Teddy’s Surgery Journal, Part 2

I went into this whole thing with less anxiety and worry because, “I’ve been through this before with Fulton! I know what to expect!” And it’s true, I did know what to expect, up to the point where Teddy’s recovery diverged from Fulton’s. The last few days have been humbling for me as Teddy struggles in ways I didn’t anticipate.

Friday

The day started well enough (I even got a smile out of him!), and after morning pain meds, we got Teddy up into his wheelchair for the first time. He lasted for two and half hours before getting in bed and taking a long nap. But later in the day he started having GI issues that were making him really uncomfortable. By Friday night, he wasn’t eating anything, only taking small sips of his drinks, and gagging or throwing up. In addition, something he was on was making his face itchy, and I was constantly scratching his face. Despite everything, he slept well overnight.

Saturday

It was a rough day. He was in a lot of pain around his abdomen; he didn’t even mention his back. He got up in his wheelchair again and barely lasted two hours. By late afternoon, I requested to get him back on IV fluids, since he hadn’t had much to eat or drink since dinner the day before. The doctor agreed and even as some GI issues resolved themselves, Teddy was nauseous and unable to eat or drink much. The doctor offers to give Teddy an anti-nausea drug but I know from the great stomach bug fest that was 2019, that Teddy doesn’t respond to that anti-nausea drug. After Teddy receives pain meds at 8 p.m., I head home and Tony takes over. It’s not a peaceful night. Since the 8 p.m. pain meds made him gag so much, Teddy refuses pain meds later in the night and is up a lot asking to be repositioned.

Sunday

While I’m at home, Tony keeps me updated on Teddy’s condition. I learn that Teddy’s still not eating, not drinking much, and still gagging or throwing up. He also continues to refuse pain medicine. Teddy did get in his chair twice, and spent lots of time driving around the hospital. His drain was taken out, and the bandages on his back changed (which is pretty painful, and the only thing Fulton was sure to warn Teddy about). I arrived and after talking with Tony, we asked to have some pain medicines given to Teddy so he could hopefully sleep better. We opted for medicine with the smallest oral dose, and unfortunately, it still caused him to throw up.

As I write this, I have no idea if he will be discharged tomorrow; it seems unlikely. I packed clothes and snacks assuming I would still be here with him on Tuesday. I hope we can figure out why he feels the way he does. I will update this post when we have a game plan for the next 24-48 hours.

UPDATE: Monday, 4 p.m.

Teddy slept well from 8 p.m. until midnight. He seemed uncomfortable so I insisted on pain medication. He took it and kept it down without gagging, and slept well until 4 a.m. At that point he refused pain meds again, but thankfully he remained comfortable and fell back to sleep for a couple more hours. He was taken off IV fluids around 6 a.m. He’s been in better spirits today and even requested a big breakfast; I thought, “An answer to prayers!!” He only ate maybe a piece of bacon, and drank one cup of OJ, but he didn’t have any gagging or stomach pains afterwards. (He was not a fan of the hospital scrambled eggs and spit them out.) Teddy was up in his chair by 9 a.m. and stayed in until almost noon. He drove around, and enjoyed the Xbox in the teen lounge. We didn’t see the surgeon this morning. I don’t know if we missed him while we were in the lounge, but a nurse practitioner we chatted with mentioned taking off some bandages tomorrow, so I’m assuming we’re looking at a Tuesday discharge. He ordered a big lunch, but once again didn’t like the sandwich he chose and only ate some mashed potatoes. But he drank his entire Gatorade and it all stayed down with no discomfort. While I would like his appetite to increase, at least what he’s eating is finally staying down and not causing him pain. He’s been up driving in his chair more this afternoon, and got another round of x-rays. I can tell his back is bothering him, but he’s still refusing pain meds. I’m not going to insist on anything until bedtime because otherwise, he can’t sleep soundly (and neither do I).

Thank you for your prayers! Please keep them coming. Updated to add – I’ve seen a marked improvement since I published this post last night.

And thanks to everyone who has sent things. He has enjoyed having mail to open.

Teddy’s Surgery Journal

What I realized as I met with Teddy’s surgeon on Monday, was how little I remembered of the technical details related to Fulton’s spinal fusion. I wish I would’ve taken more notes because as we discussed Tuesday’s game plan I was surprised at what I’d forgotten. (Like the fact that Fulton had a small opening left in his fusion so he could continue to receive Spinraza injections via lumbar puncture. Not an issue for Teddy since he and Fulton now take an oral medication.) Most of my memories were related to Fulton’s discomfort and little else. So please forgive all the details in this post. It’s written more for my memory than for my readers.

Tuesday

We arrived at 6 a.m. and Teddy was in his usual spirits. As they explained risks and had us sign paperwork in the ER, most was unfamiliar to me. (We signed documents outlining details of the surgery, its risks, risks of not performing the surgery, and an explanation/risks of blood transfusions, of which Teddy needed one, not surprisingly.) Tony remembered more of it than I did. We gave our last kisses to Teddy just before 7:30 a.m. and they wheeled him away. Tony and I then began the waiting process, or as I told Tony, our last peaceful moment for the next six weeks. I had meal prepped breakfast and lunch for us because I’m trying to eat healthier and also the Shriner’s cafeteria is smaller with a limited selection and shorter hours of operation. I read, listened to a podcast, did some stuff online, walked laps around the floors, while Tony worked. I was happy to see the courtyard “play area” was open. It had been off limits for much of COVID and I was afraid Teddy wouldn’t get to enjoy it during his stay. Tony and I took advantage by playing air hockey, ping pong and shooting baskets. We got calls from the OR every two hours with updates. Everything went well and the surgery was wrapped up on the early side by 2:30 p.m.. The breathing tube came out within 40 minutes post-op, which is great since breathing issues are always a concern when it comes to anesthesia and SMA.

Teddy before surgery.
Teddy after surgery.

