Archives for posts with tag: Doctor

86BA8EED-38DB-42A3-905C-85390F56C695When Grace was two and we were much newer at special needs parenting we grappled with this feeling of always being vulnerable simply because Grace was Grace. We could be having a great day but find ourselves quickly feeling miserable, or angry, or scared, or frustrated by big or little things. It could be the stare of another child. It could be a phone call from a doctor with lab test results that needed addressing. It could be someone at work complaining about their healthy kid throwing a fit at Target and wishing with all your might that Grace would throw a fit at Target. It could be dropping all the plans you’d made for something fun because Grace was hospitalized.

Looking back we were struggling against not being in control and feelings of helplessness. There were people in our life at that time (some of them are still around) who helped us in big and in small ways. Sometimes honestly all it took to feel better was for someone to say something kind. For someone to want to hold Grace. For someone to offer an idea we could run with, a different perspective on Grace’s abilities, or even just to convey they thought Kevin and I were doing right by Grace.

At some point in her second year, we came up with the idea of the scarf to try and explain our experience as special needs parents.

Here’s how we explained it to ourselves.   Being a special needs parent is like being outside in winter on an especially cold and windy day. You aren’t there unprotected from the cold. You have boots, a warm coat, gloves, and a hat…you did what you needed to do to go outside. But somehow as you are out there walking, thinking you are all bundled up, cold air gets in under your coat and you are beyond freezing. A scarf would have prevented that cold air from sneaking in.

In our lives, we have to depend on other people to play the role of the scarf for us. To think that we can do it all just the two of us is too much.

So we played with the idea for a few years, it just kept coming back up. Then at some point we decided that sometimes it would be good to give an actual scarf to the people who are our metaphorical scarves. We made a card with an explanation. On the back of the card we make it all official using the tagline “a pink helmet production”. There’s a picture of Grace and Hoover that appears above the tagline. We take a picture of Grace wearing the scarf to put in the card. We tie the scarf with pink ribbon. And then we get it to the person. We don’t have strict criteria for receipt. And honestly, there are people who deserve one that we haven’t given one to.

I’m working on four scarf cards tonight.   Four women who have been a scarf for us and should know how grateful we are for the role they have played in Grace and our lives. They all brought warmth in different ways.   Our story isn’t the same without them. In a lot of ways a scarf is a small token of appreciation but hopefully, it is something that will impress upon them our gratitude.

It’s amazing to me that a metaphor we came up with when Grace was two hangs on today now that she’s 12. I also don’t believe we’ll ever outgrow it. What was true then remains true now. We are vulnerable simply because Grace is Grace and we will always need people to come alongside us in big and small ways so Grace can be Grace.






IMG_6440When people ask me how Grace is doing a lot of times I respond by talking about how grateful I am that she’s been out of the hospital this summer. Facebook has been reminding me everyday lately about Grace’s surgery, a trip to the ICU, and all the complications of last summer. I have to take a minute to say that I’m crazy grateful for how far she has come in the last year.   Our girl – the one with spunk- has fully returned!   Having the mitrofanoff has made it much easier to care for her- allowing us a flexibility I never even really dreamed possible.   We can be spontaneous with less planning!

Even though she’s been out of the hospital this summer she’s never really settled.   We are constantly tweaking things or watching something. As of this writing, one of the things I feel like we are chasing is the noise that Grace has been making. Our normally quiet girl has taken to being very noisy. Sometimes I think she’s just “talking”. Other times it seems to be a sign of distress. We’ve been trying to figure out why this is. The school year rapidly approaching adds a bit of pressure as even after doctor visits, x-rays, changes in meds, even a dentist check, we still don’t know what is causing her discomfort. We snuggle her at home when she gets to sounding distressed and that calms her. I can’t see that working at school in the same way. I have fears of her being ushered out of classrooms because she’s interrupting others learning. Next week she will be in her last year of elementary school. I’m increasingly aware that opportunities for integration will only become fewer and I want her to soak up every last drop this coming year.

Yesterday I was at Hy-Vee picking up Pedialyte. It had been decided that we needed to give her stomach a break and see if that would perhaps bring her more comfort. I left work 10 minutes earlier than I regularly do and found myself standing in front of several kinds of Pedialyte. Most had prebiotics. I have no idea what prebiotics are and didn’t have time to do any googling. (Grace is not allowed probiotics because of her port so my hunch was that prebiotics maybe shouldn’t be in her wheelhouse either.) So anyhow I found a bottle that didn’t say the word prebiotics on it and went to check out. Luckily there was someone at the express checkout and no line because I was pushing my time. I had to be to daycare to get Graham (who doesn’t always want to leave right away) and be home for Grace’s nurse to be able to go home. Anyhow, I found myself in the express line face to face with this very young looking man and to my horror, I start hearing the music playing in the store and my eyes tear up.

