Homecoming!

Ray’s Home!

After eight weeks in Grand Rapids in neurological rehab, Ray has finally come home. Here’s a how it went down…

welcome home dad
Yes, one of these kids is not my own. ;)
We Had a Week that Could Have Been from that Fiery Place Below

First off, I’ve been suffering from a terrible cold that has only affected me (worn down as I am), and has made most of my nights sleepless due to uncontrollable coughing. I tried everything, but for two weeks straight I was lucky to get four hours of sleep each night.

I drove my sleepless self to Grand Rapids Sunday, so that I could
learn Ray’s routine and get the recommendations for his ongoing therapy. I returned home  Tuesday evening, and woke up Wednesday morning to two sick kids. Hand, Foot and Mouth Disease didn’t strike Boo too badly but it left Little Man beside himself.  My sweet little baby wouldn’t stop screeching, and wanted to be held constantly. He didn’t want to eat or drink. Nothing made him happy.

Wednesday night, a tree fell on the power line running to the house, and we had a partial electrical outage. No A/C. No oven. No big deal.

No well pump. Ergo, no running water.

No toilets.

No way.

Electrical Outages Can Actually Be A Blessing

kids in hottubWhen you are a single mom with five kids, two of whom are sick, a lack of electricity running you out of your house and into the arms of your loving mom and dad who happen to have a pool is actually a blessing.

Mom and I took turns attempting to keep Little Man happy, while the other kids swam and played. It made for a far better day Thursday than the one I had planned, which was filled with work and cleaning.

The Big Day

Friday, still sleep-deprived, I left early to make the four hour drive upray at going away party to Grand Rapids. Again. There was a farewell party for Ray, a few last minute details to cover, and his room to pack up. Then, I turned around and drove the four hours home, arriving in time for the steak dinner Ray’s mom had waiting for us.

Of course, Little Man wouldn’t stop screeching. I had to remove him from the house so Ray could enjoy his welcome home dinner. Brain injury and screeching babies do not agree with one another. But, my trip to Walgreens to get Epsom salts was rewarded with a half hour long happy bath time (overseen by Bonita while I ate my dinner), and a happy baby at the end of it all.

Praise God.

God is Good

If you recall, just before Ray went to Michigan, I was about to lose it. I have a few things on my plate these days, and helping Ray with his at-home therapy had fallen off the plate and landed – SPLAT! – on the floor. His time in Michigan was a much needed opportunity for him to get the services he needed, while giving me a break from the stress of my inadequacies. (I say that with total healthy self-love. None of us are perfect.) It was also a time for me to prepare mentally and spiritually for his homecoming, and to get used to the idea of living by a schedule… something I’ve always known the value of, and which is vital to the well-being of a brain injury survivor, but that I – quite frankly – totally suck at.

I prayed a novena of total surrender to Jesus, finishing on the day Ray came home. Undoubtedly the best thing I could have done, and I’m grateful that it appeared when it did, an answer to a prayer.

Two Days of Life on a Schedule

I can’t say we’re sticking to it 100%, but we’ve done pretty well. The most important part is keeping Ray active, and we’ve definitely done that. He would love to take a three to four hour nap every day, but the schedule “simply doesn’t allow it.”

Proof that Big Families are a Blessing

ray and z on bike rideHaving five kids and a brain injured husband can be difficult to navigate. Very. To begin with, brain injury does not get along well with noise, chaos, and craziness. Add to that the myriad of kids’ activities, competing wants and needs, and trying to meet them all as a “single parent,” and a big family could quickly be seen as a curse.

But, thanks be to God, this weekend we have seen the blessing of theray and ike doing legos big family. The kids have – unbeknownst to them – become Ray’s therapists. Dude took a bike ride with me and Daddy Saturday morning. Bear did Legos with him in the afternoon. Ray played Battleship with Bonita, and played games of pool with Dude and Bear at my parents later in the day. All excellent forms of physical, occupational,ray playing pool or cognitive therapy for Ray, and a great way to keep the kids busy, thinking, and off their devices.

Here’s praying that we can continue this into the week!

{SQT} Seven Questions You Were Maybe Thinking of Asking

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(I wrote this post Friday morning but my blogging software wasn’t letting me upload any photos, and I know everyone loves photos, especially of my (dare I say it) ADORABLE kids. Hence the fact that I’m posting this “Seven Quick Takes Friday” post on a Tuesday!)

