Monday, October 28, 2013

Setting Up The Pins

I can get really hung up on timelines. I want to know what is happening and when. As Brenna has recovered from her surgery, there is an urgency to hear how quickly or slowly others have healed from the same procedure. I could pretend that the nosiness is from what to expect along the way, but part of it is to formulate a new timeline in my head to plan off of. How long until I can substitute teach again? When can I make solid plans to travel and watch Greg run in Indy? Is it possible to leave for our anniversary, or are we homebound this year? None of these plans really include the entire family, they are all "Joy plans", solely for my hapiness.

Today was supposed to be Brenna's first day back at school and we were on target for that, until she threw up yesterday afternoon. Greg has a busy work week ahead of him and won't be around much and that leaves Brenna and I together, watching Mr. Bean's Holiday.

I am tired of watching Mr. Bean. I am tired of washing bedding. I am tired of buying Depends in a ladies small and having the cashier make assumptions about my bladder control. I am tired of doing mundane things that feel very trivial and unimportant.

Sara Groves says it best in her song "Setting Up The Pins".
Everyone everywhere some way some how/ are setting up the pins for knocking em down/ you can find joy in the fertile ground/ setting up the pins and knocking em down/ you can try to fight it till your anger drowns/ setting up the pins/ my grandmother had a working song/ hummed it low all day long/ sing for the beauty that's to be found/ in setting up the pins for knocking em down.

Motherhood can often feel exactly like this song. I could get very preachy and tell you at this point to find contentment, focus on God, count your blessings, but I'm not going there this morning. Sometimes we have to arrive at that conclusion as the lone sailor on the slow boat to China.

However, I will tell you what the pins I have set up mean to me today. Watching Mr. Bean with Brenna means she is again enjoying the things that she loves and that she is feeling so much better. The bedding in my washer means that Brenna is back at home, in her own bed, not sleeping on hospital sheets that the nursing staff changes. The pile of Depends in the trash means that her foley catheter is out, she's home and she is getting back on track.

I'm supposed to be home today setting up these pins. I'm happy she is here to knock them down.

Tuesday, October 22, 2013

Getting Better

Brenna continues to get stronger each day. Her language continues to surprise us and she is more alert, quick to smile and just seems more comfortable over the last several days.

The flip side to Brenna's recovery, has been a short temper and screaming. I have started to put up firmer boundaries with her and have taken the stance of "no negotiating with terrorists" approach. When your child has been through so much and a corner of your brain whispers to your soul that you could really lose her, you tend to let a lot of things slide that you normally wouldn't put up with. Recovery has been tough and she's earned the right to be a stinker, to some extent.

We reached a low point last week in a store when she became irritated that I was buying a fitted sheet for her ghost costume since there were no flat sheets available. After screaming "no", she slapped herself in the face. Self injurious behavior is her way of saying "I am really this furious with you and frustrated with life in general". I understand that she is having a hard time with her emotions,  but her outbursts irritate and frighten me at the same time. My worst fear is that someone will think I hit her. In other words, if you want to try a new mommy, keep it up and the good State of Illinois may make it very possible for you to have that opportunity.

Her moods have been a big struggle for me and I began to feel depressed over the past week and a half. This week has been good though, with several outings to the store. Wal-Mart has never been a favorite of mine, but we have shopped there a few times, solely because they have awesome wheelchairs available just inside the front door.

Over the past two days, Brenna's movements have become less stiff and she seems more comfortable. We are going to try sending her back to school for 1/2 days in the near future, possibly as soon as next week.

Sam is very careful with Brenna in a way that he never was before. He and Emily are always aware that she needs a clear path to walk on and that there are certain movements she is not allowed to do. Emily has been wonderful about alerting me if Brenna is trying to get out of bed on her own and the fact that they share a room has been a blessing; having that second set of eyes on her has been a Godsend. Sam and Emily have gone through the past month with flying colors. I know it hasn't been easy on them, but they have been supportive of Brenna and haven't complained about the time Greg and I were away. I think the week with my mom let them escape some of the tension and stress that was a part of the family home as we navigated through pre-op and all of the fears of what was ahead. I'm just feeling so thankful to be on this side of it and 1 day closer to a full recovery.

Thursday, October 10, 2013

Diarrhea: Cha- Cha- Cha

Yesterday was the pits. Yesterday Brenna had diarrhea all. day. long. I thought I would go insane. Because she is 12, she does not want my help, my arm when she is walking or my presence in this house for entire days upon end. After using the garden hose on her clothes in the backyard, I slapped a pair of Depends on her and gave up.

Today I hung clothes on the line and didn't panic about leaving her inside alone for those 5 minutes. Today a friend came by with two little ones to visit and made me feel normal instead of part of some social experiment or undercover reality TV show. It felt so normal to leave the room and return to find that Brenna had snuck into the kitchen, grabbed the opened bag of Peanut M&Ms and hidden them in her wheelchair back in the living room. Yes, this is the girl I know and love.

Today I discovered that I can take Brenna for a wheelchair ride and tie the dog's leash to the push bar. This made for much easier trekking uphill. He resembled the Grinch's dog (sans antlers) as he strained against the wheelchair. No more annoying tugs at my arm, just helping me pull Brenna around. He isn't husky, but he has the makings of a great sled dog. Today was good.

Monday, October 7, 2013

Monday, Monday

Brenna began her homebound instruction today and it felt so good to step away from her for an hour and work in another part of the house while she sat at the dining room table. She is wanting more independence and feels frustrated when I try to support her arm or hold her hand when she is walking. She purposely waits until I leave the room and then stands and walks. Today, I went back to my bedroom, only to hear the front door slam. When I went out to the living room to investigate, the wheelchair sat empty and there was no Brenna in sight.

