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


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.


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7 comments on “Being Home – The Good, the Bad, and the Ugly (A 7QT Post)
  1. Susan Street says:

    Steh you constantly amaze me. I admire al that you are doing and I am trying understand the stress you are under, but am convinced that unless you live in a particular situation you will never fully understand unless you go down that road yourself. I continue to pray that God be with you bless you and yours. Our love…

  2. Laura Shoemaker says:

    Your words are so eloquent!! You remain in my prayers!!!! All of you!!!!

  3. Teresa C Schutzman says:

    You are doing great Stephanie. Brain injury is like being blind. You have no idea what’s going on or where you are headed and you have not been trained with a walking stick. YOU ARE DOING GREAT and patience will continue to increase. Love and prayers !

  4. Lynn Moody says:

    I know this is a very stressful and overwhelming period. I’m thinking of you all daily. And, I’m praying for your patience, strength and endurance. Because without one, the others are impossible. You are a loved and admired woman.

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