Friday, March 25, 2016

Talking to Kids About a Parent's Disability

I recently wrote an original article for AbleThrive about tips for talking to kids about a parent's disability. It's something we do every day.  Not that we sit Evie down and conduct a lecture on SCI 101 - it's more something that we have just absorbed into our daily life.

Sometimes talking about Jeff's disability is not even talking at all. It's just doing. It's Evie watching us. It's her helping us. It's her taking it all in.

So I thought I'd share the article here:

My husband Jeff is a C4 ventilator-dependent quadriplegic. Our daughter Evie was four years old when he was injured. Now she’s almost seven. For the last three years, she’s been on this spinal cord injury journey with us.
She’s watched and absorbed everything. And she’s asked a lot of questions – some of which have very straight-forward answers (like, “Can Daddy feel me tickling his feet?”) and others that have more complex answers (like, “Why can’t Daddy feel me tickling his feet?”)
One thing we’ve never shied away from is talking to our daughter about her dad’s disability. How can we not? It’s a part of our lives and always will be. Here are some tips we’ve discovered along the way for talking to kids about a parent’s injury and resulting disability.

1. First and foremost – tell the truth. Jeff and I make it a point to always be honest, even if the honest answer is not always the easiest to say or hear. Sugar coating the truth can lead to false hopes and unfulfilled promises. For example, we don’t ever say, “When Daddy gets better …” because the truth is that Daddy isn’t getting better. Or at least he’s not going back to the way he was before his injury. Instead, we acknowledge Daddy’s new body, his new abilities, and focus on the things we can still do together as a family.
2. Don’t worry so much about explaining things to kids in “terms they can understand.” Kids are smarter than adults often realize. And kids know when you’re “talking down” to them. Most of the time, when we’re discussing the technicalities of my husband’s spinal cord injury, we talk to our daughter the way we would talk to an adult about the subject.
Kids are fascinated with big, multi-syllabic words even if they don’t fully comprehend the meanings. Words and phrases like “ventilator-dependent,” “tracheostomy,” and “autonomic dysreflexia” are part of our family’s vocabulary now. I remember having a parent-teacher meeting with Evie’s former kindergarten teacher, and she told me about how one day during class, Evie just blurted out, “My dad is a quadriplegic and he’s on a ventilator.” The teacher admitted that she stopped in her tracks, eyes wide with fear, and wondered if Evie would start crying. But Evie didn’t. She moved onto the next task in the classroom. The teacher told me she was rather stunned, not only at Evie’s vocabulary use, but also at her ability to be so matter-of-fact about a sensitive subject. Kids are often impressively resilient. I know our daughter has been.
3. Try reading age-appropriate books about disability. We have a wonderful book titled Dad Has a Wheelchair that we got for Evie when she was 5. This book discusses all kinds of disabilities and has great illustrations. Each time we read it, I see a new level of understanding emerge. Just a couple weeks ago, we read it again. And when we got to a picture of a man in a wheelchair raising his arms, Evie pointed to it and said, “Oh, he must be lower than Daddy.” What she meant was the man’s injury is at a lower level on the spinal cord than Jeff’s because he can move his arms and Jeff can’t.  We’d talked about injuries along the spinal cord before, but this was the first time she’d put that information together with an illustration. She gets this. She truly does. And books about disabilities help to facilitate that understanding and often provide a way for children to communicate that knowledge.
4. Be open about the care that goes into managing a disability. This one may depend on your comfort level, but for us, we are very open and forthcoming about the care required to keep Jeff’s body functioning. I perform a lot of Jeff’s care while he is in his bed. And we keep our bedroom door open for almost everything – an indication that Evie is always welcome. Most of the time she floats in and out of our room and pays no mind to the fact that I’m feeding Dad a snack or trimming his beard. She’s seen me perform trach care on Jeff (and is forever grossed out by the boogers), she’s watched as Jeff is suctioned to keep his lungs clear, and she’s been present – even helped – as I transfer Jeff from the bed to his wheelchair using the overhead lift (which she’s, more than once, taken a ride on herself).
The only time we close our bedroom door is when I’m giving Jeff a bath, or when I’m managing his bladder and bowel care. Still, even though Evie doesn’t participate in these duties, she knows what’s involved. She knows Dad can’t do these things on his own, and she knows what Mom does to help. (She also knows that these are the kinds of privacy details we don’t really share with other people.) It’s important to us that Evie knows what’s going on. We don’t keep anything hidden from her when it comes to Jeff’s care.
5. Remember, it’s okay if you don’t have all the answers. As parents, we often feel pressure to take on the role of teacher – imparting knowledge and answering our children’s questions along the path of life. Jeff and I do that to the best of our ability. But the truth is, we don’t have all the answers. Some days we’re not even sure we’re doing any of this right. All we can do is keep going, keep doing what’s working, and learn from our mistakes.
Jeff and I are doing our best to teach our daughter that despite the colossal change we’ve experienced, life still goes on. All three of us entered our new world at the exact same moment nearly three years ago. We’re all figuring this out together. Learning as we go. And learning from one another.

Thursday, March 3, 2016

Waiting for Better

Last Monday we were so excited to be busting out of the hospital. Jeff had to go back for an outpatient procedure in the morning, and we were home by late afternoon.

Here we are - all smiles - leaving the long corridors and harsh overhead lights behind us.