Here’s what I wrote on Friday…

Once again, it’s been too long since I’ve posted, and once again, I’m going to cheat and do the quickest and easiest post possible… a 7QT post! This time, I’m just going to answer a few of the questions that I think you might be thinking of asking!

Question #1: What have you guys been up to?

I am pleased to report that I am writing this post from the basement of my bestie Stephanie… in Pennsylvania! Stephanie and her family moved out here five years ago, and this is our first trip to visit them, so I’m pretty stoked. We’ve climbed a mountain, hiked [a very small portion of] the Appalachian Trail, played in a fjord, walked through a huge field of boulders, done hibachi, and drank a few glasses of fermented grape juice. It’s pretty much been my ideal vacation, minus one thing…

The whole PA gang, outside the scenic railway station in Jim Thorpe, PA
The whole PA gang, outside the scenic railway station in Jim Thorpe, PA

Question #2: Did Ray come?

I know your next question: Did Ray come???!!! Well, no, unfortunately, he couldn’t, since he’s still in neurological rehab in Michigan. I’ve struggled with this, I’m not going to lie. And I know he’s struggled with it too. I keep telling myself that I’ve been hoping to do this for years, and I always figured that I’d visit my friend Stephanie as a “girls trip plus kids” anyways. But it would have been much easier if Ray had been back home, working, hanging out with friends, playing golf, etc.

The reality is that Ray would not have enjoyed this trip. Climbing mountains, jumping around on boulders, and wading through fjords are not really in the cards for him right now. But that doesn’t take away the tinge of guilt I feel constantly, or any of the emotions I’m sure he’s experiencing, either.

Question #3: Are you crazy?

Yes, probably. I drove from visiting Ray in Grand Rapids all the way to eastern PA with five kids. The map app said it would take ten hours. It took twelve.

Question #4: Did you kill any of the kids?

Um, no. Actually, I hardly even came close. Well, there was the time when I was letting Little Man stretch his legs by “driving” the car while the older two boys helped me clean the windshield. Not realizing the consequences, one of the boys opened the driver side door while Little Man was leaning against it. Gravity took over. Mommy freaked. Little Man cried. Boy-who-opened-door cried. But once the initial scare wore off, everyone was fine.

The other time that I “hardly even came close” to killing one of the kids was when the boys were fighting over the space in the backseat. No one died, and I didn’t even end up pulling the car over, as I had threatened. Ultimately, I resorted to bribery – a remarkably effective tool. I now owe two kids five dollars, one kid four, and the least well-behaved (for this particular drive, anyways) gets to walk away keeping three of the five dollars that were originally on offer.

Question #5: So, how’s Ray doing?

A selfie of the two of us from several weeks ago, when we visited beautiful Frederik Meijer Gardens in Grand Rapids.
A selfie of the two of us from several weeks ago, when we visited beautiful Frederik Meijer Gardens in Grand Rapids.

He’s doing very well, thank you for asking. I know that being away from home is tough on him, but the reality is that the noise level and general craziness at our house when all five kids are home over the summer would have been a lot for him to handle. He’s accomplished both of the goals which he set for himself in early February – to be able to run and to swing a golf club. I’m pretty sure the “running” has been very limited and not something he should do without his physical therapist present, and he says that his golf swing needs a lot of improvement, but considering how lofty both of those goals seemed four months ago, their achievement is definitely something to be celebrated.

 Question #6: And, how are you and the kids?

We’re good. Ray’s being in Grand Rapids is a little bit like the good ol’ days,

Kids walking the Appalachian Trail in PA
Kids walking the Appalachian Trail in PA

when Daddy was on a business trip – he’s just gone a “bit” longer, and we’re traveling nearly every weekend in order to see him. The kids have enjoyed the travel, even if I’ve nearly lost my mind over it at times.

During the weeks, I’m working a lot, either promoting my book or building up my little freelance writing business in order to fill the gap left by long term disability insurance. We’re blessed to have a friend who loves the kids and watches them pro-bono, who also has kids that mine love to play with… and access to a pool. I’m also blessed to have something I’m good at and love to do (writing) that can help provide for our family.

Question #7: Isn’t God amazing?!!

Well, yes, yes, he is! It never ceases to amaze me how God provides for our needs. Just when the summer was looming ahead of us, and I knew having the kids and Ray home at the same time would be a challenge, God provided an awesome opportunity for Ray to go receive intensive therapy, in a quiet, peaceful, and scheduled environment. When long term disability threatened to cut our income significantly, God provided new clients and book revenue to fill the void. He provided a friend to watch the kids, and he’s even provided new friends in Grand Rapids to help us feel welcome and comfortable in Ray’s home-away-from-home.

