Tuesday, November 19, 2013


After the storms cleared and the clouds had blown past, I started up the van and began driving towards home. I have lived in Charleston for several years, but still don't call it home. I passed Arcola, with two semis blown over. I felt like the Levite and priest in the Good Samaritan parable as I blew past, watching the other cars that had stopped before me to check on the drivers.

Next came Pesotum, with debris littered across a field, looking like a metal bin had exploded, sending strips of metal ricocheting, wrapping itself around guardrails on the interstate. I thought of our friends in Washington, whose home was spared, and Greg's other co-worker whose home was not spared and a landscape of leveled homes, with families in shock and not sure where to even begin.

That night, I sat in an old church lit with candles and listened to Sara Groves sing "Open My Hands". The lyrics "He withholds no good thing from us" bounced around the walls of my mind. It is an age old question with no easy answer. Why does He allow it to happen? Working through issues of abuse years ago, I felt a rage to this question that shook the walls of my faith until they crumbled and began to give way.

As Sara shared the basis of her song and how she had asked that question for years, she said that she knew the truth was that God allowed horrible things to happen to those that loved Him. But He never withheld himself.  He was the one good thing.

I had waited years to hear the answer to my question.

"For the Lord God is a sun and shield; The Lord gives grace and glory; No good thing does He withhold from those who walk uprightly."
Psalm 85:11

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.....

Monday, September 30, 2013

Homeward Bound

I slept on the windowseat couch last night and when I woke up this morning, I listened to the nurses give Brenna medicine and I looked out the window. The moon was a small crescent and looked exactly like a Cheshire Cat smile. I felt like it was a little "God Wink" echoing the lyrics of Sara Groves, "It's Gonna Be Alright".

We have noticed a huge leap in Brenna's speech in the past 24 hours. There aren't the long pauses and hesitations that we have become accustomed to. Somehow, this surgery, or the medication she has received afterwards, has affected her speech. My sister made the comment that she couldn't believe she was really talking to Brenna. Maybe part of this is due to us seeing her in such terrible shape in PICU and now seeing her healthy and happy, ready to go home, but I think there is more to it than that.

I feel nervous to take her home. I don't want to move her incorrectly or cause her extra discomfort and want to do everything exactly right. She is so eager to move, get dressed and get out of here. However, I am going to miss several aspects of the hospital. The nurses are so kind and positive here-- maybe some of it is a "fake it till you feel it", but if so, that works for me. When we take Brenna out in her wheelchair, no one stares or makes a comment. I thought I had outgrown the whole stare anxiety years ago when she had some unique behaviors as a toddler, but I find myself just wanting her to feel comfortable in public and not conspicuous. It feels safe and insulated here, with a predictable routine and a lovely red button I can push when I am in a panic and don't know what to do for her.

There aren't any call buttons at home, but there are some knowledgeable friends who are willing to help us and stop in those first few days. So, we are taking a deep breath, eating our Cheerios, and packing up to come home. We'll see you soon.

Sunday, September 29, 2013

Solid Foods and a Goal

The doctor came in at 7 this morning and said that the incision looks excellent and that she is healing nicely. I asked him when she might be able to go home and he said that tomorrow would be a reasonable goal. Part of me is so excited to take her home and part of me is nervous. She has had great care here and I am hoping we can match that care at home.  After the doctor left the room, Daddy asked her if she heard where the doctor said that she could go. "The zoo?" she asked. She is such a zoo nut.

Brenna ate her first cracker since surgery today. She visited the garden and her physical therapist helped her out of the wheelchair so that she could walk along the paths. Brenna did really well. She is not requiring much pain medication right now, despite her activity level.

Right now she is watching "Because of Winn Dixie" and happily resting in bed. She has been awake all morning long without a nap and talking up a storm. She is very excited that her cousins got a new puppy and has been talking about that quite a bit.

Ms. LeMoine and her girls are headed our way this afternoon and Brenna is excited to see them. She plans to show off her physical therapy skills during their visit. We'll have to see if we can get her to stand up straight, without slouching her shoulders. It still throws her to be so much taller and to see  everyone else from a higher perspective.