But Wednesday came along, and Jeff began showing signs of pneumonia.

Our bedroom has turned into an infirmary. We are exhausted from our overnight watch that was filled with breathing treatments, suction, constant monitoring, anxiety, and wrinkle-inducing worry.

Jeff's oxygen levels are low. His secretions are thick. He has a fever. He is so tired, yet he's afraid to sleep because he doesn't want to wake up gasping for breath. Can you imagine the fear of not being able to breathe? Jeff lives it everyday - even on good days. I don't know how he does it.

I am doing my usual when this happens. Bolstering up my calm, controlled exterior and falling apart on the inside. My stomach lurches, producing painful acid, reminding me of the stress that never dissipates. My face looks ten years older on days like these, the worry etching itself into my skin.

I am Jeff's forever on-call nurse. I hover over him quietly. Watching his uneasy countenance. Checking his numbers. Caressing his hands that he cannot feel. I leave the room briefly to sit at the computer and chart my notes (aka this blog post). Maybe to do some laundry. Or get something to eat. But I spend the majority of my time with him. Watching him. Comforting him. Doing my best to take care of him when scary stuff like this happens.

Our home health agency is involved. We have new medications on order, and a mobile chest xray unit on its way to our home. We are doing our utmost to handle things here.

Another trip to the hospital is the last thing we want.

Because a hospital is a dangerous place for Jeff. His last hospital stint, just a few weeks ago for a kidney stone operation (which deserves its own blog post - it was that treacherous) turned into a fiasco. I can't accurately count the number of ventilators he's been hooked up to during that stay plus the outpatient visit from earlier this week. Each ventilator breathes a little differently, forcing Jeff's lungs to adapt to a constantly changing pressure environment. Multiple vents +  multiple vent circuits + increased suctioning = compromised lungs.

How can a place that once saved my husband's life now be such a threat to his health? I'm really struggling with this right now.

* * * * * * *
I'm not even sure there is a cohesive point to this post. Maybe just to illustrate how fast things can change in our world. How conversations filled with laughter and lightness can turn heavy in an instant.

It's days like this where I can feel the pressure of this life pushing down on us. Almost like the ceiling is creeping downward, inching toward us, reminding us of its intent to crush us.

Some days it gets frighteningly close. Today is one of those days.

And so we wait. Wait for the moment when the magic button is found and pushed, and the ceiling starts to retreat. When shoulders feel lighter and breathing (quite literally) becomes easier.

The waiting is hard. But we've done it before and we'll do it again.

Together. Always.

*** UPDATE ***

It's been two weeks since I posted, and let me tell you - it's been a helluva two weeks.

But I am so happy to be able to say that Jeff is better. His pneumonia has been kicked to the curb. And the best news of all is that we handled everything from home!!

It was rough - really rough. In fact, there was one morning early on where I had our bags packed. I had Jeff dressed and his wheelchair and vent charged. We looked at each other and just shook our heads. We were about ready to throw in the towel and go to the ER.

I decided to talk to the nurse one last time. She confirmed that there was pneumonia in his right lower lobe. She told me I needed to get his oxygen levels up. They needed to be at least to 92 and holding (they were at 87 at the time - way too low). She told me to turn him and suction him. Do the breathing treatments every 4 hours - even through the night. But I had to get those numbers up soon. Or else our only option would be the hospital.

So I hung up. I got the suction machine ready. I turned Jeff on his side and percussed him - I basically used his back as a bongo drum. I had to loosen up the secretions. I turned him back onto his back, lifted the head of the bed, and suctioned him.

What came up looked like something out of The Creature From the Black Lagoon.

Jeff's oxygen immediately jumped up. Now he was at 91. There was color back in his cheeks.

We smiled hesitantly at each other and nodded. We were onto something. Our ER plans were put on hold.

And so this became the new routine. Breathing treatments, turning, suctioning. Repeat.

We did this every 4 hours. 

For a week.

After the first 24 hours, my body was incredibly sore. I'm used to turning Jeff, but usually only once or twice a day. Now I was doing it 6 times a day. My hamstrings, lower back, and shoulders were begging me not to make them work any harder. But I pushed them. And by the end of the second 24-hour period, they were good to go.  

Jeff was entirely worn out. His body, his immunity beaten down. He didn't get out of bed for 7 days. He stared at the same TV, the same walls, the same everything for 7 days straight. 

I can't believe he didn't go crazy.

Slowly things started improving. Secretions started thinning. Fever started to diminish. Heart rate began to lower back to a normal level. Oxygen levels continued to climb. 

We began to breathe a little easier - literally and figuratively.

Yesterday we got out of the house for the first time. Jeff had an appointment with the urologist to wrap up this business with the kidney stone. The appointment was one month after his surgery to have the stones removed. It's crazy to think how much has happened in that month. What started out as a procedure with a projected one night hospital stay turned into a 4 night stay, that turned into an outpatient procedure a week later, that turned into pneumonia a couple days after that. 

The kidney stone that turned into a snowball that came barreling down the side of SCI mountain.

I'm just glad it's behind us now.

Jeff still isn't quite back to normal yet. We're still dealing with residual issues that just need more time to fully clear up. 

But we're well on our way back to our new normal.

Getting ready to watch a movie

Us with a 'get well soon' pick me up!

Evie's drawing to help Daddy feel better

These two ... They sure are my everything.