What’s especially remarkable is this: If we didn’t have a cross to bear, we would be much less aware of these abundant blessings.

 

Here are some more photos. Unfortunately my crazy blogging platform is turning some of the photos around and then won’t let me fix them. Having spent WAY too much time on this, I’m posting them anyways. You’ll just have to tilt your head to the left. Ha.

Ray with Matt, our new God-given Grand Rapids friend.
Ray with Matt, our new God-given Grand Rapids friend.

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Me with my beautiful bestie. What a blessing she is!

Evan in fjord small IMG_3223

Mary on boulder field mailed

Mary Lise and Isaac hopping around the magnificent 13 acre boulder field
Boo and Bear hopping around the magnificent 13 acre boulder field

For more Quick Takes, visit This Ain’t the Lyceum!

Rehab, Radio Shows, and Book Signings… Oh My!

While I’d love to fill you in on all of the blessings of the past month, the kids will be awake and needing attention far too soon for me to do it all justice. Instead, I have a few urgent (but happy) things of which I ought to make everyone aware!

First, I would be remiss if I didn’t let everyone know that we have been incredibly blessed to be able to send Ray to a neurological treatment program in Grand Rapids, Michigan. This is something we’d been working on since January, and the approval from the insurance company finally came the very day after I wrote my “This is Not a Hot Mess Pity Party” post. Yes, God showed me that I needed to cling to Him, but – once again – he also showed me that He provides. Ray needed more attention, and I couldn’t give it to him. The battery of therapists and doctors at Hope Network can!

I would be even more remiss if I didn’t include this photo of the cuteness that just woke up
to bless me with his presence:

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And people say we shouldn’t have had five kids. Geesh. What would the world be without this sunny little guy?

One exciting bit of news is that I’ll be appearing on not one, but two, radio shows tomorrow (Thursday, June 9th). The first is at 10 a.m., with Allison Gingras of “A Seeking Heart” on Breadbox Media. I was on Allison’s show in February (you can listen to it here), and I guess you could say that I’ll be “back by popular demand!” Allison and I will be discussing the latest happenings in the Engelman family, faith-filled summer activities for kids, and God’s awesome Providence. I’ve been wanting to write a blog post on that topic – how God has provided for us so beautifully through these last six months – and, since I haven’t found the time to finish that post, I feel blessed to get to share it on radio instead! You can listen live from your computer, or via the Breadbox Media app, which is by far the most convenient way to listen to radio ever! You can also listen to the podcast at any time after the show.

The second radio show is “Faith in Action” with M.J. Krauter, a local Indianapolis show on Catholic Radio Indy. M.J. and I will be discussing A Single Bead, the story of how I came to write it, and how the foundational principle of prayer helped me through our family’s recent difficulties. You can listen to it live at 3:00 tomorrow afternoon on FM 89.1 or 90.1, depending on where you are in the Indianapolis area. Or, you can listen live via your computer here, listen to the podcast here, or via a radio app on your phone like TuneIn Radio.

Finally, I’m very excited that I’ll be a part of the author panel at the Teen Book Fest at the Barnes and Noble at Jefferson Pointe in Fort Wayne this Sun Saturday! I don’t know the times yet, but will update this post as soon as I do. I do know that I’ll be there chatting with readers and signing copies of A Single Bead, and I hope that many of my Fort Wayne friends will stop by to say “hello”!

As you can see, I’m keeping busy! All in God’s Providence… but you’ll have to listen to “A Seeking Heart” to get the full story! :)

UPDATE: The event at Barnes and Noble will actually take place on SATURDAY, not Sunday! I’ll be there at 3:00, giving a short talk and then answering questions and signing books. It’s a part of their Teen Book Fest, which is going on all weekend!

 

This is Not a Hot Mess Pity Party

So this was supposed to be the post that I had half-written last week, when I was writing the update on Ray’s recovery. But it’s funny how, in the blink of an eye, everything can change and the “I’m doing okay but dang this is a lonely business” post changes to an “I’m a hot mess and I can’t stop crying and there’s no way I can possibly do everything I’m supposed to do and I am having a hard time seeing the good things in life right now” pity party.

Let me start by saying that I think I’m past the hot mess pity party, or else I probably wouldn’t be writing this post. I hate whiners and, while I might whine to close friends and family, I do try to keep it off the internet for the world to read. So, while this might start out negative, I do promise to end on a positive.