Her french toast just arrived and she is nibbling away. Hopefully she will reach her goals today :o)

Saturday, September 28, 2013


Our morning began with Brenna taking her oral meds without any nausea, followed by her "wing and a prayer" IV coming out. It had begun to leak and was probably a bit precarious because of its location and the constant need to roll her side to side each two hours. I felt sick to my stomach when the nurse checked and verified it was leaking, about a minute later it slid out. We probably had close to 200 people or more praying over this tiny IV. You might find it interesting that it dislodged just moments after she finished her last IV antibiotic, which she now no longer needs since her drains are out. I sincerely believe God allowed it to continue working in that tiny vein for every moment it was needed and then let the angel holding it in let go of it since his arm was falling asleep. God knew she would start drinking for us today, the doctors would figure out the problematic medicine the night before and that we wouldn't have to go through the trauma of an EJ.

Greg had a long run scheduled for today for his marathon training and went ahead and headed out to Forest Park for his run.  Shortly after he left, the physical therapist came in and helped me walk Brenna to the nurse's station before situating her in her wheelchair, where she needed to stay sitting up for an hour and a half. This felt  intimidating to me because I have relied pretty heavily on Greg for her therapy time. She looks so unsteady in the chair, like she could topple forward, but the therapist assures me that her foot placement won't allow that to happen. So, we took a deep breath and headed up to the garden. While there, we saw Candace, Carson's mom, wheeling him through the garden also. Brenna initiated conversation with Candace, telling her that her birthday was coming soon. Candace was surprised by the change in Brenna within 24 hours. Her little Carson, Brenna's PICU roommate, is doing really well and gets to leave to go back to Kansas tonight. They were so excited to be leaving and I am so happy for Carson that he will get to wake up in his bed tomorrow morning. Candace gave me her e-mail and I am excited to stay in touch with her. There is something that bonds you to another parent going through something so similar with their child.

Brenna was pale when we put her back in bed, after her therapy session had ended. As we laid her down, she asked, "Go on walk?". She wasn't ready to quit. She knows she has to get stronger to go home and she is working so hard at doing her therapy.

Tony and Jennifer came to visit us and it was so good to see faces from home. We haven't seen friends and family for a few days and it made the evening go by so quickly. Brenna was really excited to see them and was happy to have company. She twirled her hair and joined in the conversation a few times-- I felt like we were seeing the old Brenna again.

After the Reeleys left, Greg and I sat near Brenna's bed, talking and checking e-mail. Out of the blue Brenna stated, "I'm so glad Dr. Lenke fixed my back." I was amazed to hear her say this. I didn't know if she would say this 6 weeks from now or even a year from now. It was hard to put her through something so excruciating when it wasn't her choice, but Greg's and my judgement for her best interest. Part of me wondered if she would ever resent me for this, if she would hold the pain or the long incision scar against me. Part of me hoped she just wouldn't remember this week in the hospital, as is the experience of so many spinal patients.

I don't pretend to think that we have cleared every hurdle and are on a straight and clear road to recovery. I am sure there will still be plateaus and even set backs, but today gave us hope. And to be quite honest, we were needing a little bit of that.

Friday, September 27, 2013

Setbacks & Progress

Today started out so well, with Brenna sleeping soundly through most of the night and taking oral medicine, but by late morning the day had turned a different direction. Brenna had oral pain medication last night and tolerated it, but when she received another dose in the morning, it was followed shortly after by vomiting. She wasn't able to absorb all of the pain medication and when Greg stepped out later to switch the laundry on the 5th floor, she began to thrash in her bed and attempt to roll over.

Right now it is imperative that her spine remains straight and I had flat out panic when she began to yell and thrash. As far as we are concerned, we haven't come this far to have the wheels fall off now. Brenna's voice didn't sound at all like her and she was insisting she needed to get up to use the bathroom, despite the foley catheter still in place. I had put down her side rail earlier to hold the bucket for her and now couldn't reach across the bed to pull it back up. Asking her to relax and lay flat, I tried to partially lay across her to keep her from getting up and reached for the call button. She knocked the bucket from the edge of her bed and began to slide her leg off the bed towards the floor. Two nurses immediately came into the room to assist and supported her with pillows into a more stable position instead of the one she had tried to roll to.