But even a successful surgery means a painful recovery. I wasn’t prepared to see Fulton that way, but thankfully, I was ready to see Teddy; I knew what to expect and I knew that he would not remember most of the next 12-24 hours so I didn’t need to beat myself up if I couldn’t make him comfortable or happy. I knew that he was going to be unhappy and while I could adjust, and help him, nothing was going to make him feel 100 percent better right now and thankfully he wouldn’t remember any of it.

Resting in the PICU.

For most of the evening he was acting like an angry drunk, making unreasonable demands and then trying to get away with doing the things we said he couldn’t do (specifically – roll himself into other positions). Then he’d yell at us and pass out. Going through it all before helped me see the humor in it rather than worrying about things I couldn’t change and that were normal to the healing process. Tony and I ate dinner together before he left for the evening.

I was prepared to be up adjusting him two to four times every hour throughout the night and he didn’t disappoint. I knew to expect the alarms, the nurses, the respitory therapists and so I laid down to sleep at 730 p.m. and didn’t feel too awful when I woke up for the day with Teddy around 5 a.m..

Wednesday

A day on hospital time. They started weaning Teddy off different medicines and he was able to try eating lunch. They moved him to oral pain meds vs IV and thankfully he tolerated the meds fine. Fulton experienced a lot of nausea from the pain meds and that created its own set of issues. Thankfully, that has not been the case for Teddy. He passed the day by watching sports commentary shows. I think I will come away from this experience never needing to watch another sports show again. He was moved out of the PICU and into a regular room in the evening. Teddy ate some dinner, and Tony arrived with my dinner shortly afterwards. I went home and got a great nights sleep.

Thursday

More steady progress. Teddy sat up in his wheelchair for the first time for about 45 minutes. His chair needs several modifications to accommodate his new, taller stature. He still needs constant repositioning, and remains uncomfortable. Tony kept me updated through the day while I caught up on laundry, some school things, and phone calls at home. I went to a bookstore and bought a few books for Teddy to enjoy and actually accomplished some Christmas shopping.

As Tony and I run back and forth, my mom has been keeping the house in order, playing as many board games as Fulton, Byron and Edie can handle, and making a steady stream of baked goods.

I came back after supper, bringing dinner for Tony, and I’m settling in for two nights. Even on a regular floor, we can expect visitors at 10 p.m., 2 a.m., and 6 a.m., minimum. Tomorrow’s plan is to get Teddy up in his chair twice. With the right adjustments to the wheelchair, maybe he can even drive around the hallways.

Watching another sports show. I asked him to smile to let everyone know he’s doing better, and he’s still not feeling good enough to smile. He gave his pain as being at 4-5 at this point which seems to be his baseline right now.

Thank you for your prayers everyone! He’s on the right track towards recovery- slowly but surely. I’m hoping to do a blog update on the weekend and discharge early next week. I’m assuming he’ll be heading home on Monday. Be sure to visit Instagram for any updates in the meantime.

It’s Time To Fuse Some Spine!

Welcome to my first blog entry post Seven Quick Takes. I’ll be honest; it was nice to not arrive at Thursday evening wondering what I was going to write about, wracking my brain for ideas and becoming frustrated that I was losing precious sleep in the process. While I was not shocked that many readers were surprised and disappointed by the retirement of Seven Quick Takes, I was taken off guard and humbled by many of the kind comments, messages and emails I got from y’all. Thank you for being such great readers. I’m glad so many of you enjoyed the link up for so long, even as it dwindled and blogging fell out of favor.

The big news this week is that tomorrow is Teddy’s spinal fusion surgery. MAJOR PRAYER REQUEST ALERT!!!! The good news is we’ve been through this before and we know what to expect. We’ve been able to answer Teddy’s questions based on our experience and I personally am having less anxiety. The bad news is we’ve been through this before and we know it’s going to be a long, painful recovery and there’s only so much we can do to make Teddy comfortable. (Read about Fulton’s experience here.)

Our parish friends have set up a meal train, grandparents will be helping out, and I’ve tried to clear our calendar for the rest of the year. I’m hopeful that I’ll be able to just focus on Teddy getting better. I will update here, and maybe Instagram, through the week. We expect him to be in-patient for about a week. If you could pray for the following:

  • That the surgery is successful and there are no complications.
  • For Teddy’s comfort during the recovery process.
  • That Teddy tolerates his pain medication.
  • That Teddy eats and drinks enough post-op.
  • Related to the previous two requests; for no GI problems.
  • That Teddy, Tony, and I can get sleep.

Teddy doesn’t need balloons, flowers, or stuffed animals but he would enjoy getting cards or pictures. If you’d like to send him some get well mail (it’s a great way to get rid of some of your child’s old artwork or earn homeschool art class credit) you can send it to:

Patient Theodore Mantoan 
Shriner's Hospital
3551 N Broad St. 
Philadelphia PA 19140

If you live far away, email me and I will give you our home address as otherwise the mail may not make it to us before we’re discharged. Teddy loves football (especially the Kansas City Chiefs), Marvel movies, Harry Potter, and history (specifically anything related to wars). He’s a big reader so book recommendations are also welcome. His patron saints are St. Anthony of Padua and St. Theodore.

I know Teddy won’t have much of an appetite post-op so I figured I’d let him indulge in all his favorites over the last week. He helped me with meal planing last Monday and picked out all his favorite foods, plus one meal of fast food. We also made sure to get him the sacraments of reconciliation and anointing of the sick. So his stomach and soul are ready to go.

The only meal he didn’t get to pick was for Martinmas. We had our usual duck, and then broke in our new fire pit and roasted up some s’mores. I texted Addie pictures to let her know she was missed and that we were eating lots of delicious food without her.

Hi Addie! How’s that cafeteria food??? We miss you, but now there’s more duck for the rest of us.
Fire pit selfie! Now it’s fall.