IMG_9986.JPGSo here’s how it goes. Last Thursday, I’m coasting along, having had a remarkably good day on Wednesday. In fact, Wednesday night I posted on Facebook, reflecting that I had actually achieved all of my critical “to-do’s” for the day. Of course, when I realized that I had only slept 3.5 hours the night before, and I’d hired help for four hours, I joked that I could stay on top of my work load if I never slept and each day was a half hour longer. Anyways, it was Thursday and life seemed pretty good. Until Ray and I met with the neuropsychologist who coordinates his rehabilitative therapy.

And she told me I wasn’t doing enough.

Okay, okay, she didn’t use those words, exactly. She was very nice, really. But the bottom line is this: Even as I thought Ray was making such remarkable progress (and had just posted a blog post about it, for the love of all that’s good!), the therapists felt that he wasn’t making enough progress, and that it was because we haven’t been doing enough therapy at home.

Exit happy, “I’ve got this” Stephanie. Enter “You’ve got to be kidding me, how can I possibly do one more thing” hot mess disaster Stephanie.

I made it through the meeting. But for the next several hours the words kept playing through my head. I’m not doing enough.

I lost it when I was telling my sister about it. At Dude’s rugby game. For all the world (or at least all those rugby parents) to see.

I lost it again the next day when I called my mom and told her what had happened.

And I lost it again as I watched what seemed to be a pint of blood go down the drain because Ray had sliced his fingers while cutting steak (blood thinners really work).

Reality struck. I had everything under control in the way that a cartoon character carrying a giant stack of dishes has control of those plates. Add one tiny tea cup, a spoon, or – heck! – even just a napkin, and the illusion of control is destroyed.

I’ve told friends that my life right now isn’t much different from that of a single mother with five young children with lots of doctor’s appointments and mountain of long-term-disability/social-security paperwork and medical bills to wade through.

But, seriously? What woman can handle all of that?

Well. Here’s the answer. Not a one. At least, certainly not this one. The reality is that things are going to remain undone and priorities have to be set, and that when that mom is trying to do everything, she’s going to make herself – and most likely everyone around her – miserable.

But here’s where the hot mess pity party ends, and light streams through the clouds.

On Sunday morning, my daily devotional was all about the foundational importance of IMG_9989.JPGhumility. Without humility, we can not continue to grow in the faith. We will always hit a stopping point.

I’ve written before about my need for this virtue, and the opportunity for growth remains. Humility is the knowledge that, without God I can do nothing. When I try to do too much and fail, I come back to the knowledge that I’m trying to do these things on my own. Yes, I can do all things. But I must not forget the last part of the verse. Through Christ, who strengthens me.

And so my hot mess pity party of last weekend was a blessing in disguise. It got me back down on my knees in prayer where I belong. It helped me to refocus and reignite.

I can’t say that I won’t fall apart again, but, with God’s Grace, I will find the courage and strength to acknowledge my weakness, cling to Him, and allow Him to put me back together again.

A Long Overdue Update – Ray’s Recovery from Brain Injury

The crickets have been chirping over here at A Few Beads Short, which probably has many of you wondering how Ray is doing following his heart attack and brain injury (injuries, actually).

So here goes… Ray’s doing well. Like, really, miraculously, incredibly well. I have to remind myself of that IMG_2836every day, and look back at where he was on December 8th, when he first went to the rehab hospital and couldn’t even hold a tooth brush, or on his first day home when he didn’t know how to use his walker in the small confines of our home and preferred to navigate by literally bouncing off of the walls and furniture to keep himself from falling. Or, the days when he’d start confabulating (yes, that’s a word) long, drawn out stories that you knew were absolute B.S. from the moment they started but it was nearly impossible to stop him until he’d gone on and on and on for five minutes or more… without pause.

His balance is still a bit off which means his gait’s a little wide, but all in all he’s walking beautifully. The video below was taken when we were walking into some very fierce wind at the beach during spring break (yes, thank you God – and one sweet, generous friend – we got to go on spring break!).

He brushes his own teeth – without me even reminding him! – and takes his own shower without a shower seat, and without me needing to stand nearby constantly at the ready lest he lose his balance and fall. In fact, he’s quite self-sufficient in all personal care tasks. He just takes a lot longer to do them than he used to. He still confabulates occasionally, but the stories are becoming increasingly fewer and farther between, and – thank God – they’re getting shorter, or maybe I’m just becoming better at politely redirecting the conversation.

