?
It seems both like yesterday and also so far away that we sent the girls off to three separate schools for the first time. Juggling kids in high, middle and elementary school while having a child undergoing intensive chemotherapy treatments, trying to keep up with work and other commitments… Somewhere in there I lost a few months, but coming out of the other end of the school year – so much has changed.
Most importantly, Hannah is finished with chemo, and you’d never know by looking at her now what she went through just six months ago. When I look back at her school photo from September, she was so thin and tired (and bald, of course). She’s gained back both weight and color, and has the cutest hair style (although plans to grow it back out). She maintained her grades throughout seventh grade – the child has never gotten anything below an A in her life. And she made a few new friends, but has also kept the strong friendships that have helped support her through everything she’s endured.
Abbi not only survived her freshman year of high school, but she finished the year with her very first straight-A report card, ever. She’s always had at least a B or two in there, and at the beginning of the year we really worried about her ability to study effectively and keep her grades up. Over the months, she found her stride and her place – she absolutely loved marching band last fall and can’t wait for the upcoming season as a sophomore.
With Hannah finishing treatment, we turned our focus to Becca during the second half of the school year and began some testing to figure out how to help her get along with others better, hopefully make (and keep) some friends, and help her learn ways to cope with her emotions. She is very bright, but doesn’t always slow down and work to her ability, but she also ended her fourth grade school year with straight A’s, so we know that she’s got the academic part down. We just need to help her with some strategies to put the rest in place so that she can have a happier fifth grade experience.
We managed to keep up with all of the activities that the girls wanted to participate in, although logistics were often a challenge and we are so thankful that we are a two-vehicle family now. Abbi participated in both varsity marching band as well as varsity robotics – both of which are very time-consuming and challenging. Hannah took on not only soccer, but also Science Olympiad, Art Club, and church youth group. Both girls continued in Job’s Daughters, and Becca was initiated this year as well, once she turned ten. Becca also played soccer and participated in Lego League and Girls on the Run again.
I’m not sure that we’ll take on quite so many activities next year – both Abbi and Hannah have already said that they want to back off a bit. But seeing what they can accomplish even when they are extremely busy makes me know that these girls can do anything they set their minds to. I just need to be able to keep up with them, which isn’t always easy. As Hannah finished treatment and grew stronger, I started losing myself, and really haven’t come completely back yet. Spending almost an entire year in ‘survival mode’ took a lot out of me, and I’ve just been finally learning how to live our new normal again over the past few months. There’s a level of fear and worry that I never really lived with before – knowing that her cancer came back once just makes it that much easier to imagine it coming back again. We hope and pray that it won’t, but there are no absolute guarantees, so the worry will never truly go away.
But for now, we’ll just enjoy the first days of summer vacation and look forward to having a sophomore, eighth grader and fifth grader in the fall. The summer will zoom by quickly enough too – as they always do.
May 30, 2016 by Deb - Mom of 3 Girls
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Last month, my girls and I had the opportunity to take a road trip down to Orlando, FL for my annual TravelingMom retreat. We really enjoyed the time together both on the road and at the parks – especially since the girls are older now and much more self-sufficient.
For three nights, we had the opportunity to stay onsite at the Disney’s Grand Floridian Resort, located next to the Polynesian Resort, right on the Seven Seas Lagoon near the Magic Kingdom. Afterward, we moved off property to the Wyndham Lake Buena Vista Disney Springs Resort (Wyndham LBV), located adjacent to Disney Springs. The Wyndham LBV is technically not a Disney resort – they are an independent Disney partner hotel operating on Disney property, so they are able to offer many amenities. They are also the closest hotel to Disney Springs.
The two experiences were very different in many ways – but we definitely enjoyed both properties. Here’s a quick look at what we enjoyed about each one and what we felt were challenges about each property. Note: Yes, we were hosted and/or given a media rate by each property, but be assured that these are our honest thoughts and opinions.
There are a slew of reasons why a Disney resort is a good idea – and just as many dollar signs why it may not be the best fit. There are budget resorts at Disney as well, but offsite hotels can still cost even less, depending on when you’re traveling. Do your research and determine what your budget is, which features and amenities are the most important to you, and see what will be the best fit for your situation and your family.
Putting the ‘Grand’ in the Grand Floridian…
The Grand Floridian resort (designated as a Deluxe Disney resort) is designed around the Victorian style, reminiscent of Main Street USA in the Magic Kingdom. The property does feel like an extension of the Magic Kingdom in many ways – it’s only one monorail stop away and you can view the Wishes fireworks directly from Grand Floridian without having to navigate the crowds. They offer a large Disney store on-site, live entertainment in the lobby, two separate pool areas, a small beach area, spa and health club and multiple dining options.