Last weekend we also made the decision to start a mid-season fantasy football league. I hadn’t thought of it at the beginning of the season, but when I explained how it worked to Fulton and Teddy, they didn’t want to wait until next year to try it out. Thankfully, the ESPN fantasy site and app let you start a league at any point in the regular season. There’s six of us in the Mantoan family league: me, Tony, Byron, Fulton, Teddy, and my mother-in-law who know more about football than any of us. Fulton’s team is the Roasted Turkeys (“Let’s get roasted!) and Teddy’s team is the Fat Moose (“F-A-T-M-O-O-S-E; FAT MOOOOOOOOOSE!”). It doesn’t really matter what the rest of us named out teams (or chose as our team cheers) after that does it?

I knew Fulton and Teddy would enjoy fantasy football, I just failed to realized how much more annoying watching football would be with numerous family members screaming out random stats and family team scores every 38 seconds. And smack talk. So. much. more. smack. talk. I have not been successful in turning any of this experience into a teachable moment on good sportsmanship. At least we can all agree to dislike the Cowboys.

That’s a wrap for this week. Once again, please remember Teddy in your prayers tomorrow. It’s a long surgery so pretty much any time you think of him, there’s a good time he’ll still be in surgery. I’ll be back with an update soon!

{SQT} This Is The End

Seven years ago this month, I started “filling in” as the host for the very popular Seven Quick Takes link-up. One month later, on December 5th, 2014 I became the new permanent home for Jen Fulwiler’s blog party baby. Seven Quick Takes celebrated it’s seventh anniversary in October 2015 and I celebrated with Link-toberfest. At this point, I have actually been hosting Seven Quick Takes longer than Jen, thought most people still associate the link up with her. At its peak under Jen, Seven Quick Takes would sometimes bring in more than 200 participants. My first week as the official host brought in 101 bloggers. The number has slowly dwindled down through the years and now I have a very devoted group of about a dozen bloggers.

Blogging just isn’t the same anymore. Many bloggers have closed up shop or moved to posting exclusively on social media. Those Seven Quick Takes are now shared as seven posts/videos on Instagram, Facebook, Twitter, or TikTok. We don’t need a link up to bring together those random Takes anymore; we’ve got other ways to share our fleeting thoughts on the internet. And so I am ending the Seven Quick Takes link up. This will be the last week to link up your seven random thoughts.

I have been thinking about this for awhile, but it only seemed fitting to bring things to a conclusion seven years after they began. I didn’t want to pass the link up on to someone else; I fully believe Seven Quick Takes has run it’s course. Certainly bloggers can still organize their random thoughts in seven bullet points each Friday, but I will no longer be hosting the party.

Seven Quick Takes is where I first met many of my blogger friends, and it will always hold a special place in my heart, but the format and date of publication stopped working for me awhile ago. In fact, over the last 2 to 3 years, there were several times I wanted to quit blogging entirely. The only reason I kept going was because I was working on a book and I thought maintaining the blog was important to it’s success. Now that the book has been released, I want to give up that which I no longer enjoy. The need to post every Friday is one of those things. I still plan on blogging, but I don’t want to have an obligation to do so.

Ultimately, I’m glad I kept blogging, even through the rough patches when I wanted to stop. I love having the posts to look back on now, and I want to keep writing and recording all those memories for the future. So don’t worry, This Ain’t the Lyceum isn’t going anywhere. If anything, I’m going to pull back more on social media and compile everything here for posterity. I think I will still occasionally post something deep and meaningful, or random and ridiculous, but I believe this blog will remain mainly a family journal of sorts, with my ministry Accepting the Gift being where I write more “seriously”.

I am definitely still a writer vs a photographer, videographer, podcaster, or influencer. But I honestly don’t know what my future posting schedule here will look like going forward. I don’t want to give up writing, but a personal blog needs to move lower on my list of priorities. If you want to make sure you catch all my posts, regardless of when they appear:

I was going to try to find my seven favorite Quick Takes posts, but I’ve got at least 812 and I don’t think I have enough time to sort through them all. If you have a favorite Quick Takes post of your own, be sure to include it in your Takes this week, or leave a link in the comments below. Thank you to everyone who has linked up with me these last seven years. It’s been my pleasure to host you here on my corner of the internet. I look forward to reading your posts one last time.

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{SQT} October Wrap Up

Happy Friday! How about a round up of everything I’ve done this month besides launch a book and complain? Let’s go!

1. The younger three and I went to Valley Forge…on my 20th wedding anniversary. (Don’t worry romantic stuff later!) I’d been wanting to go for awhile but had waited until the visitor’s center was reopened. There’s a great museum as part of the visitor’s center that I was anxious for Fulton and Teddy to see. It’d been ten years since our last trip there, so none of the kids remembered much, or in Teddy’s case any, of the previous visit. OF COURSE the museum was under construction and off limits, and the ranger had no idea when it would be completed. But don’t worry! The gift shop was open so I could purchase more plastic army men in Revolutionary War apparel.

2. The next day, Tony and I went out to dinner at a great Irish pub we discovered last winter because it offered outdoor dining in plastic igloos. And then we walked on the boards in Ocean City and enjoyed some frozen custard. I was surprised so many businesses were still open, but the boardwalk, while not crowded, definitely had a good amount of people out given that it was a Thursday evening in October.

3. I’m still working behind the scenes at Accepting the Gift. I’ve started doing live streamed prayers on Instagram (vs our private Facebook group), and I’ve discovered a new love of using spreadsheets for project management. I’ve got a great staff of writers contributing regularly, and I’ve got three other projects in the works; a toolkit for parents to teach them how to advocate for their children at their parish, a guide to help parents set up support group meetings at their parish, and I’m hammering out the details on a religious education curriculum that special needs parents can use at home with their children. And I’ve got no shortage of future projects. It’s exciting to watch things come to life, and tough to squeeze them in around everything else, but progress is being made!