Ray’s generally been pretty upbeat and seemingly unbothered by his brain injury. Claudia L. Osborn shares her story of recovering from a brain injury in the book Over My Head, and describes herself as having a “goofy contentment.” I’d say that’s a very accurate summary. However, I think Ray’s beginning to evolve beyond contentment, and reality is setting in. As you can probably imagine, this is both a blessing and a curse. On the one hand, “goofy contentment” is clearly not normal or healthy. On the other hand, it’s made for a pretty happy-go-lucky Ray when it came to therapy, homework, and dealing with his new lifestyle. The absence of contentment may usher in a whole host of new challenges.

Weird things have changed. His sense of smell has been severely impacted, which is a huge blessing when I’m gassy but very sad when there are flowers to smell. Along with that, his sense of taste has changed entirely. We used to love to eat sushi together, and now he could take it or leave it. In fact, he’d probably rather leave it since chop sticks pose a serious challenge. He used to hate almond milk but now prefers it to cow’s milk. He used to be a stickler for praying before family meals but these days sits down and starts eating the moment the plate hits the table. He’s forgotten some basic table manners and social niceties. One moment, I can almost forget that anything’s changed. The next, he double dips his breadstick and I’m reminded how very different he’s become.

All in all, we’re still early stages, and his recovery is nothing short of miraculous. But, we have a very long way to go. Years and years, in fact. We’ve been told that he won’t work in 2016, and possibly not in 2017, either. He can’t drive, has periodic tunnel vision, appears to have forgotten our lives together, and really has little to no voluntary recall of memories beyond the very recent past.

I hope to write within the next few days about how I’m doing, but bear with me. To say that life is crazy right now doesn’t quite do it justice. For now, I’ll summarize it by saying that I try to remind myself constantly that his recovery is a miracle, and a gift from God. I know that God can and will use all things for his glory, and when I look back at the last six months, I can see how he has done that already, although I believe our story is far from over. But busy-ness detracts from Godliness, and the entire Engelman family could really use your prayers.

If this is your first time visiting the blog, and you’re wondering what on earth is going on, here are a few posts that will catch you up:

Ray had a heart attack and suffered a serious brain injury as a result. Here’s what I wrote the night after it all began.

Here’s how God blessed me (and us) abundantly with his presence, comfort and peace.

Oh yeah, I wrote this book and it was released in the midst of all this.

After nearly three months in the hospital, here’s how we wound up bringing Ray home when we thought we were taking him to a subacute rehab facility.

And it went like this.

Here’s how the baby that no one thought we should have saved his daddy’s life.

 

Seven Riddles to Nowhere Cover Reveal

Author A.J. Cattapan revealed the cover to her new book, Seven Riddles to Nowhere, last week, and I get to share it with all of you, too! Actually, I was supposed to share it on Wednesday but I was busy having a wee bit of a breakdown over time-consuming medical bills, paperwork, and mountains of unfolded laundry so I’m just now finally getting this out.

Seven Riddles to Nowhere won’t be released until August, but I have already been blessed to read it. This is one great bonus to being an author, I’m learning – getting to read great books before they’re even published. Or, at least I’m hoping they’ll all be as great as Seven Riddles to Nowhere, because it would be extremely awkward if they weren’t.

Here’s the book blurb so you know what it’s all about:

7 riddles. 1 fortune. Way too many competitors.

All seventh grader Kameron Boyd wants to do is keep his little Catholic school from closing. It’s the only school where they’ve made life as a selective mute somewhat bearable. As the school faces financial distress, Kam learns he is one of many potential heirs to a fortune large enough to keep his school open.

With the school’s bully as one of the other potential heirs, Kam and his friends race to solve the riddles first. Their journey takes them through the churches of Chicago to decipher the hidden meanings in artwork all while avoiding the mysterious men following them. But creepy men in trench coats won’t stop them! They’re on a quest–not only to keep the school open, but to help Kam recover his voice.

So, without further ado, here’s the beautiful cover to Seven Riddles to Nowhere (drum roll, please!)

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I love this cover because it so beautifully highlights the city of Chicago, and gives a real glimpse at the churches the kids visit during their adventure. If you have a fourth through eighth grader, this will be a great late summer read. I’ll keep you posted on it’s release so you can add it to your “want to read” list!
(P.S. I’m reading A.J. Cattapan’s Angelhood right now! I’ll write a review soon but I can already tell you it should be in your teenager’s summer reading pile!)
A.J. Cattapan is a bestselling author, speaker, and middle school English teacher living in the Chicago area. Her debut young adult novel Angelhood won a Gold Medal in the Moonbeam Children’s Book Awards for Young Adult Fiction—Religion/Spirituality and an Honorable Mention from Readers’ Favorite Book AwardsShe’s also been a Chicken Soup for the Soul contributor and had numerous short stories and articles published in magazines for teens and children, including Highlights, Pockets, and Hopscotch for GirlsHer next novel, a middle grade mystery titled Seven Riddles to Nowhere, releases in August. You can follow her writing and travel adventures at www.ajcattapan.com.
 