It felt like too much and it felt too hard and I hung my head over the side of her bed railing and cried. Tim, with PT, came in for her scheduled noon therapy. "Well, I think we should hold off on therapy until later. We need to get pain and nausea under control and then take it from there. I'm not worried about her. She wants to do this and I know she will do this as soon as she feels good enough." He clapped my shoulder, "Hang in there, mama." 

I nodded, laid my head back on the rail and kept crying. It felt good to let it out and it felt good to be surrounded by nurses and PTs who weren't bothered by my emotions. I didn't want the new student nurse with pitying, clucking sounds anywhere near me. I wanted the no-nonsense, tough smiling nurses who have seen it all and know that it gets better.

Because it has to get better. It really does. The panic of not being able to care for her on my own at home has to be put aside, because as Greg reminds me, she is going to continue to get better and she won't be at this plateau a week from now. She is so ready to get better and when we clear the tummy hurdle, we all have the sense that she is going to take off.

A few hours later, pain management in check, she sat up in the wheelchair for an hour and Greg wheeled her down to the garden. I was still wimping out and hiding with a cappucino in the cafeteria when he texted me about her progress. Greg would make a great nurse, but I don't think I would last a day. She smiled when we pulled up Sam and Emily on the laptop screen for a Google Hangout and smiled again when she listened to Grandma and then Jennifer on the phone. So we begin late morning with a bang and wrap up our day with a quieter, more comfortable Brenna in her bed. I believe tomorrow will be the day of improvement :o)

Still trying to feel better

Brenna has shown us a side of her these past few days that we have never seen before. She is intensely determined to get better and has been very tolerant of the endless pokes and prodding that she wakes up to and then continues throughout the day.

I went downstairs this morning just to stretch my legs and get a new security badge. It shocked me to see the date: September 27th. I can't believe we have been here since the 24th. It feels like one long day in the hospital. When I have visited the 8th floor garden, I have on jeans and a sweatshirt, only to find that outside it's in the 80's. It just gives a reminder and awareness that there is a whole world going on outside the hospital, but it feels very far away.

I am usually a news junkie and love hearing the morning news, but our stay here has bred an ambivalence. I couldn't care less if the government shuts down or if the ISBHE gets its act together with class ratios and IEPs. All I care about is seeing Brenna up and walking again and able to act like herself.

The sound of the helicopter is a frequent soundtrack here and I wonder if Daniel, our IV hero, is on board, flying overhead.

All is well with Sam and Emily back in Charleston, so for now, we can just focus on the here and now: the moment by moment, the afternoon naps while she is napping, the surprise of seeing that the sky is dark already and not knowing where the day went.

And Brenna is still sick. She doesn't complain, just continues to try.

"We are hard pressed on every side, but not crushed; perplexed, but not in despair;"
2 Corinthians 4:8

Thursday, September 26, 2013

PICU and the 10th Floor

Staying at the Children's Hospital has been like entering another world. Instead of "Where is the best restaurant in town?" , it's "The hot showers are on the 5th floor". When someone asked our PICU nurse if she was busy, she nonchalantly replied, "I'm holding an arterial line here. I'll be out in a minute." When we didn't have a scrunchy or rubber band to pull back Brenna's hair before surgery, the nurse efficiently snipped the ends off of two blue gloves and handed me the rubber band ends to do her hair. The messy pigtails we put in stayed in for two days and the nurses would ooh and aah over her hair and tell her how cute she was.

I always thought that if my child was very sick, I would be calm and collected. Instead, when I saw her lying in PICU with her face gray and trying to cry and unable to, I felt like I might throw up and pass out. I couldn't even hold her hand for more than 5 minutes. I had to ask Greg and my sister to take turns holding her hand for me. I wasn't the mom I thought I was and that was ok.