4. We’re off school this week which mean costume construction! Byron mentioned to me yesterday that when he got home from the gym the garage smelled like spray paint, “That’s the smell of Halloween!” I’d have to agree. Is it even a Mantoan Halloween if I’m not rummaging in the recycle bin for cardboard and spray painting armor? Costumes will be in next week’s post, but I’ve made great progress this week so hopefully swearing will be at a minimum before trick or treating starts at the way too early time of 4:30 p.m. on Sunday.

Lest you think I’m on my ‘A’ game this Halloween, I should probably let you know we have yet to buy pumpkins. The weather has been very warm, so waiting was smart as carved pumpkins purchased even a week ago would be super gross by now, but we might wind up carving All Souls pumpkins or something…which is probably the more Catholic option anyway.

5. I went out to dinner with a friend I hadn’t seen in forever. We used to take all our kids to Chuck E Cheese during the week. It was always just us and a few moms with toddlers. I used to wonder why some parents hated Chuck E Cheese so much and then I went on a weekend and I was like, yeah this is actually one of the lower levels of hell.

We ate at a fancy upscale restaurant (I believe the kids today call it “bougie”) and talked about how we’ve moved from ball pits and preschool playdates, to college and kids contemplating marriage (her daughter, not mine!). We are the homeschooling veterans, the moms the young ones come to for advice, even though we’re still figuring things out. It was nice to be out and talk to someone who gets life at this stage. She even had me sign her copy of my book, though I don’t think she’d read enough of it to know she’d made an appearance.

6. If you read last week’s post, you know I’ve felt burnt out and over-extended. When I get this way, I usually like to reorganize something. Bringing order to some part of my life makes me feel somewhat better, even as other parts of my life feel out of control. Rather than tackle a room or closet (my usual method), I’ve started organizing the archives of my blog. I’ve got almost ten years of memories on here spread across almost 900 posts. Some of the posts contain family memories, some are useful or silly posts still worth sharing, and others are taking up unnecessary space on the internet (and making it hard for Google to index my site). So working from the first post to the present, I’m ‘no indexing’ most posts, assigning new tags to posts to find them easier, saving others as drafts, and updating the SEO info on posts that are still funny or helpful. It’s not necessary work AT ALL but updating a few posts at a time is scratching the organizing itch and making me feel a bit more together. It’s also been a nice stroll down memory lane. I don’t know what’s more surprising; how much my kids have grown or realizing that for the longest time I blogged three or more times a week.

7. Lastly, I have another adult in the house! Talk about surprising – today Byron is 18! WHAT IS HAPPENING?!?!?!?!

Here’s the Byron I’m familiar with. This is how he looked just yesterday.
WHO IS THIS TOWERING GIANT?!?!?!?

Now it’s you turn. Write down your Takes and link them up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts.

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First Semester Burnout

I think I’m burnt out. Which is discouraging since we’re only nine weeks into this school year. Thankfully, we’re off next week but, for better or worse, I will be busy catching up on everything that’s been slipping through the cracks. I’m doubtful it will seem like much of a break.

Here’s me forcing a smile to show off my new Flannery O’Connor shirt just so this post has some sort of image with it to break up all the whiny text.

I know why I’m feeling fried; I spent six weeks in an intense business accelerator that overlapped with the early start to our school year, and when it ended, I went full into book promotion mode. Plus, I’m still trying to grow Accepting the Gift and put all the info and money I got in the accelerator to work. One week off in July isn’t making up for the 19 months of constant caregiving, homeschooling, and 2,490 extras.

I had a realization early this week while listening to an episode of The Art of Manliness podcast. I’ve been trying to become more efficient through all sorts of productivity hacks, piling more and more on my plate with the thought that, with the perfect schedule, I could do everything. But the insanely obvious message the podcast drove home to me was that that’s impossible.

We then get into the fact that we’d like to do an infinite number of things, but are finite beings, and how this contrast creates an anxiety that we attempt to soothe and deny through productivity techniques. … Oliver explains why engaging in efficiency for its own sake only creates more stuff to do, and why recognizing you can never “clear the decks” of your daily tasks, nor get everything done, can actually help you focus on the things that matter most.

-from the podcast description, emphasis mine

I think what’s still hard for me to see is where I can cut back; what matters most? Homeschooling Fulton and Teddy is time consuming in ways quite unlike homeschooling my older three children and is something we’re committed to through the end of this school year. There’s no “hacking” their education. I’d made a mental note to stop doing book interviews or talks after Teddy’s surgery, but it’s not like I will be able to catch my breath as I know the recovery will be all encompassing in its own right. I’m sure you’ve noticed I can only reliably blog about every other week. Even if I would toss the blog entirely, which I don’t plan to do, it’s doesn’t free up much time. Accepting the Gift is a ministry that could eat up all my time, and grow accordingly, but it’s still something I’m barely fitting into the fringe hours. And of course there’s all the miscellaneous stuff that pops up and devours all the time that I try to meticulously schedule with all those great hacks. If you knew how much time I had to wait on hold over the last three weeks just to get Fulton a new feeding pump you’d understand why that adds to my discouragement. It all seems to be the most important!

I’ve also come to realize that so many of these productivity gurus and the hacks they promote are not designed for anyone except upper-middle-class white-collar business men and women. When another podcaster I was listening to started talking about making time to tackle home tasks in the first half hour after his nanny arrived, or how he planned his trip to the frame shop before preparing for the housekeeper to arrive, I realized that maybe I’m trying to get too much advice from people who have no idea what it’s like to homeschool, care for two disabled children, manage a large family home, run a ministry, and be a writer – sometimes on a very, very tight budget. There was another “expert” who wanted to convince everyone to block their time so they could do their most important work when they were at their most creative and alert. This man no longer did breakfast meetings because he needed to use those peak morning hours for creative work. How many people can build their day around their energy levels?? “Sorry Teddy, this is my peak creative time. You’ll have to wait to get dressed for the day. Maybe the nanny and housekeeper can help you.” It’s why the only time management tips I’ve given are tongue in cheek and require putting kids in cages. (Although, in searching my archives I found a post on fall homeschooling burnout that, while containing good tips, is not really helpful for my current situation AND now has me stressing about the holidays.)