We stayed in the Sago Cay building, facing the monorail. Although technically our room was listed as ‘Outer Bldg – Garden View’, we could see the lagoon as well. The room was a good size and offered a balcony with table and chairs. I worried that the monorail might be noisy, but it didn’t bother us at all, even at night. This building was a bit of a hike to the Beach Pool area – it’s the farthest building from that pool. My girls found that they actually preferred the closer Courtyard pool though, as it was less crowded, had a hot tub, and was deeper than the Beach Pool. They actually never made it over to the Beach Pool at all during our stay, even though they did swim quite a bit. There are daily activities for kids as well as movies every evening over in the beach area, but the activities seemed a bit young for my teens and tween so they didn’t check them out at all during our stay. They pretty much preferred to just be in the pool as much as they could anyway.
The room itself was plenty large enough for the four of us – and the rooms do sleep five, so if my husband had come along we would have still fit and slept everyone comfortably. There were two queen beds plus a day bed and everything was extremely plush and comfortable. The room also had a mini fridge, which was very helpful since we brought food with us so the girls could eat breakfast and lunch right there while they were on their own, to help save on costs. We had space enough to spread out and we definitely enjoyed all the little ‘Disney’ touches in the room as well. I appreciated that the bath/shower and toilet were separated from the sink/vanity area so that we could easily have someone in the shower while someone else was brushing their teeth.
Our stay here was during my retreat, so the girls were on their own for much of their time at the Grand Floridian. I was glad that there was a monorail station right on site so that they could easily get to the Magic Kingdom or Epcot (with one monorail transfer) on their own – there’s also direct boat transportation to the Magic Kingdom, but we didn’t use that at all on this trip. The girls spent time in the parks and back at the resort, both hanging out in the room and at the pool. They also watched the Wishes fireworks from the small courtyard between the Sago Cay and Sugarloaf buildings – the view here is perfectly lined up with the Cinderella Castle. We did not eat at any of the on-site restaurants, but took a walk through the Gasparilla Island Grill casual restaurant and there were definitely options that even my pickiest eater would have enjoyed there.
Self-parking is free at all Disney resorts. Valet parking is available at the Grand Floridian for $20/day. I used the self-parking, which was a slight walk but not too bad. There were plenty of spots available. The girls and I arrived around 2:30pm and our room was ready for us, although other TravelingMoms did have to wait for their rooms.
Some of our favorite things about the Grand Floridian:
- Not only did Concierge bring our bags to the room for us from our vehicle, but they gave us a golf cart ride to our building along with a guided tour of the resort. This really helped us get our bearings as well as give us tips like where to watch the fireworks for the best view. The cast members in general were all extremely helpful and polite.
- The ease of access to the Magic Kingdom and Epcot on the monorail, plus free bus transportation to the other parks or Disney Springs.
- Multiple pools for the kids – if mine were younger, they would have loved the offerings at the Beach Pool. As it was, they really enjoyed the Courtyard Pool.
- Being able to avoid the crowds at the Magic Kingdom while still viewing the fireworks and the electrical boat parade in the lagoon.
- This resort sleeps up to five – not all Disney resorts do, which can sometimes make things difficult for our family if we’re all traveling together.
- Because it’s a Disney resort, everything is tied to your Magic Band – it’s your room key, plus you can use it to charge items to your room, so there’s no need to keep track of a separate key or bring cash or credit card into the parks with you. You can also have packages delivered straight to your room.
Some of our ‘not-so-favorite’ things about the Grand Floridian:
- The resort is very spread out, so there’s a decent walk to get wherever you want to go. This isn’t a deal-breaker by any means, but when you have your hands full of heavy grocery bags late at night, or have tired kids who’ve already been walking through the parks all day, it can be somewhat annoying.
- The more kid-friendly Beach Pool was crowded and noisy during the days, so my kids avoided it altogether.
- Although there are a variety of dining options, it’s still all rather on the pricey side, at least for the very budget-conscious.
Easy Access to Disney Springs at the Wyndham Lake Buena Vista
When we moved over to the Wyndham LBV, I was curious how it would compare to the Disney properties that I’ve stayed at both on this trip and in the past. As part of my TravelingMom retreat, I did tour the property and have the opportunity to see both sections – the Wyndham Tower Lake Buena Vista and the Wyndham Garden Lake Buena Vista. This is essentially two hotels in one – the Tower offering a more deluxe room style and experience at a higher cost, while the Garden rooms are less expensive and outside-facing, with more of a ‘motel’ design. Both share the same lobby, pool area, dining options and amenities.