I didn't care if my hair was brushed or makeup was on. I really didn't care that I hadn't brushed my teeth in 24 hours or that I had slept in my clothes. I didn't care if the trash company got paid by the end of the month with online bill pay or if I spilled antibacterial hand foam on the floor. I didn't care if I cried in front of strangers in the lobby on my cell phone or if my conversation annoyed them. There was something bigger going on.

The sound of crying babies isn't annoying here. Hearing a child get sassy with their mom is the welcome sound of someone finally getting better. The crunching sound of Brenna with her ice chips is music to my ears.

The drains and lines aren't scarey anymore; what's scarier is the fear that the IV in her foot will give out.

I woke up with the knot in my stomach this morning, took a long look at her and immediately relaxed. We weren't in PICU anymore. She was on the 10th floor. She was comfortable, her cheeks were pink again and the surgery was over. It's going to get better.

Friday, September 20, 2013

Sedatives and Denial

Brenna had appointments scheduled in St. Louis over the course of two days, so we opted to spend the night. The testing on Day 1 was pretty basic. They checked her lung capacity, listened to her heart and had us speak with the anesthesiologist. Day 2 was lab work, MRI and CT Scan.

While at the hospital, I attempted to talk to Brenna about her upcoming surgery. We hadn't given her a specific date, but as we met with doctor after doctor, each confirming her surgery for next Tuesday, I felt like we needed to talk about it.

"Brenna, they are going to fix your back next Tuesday. They are going to make it straight so that you can stand up tall. You'll be taller than Mommy! There will be therapy dogs at the hospital and Daddy and I will be with you the whole time."

She paused for a second. "No. I have library on Tuesday." Each time I tried to talk about next week, she stopped me to reiterate that she was not available to hang out in St. Louis. After all, her sixth grade class has library on Tuesdays. I haven't begun to break the news to her that she will be home recovering for six weeks.

Denial is a helpful place to live sometimes. It helps one to cope and stay in the moment, not letting fear of the future press in. I don't think there is any way to truly prepare her (or us) for what is ahead. I can hear the talk of PICU, a vent, multiple lines and tubes, but until I see it--- I will have a small, insulating cover of denial to tuck in around me, keeping me warm and allowing me to continue parenting and being of some use at home to my family. I know the cover will wear thin and have holes blasted into it on Tuesday, but until then, it's useful.

As Brenna cried and fretted, a nurse stayed with her almost constantly. At one point she turned to Brenna, "I'm scared, hold my hands and help me feel better." Brenna clasped her hands and the nurse turned them over, to check her veins. A few minutes and one dose of Versa later, Brenna had an IV in and all of the necessary labs taken care of.

Three hours later, I sat on the edge of her bed, waiting for her to wake up in recovery. A father walked past our curtain, holding a preschooler in his arms. Her wispy curls were whipped into a bedhead tower and she was limp on his arm and shoulder as he walked out. Sitting quietly, Greg and I just listened to the conversations around us.
"Oh, no! Roxie forgot her feather again!"
"You're kidding. Not again! She was so excited about it, too."
"She still has treatment upstairs, I'll take it up to her" and then a tiny woman scurried past us, holding a peacock feather taller than she was.

Brenna's mouth hung slightly open and she made a snoring sound. It reminded me of visiting my grandmother in the nursing home. In that moment, to me she looked fragile and precious. I still saw her as my preschooler with a head full of curls, not an anxiety ridden 12 year old who had rolled her hair into dreadlocks in front. I felt grateful that she was having this surgery at 12, when she could be treated at the Children's Hospital, instead of having the surgery as an adult, at another place where perhaps no one cared if you had left your feather behind.

To me, she is still little. And perhaps that in itself is denial. But again, denial can be a pretty nice place to live.

Friday, September 13, 2013

He's Got This

On Thursday, I dropped the children off at school with a big wave and smile. "Have a great day! Have fun at Girls on the Run! Don't forget your binder..." sounding so normal, so predictable, so ordinary. Then I came home, leaned over the kitchen counter and sobbed. The dog looked at me, sighed as if to say "Here we go again" and climbed into the bay window, waiting for Greg, who does not sob in the kitchen, to come home from work in 8 hours.