So why am I dumping all this here? Well, because it’s been on my mind a lot and I’m hopeful that at some point down the road I’ll be able to look back on this post and see how I overcame this struggle, which is so minor compared to what many people I know are experiencing. I’m also sharing it because I hear almost daily “I don’t know how you do all you do!” Surprise folks – I don’t know either! All I know is whatever system I’m currently using is making me tired, irritable, and leaves lots of dog hair everywhere that isn’t getting cleaned up on a regular basis. I would not recommend my current system to anyone even if it makes me look “productive”.

The trick is to figure out how to scale back, and enjoy a scaled back life. I am notorious for taking on projects the second I feel like I have an iota of free time. Some of these are very good projects but I simply can’t keep “hacking” my schedule to include everything worthwhile. I think I also tie my identity into much of what I do so that letting something go feels like letting go of who I am, and I need to be okay with that. I am still an awesome child of God even if I no longer do X or Y. My worth is not tied to how much I can do.

Thank you for joining along in this old school blogger rant which is absolutely awful for Google search rankings and Pintrest traffic. (And turning new readers into regulars.) Tune in next week when hopefully I’ll feel perkier and perhaps add a disclaimer to this post, or unpublish it altogether. And if you’re a new reader who just found my blog after reading my book, WELCOME! Please scan my archives and ignore this detour into self-pity. My life is still better than OK and full of joy; I just needed to vent a little.

Now it’s your turn. Share a happy post or your own angst filled tirade. Be sure to include a link back to this post so your readers can come over here and wonder, “What the heck is up with this lady?” I look forward to reading your posts and then feeling guilty about it because I don’t have time for reading either.

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Winner Winner!

Rebecca Enriquez come on down! You’re the winner in my Better Than OK Basket of Awesomeness giveaway! I look forward to mailing you a copy of my book and lots of other awesome goodies! Thank you to Rebecca and everyone who entered.

Full post later. Link up your own Quick Takes posts below!

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‘Better Than OK’ Has Arrived

TODAY IS BOOK LAUNCH DAY! Let me tell you about my book!

Of course I think everyone should run out and buy a dozen copies, but in the words of the great Levar Burton:

via Gfycat

“If Kelly Mantoan wrote a book about watching paint dry, I would buy it, because she’d somehow manage to make it smart and funny and eminently relatable. Luckily, she’s turned her talents to a much more important subject. This book is a must-read for special needs parents, but I would recommend it to any parent who needs a dose of wisdom and encouragement.” – Jennifer Fulwiler, bestselling author and standup comic

“In Better Than Ok, author Kelly Mantoan brings home the innumerable daily challenges of taking care of two physically disabled children with wit and wisdom. Describing her family’s spiritual and emotional journey through the stages of accepting their children’s diagnosis and future, she pulls no punches in the unique struggles and joys that come with this journey. Her raw honesty and practical advice to caregivers of special needs children is refreshing and hopeful. Her witness to seeing the face of Christ in her children is sorely needed in today’s society. I could not recommend this book enough. May we all come to know what a  gift our disabled brothers and sisters are to building the kingdom of God this side of Heaven.”  – Mary Lenaburg, award winning author of Be Brave in the Scared, Ave Maria Press

“Sometimes special needs parents need practical tips. Sometimes we need prayers. And sometimes we just need to know that we’re not alone. Kelly Mantoan’s Better Than Ok provides all three. This engaging new book is a true gift to the parents of kids with special needs and the loved ones who support them.” – Bonnie L. Engstrom, mom of eight and author of 61 Minutes to a Miracle

“Kelly Mantoan gives us a real and honest look at the practical, spiritual, and emotional challenges that come with receiving a serious medical diagnosis for a child. Equally importantly, she shows us that each of us is—with God’s help—capable of corresponding to the graces we need to find joy in a family life that might be different than we expected. A truly important book for Catholic parents of special needs children, and for family members, friends, and members of parish communities who want to better understand and more effectively support them.” – Kendra Tierney, author of The Catholic All Year Compendium

“This vulnerable book shares the reality and beauty of special needs parenting. Kelly Mantoan is the real deal and she doesn’t sugar coat challenges or offer trite inspiration platitudes. In Better Than Ok, Kelly uses her experience raising sons with SMA to guide other special needs parents through their journey as they learn to embrace a life they never expected and yet, find authentic joy as a family. A truly life-changing book.” – Haley Stewart, Author of The Grace of Enough, Podcaster, and Fellow of the Word on Fire Institute

“This book is a gem for all special-needs parents, by turns funny, poignant, and always honest. It’s the book I wish my parents could’ve had when I was diagnosed with cystic fibrosis in the ’90s.” – Emily M. DeArdo, author of Living Memento Mori: My Journey through the Stations of the Cross

RECIPE WINNERS!

For the cocktail that turned out “Better Than OK”:

Sarah Hillaker Davis’ Basil Gin Gimlet (because I was like “Basil???” but then I was like “Basil!”)

  • 2oz gin
  • 1 oz lime juice 
  • 1 oz basil infused simple syrup (Sarah make’s her syrup using basil stems leftover from making pesto, but store bought works fine too.)
  • Combine all ingredients in shaker with ice. 
  • Pour into chilled glass and garnish with a fresh leaf of basil
For the non-alcoholic recipe that turned out “Better Than OK”:

Kathleen Zimmerman’s Almond Bacon Cheese Crostini (All the crunchy things!!!)