She had decided she wanted to go outside alone. These are the moments where I don't know what to wish for-- I want her to get better as soon as possible, but wish she exercised a little more caution. The irony? She had walked outside alone, wanting to ride in her wheelchair, which was still parked next to the living room sofa. We ended up doing three wheelchair rides today. She is backing off of walking for me and is sitting more than she probably should. I have discovered that if we go on a wheelchair ride and park the chair to walk for a bit, she is far more receptive than if I try to get her to walk a track in our home, like the doctor recommended.

Ms. LeMoine brought us McDonald's today and we had a nice visit with her. She even braved a walk with us. It is so good to see a friend during the day. Stephanie and Faith swung by for an afternoon visit and gave us amazing rolls. We lucked out on our afternoon walk and found another friend outside and visited for a bit. Those little doses of social interaction are so important for Brenna and are keeping me afloat too. It has taken so many people to get us through this. I wish I could say that we just prayed and that God transformed us into emotional rocks, but that hasn't been the case for me. Instead, he has given us friends to hold up our tired arms and help us finish strong. From Tammy bringing Emily over to give her a break and girl time, to Mindy walking the dog and so many ladies delivering amazing meals, we have been cared for by many.

And you know what tomorrow is, right? Yes, Tuesday, October 8th--- and that means we have officially cleared the two week mark and can now shower without a trash bag and gorilla tape. Now I am out of excuses for bad hair days for Brenna.

Thursday, October 3, 2013

Wheelchairs, Rage and Trash Bag Showers

Yesterday was a tough day for Brenna with more nausea and a bad case of vomit hair. The tricky part with nausea and the aftereffects is that she can't shower for one more week, which leaves us with limited options for cleaning up. Daddy ran to Ace last night and we borrowed a shower chair from our next-door neighbor, Donna, and attempted our first trash bag shower. We cut a hole in the bag, sealed up the neck area securely with gorilla tape and showered away. She got a little bit damp on her back by her incision, but overall, I think it went really well and she was so happy to have clean hair again.

We hit a snag with getting Brenna's wheelchair from the medical supply company and I felt rage curl up and sprawl open inside of me like I haven't felt in a long time. I told Greg that right now I feel like Jekyll and Hyde with the lack of sleep and readjustment to being home. It was hard to listen to her ask for three days, "Wheelchair today?" and stare out the window, only to be told by the medical supply company that they had called and not been able to reach us and tried to deliver, but  no one was home. It only rubbed salt in the wound for me to remember that I will most definitely be home for the next six weeks and I unleashed some of that on the poor supervisor that I spoke to on the phone. By ten o'clock, I finally felt a small amount of shame for my behavior, but more than shame, felt worry that this could be a new, not so improved version of myself. I lay in bed and wondered at what point I would be considered psychotic and where the borderline is for normal grumpiness versus a mental illness.

It had rained last night and the sun began to peek through the clouds after Sam and Emily left for school. Brenna had been begging to go on a walk, so we got her settled into her wheelchair and walked for 30 minutes around the neighborhood. I had been so afraid of facing 6 weeks or more of isolation-- friends at work and family a few hours away and just Brenna and I at home. But just a minute into our walk, we saw a neighbor out walking with her girls and God graciously provided adult conversation, just when I needed it most. A friend from work called and asked to come and have lunch with us today and friends from Dragonfly Dance came by to visit after school. Maybe it was finally having the wheelchair, maybe it was God's goodness to provide just what I needed when I needed it or maybe it was the vitamin D, but I actually smiled and felt happy.

Brenna begins homebound instruction on Monday and I am looking forward to stimulating her mind beyond reading to her and watching unhealthy amounts of  Curious George, Mr. Bean and The Magic School Bus. She continues to get stronger everyday and now stands on her own whenever I leave the room. After I take a bathroom break, I never know where I'll find her: kneeling on the floor, in the kitchen attempting to retrieve an ice cube for her drink, or attempting to play outside. It reminds me of the toddler years, so we are limiting Mom's fluid intake and hoping Brenna continues to make gains with her balance so that I can use the bathroom during daytime hours very soon.  Until then, I am seriously contemplating using Brenna's Depends.

Tuesday, October 1, 2013

Not as scarey as I thought....

Yesterday was a nail biter. Yesterday was being surrounded by fantastically competent people, who were asking me to do what they had been doing. It was the tension of having Tamra from PT watch me move Brenna from bed, knowing I needed to figure out how to do this solo by the end of the week. Greg's work has been fantastically supportive, but he can't stay home forever. At some point the big girl undies need to go on and mama has to step out in faith.

Today I got Brenna out of bed on my own, after she rested from walking around the house. Late morning found me helping her shuffle to the bathroom and setting her down on the toilet correctly, without any dire consequences.

Today brings the sense that I am really not going to cause her harm unintentionally, cause paralysis or permanent deformity by my lack of know-how. She isn't going to topple from the chair, though she might try to get up without me.

I'm discovering that it's okay to lay her in her bed for 10 minutes (with the side rail up!!!) and put the laundry away. It's okay not to read to her, talk to her, cue up Mr. Bean every second of the day. She needs a few quiet moments to collect her thoughts and deal with being a 12 year old girl stuck at home with Mom for 24-7 for at least 6 weeks. Talk about the challenge-- it isn't going to be her autism or spinal fusion, but having my constant presence. In so many ways, she is a very normal, active 12 year old whose mother drives her crazy.

There is confidence within me that was not there yesterday. In fact, I have enough of it, I could probably wear mascara for the day and keep it on. But who cares about that? That is so two weeks ago.....