I felt overwhelmed: surgery was two weeks away, the dryer was broken, the bathroom wastebasket smelled like poop and Sam's favorite shirt had a stain. For five minutes I let it all out: the fear of surgery and complications, the fact that it was rainy and the clothes would not dry on the line, the lament that there forever is a poop smell in at least one room of my house, and that the shirt was going to have to go into the trash.

Having reached a numb point of acceptance of all of these things, I checked Facebook, only to find a message from the pastor of our "home away from home" church. He just wanted me to know that his family was aware of the date for Brenna's surgery and that they were praying. Seeing that made all of the difference. He had never sent me a message on Facebook before and when I looked at the timestamp, it was sent at the exact moment I began my sobbing lament over the toast crumbs on the kitchen counter.

I have seen God show up in the most obvious and amazing ways in the past two weeks, through checks in the mail, to the van window opening and closing again, learning that Brenna can be sedated for the most traumatic parts of her testing and having the surgery date move up from February to September.

Seeing the message on Facebook was like hearing Him whisper, "Hey. I said I've got this and I meant it."

The dryer still isn't fixed. I bleached out the bathroom wastebasket and for at least a few hours, my home will not smell like poop. Sam's shirt is still a lost cause. But I have peace. And He's got this.

Sunday, July 28, 2013

Surveys and the downward spiral

As a mom of a child with special needs, I often hear about opportunities, resources and special events. I also hear from college students trying to collect surveys to finish up thesis projects on topics such as "coping while caring for a child with special needs".

I'm a college graduate. I know what it is like to depend upon the mediocre masses to help you pull the grade that you need or complete that final project. Who hasn't had the misfortune to be stuck in the group with the frat boy who was drunk the entire weekend, thinks that Hamlet is a menu option at IHOP and couldn't care less that the small group will report on it for a shared grade? But I digress.... when a college student needs a survey, I'm your girl.

The latest survey I received was on coping strategies; after filling in my marital status and level of education, I cut to the chase and was confronted with emotions I hadn't anticipated. I was supposed to "list the information received". Information? From who? The only reason we found the birth-3 program was because a few of the therapists attended our local church. When I had asked the pediatrician about whether it might be helpful to pursue early intervention therapies, he had shrugged and given me a wobbly "Maybe. It could help." In other words? Your child has special needs. Therapies won't help. She'll still have a cognitive disability.

The list went on for coping strategies and resources:
The church? Hobbies? Sleeping? (Sleeping was a good one--- who the heck gets to sleep when your autistic toddler can go all day on 4 hours of sleep? This option was for affluent families with nannies.) Maintaining a positive approach? Exercising? (The exercise was chasing her when she would get overstimulated and run away in the grocery store parking lot-- I must say, I had some nice lean years during this phase of her development). Participating in a hobby? Or perhaps my personal favorite: participating in social events. Thinking of social events made me remember the 4th of July that Greg was out of state, watching fireworks with the church youth group in D.C. and I was home alone with all three children, straining to watch fireworks from the top of our wooden swing set, sure that the entire country was out having a magical, patriotic moment while I was home alone.

After reading the start of this list, my blood pressure began to rise and a tension headache began to form. Did I somehow repress the emotions behind the toddler-kindergarten years of autistic behavior? Because I am sure that I was absolutely fine until someone asked on paper what had helped. As I scanned through the list, I began to see that is hardest part for me was to remember how alone I felt. Towards the end of the list was "support groups" and "avoiding support groups". Support groups in my book were a calling card for bitter, angry mothers who swear the school district is out to deny their child of any sort of education or positive social experience. I avoided support groups like the plague. At the time, I thought I would rather just scrub the poop off of the walls of our home and pick up the hair she had pulled out and just eat a candy bar in the laundry room. And this method worked out well for several years because I had a decent metabolism in my 20's and a steady supply of Snickers bars in the laundry room.