Our room was in the Tower, on the side facing Disney Springs. The view was gorgeous – and we were told that we could even see the Epcot fireworks directly from our room, although we were out late both nights so weren’t able to experience that for ourselves. We could see the signature Epcot Spaceship Earth sphere from our room at a distance, which was pretty cool in itself. The room was comparable in size to the Grand Floridian and also offered a mini fridge. This room only slept up to four however (with 2 queen beds), so if we’d had my husband along, we would have needed a second room to fit us all there. The sink/vanity, tub/shower and toilet were all together in one room instead of separated like at the Grand Floridian. There was no balcony or outdoor space.
The pool area had my kids excited from the very moment they saw it – there are two pools adjacent to each other, plus a hot tub. My girls actually preferred the pools here to the ones at the Grand Floridian – the pools were deeper and more spacious, and not nearly as crowded. I spoke to the Wyndham’s Director of Fun – they offer daily crafts and other activities as well as Disney pin trading. Since this hotel is technically on Disney property, it does have an official Disney store on-site, as well as a fitness center and tennis, basketball, and volleyball courts.
The Wyndham offers complimentary shuttle service to the parks every 30 minutes via bus. We took the shuttle to Epcot in the morning and then returned from Hollywood Studios that night. The shuttle service was very quick and easy to use – it picks up and drops off right in front of the hotel so there’s minimal walking required. You can also easily walk over just a short distance (about a quarter mile) to the Disney Springs transportation area and take the free Disney Transportation shuttles to the parks if you prefer.
We ate breakfast on-site at the Lakeview Restaurant – this is a full buffet that offers large Mickey waffles as well as a character breakfast (on Tuesdays, Thursdays and Saturdays). The breakfast buffet was pricey but we enjoyed all of the options, especially the waffles. The girls spent some time hanging out in the lobby and were thrilled to enjoy pastries from Joffrey’s Coffee & Tea Co. at the Sundial 24-7 café, which also offers self-serve snacks and beverages at a very reasonable price. We ate breakfast there on our last morning before heading out – it was quick and easy, and the girls thought the giant-sized pastries were a lot of fun to eat.
The Wyndham Lake Buena Vista is truly within easy walking distance to Disney Springs. There’s a pedestrian bridge over the busy roads that lets you down right at the edge of the Disney Springs shopping and dining area. I walked over there twice during our stay – first with the other TravelingMoms to enjoy lunch at Splitsville Luxury Lanes and then again with my 13-year-old to quickly grab a ‘must-have’ gift only available at the Marvel store for one of her best friends. Both of these destinations were at the far end of Disney Springs from the Wyndham, but not only was it an easy walk with plenty to see and do along with way – it’s very possible, if you’re in a very big hurry, to walk to the Marvel store and back in about 35 minutes flat. And yes, I speak from experience on that one (and Hannah owes me big-time!).
There is a charge for both self and valet parking at the Wyndham Lake Buena Vista – however, they cost exactly the same ($8/day), so I happily utilized the valet parking. The valets were also wonderful about bringing the vehicle back up for me when I needed to grab something that I hadn’t realized we would need during our stay and then re-parking it afterward. Our room wasn’t ready for us until around 5:00pm, so we did have a bit of a wait – but we grabbed our swimsuits from our luggage that was being stored for us and spent the afternoon at the pool.
Some of our favorite things about the Wyndham Lake Buena Vista at Disney Springs:
- The view of Disney Springs and Epcot from our tower room, both during the day and at night. Waking up and being able to see the Epcot Spaceship Earth sphere out the window from my bed was an unparalleled experience for sure.
- The quick and easy Sundial 24-7 café made grabbing snacks and drinks a breeze without breaking the bank.
- The inexpensive valet parking. Enough said.
- Multiple pools for the kids – they swam in and enjoyed both during our stay and I had to drag my youngest out so that we could get on the road at a reasonable hour when we had to check out.
- Easy walking distance to Disney Springs – the girls walked over there on their own while I was busy with retreat activities. Disney Springs is free to wander around – they spent time at the LEGO store as well as the Marvel store, plus enjoyed exploring the rest of Disney Springs.
- Having a Director of Fun on-site to plan activities and pin trade with kids.
Some of our ‘not-so-favorite’ things about the Wyndham Lake Buena Vista at Disney Springs:
- The rooms don’t accommodate a family of five, so we would need two separate rooms if the whole family came together. The Tower does offer adjoining rooms – the Garden section does not.
