"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Wednesday, January 23, 2013

Love Must Be Soft and Hard

Loving a medically needy and fragile child means that you must mix both the soft and cozy love with the "Hard" or "Tough" love.

Hard decisions must be made. Again and again. Scary things have to be gotten through, and you must grit your teeth, and walk with your child through them.

While I will respect the parents who go off and leave the professionals to deal with the crying, screaming child, and then come back later to comfort, that has never been my M.O. with my kiddos. And most especially with Katya. She would never understand if I walked off and left her with strangers. That means no matter how tough it is, Mommy is there if she is conscious.

Like I told Dr. Carson the day before her massive surgery, "I'd be right there in the corner of the OR if she needed me, like it or not. But she'll be asleep when I walk out of the OR, so she doesn't need me right then." He looked just a trifle startled, I thought, but he agreed that Katya did need her Mommy when she was awake.

And thankfully, his procedure is to have the parent's carry the child into the OR and stay with them until they are unconscious, then walk out. He "gets" that a parent is comforting to a child, and due to his method, Katya never needed to have ANY meds or IV's pre-OP at her two surgeries at JHH. IV's are inserted once she is put to sleep by mask.

Not everyone else "gets it" on the same level as Dr. Carson. And, in spite of several attempts by others to boot me out when performing procedures on my daughter, I have never left her. No matter how painful it is for me, I don't go. Because she wouldn't understand it. And as tough as it is for her to go through it with me there COMFORTING, I shudder to think how she would take it if she were separated from me.

Probably one of the most "memorable" attempt at kicking me out was when Katya was taken up to PICU around 1:00 AM Sunday night/Monday morning when Katya was in acute respitory distress from anaphaletic shock, as well as severely dehyrdated and suffering from a clogged surgical drainage tube.

After she was a bit more stable in terms of breathing and swelling, the PICU Dr., Dr. Karina, felt that she needed to perform a spinal tap to definitely rule out meningitis. At my insistence, they assured me that they would "snow" Katya so heavily with drugs that it would be "the most comfortable thing she goes through in PICU". Nevertheless, this Mommy wasn't leaving the room. They attempted to shoo me out when they were ready to start.

I told the Dr. I was not going. That Katya might need me, and I would be there. Dr. Karina told me that Katya was sedated and didn't need me. I told her that might be, but just in case, I was going to be there for her. Dr. Karina again told me to leave. I told her that I was not leaving--that I would sit in the corner, and I would even turn my back if that would make her feel better, but if Katya needed to hear her Mommy's voice, she was going to hear it.

There then ensued a long and tense "look-off" . . . with Dr. Karina standing, masked and gowned on one side of the bed, and all the authority of JHH behind her, and this extremely exhausted and worn-out, dishelved Mommy, standing and looking right back at her from the other side of the bed. I remember thinking as this long "looking" went on, "If you want me out of her, you are going to have to call Security to DRAG me out. Is that what you REALLY want?!"

Let it be said that Dr. Karina broke eye contact first and as her eyes dropped and her head bent just a hair, she said, "OK. Go sit in the corner."

And so I did. And I didn't look. But every time Katya whimpered, SHE HEARD HER MOMMY'S VOICE. And she would quiet right away.

So . . . my love for her was fierce and strong and tough. And I will never, ever regret that I insisted on staying with her. No matter how hard it was, I know I made the right decision for her AND for me. It may not be the right decision for every parent and child. That's OK. You have to make what is best for your child and you. But if I had done what was EASIEST right at the second, it would have been to walk away . . . not to cause ripples and not to stand up for my right to be there with my child. So I have to make sure I don't confuse "easiest" with "best".

This applies to many areas, not just medically . . . We are still feeling our way in a lot of these decisions and don't always know the right thing right off the bat. I'm thankful for friends who dialogue with me, for blog readers who ask gentle questions, and for those who speak into our lives in various ways. I'm also thankful that we are getting to a great level of comfort where we can dialogue with Katya's team at JHH and challenge, and question without feeling too stressed about it. Familiarity and lots of contact has helped make it a comfortable working relationship.

We always try to prayerfully consider ALL input and then make wise and careful decisions for Katya and our family. We spend much time trying to look at all angles--what impacts not only Katya, but also how it will impact the rest of our family, especially the children. Many aspects need to be considered when making a decision, and lots needs weighed and pondered prayerfully.

Have you ever had to have "tough love" with a child of yours? If so, what factors did you consider when making your decision?

P.S. Just so you know . . . the last CT Katya had last week needed to have contrast, which meant an IV had to be started. Our family Dr. wrote right on the order for the CT that Katya was not to be separated from her Mom at any point in the procedure! I didn't know that a Dr. could do that, but he said he could and that they would have to obey his order. How cool is that? Just a nice thing to know for the future . . . 


Ashley said...

I haven't had to use tough love, but as someone with a life long disability, I've been on the "tough love" receiving end. And I would like to use my words to tell you what Katya can't yet... Thank you so much! It is so great as a child in a scary situation to know that your Mommy is right there with you!

Milena said...

I think I love your family Dr for writing that comment for you, thus relieving you at least a little burden!

I'm pretty sure I have had to have tough love with one or more of my children, but I can't remember who and when right now. But I recognize the feeling, so I guess it has happened :-) I remember always considering what would be best for the child, which I remember has meant both being harder and softer than others have thought I should be.

Laura Elizabeth said...

Good for you! Doctors may be a lot smarter than a mother on some things, but a mother generally knows what's best for her child. And good for that doctor who wrote that order :D

Hope Anne said...

Thank you Ashley, Milena, and Laura Elizabeth for your kind comments. ;-)

And yes, I was thrilled that our Dr. did that. . . it took off the "what-if" stress from my mind on the way to the hospital for the testing! ;-) Which is an important thing.

jen said...

My son Daniel ended up in the hospital for three weeks just before he turned 2. I lived at the hospital (UC Davis Medical Center) for those three weeks and during the time in the PICU, they would frequently kick me out to do surgical things and when they needed to do x-rays. (One radiologist finally had pity on me and gave me a lead apron to toss on myself because the x-rays were at 6 a.m.!) During one of the procedures in the middle of the night, I asked if I could please just stay and be quiet because it was 3 a.m. The doctor agreed and handed me a scrub cap. I rolled over and surfed on my laptop until they were done.

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