Now I'm 36. My metabolism stopped working two years ago and Snickers aren't the free pass they used to be. I enrolled Brenna in a dance/speech therapy group only to find that the other mothers there were amazing. Instead of hearing a barrage of woes (like you have in the 3 minutes of wasted life that you used to read this blog), I hear about what their child can do. "He's never made eye contact like that before! He's never reached out for a friend's hand during dance before! She has never done a complete spin on her own on cue before!"

The true sting of the survey comes from seeing the wasted coping mechanisms I attempted and remembering the desperation I felt at that time. The church wasn't ready yet-- they didn't know what to do and I didn't want to be the one to tell them what I needed at that time. I already felt like a lame afterschool special meant to teach tolerance and diversity and I felt like a failure as a parent. It felt like the equivalent of jotting down a wish list and then holding out my hand expectantly to receive; I couldn't do it. Hobbies were a joke for me. Like scrapbooking was going to help me by preserving memories when I just wanted to forget the events of that day? Sleeping was a luxury. Exercise was part of the job description. Social events weren't possible yet... the key word here being "yet". I needed friends walking the same path that I was. Yet somehow I thought I was a stronger, more capable mom if I could hold it together on my own. But the holding of the togetherness was done with a shaky, white knuckled grasp.

The older I get, the more I realize how little I know for sure. There were other moms doing the same things that I was, experiencing similar situations, questioning themselves and asking God why He hadn't given their child to the developmental therapist who came to visit every Tuesday and knew how to really help her instead of placing her in our home where I felt completely clueless. I loved this child, but felt so unprepared.

If I were to fill out this survey for the present, the results would be so different and much more positive. Much has changed in ten years. I find that it is dangerous for me to look back, when I really just need to be in the present moment. If I can just live here and embrace what my reality is, I find it is a pretty decent place to be. I love my children, but I wouldn't go back in time for anything. And that is okay. The good news is that the survey has been submitted via e-mail and I am moving on.

Saturday, July 20, 2013

All tied together

I finished the book "Invisible Girls" this week and the author gave her perspective that life isn't about highs and lows coming one after the other, but rather a constant mix of the two. Somehow I never viewed it this way before; instead of a fluid movement of good and bad woven together, it has always been easier to assure myself when something bad happens that I have somehow paid an outstanding balance on bad karma and can now look forward to unexpected blessings coming my way.

Today seemed to validate the author's viewpoint. I began my day with Brenna fixated on forgotten Cool Whip during a shopping trip. We were wedged in the checkout lane between the customer paying for her groceries and another person ready to load theirs onto the conveyor belt when Brenna gave me a firm reminder, "Don't forget the whipped cream for the worms and dirt." We had the "worms"; we had the "dirt"; we even had the pudding. But cool whip? Really? I didn't remember that ingredient. My option was to hold up the line and hope that Brenna would stay put with the cart while I ran to the freezer section or let it go and hit another grocery store on the way home. As absurd as it sounds, I opted for the latter. Brenna about had a meltdown. "We need whipped cream!" she chanted. She was still repeating the woes of the forgotten Cool Whip when I pulled into the garage and began to put the popsicles away in the freezer, the same freezer which was now completely thawed thanks to someone leaving the door open a full inch. The entire freezer full of meat was a lost cause.

 I bagged up the contents of the freezer and then Greg placed the full trash bags back into the freezer so that we wouldn't have to deal with stench and have the neighbors suspect we are hiding bodies for the mob. We decided it would be best to wait and pull out the cold contents on Tuesday for trash day.

After tending to the freezer, Brenna was still harping on the whipped cream. After 45 minutes of non-stop reminding of my failure to secure that key ingredient, Greg broke under pressure and drove back to the grocery store.

As I pulled out of the driveway and headed to Champaign to meet a dear friend, I lost it. I played my sappy Celtic Woman CD and sobbed for the woman in Caladonia, the woman who blessed her husband from beyond the grave and the woman whose husband left her. The festival of tears lasted for a good twenty minutes and somewhere in the time, I also let out the anxiety and frustration over waiting for Brenna's surgery, for the fear that I walked away from a job I should have taken, for the spoiled food I had to throw away, for Brenna's obsession with my reminding me of my failures and for my current state of PMS.