- This isn’t a Disney resort, so Magic Bands don’t work. You have plastic card keys for room access and can’t charge items to your room by using your Magic Band.
The ‘big’ question – how do they compare in cost?
Regular room rates for the Outer Building – Garden View room type that we had at the Grand Floridian start at $569/night. This is the least expensive room option at this resort. Disney does offer specials and deals on their resorts, so it’s worth watching to see if a lower rate is available during your travel times.
The regular room rate for the Tower Room – Disney Springs View room that we had at the Wyndham Lake Buena Vista varies depending on when you’re staying. I found a rate as low as $89/night for this room by searching the Wyndham website for an upcoming weeknight. They also offered a ‘Kids Eat Free’ rate of $94/night for the same room on the same night, which gives you the breakfast buffet free for 2 children 11 & under with 1 regular price paying adult. This does include the Disney Character Breakfast on Tuesday, Thursday, and Saturday mornings.
I would definitely recommend watching the rates and checking for deals, whether you plan to stay at a Disney resort or an off-site one. There are so many options for just about every budget, so determine what you’re looking for and see what is the best fit for your family and situation.
Where would we stay next time?
To be completely honest, I would absolutely stay at the Wyndham Lake Buena Vista again the next time we head down to Disney World. You get plenty of the ‘Disney’ experience, there’s easy transportation to and from the parks, and even though parking isn’t free, you get valet parking at such a reasonable cost that I don’t mind spending $8/day at all. My kids liked the pools there better, plus everything is closer together without requiring a long walk between buildings or amenities. There were quick snack food options much more reasonably priced and I loved the personal feel of having the Director of Fun right there onsite to help kids have the most enjoyable time possible. I’m not sure we would make the effort to take Disney transportation over to Disney Springs otherwise, so having it in easy walking distance is great and gives us a free option to enjoy some Disney magic without the park crowds when we need some down time.
There is something to be said for the ‘luxury’ feel and grandeur of the Grand Floridian though, so I’m very glad that we had the chance to experience that. If costs were equal, I would definitely consider staying at a Disney resort again for the easy park transportation, magic bands and extra perks that Disney resort guests get (such as the extra ‘magic hours’ in the parks) – but for me, the experience and perks don’t always offset the higher room cost. Two adjoining rooms at the Wyndham would give us more space and accommodate our whole family and still probably cost less than one room at the Grand Floridian.
Note: There are plenty of budget Disney resorts available – I haven’t personally stayed at any of them, so can’t speak to how they could compare to either of the properties discussed here. Check out TravelingMom.com for more reviews of available properties to stay at while visiting Disney World, both on and off-site, as well as plenty of other helpful Disney World tips and information.
The post A Tale of Two Resorts: Disney’s Grand Floridian & Wyndham Lake Buena Vista appeared first on Mom Of 3 Girls.
May 2, 2016 by Janet Callahan
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March 29, 2016 by Deb - Mom of 3 Girls
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Now that we’re through the mess of a year that was 2015 and Hannah is through with her intensive chemotherapy treatment, we’ve had the chance to focus on some other areas that had gotten largely ignored for a while. One of these is my youngest daughter, Becca.
When Becca was younger, she was a pretty typical toddler and preschooler. She got along well with everyone and we were relieved that she didn’t seem to have the social issues that Abbi had struggled with at that age. However, as Becca has gotten older, we’ve begun to notice some things that she either hasn’t outgrown the way we thought she would, or that are more glaringly obvious when you compare her to other kids her age.
I’d always felt that Becca had some tendencies toward ADD – she finds it almost impossible to sit still unless she’s intensely focused on something, and even when sitting on our laps has always squirmed and wiggled. She is very unorganized and doesn’t pay attention to where she puts things down, so she is constantly losing items and has no idea where. When she was younger, we compensated for this with lots of reminders, labeling items, attaching her mittens to her coat – and I found out when she was in first grade that the bus driver would routinely run her lunch in to the office after Becca had left it on the bus in the mornings.
I also wondered if some of the social issues we noticed with Becca had to do with the fact that she spends a lot of time around Abbi, who we know is somewhere on the Asperger’s/Autism scale, albeit very high-functioning. I figured that Becca was simply picking up social cues from Abbi, but over the past year, we’ve noticed things that go too far beyond what that simple explanation would account for. Now that Becca’s in fourth grade, the gap between where she is at socially compared to the other kids her age is widening.