  • One french bread baguette (1lb) cut into 36 pieces
  • Two cups shredded Monterey Jack cheese
  • 2/3 cup mayonnaise
  • 1/2 cup sliced almonds, toasted
  • 6 bacon strips (OR 2x MORE) cooked and crumbled
  • 1 green onion, chopped
  • dash salt
  • additional toasted almonds, optional
  • Place bread slices on an baking sheet. Bake at 400 degrees until lightly browned; about 8-9 minutes
  • Meanwhile, in large bowl, combine the cheese, mayonnaise, almonds, bacon, onion and salt. Spread over bread and bake until cheese is melted; about 7-8 minutes. Top with additional almonds if desired. Serve warm.

Congrats ladies! You each get a signed copy of my book! I will be in touch!

Now it’s your chance to win a crazy gift basket of awesomeness that contains:

Enter for your chance to win below! (Yes, some of us are still using Rafflecopter for giveaways. #genxinfluencer )

a Rafflecopter giveaway

When I’m not sipping a basil infused cocktail or reading your hilarious tweets, I’ll be cranking up the polka in anticipation of Saturday’s party. I hope to see some of you there! And just like every Friday, drop your own Takes below. I look forward to reading your posts while in a bratwurst induced trance.

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{SQT} Don’t forget these things!

Who knows the best way to launch a book? If it requires following a plan to the letter and showing your face on social media 50 times a day – not me!!! I’ve waited so long to get to this point, I want to enjoy it and not worry about whether or not I’m “doing it right” but, it’s in my very DNA to stress out about not meeting self-inflicted goals.

Even though my official launch date is October 8, Amazon is already shipping my book, and of course, the Kindle version has been available for a couple of weeks now. People are sharing pictures online and I’m getting some wonderful messages. Thank you everyone. I feel so blessed to not only have the opportunity to share my story, but to do so in a way that can genuinely help parents struggling after the diagnosis of their child.

In you kindness, please, please, please, leave a review on Amazon or share the book on social media. It’s the best advertisement I can get, especially since the rate at which I’m sending out press releases is embarrassingly slow.

Now just a few updates and reminders! First, I decided to open up my live Q&A session to any, and everyone, no need to preorder. Join me on my Facebook page on Thursday, October 7th at 8 p.m. EST. If I think I can swing it, I will be live on Instagram at the same time trying my best to look into two cameras at once. I will read some bits from the book and obviously answer questions. I look forward to chatting with y’all!

Next, I extended the deadline for the Better Than OK cocktail and recipe contest. You now have until October 4th to submit your cocktails and recipes that turned out better than okay! And I get more time to try making everything myself!

I don’t need a reason to mix up a crazy cocktail, but it’s probably good that I have one for once.

My book release party is now officially going to be an Oktoberfest. If you’ve read my book, you know there is a pretty poignant moment that happens at an Oktoberfest. Giving my book party this same theme really brings my journey full circle (and gives me a reason to play polkas and serve pretzels.) Besides, once I mentioned the idea to Tony, the event budget magically increased! Please buy tickets by October 4th so I know how much beer and pretzels to have on hand. And if anyone has a dirndl I can borrow, contact me so we can get that overnighted, please and thank you.

It’s an Oktoberfest and a book signing- clearly the high point of my life. (Pretend all those images are of German things.)

The giveaway basket is growing! Next week on my book’s official launch date, you’ll have a chance to win not only a signed copy of my book but:

Lastly, I had a fun evening Thursday night when I attended a local fundraiser for Good Counsel Homes. Liv Harrison was speaking and Good Counsel is such a great cause, it was a no brainer. Plus the venue is fantastic. I was blown away by just the appetizers. (As I consumed wedge after wedge of fancy cheese, it was obvious to everyone that it was the first time I’d been out in awhile.) Liv, of course, gave a super awesome and inspiring speech and I even had the pleasure of meeting one of the founders of Good Counsel, Christopher Bell. (The other founder is the late Father Benedict Groeschel, who I’ve also met.#namedropping) The best part of the evening was when one of the mothers who’d been helped by Good Counsel told her story. Although the number of women and babies helped (and saved) by Good Counsel is small compared to the number of abortions performed each day in our state, it’s still encouraging to hear from the women who made the courageous choice to keep their child when they had no help and support, and to see how Good Counsel stepped in and helped them overcome all the odds and become successful mothers.

How was your week? Write it down then link it up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!

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Why You Shouldn’t Say “Special Needs”…

and why I put the term in my title anyway.

I know the majority of my readers are not the parents of disabled children, and so you may be wondering what the point of this post is. You’re probably completely unaware that there’s actually a controversy over the use of the term “special needs” in regards to disabled people and their parents. I myself only became aware that special needs was an offensive term to some a few years ago after I started following more disabled adults on social media.

In general, following adults in the disablity community opened my eyes more widely to ableism and the discrimination that disabled people face on a daily basis. I decided in order to be a better advocate for my sons, I had to make sure I wasn’t holding onto any inherent biases against them because of their disability. Plus, I needed to listen to the voices of those who fight for disability rights in order to raise sons who can learn to fight and advocate for their own needs as they get older.

What disabled people would like us to say is the word disabled with either person first or disability first language (so either a child with autism, an autistic child, or a disabled child or child with disabilities). So if I’m trying to do better, why would I put “special needs parents” in the subtitle of my book?

Because most of the people who will buy my book are not aware it’s an offensive or outdated term. For parents whose children have just been diagnosed, the term special needs is the one they will most likely be typing in the search bar as they scan Google for help. In a lot of ways, it’s familiar and a lot less scary than identifying their child as disabled and themselves as the parent of a disabled child.

In time, most parents of disabled children reach a point where they are willing to listen to and learn from disabled adults. But so long as we have the terms Special Olympics and special education, special needs will be common parlance in the English language. And while it’s good to work towards using the language that disabled people prefer when we talk to and about them, it’s certainly not the first thing that the parents of a disabled child need to learn within the first few months, or even year, following their child’s diagnosis. In fact many parents of disabled children will hold onto the title special needs regardless. But rather than berate or belittle them, I hope that through my writing ( and by exposing them to disabled adult voices), I can help them make that transition in due course.