Social Media Links:
Amazon Author Page: www.amazon.com/author/ajcattapan

The Unexpected Blessing of Being Open to Life

This little guy turns one today, so it seems fitting that I write a post I’ve been meaning to Evan in swingwrite for a very long time.

I’d like to reflect on the fact that, about one year and eight months ago, when Ray and I shared our news with friends and family, the overwhelming response was, “Are you serious?” or, “How could you let this happen?” or, “Raymond, you should have had that taken care of a long time ago!” or even, “You’re killing me!”

Thank God, we were serious. Thank God, we did let this happen. Thank God, Raymond hadn’t had “that” taken care of.

Because, first of all, our family was not complete without Little Man. We had one more seat in the car, a little more space in a bedroom, and tons more room in our hearts. From the moment he came into this world — smiling, I swear! —he has been a blessing to us. He has brought joy, laughter, and endless snuggles into our lives. Everyone who meets him remarks at what a happy child he is. Anyone who sees him agrees he’s one of the most beautiful babies they’ve ever seen. Each person who holds him is instantly wrapped around his little finger, and happier for having had a cuddle.

Evan standing at tableI’ve always thought this was God’s way of showing us how he will bless us when we are open to his will for us. When people would argue with me that Ray should get “snipped,” that surely we couldn’t have more children, I would point to Little Man and say, “But if we had followed your advice, we wouldn’t have him!” 

To me, Little Man was a living, breathing testament to the importance of always remaining open to life.

But then God took it one step further. Because bringing light and laughter and one more person to love into our lives wasn’t enough. If Ray and I hadn’t been open to life, to this life in particular, there would have been no baby to wake up and begin to cry on the morning of November 19th, when Ray got out of bed. There would have been no child to carry out to the family room to nurse at three in the morning. No baby to set down on the floor while I called 911. No baby to remain sitting quietly by as his mommy performed CPR on his daddy.

Evan sitting on floorNope. If we’d followed the way of the world, and the advice of most of our family and friends, there would have been no baby. I would have remained peacefully asleep that morning, and Ray’s body would have grown cold long before I awoke three hours later to find him.

Does every “surprise” baby save his daddy’s life?

No.

But this baby is a reminder that God has a plan for each and every one of us. And that we’ll never know what blessings we’ve kept from the world in the babies whose existence we’ve prevented.


 

If you’d like to see more posts like this, you might check out:

At This Most Difficult Hour, 7 Things I’m Grateful For

A Peace that Surpasses All Understanding

and one of my all time favorites:

Ugly, Squeaky, Humbling: 7 Things I Love About Our Little House

 

Being Home – The Good, the Bad, and the Ugly (A 7QT Post)

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It’s been two weeks now since Ray’s unexpected homecoming. There have been good times, there have been bad times, and there have been downright ugly times. Here are some highlights.

1. Good: I Can’t Even Keep Track of How Much Help We’ve Had

Seriously. I’ve said all along that about the only thing people aren’t doing for me is blowing my nose and wiping my… eh hmm. The boatloads of help have continued, and even increased, since Ray’s been home. Ray’s parents have spent a ton of time at the house helping keep him busy, safe, and therapied. (Yes, I’m allowed to make up new words.) A few courageous friends and family members have even come and stayed with him for short periods of time. Meals have been brought, grocery trips made, and kids have been occupied.

2. Good: My Kids Are Pretty Awesome

The kids have been an amazing help. Boo (our 5 year old) will act as Ray’s loving restraint device by sitting on his lap when I need to leave the room. The older ones will play games with him to keep him in one spot, and they’re generally very happy to help by bringing IMG_9075 isaac bday ray with girlsDaddy whatever he needs.

Ray’s reality is different from our own. Sometimes he sees things that aren’t there, and sometimes he doesn’t see things that are there. Ray will discipline the kids for things they didn’t do, or for failure to do things they were never told to do in the first place. He frequently calls them by the wrong name, or mistakes someone else’s child as one of our own.

This confounds the younger children, but the older two have responded remarkably well. Dude and Bonita will shrug these things off, tell him what he needs to hear at that moment, and, at times, even wink at Mommy as they’re doing it.