Last fall, as I was tucking Becca in to bed one night, she began to cry and began telling me that she has no friends, the other kids tease her, and she doesn’t know why. We knew that she doesn’t really have any close friends, but her third grade teacher last year said that she seemed to get along well with all of the kids. This year, that hasn’t been the case. With Hannah and Abbi already in therapy for chemo-related stress and issues (Hannah) and anxiety/panic attacks (Abbi), it wasn’t difficult to add Becca in, and she’s been seeing the therapist every 2 weeks since. She loves the therapist, and especially loves the hour of uninterrupted one-on-one time with an adult where she is the focus of attention. She craves attention, so this is right up her alley. The therapist has been working with her on role playing and trying to work through why she doesn’t seem to fit in with the other kids.
At Becca’s well-child checkup, we also began doing some of the initial screenings for ADD and other things. They referred us to a child psychologist and he had us complete additional screenings. After three visits with me and Becca, plus going through the screenings that Ron and I completed, along with Becca’s teacher, the psychologist feels that there are two things at play, either one or both.
First, she scores high on the autism screening for what used to be called Asperger’s and is now referred to as ‘Mild Autism’. This didn’t surprise me at all – although she does fit some aspects of Asperger’s, others don’t’ seem as close of a fit, especially when you compare her to Abbi. The second thing that the psychologist mentioned is something I’d never heard of before – it’s called NonVerbal Learning Disorder (or NonVerbal Learning Disability), other wise known as NLD.
I was confused at first – NonVerbal? She doesn’t have any trouble talking at all – in fact, sometimes it’s hard to get her to stop talking. But when it was explained to me, it made perfect sense. Kids with this disorder have difficulty in picking up on the nonverbal social cues that most of us take for granted. We can easily tell when someone is joking or being sarcastic or being silly, because we read their nonverbal cues without even realizing it. But a kid with NLD doesn’t know how to interpret those cues. This is why Becca takes everything we say very literally. She also isn’t able to easily take her experiences in one situation and generalize them to know how to behave in a different, but similar situation. This is why new situations make her nervous and why she can’t handle stressful or emotional situations in books and movies easily.
Now that Becca is older, she can see that she’s different – that other kids easily joke and laugh together, while she doesn’t. She knows there are these social cues and rules that she doesn’t understand, but she doesn’t know why she doesn’t understand them, and that makes her anxious and frustrated. At school this year, her teacher has tried putting her in seat groups with just about every combination of other kids but it wasn’t until she let Becca be a ‘loner’ and sit in a desk that’s not grouped with others that Becca has had an easier time at school with no meltdowns. She works better in groups when it’s only part of the time instead of being forced to socialize with other kids all day long.
Academically, she’s doing well, which is a great thing, but we are starting to see her grades fall slightly. Our school doesn’t start using letter grades until fourth grade, so we don’t have previous years to compare her grades to. For the first trimester this year, she got all A’s and A-‘s. The second trimester just ended and she brought home an even mix of A’s and B’s. Still good grades, but we don’t want to see that downward pattern continue. Becca is one of those kids that rushes through her work to get it down and considers ‘done’ good enough, rather than done well. She doesn’t seem to understand what the point is – it’s either ‘done’ or it isn’t. Her thinking is very concrete and black-and-white, with no greys, which is also typical of NLD, I’m discovering.
The traits of a person with NLD are (I’m quoting directly from this page, except for my comments in bold):
- Has trouble recognizing nonverbal cues such as facial expression or body language Yes, this fits Becca very well.
- Shows poor psycho-motor coordination; clumsy; seems to be constantly “getting in the way,” bumping into people and objects I don’t trust her to drink from an uncovered cup at a restaurant still at age 10 – she doesn’t seem to understand where her body is in space or pay attention to what’s around her.
- Using fine motor skills a challenge: tying shoes, writing, using scissors She doesn’t have much of a problem with these, other than that it took her longer than ‘normal’ to master them.
- Needs to verbally label everything that happens to comprehend circumstances, spatial orientation, directional concepts and coordination; often lost or tardy I see some of this in her, but not to a high degree. She does label or ‘correct’ things that she hears someone say that’s incorrect or she wants to make sure they understand what the ‘correct’ thing is. This comes across as being disrespectful to adults or those in authority but it’s more a matter of her need to make sure her world is in order.
- Has difficulty coping with changes in routing and transitions Yes, but not to a high degree
- Has difficulty generalizing previously learned information Yes, very much so
- Has difficulty following multi-step instructions Yes, this has been a struggle since she was small. We have to break everything down into small tasks and be extremely specific. The example that I always give is that I can’t just tell her to ‘go wash your hands’ – I have to not only specify that she needs to use soap, but I have to also tell her to use water too, or she’ll just wipe her hands on the towel and think that’s good enough.