So that’s a short explanation. I think most disabled adults would probably prefer I don’t use special needs in my title, or when describing my ministry Accepting the Gift. I get that, and I hope to educate parents of disabled children to make the switch, but until mainstream society and media changes course, I need for parents to be able to find me, and right now I know they’re still searching for “special needs” because that is all they’re familiar with. It’s my hope that by sharing a look at a part of the disability community my readers may be unaware of, I’m helping more people choose their words more carefully. (Order my book HERE.)

For more information on this topic check out the following posts:

Now link up below! Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts.

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{SQT} Book Party, Book Chat, and Book Inspired Food

Eighty copies of my book finally arrived at my house this week! Everyone in the house was excited for me for all of 60 seconds before asking what was for dinner, what were we doing that night, did schoolwork need completed before screen time, etc. It was a nice 60 seconds.

We went down to Ocean City Monday evening to enjoy the boardwalk. I picked up some local goodies to send to Addie and I dominated Edie in air hockey at our favorite arcade. On one hand I feel like I didn’t have time to spend an evening at the beach since I’m woefully behind in so much, but on the other, I feel like if I don’t intentionally plan these things, they’re less likely to happen on their own anymore.

I think I’ve already officially given up on the new math curriculum I selected for Fulton. The problems? Neither of us enjoy the review games, and the “tricks” it teaches for memorizing facts are no easier for Fulton to use, or for me to explain, then him just practicing with flashcards. We’re not starting with the lowest level, but the level we are starting at assumes we know all the unique methods taught in the previous books. Since we don’t, I need to figure everything out and then it’s not really a review lesson for Fulton but something new that needs more practice. Lastly it wanted me to teach Roman numerals with 4 being represented as IIII not IV (the correct way being taught in later lessons) and just…no. So it’s back to Abeka at our own pace and I have more books to list for sale.

Book Signing Party!

In between Logic discussions and Latin arguments (so much fun on both fronts), I’ve started planning some fun book stuff starting with a book signing party at my house that I’m opening up to all my friends and followers! (The introverts in the house are thrilled beyond measure.) I know it may be far for some of you, but to anyone close by or willing to travel, you’re invited to join in the fun. It won’t be the First Things office or the Yale Club (instead we’ll be hanging out on our new patio under, I think, tents? Still hashing out details…) but there’ll be drinks, food, books for sale, and hopefully some fun swag and prizes. I’ll give a short talk or a long toast and hopefully Tony will pick a playlist that doesn’t upset the neighbors. I’ll sign books, pose for selfies, and at some point between now and then come up with a creative hashtag for the event. Buy your ticket in my Shop. I hope some of you come out and help me celebrate! I’d love to meet you!

A Special Event For Those Who Preorder My Book (Updated: now for all!)!

I’d been looking into creating some preorder bonus items, but honestly, I don’t want to wind up mailing a bunch of stickers or temporary tattoos (“Kids come here! Today for physical education we’re licking more envelopes!!”) and with my limited free time the only downloadable items I’ve been able to make time to create are a few bookmarks which are hardly going to sway someone who wasn’t already seriously interested in making the purchase. (“Hmmmm…I don’t know if this book is a good fit for me, and I’m not familiar with this author at all, but it says here if I preorder I could get four hastily designed bookmarks to print on my own printer like a sucker; what am I waiting for!!!”)

That being said, I will be holding a live Q&A session on Thursday, October 7, at 8 p.m. EST with (Updated: EVERYONE!) anyone who has preordered the book! If you’ve preordered Better Than Okay, email me your order number, and you’ll be emailed information on how to submit questions and join in on the 7th. I’m looking forward to reading a bit from the book and answering your questions!

A Copycat Contest!

I’ve also planned a Better Than OK cocktail and recipe contest! I loved the Something Other Than God cocktail contest Jen Fulwiler held years ago, and I wanted to shamelessly copy it. But knowing that not all my readers drink alcohol (looking at you Jenny from the Church of Jesus Christ of Latter Day Saints), I thought I would add a recipe option too. The idea is to present a cocktail or food recipe for an item that turned out not just okay, but surprisingly better than okay. I’ll share my favorite recipes in my Quick Takes on Friday, October 1. Winners will get a free, signed copy of my book, and some other goodies. (Lisa Frank stickers anyone???) Submit your recipes to me before UPDATED: before October 4 for consideration. Recipes with hilarious back stories and equally ridiculous photos get bonus points.

Another reason for exclamation marks!!!

On Friday October 8, my Quick Takes post will feature a giveaway of not only my book, but a gift basket of items from other parents of children with disabilities. I’m still actively looking for authors, crafters, and business owners who fit this description to help fill out my basket, so drop me a line if you want to provide an item. If I get enough items, I’ll offer more than one basket.

Keep an eye on Instagram, Facebook, or your inbox for my newsletter with reminders and more details about my book as the release date approaches. IT’S GOING TO BE SO MUCH FUN THAT BY OCTOBER 10TH EVERYONE IN MY HOUSE WILL BE TIRED AND ANGRY WITH ME!!!!!! Don’t you want to be able to say you contributed to that??? Sure you do!

While the anticipation builds, you can write down and link up your own Takes below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!

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Little Takes

I created a huge, beautiful spreadsheet detailing everything I need to do to successfully launch my book by October 8. The only thing I couldn’t come up with? A topic for this week’s blog post. So just a few Quick Takes in the mean time.

First, know that the NIGHT OF DESTRUCTION was just as epic as we anticipated. A Crown Victoria dominated in the first round so now I want us to trade in our Corolla for a car that can take repeated hits and keep destroying everything in its way. I’m also thinking it would be great if someone could build a power wheelchair as durable as a Crown Victoria.