3. Bad: Lines Are Getting Blurred

As you might guess from #2, the children’s response is both a blessing, and a curse. The line between parent and child is, necessarily, blurred right now. This leads to children taking on responsibilities they should never have to bear. For example, Ray fell Thursday night, while in the living room with 12 year old Dude. Dude felt that it was all his fault, that he should have caught Daddy. Of course, you and I know that that would have been impossible, but Dude is still beating himself up over it, nonetheless.

The line of honesty and trust is being blurred, as well. Daddy tells some real whoppers, which is an inherent part of his diagnosis. Some of it is hallucination, and some of it is “confabulation.” The kids are learning, very quickly, not to believe anything Daddy says, and, at this point in time, I can only support them in that understanding. Parents should always advocate and support one another, presenting a “unified front” to their kids. Instead, in the Engelman household right now, the children and I have had to turn the tables and present a “unified front” to their father. It’s slippery territory.

4. Good: At Times, I Feel Like I’ve “Got This”

There have been moments, and even days, when dinner was on the table at a reasonable hour, the house was relatively neat and clean, and the laundry not atrociously overflowing. More importantly, Ray seemed to be benefitting from activities and love at home and the children and I have enjoyed having him here. In those moments, I’ve felt like I had things pretty well under control, even while recognizing that, yes, that was entirely due to God’s grace and the help and kindness of friends, family, and even strangers.

5. Ugly: There Have Been Times When I Totally Didn’t “Have This”

And then it all falls apart. Two kids throwing fits at the same time, lack of sleep due to a baby who wakes up three to four times a night and a husband who sometimes needs assistance at night, too. A messy house that eventually gets the better of me, Ray’s stressful showers that take up to an hour, trying to get anywhere on time being next to impossible… these things tend to add up and bring out the very worst in me.

6. Bad: Patience Remains a Virtue I Need to Work On

As you can guess from #5, and as I’ve discussed previously, patience is a virtue that I don’t possess in great quantities. As I mentioned during my radio interview Friday, I frequently think, this requires the patience of Job, and I don’t have the patience of Job.

Part of Ray’s injury has led him to a bit of an OCD personality, that requires prolonged tooth brushing and fixating on various other grooming needs. To make matters worse, I really need to be with him through much of this grooming to make sure that he is safe. Most of the time, I think I do pretty well with this, but when we’re on a schedule, having started well in advance of the necessary departure time, and grooming throws us fifteen to thirty minutes behind, my patience has been know to run out.

Obviously, I’m working on this, on changing the amount of time I allow to get to commitments, and the way we do things in general so that he can have the time he needs, but I’ve got a long way to go before I get it all figured out.

7. Good: We Have a Merciful God

What a blessing to be in the season of Lent, when I am reminded that we are called to take up our crosses and follow Christ. And, as I consider Christ on his way to Calvary, I am also reminded that he fell three times on that journey. Christ was perfect in every way, but his falling reminds me that I am not. I am human, and imperfect, and I will inevitably fall at times.

2016 is being celebrated within the Catholic Church as a “Jubilee Year of Mercy.” This is a time to remember God’s Mercy, through the gift of his son on the cross, through which all our sins are forgiven. It’s also a time for us to extend mercy to others, and even to ourselves.

As I fall, and get up, and fall, and get up again, I rejoice in the boundless mercy of our loving God, and seek to remind myself to be merciful in turn to Ray, to my children, and to myself.

 

For more Quick Takes, visit This Ain’t the Lyceum!

 

An Unexpected Homecoming

It’s been a long week. Last Saturday, Ray’s sister was visiting when he had a bout of “seizure like activity.” On Monday, just as I was getting ready to leave the rehab hospital to go pick up the kids, I noticed that Ray’s breathing was labored. One thing led to another, and it turned into another “seizure-like” episode. Next thing you know, we’re back at St. Vincent’s hospital for testing.

An echocardiogram, CT scan, EEG, and MRI later, we were all set to leave St. V’s Friday afternoon.

However, we could not return to the same acute rehab hospital we had come to know and love. The average stay there is 14 days. Ray had been there for 49, and the insurance wasn’t ready to pay for more. Tuesday had been set as his discharge day.