- Make very literal translations Yes. Very specific and literal.
- Asks too many questions, may be repetitive and inappropriately interrupt the flow of a lesson Yes, she doesn’t understand the ‘ebb and flow’ of conversation and interrupts a lot. If she’s thinking or feeling something, she can’t let it go and will ask incessantly or complain over and over, even if there’s nothing we can do right then to fix the situation.
- Imparts the “illusion of competence” because of the student’s strong verbal skills I wouldn’t call her verbal skills ‘strong’ – she does have speech issues as well. And she tends to speak quickly and slur her words together so that she’s difficult to understand. If you’re defining ‘strong’ verbal skills by quantity rather than quality, this fits her to a T.
Essentially, she does well enough to get along ‘well enough’ in most cases, other than socially. I see her with kids her own age at school and at Girls on the Run practice, and she does stand out to me there. She wants to fit in so badly, but just has no idea how.
I see a lot of reading and research in my future – the psychologist gave us a book to get started, and I’ve been looking up information online too. We have one more appointment with the psychologist next week, and he’ll give us his recommendations then. That may include a referral to the hospital’s ASD (autism) program too, for further screening and possible diagnosis there. Many times NLD and autism (of varying degrees) co-exist in the same kid – there are so many similarities between a high-functioning person with autism and one with NLD, which is probably one reason that we see Becca having a lot in common with Abbi, but not fitting exactly quite into that description.
Becca’s 10th birthday was in January. After 2 months of delaying, we finally held her birthday party last weekend. We delayed in part for financial reasons, but more so for the fact that there weren’t any clear cut ideas of who to invite – she really doesn’t have any close friends. We finally ended up inviting one little girl from down the street along with two girls from school (who are in the other fourth grade class, not Becca’s class) and took them to an indoor trampoline park. They jumped and ran and ate pizza and it seemed to go really well, which was awesome to see. Becca had a blast.
Hopefully with all of this testing and determining, we can come up with some strategies and solutions, so that next January there won’t be any question of who to invite to her 11th birthday party.
February 18, 2016 by Deb - Mom of 3 Girls
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It’s been a while, hasn’t it! Since I’ve posted on either of my sites, that is. I last posted on momstakeonthings.com last October and it had been much, much longer ago for this site. I recently decided that I needed to recombine and put everything back into one place. One blog. Just me, writing whatever strikes my fancy.
I decided to go back to my roots, essentially. Back to writing for the joy of it – which is why I started this site in the first place. So it makes sense to bring it all back here. I’ve imported the posts over from momstakeonthings.com – all of the important ones, anyway. I’ve also brought over the knitting-related posts from my short time writing at Just Casting On as well. So yes, everything is all here. I kind of feel like I’m coming home in a way.
I can’t guarantee how much I’ll post – the writing bug has left me over the past few months, but so far this post is flowing well, so we’ll see. My momstakeonthings.com site now forwards directly over here and the email@example.com email is also defunct. You can reach me at debmomof3(at)comast(dot)net.
Yep, it’s good to be home.
December 30, 2015 by Kelli
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The space that was once my therapeutic safe space has turned into a space I look at and occasionally dread. It is an awful feeling when a source of comfort turns into… darkness.
This is my life right now.
I fight for comfort. And yes, Momma still needs a beer, but not necessarily because of my children anymore. BWHAHAHA!! OK… sometimes.
I do have to put a little alcohol on it because of my chronic condition. My cute little tagline has become reality, and whether that’s something you find to be “a problem” or not… it works for me. Not every day. Ok ok… sometimes! Geez. Moderation is everything. But… other than Valium, the pills don’t always work. Also — Botox. I’ve had to undergo surgery 5 times this year for trigger point injections in my pelvic floor, and will be spending New Year’s Eve in the hospital — kids and all! Wheeeeeee!!
Pass the damn alcohol.
Because of my chronic condition without a cure, I’ve had to come to terms with a few things. First of all, find the joy. Find the fucking joy. Where’s the joy? What joy can I find in this shit?!! What CAN I do?!!
Ok: I “get to” watch a hell of a lot of tv in bed. Many people might even consider that a “luxury” — being “stuck” in bed because I can’t sit or stand for long periods of time without excruciating pain. I might have, once upon a time. I don’t as much anymore — but I don’t recall a time in my life when I’ve ever felt “bored” — even now.