We celebrated Labor Day by HAVING A REGULAR SCHOOL DAY. Mwahahahaha! Tony was off work, Byron didn’t have classes, and Addie was off so we got in a video chat. Tony also grilled ribs so that made the day a bit more special than usual.

On Wednesday, Byron passed his road test, so now I have another driver. He was working on parallel parking non-stop the last few weeks, and even the test administer was impressed. I know I wasn’t as nervous as Byron was, but my stomach was in knots during the whole ten minute test. These teen milestones are wonderful and utterly ulcer inducing. Edie turns 16 in December and the process will start again….sigh.

I’m finalizing some preorder goodies, working on scheduling a few live online events, compiling items for a giveaway, and planning a special signing event. Details will go out to the newsletter first; sign up here so you don’t miss out!

Not much else to report! I’ve got four baskets of laundry to put away, school work to grade, and a to do list that only grew during the week despite crossing off several items. Need something else to read? Order my book on Kindle!!! You can also write down your own Takes and link them up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!

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{SQT} This Week Wound Up Being Better Than OK

Because I write my takes chronologically the most important Take is at the bottom so be sure to read to the end!

My goal last week was to get a Quick Takes post up sometime Friday evening, however just before 5 p.m. I got a call that let me know my apostolate Accepting the Gift would not be moving on in the OSV Challenge. I decided to spend the rest of the evening being sad instead of writing. I also decided to wallow most of Saturday. After Mass on Sunday I started feeling better so that by Monday after the 12 finalists were publicly announced I didn’t feel too upset any more.

Taking part in the OSV Challenge was a wonderful opportunity, and I learned so much. Accepting the Gift is definitely in a much better position now to help people than it was before I took part in the Accelerator (which was the “business education” part of the Challenge). But yes, I’m disappointed. I really believe my apostolate is worthy of a $100K grand prize and more than anything I’m frustrated that I failed to convey that to the judges. But onwards and upwards! I have a lot of ambitious goals for the next year so I can’t spend anymore time feeling sorry for myself. If you want to help Accepting the Gift grow, we’re still hiring writers and outreach coordinators. Both are paid positions and are crucial to our mission. Learn how to apply HERE.

In addition to finishing up and submitting everything for the Challenge judges early last week, we also started school. Two weeks in now and so far so good. I realized at the last minute that I hadn’t uploaded as much of Edie’s assignments to her Google classes as I thought, but after a little last minute scrambling all is well. I have not had to buy any forgotten items, although Fulton is asking that I please purchase the audio version of Story of the World Volume II as he doesn’t like the way I read the chapters. Even when I try really hard to sound like Jim Weiss, the boys are not impressed.

We were supposed to go to Lancaster for a Monster Truck show last Saturday (belated birthday present for Fulton) but our van’s wheelchair lift suddenly started leaking hydraulic fluid rendering it useless. Just as useless is the system by which our repair shop gets its parts. They ordered a replacement hose on Monday and told us it would arrive on FRIDAY. I can Amazon Prime up all kinds of things in 24 hours. Why does it take a week for a hose in Indiana to arrive in New Jersey? Thankfully the lift was repaired this Monday and we can go to Lancaster this weekend for the NIGHT OF DESTRUCTION demolition derby which sounds just as epic as the Monster Truck show.

Our first demolition derby show. Hopefully its drier this year and Edie looks less miserable while we’re there.

On Tuesday we had our home inspection by the Office of Licensing. Passing the inspection is the next step in becoming foster parents. We did not pass for a bunch of minor things, so we will be inspected again in a couple weeks. But the biggest surprise of the inspection was learning that even with the space, we cannot foster a baby. The reason? No home can have more than two non-ambulatory children in it. I was aware of that, but for some reason I thought that meant we couldn’t take a third child in a wheelchair. However I learned on Tuesday that because babies can’t walk, we can’t foster them since Fulton and Teddy can’t walk either. This seems completely ridiculous to me. We also learned that even though the upstairs bedroom is huge and easily fits three beds and closets, because of the slope of the ceiling, it’s only “legal” for two children. So anyway, this has changed our plans a bit. I’m looking at fostering (and adoption) as a long term thing. Even if right now we can’t do much, going though this process now and keeping up to date on our license means that as our kids move out we can consider other or more placements. It’s not an absolute thing we can only do right now in one very particular way. Edie was most disappointed that we can’t foster a baby girl but I told her we’re wide open to fostering and adoption- we’re literally doing everything we can to make it work. If it doesn’t, it won’t be for lack of trying, so we just need to trust its not meant to be. When and if it is, it will happen.

FINALLY – my book is available for preorder!! AND purchase if you want a Kindle copy! Clicky click for your own copy!

I’ll be honest, it’s sort of anti-climactic because for some reason Amazon is not showing the cover image for the paperback copy. You can view the inside, but you can only see the cover when you select Kindle. Hopefully, this will be remedied soon. In the mean time, order now so you can get a copy in your hands the moment it drops on October 8th! Or download it to your Kindle and get a jump on everyone else! Be sure to leave a review. Preorders and reviews are how Amazon determines what books to share with other shoppers so I super appreciate your help in this department! I want to offer a bonus to anyone who preorders the book, but I’m wondering what y’all would prefer? Drop a comment below. Right now I’m thinking maybe giant stickers of my face? Or cocktail napkins? Clearly I need some help.

I’m going to be putting all my free time into promotion now so please forgive me if my book is all I write about for the foreseeable future… at least until Teddy’s surgery in November. Then my priorities will shift again for a bit. But I do have some fun ideas; maybe a virtual cocktail party/ Q&A session? A giveaway or two? And maybe I can even get a few safe in person events planed where we can all meet up. Have a book club or group that needs an author speaker? Let’s chat! Hit me up on my Contact page.

It’s been years in the making and it’s almost here! Time to forget how painful and arduous the writing process was and PARTY.

Got some exciting news of your own? Write it down then link it up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!

You are invited to the Inlinkz link party!

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