I had prayerfully considered bringing Ray home, but the doctors and family and friends strongly discouraged it. He is very impulsive, extremely shaky on his feet, and recognizes neither. He should use a walker or wheelchair, and needs a spotter, even with the walker. But he doesn’t remember that and, without a second thought, will hop out of bed, a chair, or even a wheelchair and eagerly want to help me, grab an imagined item, or go to the bathroom. How could a mother with five young children, including a baby, handle that? The answer is… she probably can’t. Plus, at a subacute rehab, he would receive two hours a day of therapy, whereas if he were at home he would only get three hours a couple days a week.

I toured three subacute facilities, and said I would cut off my right arm before putting him in two of them. However, there was a third that I was very comfortable with. Unfortunately, there was a mix-up and miscommunication, and that facility denied him admission. We were expecting to get that figured out early next week, so we decided to put him in one of the other cut-off-my-arm-subacutes in the meantime.

On the way to his new "home away from home"
On the way to his new “home away from home”

I figured he’d survive a few days in a poorly decorated geriatric facility, and then we’d get him to the better option.

We left the hospital around 4:30, and finally got to the new facility at five. After waiting 20 minutes for someone to bring a wheelchair, we were finally shown to his room. Walking through the halls, I was reminded of why I wanted to cut off an arm before sending him there, and when we walked into the vintage eighties room, boasting two beds with nasty, mismatched comforters and not much else, I wanted to cry. It was only for a few days, though, so I thought we could handle it.

But then I noticed that the bed had no rails. And the tech informed me that none of their beds had rails – that’s considered a restraint, and they can’t have restraints. So I asked about a bed alarm. And he said that, no, they didn’t have those, either. That was considered a restraint too.

And I said, “He can’t stay here.”

Which left only one option. Bring him home.

Thus, last night, with no planning and zero preparation, I finally brought Ray home, after

Home at last
Home at last

over two months of hospitalization. My full time job has now switched from hospital visitor, rehab supporter, and medical advocate. I am now 24/7 caregiver, not just to five kids, but to one adult man as well. Fortunately, I had been trained in walking with him, helping him to the bathroom, and transitioning from wheelchair to car. Unfortunately, we left the hospital with no training on his medications, no medical equipment, and a house that needs rearranged to fit our new needs.

It’s gonna be an interesting few days, but it’s good to have him home.

A Single Bead is Finally Here! (A Belated Announcement)

Seriously. What blogger has a new book release and doesn’t even get around to blogging about it until more than two weeks after release?

Ummmmm. This one.

A Single Bead CoverI was all excited back on November 18th to do my cover reveal. I set up a Rafflecopter giveaway, posted the cover to Facebook, and wrote a long blog post about how the book came into being. I had great plans for posting the cover to my blog the following day, tweeting, posting to the Books for Catholic Teens Facebook page, etc. etc. etc

I was also scheduled to spend three days at the National Catholic Youth Conference, right here in Indy, which ran from November 19th to the 21st. I was even going to be interviewed for CatholicTV’s “This is the Day” program while I was there. Ray had taken time off work to watch the kids so I could be at the conference.

But God had different plans. Instead of spending his vacation watching the baby, Ray spent those few days essentially comatose following a heart attack. Cover reveal forgotten, A Single Bead was placed on the back burner, as our family dealt with realities that would have been unthinkable only a few days before.

God works in mysterious ways, though. Because of those disrupted plans, Ray had a whooooole bunch of religious sisters from the Daughters of St. Paul praying for him, along with the people from CatholicTV, and goodness only knows who else, that would have otherwise not even known who he was.

And, even as I walked through the worst of this difficult time, I was able to recognize how writing A Single Bead, which explores the power of faith to bring us through the most challenging of circumstances, had actually prepared me for this experience.

In the sixteen days since it was released, I’ve been blessed to hear from many people who have read the book. Many of them never would have even heard of the book if the “Pray for Ray” mantra hadn’t spread across Facebook. What a blessing to realize that a book that had been pigeon-holed as Catholic, because the story revolves around lost rosary beads, has inspired and blessed people from many different faiths and backgrounds!

In her review, author and grief coach, Jeannie Ewing, says, “If you are hurting over trauma or tragedy, or if you know someone who is, purchase A Single Bead.” Ruth Anne Holloway at Holloway Family North said, “The book does a great job of “showcasing” the power of prayer in a simple and easy to follow way.” Barb Szyszkiewicz at Franciscan Mom called it “compelling” and “refreshing.”

If you haven’t ordered your own copy yet, you can click on the picture below to order it from Amazon. It is available in paperback and electronic formats. If you’ve read it and enjoyed it, please consider writing a review, and telling your friends about it. Thank you!

 

An Honest Look at the Life of One Catholic Mommy