If I could sum up our parenting philosophy in just a few words, I would say it is to "parent on purpose."
As a teacher, it was helpful to know what information was on the exam before you built your plan for the year. Before you created the fun, side activities, you had to know what information your students would be tested on at the completion of your course. I've used this same guideline when supporting my children's growth. To do things with the 'end' in mind.
I wouldn't let the boys watch television until they were two years old because I wanted them to develop their sense of imagination and play. I would let them paint with their hands, play with dry pasta and use markers because I wanted them to be able to concentrate on one thing for an extended amount of time. I let them play with Nerf guns, butter knives and scissors because I wanted to be the one to teach them how to handle them responsibly. I had an idea of the kind of adults I wanted my kids to be and then I have tried to create an environment that made those transitions easier.
But, as you know, the last few months have rocked our world in many ways.
We used to eat dinner at the kitchen table. No one ate until we prayed and then we'd try and use that time to talk about our day, how we should eat at the table, how to ask for more, how to react when you're not hungry. When they were done, we'd encourage them to take their plates to the sink after they had been excused. These days, we eat in the living room picnic-style so Ben will not be alone. Even though we have a little table for Meg and Jack to sit in, it is nearly impossible to keep them in their seats (especially since Meg's current chair does not have a buckle.) We are constantly picking up spills, the carpet is a mess and they cry when we don't let them watch a video at the same time. We are done when we just can't handle the craziness anymore.
We used to have movie night once a week. Every week, we would choose a movie ahead of time and then on Friday night, after an early dinner and a bath, we came back downstairs to watch it together with popcorn. These days, we have movie night every night of the week. The boys don't have a workable system for deciding who picks which movie they watch each evening and so verbal warfare ensues. Ben usually wins, just because there is absolutely no reasoning with him these days. Jack bounces from couch to couch and Meg runs circles around the house as Ben yells for them to be quiet. It is so commonplace now that it lacks its old specialness. Try taking it away, though. Not worth it.
We used to only watch one video in the morning and perhaps another one in the afternoon so I could make dinner. We had been determined not to give our kids access to their own technology so they would turn to other creative means of play. I always wanted to give my kids enough options of things to do, but also allow them the opportunity to be "bored enough" to just pick up a book and start reading. My kids behave better when they have less access to things that simply entertain them. These days, our television is on almost the entire day. Between videos, Netflix, and the Wii, our electric bill is higher than it has ever been. We also have been gifted two iPad minis, a purchase we never would have made for our kids under normal circumstances... but these are not normal circumstances. When you have a child in your house who cannot play or run around, these activities are his only options. And how do you restrict access to just that child - especially if he is a twin? "Sorry Jack, but only Ben can do these things because he is sick and we don't want to do anything to upset him." So everyone watches more television. And it is never ever enough.
We used to have more structure in our house. Now we all need to be flexible. At every hour of the day. We all need to be quiet, not touch Ben's couch, and to take special care not to do anything to upset him.
The tumor, the cancer, the medication, all of these things have changed a lot of things in our house over the past few months. Especially Ben. He used to be so compliant, easy-going, and non-confrontational. Now he is anxious. Nervous. Irritable. And uncomfortable. We've been working with his doctor to get to a better medication schedule so his side-effects are better managed. All of this puts an extraordinary amount of strain on a young family.
There is no spoiling a child with cancer. It is not weakness to give into his demands. You want spaghetti at 6:30 in the morning? You got it. You want to watch another movie, your third of the morning? No problem. You want me to make more snickerdoodle cookies? A McDonalds cheeseburger? You'll have it within a few minutes. And since this is all done in front of his two siblings, they get it on the action as well. I wish there were things we could do to encourage more structure, more predictability. But those things are just not high on my list of priorities right now.
They'll be a time for the clean-up. For picking up the pieces that have been so decidedly scattered every which way. But now is not that time.
The last few days have been especially difficult for us. Emotionally and physically. As I mentioned before, Ben has been very irritable and we have been trying to experiment with the dosage and frequency of his medication so he is more comfortable.
For their birthday, Ben cried in pain after requesting we sit him up to open his presents. I held up each gift so it was within his view, knowing there was little chance he would be able to use the super soaker or the fishing pole he received. He couldn't blow out his candles because of the angle he was laying, even when we tilted the cake on its side and just inches from his mouth. When the noise in the room got too loud, he made everyone leave the room. I cried. I couldn't help it. And I couldn't stop either. He had been so excited to turn five years old. And now he couldn't even enjoy it.
Andy has been putting off work and the dozens of phone calls he should make because he is required to be at Ben's side every moment of every single day. Poor Andy has been a hostage in his own home. He cannot go to the bathroom without Ben's permission much less leave the room. He requires his daddy's presence all throughout the day. His comfort. His strength. Being 21 weeks pregnant, I have much less strength than I normally do and Ben feels more comfortable with Andy adjusting his body or picking him up to hold him on the toilet. There are only a few minutes of the day where he'll settle for Mom's company so Andy can run an errand for him or perhaps take a quick shower.
Last night, Andy drove to the city to get a few things done after the kids had gone to sleep. He could have never anticipated the fact that Ben would wake up less than an hour later. And... want... only... him. I went in to give him a drink of water, to help him urinate in the cup, and then he wanted me to adjust his body to the side. He was frustrated that I couldn't understand his slurred speech and was not doing what he wanted. "Can you just have Dad do it?" he asked in frustration. I tried to avert the fact that he was twenty-five minutes away. But ultimately, I had to tell him why Daddy couldn't come up and help him. And he went nuts. I texted Andy, who left immediately, but then I had to sit with an anxious Ben for almost a half-hour as we waited for his rescuer to return. Oh, my word. Pretty sure I aged about two years during that ordeal.
Yesterday, Andy and I decided we ought to order a hospital bed to give him the flexibility of movement. His back is just so sensitive and propping him up with pillows has proven to be very difficult. It arrived today. I don't think I was ready to emotionally handle that delivery.
All afternoon, I couldn't get ahold of myself. The tears just flowed and flowed. I would blame it on the pregnancy hormones, but even I know that's not entirely true. The last time I saw a bed like that, we were at Children's. I slept in one just like it in the ICU, for nights on end, next to my son who was all connected to wires and cried and cried to go home. All of that came back when I saw it again. All the pain and uncertainty returned. And it hurt like crazy.
I'm grateful that we can be home. I can't imagine Ben being in the hospital. Traveling to and from the city multiple times a day, trying to field all of the questions from Jack on why he can't come home, why he can't see him, or taking turns with Andy, spending the night. I can't even imagine trying to comfort Ben and sustain the rest of our family through something like that. I'm so grateful to be home. And even though Ben gets really irritated at times, I know he is grateful to be home too.
Andy and I have been crying a lot. Especially at night when we have some quiet moments to ourselves. This road is so much harder than we could have anticipated. It's difficult to think about the possibility that this is what my son might have been created for - to bring people to Jesus, to reaffirm people in their faith, to bring hope to a desperate world - when he hasn't even entered kindergarten. That is both humbling and hurtful.
I am not scared about the destination. I have never been more confident about our future in heaven. Just the journey getting there.
So I guess we will have to continue putting off our desire to create structure and life-skills into our kids for a while longer. Even though it goes against every bone in my body. There will be a time for that, just not right now. I will continue to take one day at a time, taking advantage of the grace God has set aside for me for each day. And relying on God's strength to carry us through. Because He is more than able. And no matter how dark the road feels at times, we will make it to the other side. By God's grace.