By the time I pulled up to the restaurant to meet my friend I felt relaxed, happy, ready to connect with her and hold that sweet baby. I tried to remember the last time I was alone long enough to cry and just get it all out... it had been awhile. And while the day started badly, it ended so well.

I often go back and forth and wonder what I need to do to just be happy. And yet, it might be as simple as letting myself cry.

Monday, June 10, 2013

Putting it off

I tend to put off unpleasant things. Things like changing a juvenile e-mail address to one that is more appropriate for a grown-up, picking up after the dog in the backyard, returning a phone call that may involve telling someone 'no', these are the things that can be drawn out over long periods of time. Typically what snaps me out of it is accountability, or the impending arrival of company.

I have known for three years that we need to talk to someone about Brenna's back. I can see the curve; I know that it is affecting her gait. Yet, there are unknowns that scare the liver out of me and allow me to live in a place of denial, not allowing it to take up daily space in my head.

Friday is the big day for us. We will see her General Practitioner and most likely get a referral to talk to a specialist about what needs to be done. I feel a heavier burden for Brenna's health issues. Why this is, I don't know. I love my children equally, but I feel more responsibility towards Brenna. I am fearful that we will have a decision to make and have to trust that the decision will be bathed in prayer and we are guided into the best decision for how to proceed.

Monday, May 27, 2013

The Amazing Fix

We just returned home from staying with family out east. Spending 6 days split between two homes was an enlightening experience. It may sound ridiculous, but when you live with someone for a few days, you pick up on the little things they do that makes life simpler. One such simplifying discovery was a removable shower head. I was in awe. I informed Greg that this could be a life changing addition to our bathroom at home. Since the Mother's Day project (refinishing the porch swing) is still in progress (i.e. pieces) out in the garage, I told Greg that the swing could go into a box for all I care and the showerhead represent my belated Mother's Day gift.

For years, my morning has consisted of frequent "surprise showers" for my oldest. She still needs help showering and it typically means that I end up soggy from arm pit to knee. But a removable showerhead? I may never wear wet clothes to work again. A vision danced through my head of neatly pressed (and dry) clothes, looking purposeful and tidy as opposed to the rumpled, damp, I-may-be-too-hip-to-care-or-just-completely-sloppy-look that I tend to sport.

True to form, Greg hit Home Depot the day after we arrived back at home and came back with the magical shower head in tow. Its promise all but sparkled with fairy dust as he installed it for me in the bathroom.

Emily had the first shower and offered to hold the showerhead while I worked the shampoo into her hair. She promptly waved it in front of me, completely soaking my side. "Okay" I thought to myself, "a period of adjustment is to be expected here." Brenna went next and in a flash grabbed it from my hands while I attempted to condition her hair. The bathroom floor was sprayed with a sheen of water and the right leg of my jeans were soaked through.

It looked so promising. But I discovered that the problem was with me.

My husband and I are looking at a home a few miles away. With the challenges we have had in the past year, a change could be a good thing. And although it seems simple to trade in one set of problems for a fresh start, is it really what we are supposed to do? Or is that new home like the magical showerhead: full of promise, but no real change from the underlying issue. Only time will tell.

Friday, January 11, 2013


Brenna has been looking forward to her doctor appointment for weeks. Whenever she gets to go in for a routine checkup and have someone's undivided attention for 15 minutes or more, she is in heaven. I had the paper in hand, ready to jump through the hoop to get the signature for her Special Olympics participation form, only to find that she could only have one physical a year. She enters 6th grade in the fall and will need a physical and series of shots for that--- the doctor suggested that we take care of it today.

I have had cold sweats off and on for the better part of a year anticipating the 6th grade physical appointment. Brenna is 3 inches shorter than I am and nearly weighs the same. When she was little, I could hold her still, later on I could sit on her. Now, it's dicey.

He finished the exam and said. "Okay ladies, the nurse will be in with the shots in just a moment."
"Sharks?" Brenna queried, looking at the marine life poster on the wall, sure that she had just misunderstood and that he was again bringing up the shark she saw on vacation last year. I let the door close before I broke the news.