I still find ways to be active within my community when I can. Writing, social media marketing, event planning, singing, volunteering, etc. Because, ya know what?! I’m not dead. I can do much of the above from my bed, from my laptop or smart phone, and still do when I can. Want to hire me? Email me — let’s chat. Momma’s got some medical bills to pay. HA!
When I’m not doing much of the above, I’m juggling family life, appreciating my kids’ laughter, music, art, stories, etc. They are my reason for living. Goodness, I’m SO lucky they are good to me. I’m not saying that to brag at ALL. They can be little shits like every kid. But can I freeze them at 7 and 11 please?!!! The sweet things they say and do for me make me burst into tears! Joy.
My friends are also an incredible source of joy. They check in with me and just… get it. They drag me out when I need to. And damn it — I DO need to get out — as much as I’d rather stay home and hide under the covers sometimes, going out for a beer with my friends and feeling like ME again means the world. The hubs doesn’t think I drink nearly enough.
My condition will not define me.
Finally… when I am in the cusp of those lonely isolating moments — I turn to my old pal television. We cut the cable cord earlier this year; I thought it would hurt, but it only brought me closer to my old friend. I’m now commercial free and LOVING it!! TV has always been there for me. As I grew up, I belly-laughed with my dad though Roseanne, Carol Burrnett and SNL sketches.
Today, I nostalgically dive through Saturday Night Live clips with my kids. They have fallen in love with Wayne’s World, Brian Fellow’s Safari Planet, and anything with Jimmy Fallon, Amy Poehler and Tina Fey. This goes beyond SNL to the wonderful world of Parks and Rec, though we haven’t dove into 30 Rock… we’ll get there.
My kids also love to watch The Goldbergs which is nostalgia HEAVEN for an 80s kid like me. If you were born in the 70s and haven’t watched this comedy GOLD… please do yourself a favor and just pick and episode or two and GO. I have yet to watch an episode and think “eh.” I love them all — and it’s hard to find a sitcom I can enjoy WITH my kids. A lot of them can be cheeseball — or just too many sex jokes. Nothing in between. The Goldbergs — somehow — have managed to find that middle ground. Thank you!
For me… having to say goodbye to Parks and Rec and Mad Men this year was a bit painful. They were my friends. Leslie Knope and Ron Swanson? Pals. That Peggy Strut was EVERYTHING. I always felt Joan Harris was my spirit animal — and the episode of The Christmas Waltz will forever make me wonder “what if” for a second between Don Draper and Joan… before I pull back and realize — it’s every platonic friendship I’m grateful for.
This is my life. I haven’t even mentioned how many times I’ve watched episodes of Ab Fab, or… goodness — Gilmore Girls as that IS my go-to comfort food. I am Lorelai Gilmore after-all. Except, instead of coffee… I need beer (or, rather — add beer to my coffee needs) instead of Luke’s, I go to Bob’s more than a gal should. The rest? Fairly spot-on.
I know. I’m insane.
Bare with me, I haven’t written therapeutically for awhile… but really, the places we go to find comfort shouldn’t be judged. Especially if we are suffering in one way or another. What else can we do? If we don’t laugh, we’ll cry. We long for joy and comfort. Nostalgia seems to fit the bill. Look at television these days… even current shows are going BACK to the old days to tap into our nostalgic haze. Many of the shows that I watch don’t take place in present day. When I’m not watching my “present-day” shows like Scandal or Transparent I go to Netflix or Hulu for my commercial free fix of something like… iZombie which is practically a reboot of Veronica Mars! I mean… come on — nostalgia at it’s finest.
The movies have been doing it for years. How many sequels and prequels can one movie have? Look at Star Wars?! JJ Abrams — I love you. You’ve not only reinvigorated a series FROM THE 70s, but you made me want to rewatch Alias! You can’t tell me Rey wasn’t in some way inspired by Sydney Bristow!! GA!!
And look at Lin-Manuel Miranda!! Hamilton!!! I’m obsessed. My daily soak in the tub wouldn’t be complete without reliving the last two decades of the 1700s through a hip-hopera. WHAT?!! Talk about nostalgia. Immigrants: they get the job done. Don’t know what I’m talking about? Download the soundtrack, my friends. Omfg.
My point, and I do have one — is that we all have to find our bliss in some way shape or form. For me — there are days I can’t leave my house because I’m in so much damn pain. It sucks. But I can’t just sit and cry and scream about it. Ok, some days I totally do!! But what the hell good does it do?! I used to feel better writing/venting about it… until the last couple of years — now I can almost count on an inbox full of judgy hater trolls after hitting publish wondering if I’m writing about them, among other choice words. Uh… No? I’m generally venting about… LIFE, people. This used to be my sacred space… doesn’t Tina Fey have a new rule about not apologizing for her jokes? I should look into that.
