Today was a rare occassion where all three girls were asleep at once, so I got to go grocery shopping alone.. it was nice to take my time and just enjoy the quiet that I so rarely find myself in. On my drive home about 5pm, I got to thinking about how it's Friday night. Stuck at a light, my mind drifted to the people in the cars around me. A couple in a Jeep were holding hands and laughing - I guessed they were on their way to have dinner out, and then maybe to a movie. An older gentleman in the car behind me was smoking a cigarette and he looked like maybe life had been a little unfair to him. He looked weathered... and I silently hoped that one day I too won't seem worn down by the everyday struggles. Maybe he just left the dentist office, where they told him the tooth he needs fixed will cost him a thousand bucks that he doesn't have. Maybe his employer treats him like dirt, and he wants to retire but he can't afford to. A carful of teenage boys slams on the brakes in their truck, way too fast for the weather. But they don't know this. They are still invincible, living out those last couple of years before reality catches up to them and they learn the hard way that the things they believe 'would never happen to me' actually do. But not tonight. Tonight they'll drink too much and laugh with their friends. They'll tell a girl something they don't mean. They certainly won't wonder what plans the mom in the minivan in the front of them has for tonight.
All this thinking about other people and what 'normal' used to be like for us, is probably the culmination of several stressful weeks starting to run together. A lack of sleep, concern for Addison's latest issues, and no time to spend together as a family, as a couple.. Despite all our recent blessings, the stress of the unknown is still there and I find it boiling over and results in us snapping at the kids too harshly, arguing with one another about how to measure Addison's tube or what size bottle to make her...
I'm not sure exactly when you realize that your life has changed. I'm not sure when it becomes this 'people like them' and 'people like me' thing. Maybe its because so many people, even some of the people I considered my closest friends, don't understand; can't understand. One day you're happily on the 'old normal' side, with all the other people who are blissfully unaware of how badly you can suffer as a parent. The next day, you find you've crossed some imaginary line.... a one-way street where no matter how much you want to go back to 'normal' its simply not permitted.
You find yourself secretly angry when people make a comment about chasing their kids all over the place. You wonder if you'll ever get to chase your kid around. You struggle to bite your tongue when someone complains about changing a diaper, because they don't know what its like to hold your child down and force medical equipment into their bodies while they sob and fight, pushing you away like you're the enemy. You're not mad at this person at all... you know its all just a matter of perspective. After all, you used to be them....safe and secure in your life. Knowing what to expect. And all the things that seemed so important, things you agonized over.... like whether or not they'll develop terrible sleeping habits from having a pacifier or if its okay to eat lunchmeat while you're pregnant.... they all seem vaguely funny now.
After dinner tonight, we sent the girls down to pick up their playroom and we started around 7:30 the process of getting Addison ready for bed. Her feeding tube had been pulled out, so that was the first step. I'm still experimenting with the best way to tape it - she's allergic to the clear stuff that makes the tube not look so horrible, so unfortunately, she's stuck with the big ugly white medical tape all over. I spend 20 minutes taping the tube to a babydoll over and over, practicing, trying to make it a little easier on my babygirl. The least I can do is find a way that is both secure and safe for her, that doesnt involve taping up half her head. I cut and get the tape all ready. I get a blanket to swaddle her, lube so the tube is easier to insert, a stethescope and syringe to check the placement. Then I run around, gathering the supplies for her irrigation. Container, saline, irrigation tube, syringe, gloves, wipes, diapers, medical pad to protect her room, and finally, a bag to get rid of everything contagious. I get her pajamas, then I set to work getting her feeding pump ready. I take the bag, set the pump, reconfigure our power strip so that we can fit her video monitor, Angelcare alarm, white noise machine, and pump all into the one stupid outlet in her bedroom. Adam comes in and spends 5 minutes readjusting the monitor so we can see if she gets tangled up in her tubing. By now its 8:15.
We are finally ready to start.... I swaddle her tightly so she can't pull at that tube. Adam holds her head still and I nervously measure and remeasure the tube. I put the lubrication on it and attempt to put it in her left side of her nose. For some reason, the nurses can't get it past her septum without making her bleed really bad and neither can I. So that leaves us with the red and raw side that we have been taping on for days now. I get the tube to the back of her throat and she gags and starts to cry, when she takes a breath, I get the tube all the way in and then wipe her face so I can tape it. My nervous fumbling fingers make it difficult to quickly get the tape in place; I try to be gentle. I hate doing this more than you could possibly know. We get it taped and then around her ear. It's 8:30
Now its time for the irrigation. The details are too graphic to share on the blog, but this takes almost 20 minutes and ends with her screaming and crying and Adam and I seething in frustration at how much worse her constipation is than we thought. It always is. Its 8:50 and we get her into her pj's and then tape her NG tube around her ear and down through her pj's to her leg. We split up, he goes to get the girls ready for bed while I start cleaning up the mess. At 9:00, we prime the pump, pour formula into her feeding bag, make her a bottle, turn on all the monitors and machines.. and kiss our still-sniffling princess goodnight. At 9:05 we close the door....and then sigh, because now its after 9 and the big girls are still not in bed. I just want to lie down and decompress. The anxiety of the last 90 minutes is drilled into my head but there's no time to recover or think about that. We get everyone settled and tucked in and come 10:15 Brooklyn's out of bed trying to buy time and come up with reasons she can't sleep. We get her back down finally at 10:30 and I'm so exhausted, physically and mentally. But there's laundry and dishes and bills to be paid. So we set to work again. I wonder as I load the dryer if Adam and I will ever snuggle on the couch and watch a movie before bed. Soon, we will be so dead on our feet that we'll be lucky if we can get out an "I love you.." before falling deep asleep. And tomorrow, that same hour and a half bedtime routine will be waiting for us again at the end of the day.
I didn't write this because I feel sorry for myself. Mostly, I just feel sorry for Addison. We are still extremely blessed and I try to find so many positive things in our situation. I've learned an incredible amount about the strength that is found, in my marriage and myself. But some part of me is still learning to accept our new normal. Some part of me is still bitter that for 90 minutes, I have to make my daughter cry when what I really want to do is rock her to sleep and kiss her a few billion times. I want to sing her a song and read her a story. But there's not enough time... there's too few precious extra moments in my day. I've talked with many other special needs moms, and we are all traveling through a different phase of the grief that comes from losing your 'normal'. I believe I'm reaching the acceptance phase, though I am taking the long way there. I'm busy asking God for more patience instead of wondering "why her?". And that's progress.
Maybe the next time I'm driving alone, and my mind wanders, it won't go quite so far. It'll linger on all the things good about my own life. I'll look over and see a couple holding hands and thank God for helping me through these trials with an unbreakable marriage. I'll see an old man and thank God that I lived long enough to see my babygirls grow up. The kids speeding past me will remind me to live a little, to get lost in a moment that will be gone too soon. I won't be grieving for my 'lost normal' anymore, I'll be celebrating everything this not-so-normal life has given me.