"No, honey, not sharks, "shots". You need a shot to go to 6th grade at Jefferson. You want to go to 6th grade next year, right?"

She whimpered a "no" and her lower lip trembled. This was the pits. How many nurses would it take to help Brenna get her shot? It was like an intro to a bad joke. One nurse later, one very kind, patient nurse later, we had three shots in two arms and were on our way to McDonalds to celebrate. I didn't have to sit on her, I didn't have to call in reinforcements-- it was nothing short of amazing.

At McDonalds she sidled onto a tall stool, seated just inches from strangers on each side. Brenna was completely comfortable sitting by three strange men on either side of us. She echoed what one man said to start a conversation and laughed when Henry ate his pickles. Sometimes I think she has better social skills than I do.

Sometimes it's nice not to know what is ahead, whether it's shots or having a child with special needs, a medical crisis or death in the family. It's nice not to know. It's good to take a day at face value and simply live it.

Wednesday, January 9, 2013

Asking Big

This morning I prayed and asked God to do something really big today. Not next week, not in a few months, but today. It has to be today. I can't remember the last time I prayed a prayer like that-- a dreamer's prayer where you just lay it out and have faith that He will come through.

For the past few years, my prayers have been very safe. They have been "blessing" prayers, with my true hopes cloaked in a very thick and protective "Your will be done", which wasn't wholly meant, but was more of a safeguard in case He didn't answer. Those weak and politically correct prayers didn't go up with a whole lot of faith that He would do it. Part of the problem was a feeling of unworthiness. After all, there are a multitude of world crises going on--- do the prayers of a mini-van mom really even count? Do they have the intense importance to shoot straight up to the heavens, or do they filter and break apart just before the stratosphere?

They do matter. I have such a deep and real sense this morning that they do that it rocks me to the bottom of my soul. He knew it was coming before I bowed my head--now I am waiting for the answer. Have you asked Him big today?

Do not be like them, for your Father knows what you need before you ask Him.
-Matthew 6:8

Thursday, January 3, 2013

Will she ever?

Our family ate at Buffalo Wild Wings yesterday for Greg's birthday. This is nothing short of miraculous to me. In a place with multiple TVs on every wall, loud music and close seating, our family actually sat down and ate together. No one ran away. No one cried. No one did beat box rapping at our table. No one bit or was bitten. No one hid in the bathroom for several minutes at a time. And most surprising, no one stared at us. This dining experience comes in only second to watching the 4th of July fireworks together.

As I watched Brenna calmly hold the menu and choose the popcorn shrimp, I realized that each child, regardless of who they are, is completely in the realm of "wait and see".

When your child has "autistic tendencies", there are some aspects of normal that you dismiss and walk away from. You act like you don't care if you see the fireworks, like it isn't a big deal that you skipped the mall with the santa or that you may never go to Disney. You never volunteer for the Holly Day Breakfast, not because you don't care or support the PTA, but because your child would melt down in the controlled chaos within 10 minutes or less. These choices aren't driven by finances, but by past experiences with your child. After so many times of sensory overload in a crowd, one begins to avoid and stop seeking out ways to prolong the torture.

Brenna turns 12 next month and has already passed some of the projections that specialists had predicted for her. When she was small, I was the crazy mom that drove the therapists and specialists nuts.

Will she ever look at me? Will she ever use the bathroom? Will she ever talk in complete sentences? Will she ever live independently? Will she ever want to interact socially with her peers? Will she ever want to hug me, or care if I leave the room?

If someone had initials after their last name and worked with Brenna, I believed that they were like a trustworthy fortune teller, able to accurately predict what was ahead. I just wanted to know. I just wanted to be prepared. It drove me beyond frustration when I was told the elusive, "We just have to wait and see. It's too early to tell."

So many of the "will she ever"s have been answered with a firm yes. I only hope I didn't spend too much time straining my eyes, trying to squint into the blurry future, only to miss the crisp and distinct present.