Because… talk about blowing a funny writing fuse.
The point is… I am writing now. I don’t know if I will continue to write in this space… but I’m writing today. It does feel good to share and spread awareness.
Know that if you are suffering from a mental or physical illness, you are not alone. I am suffering. I may never be cured. I am working on treatments. I am working on getting through each day. I am so grateful for those who talk me through it. Who hug me through it. Who don’t judge me for my genuinely happy posts on social media and just… get me.
I may never be “better.” But I’m trying. I’m still me. I’m powering through the best I can. Embracing the joy… and my beer! This chronic illness doesn’t have a cure, but I refuse to let it define me. And I appreciate those of you who still see the real ME behind the illness more than you could ever possibly know.
October 29, 2015 by Deb - Mom of 3 Girls
Filed under Uncategorized
I’m supposed to be happy right now.
After more than nine months of intensive chemotherapy treatments, my 12-year-old daughter is nearly done and the end that had loomed so far ahead as to seem unreachable for so long is finally almost upon us.
I should be ecstatic, jumping for joy, more than ready to resume our ‘normal’ lives again.
So why is it that all I feel lately is numb?
I AM happy – for my daughter, who is kicking cancer to the curb and not looking back. SHE is feeling everything and all of the above that I know I should be as well. And she deserves every moment of joy that the idea of just being a normal almost-teenager brings to her.
And yet, I am exhausted. Physically. Mentally. Emotionally. Spiritually.
I don’t even know if I know how to live a normal life anymore. Is there even a ‘normal’ left once the word cancer worms its way in to your life? The chemo may be almost done, but there’s a lifetime of worry ahead. Maybe someday this will all become commonplace enough that I will find a way to not let it consume me, but now that cancer has struck its way into my family’s heart – twice even – it doesn’t feel like there’s any going back to the anxiety-free, naïve life I lived before.
Hannah has faced cancer two times – and she is incredibly brave, and strong. She is also a pre-teen girl, so there’s no shortage of drama, attitude and eye-rolling as well. She now hates doctors and hospitals with a passion that I can understand, if not endorse. I only hope that someday she’ll be able to reconcile the good they do with the upheaval they have brought into her life.
There is no escape from the fact that for the rest of her (hopefully very long) life, she will always be a cancer survivor. With scans and tests in her future, and the potential for late-term side effects, recurrences, or even a secondary cancer, to emerge at any time.
She and I will both need to learn to live with the newest normal our lives have brought to us. As the parent, my job is to take on all of the worry for her, for as long as I possibly can. I only hope that I am even half as strong as she is, so that I can bear it all for both of us, without breaking.
Even though I already feel broken.
October 5, 2015 by Janet Callahan
Filed under Uncategorized
I learned that yet another trach mom I know has to face an unbearable truth: her child died.
Yet again, due to negligence. Or a nursing error. Or whatever nice words the agency and the police plan to use to explain it away.
Always, it's "an accident" and "accidents happen" and they're not really liable for anything that went wrong.
Except, you know, they are. Nurses are licensed professionals. The agency is covered by insurance, and licensed and accredited. They are supposed to be the help that families of complex kids need - it's not like we can take a child with a trach to a mainstream daycare (they'll tell you their license and insurance don't cover that kind of care, and they aren't trained).
And these kids are fragile, and you should have expected that sooner or later, they'd die.
Except, you know, there's dying from their condition, and there's dying from a caregiver choosing to do something that leads to death.
But what you find out over time is that not all of those nurses have as much training on trachs and ventilators and feeding pumps as parents are required to have to take their child home. That their training in meds is not always what you'd hope (like the lady we had who charted that she'd given both an albuterol inhaler, and a nebulizer, in the same 1 hour period). That their understanding of the job is less than you'd expect - like the ones who think working nights means they get to come to work at your house and sleep, instead of monitoring your child while you sleep.
And if you can't trust these professionals who are sent to your home to be helpful, and to care for your child.....who can you trust?
I'm weary. We've been trach free for good for about 15 months now, and I've left most of the groups that are trach related because I can only handle so much drama. But....these things travel back to me, and we're there all over again.
I hug my kids every time it happens. Because what else can you do, other than think "it could have been us."
September 30, 2015 by Candi
Filed under Uncategorized
September 29, 2015 by Candi
Filed under Uncategorized