It was Miley Cyrus…It’s the Climb. The part I began listening in on goes like this…

“There’s always gonna be another mountain
I’m always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I’m gonna have to lose
Ain’t about how fast I get there
Ain’t about what’s waiting on the other side
It’s the climb”

So anyhow I start tearing up.   The chasing the noise to no avail. The weight of the past year. The fear. The constantly trying to get caught up. The advocating. The defending her. The unknown.

It all takes a toll. A really real one.

So much about Grace feels like an uphill battle. I wish sometimes it weren’t a battle just a slow and steady climb. But the battle sometimes is a war within ourselves trying to decide the right thing to do. Sometimes the battle is getting what we think she needs. Sometimes it’s about deciding what fights to fight and which ones to let go.

We want Grace to keep growing and learning and getting stronger. That’s the wanting to make the mountain move. She’s got crazy tough epilepsy that affects so much. Growing Grace is slow, long work that requires much perseverance and so much patience.   More perseverance and patience than I have some days.

We don’t know what’s on the other side for Grace. We are taking this one day at a time. That journey – that’s the climb if the song holds true.

So I realized it was a bit much – me getting all teary eyed in a store. I tried to put it in perspective. The tears receded. I was doing what I could for that day. I’d been on the phone with three of her doctors’ primary nurses. I’d been with Grace when she had a hard seizure that morning before I left her. I’d taken her to speech therapy. I’d given her meds, cathed her, dressed her, kissed her cheek, and handed her toys. I’d held her hand. And now I was going to give her Pedialyte and report to the doctor the next day.

I walked out of the store and away from the song.  I was, however, grateful that I had heard it play. Somehow it encouraged me to keep going.


IMG_5585I am looking forward to summer.

I want lemonade, fresh fruit, berry crisp, miniature golfing, and the feeling of the sun and heat soaking in.

I want less responsibility. Fewer things to juggle. A break.

To get to summer we’ve had to get past the last few weeks.

Grace had surgery last week in Minnesota to revise her mitrofanoff. We are hoping that will be her only surgery for the foreseeable future! She’s recovering well.

While we were in Minnesota Grace got all hooked up for an EEG. We were disappointed to discover that Grace’s EEG (a study of her brain activity) hasn’t shown any improvement since fall.   Her brain continues to experience a lot of back ground noise. We’d really thought it would be better after the addition of a new medication. In the last few months, we’ve seen better focus and more emotion. We’ve had her smile at us more. Her looks and eye contact have been so much fun. Her doctor reminded us that she’s not her EEG- if we are happy with what we are seeing that’s what counts.

Amid the highly scheduled past few weeks, we were alerted that there’s potential concern for her sodium levels so we are following up with some additional testing.

It’s easy to get trapped in the thought that Grace is all the things about her that we monitor and watch so carefully.   We have to remember she is none of those things. She’s a girl who loves to swing, loves music, loves to play, digs sparkle, and has a stubborn streak.

I saw that girl after her surgery. All snuggled under a blanket.

Before surgery I found myself overwhelmed with all the things about Grace. Her scars. Her medicine. Her past experience with anesthesia, etc. There is a crazy amount of information to pass on to the team of people we are entrusting with her care for an hour and a half.

I want a summer for Grace too. She deserves a break. We’ll never be rid of all the things about her. She’ll never drink lemonade or enjoy berry crisp. But she loves flowers, swinging, getting wet (as long as the water isn’t too cold) and being outside on a beautiful day.  We’ll work to spend the summer letting those things be the focus. I look forward to it.


img_1506As I write this Grace is sleeping in the tent we use for traveling. We are in a hotel room in Minnesota in December. It turns out all the tricks in the world couldn’t keep Grace from having to have one more surgery in 2016.

We had this really normal weekend at home; birthday cake for Graham, Christmas program practice at church for Grace and Graham, Kevin and I at the Civic Center to see the Carole King Musical, the actual Christmas program at church, and seeing the Nutcracker at Hoyt Sherman, complete with an intermission visit from some of our very favorite dancers.

The second we got home from the Nutcracker it changed a bit. We had to get Graham packed to go home with my mom and dad for a few days because Grace was having surgery. I’m very thankful that Graham hasn’t had to be there the day of any of Grace’s surgeries this year. The rooms where you wait with her before and with her after are small. Waiting rooms are hushed. There is a multitude of instructions. I have a hard enough time with my own feelings- as we wash her with the special soap, get her in the gown, answer the questions, sign the forms, talk to the doctor, the anesthesiologist, the nurse, try to get her to be still enough for the blood pressure machine to work, it’s so much.

While we were doing all of that Graham was building a sled for his Curious George and playing outside in the snow. He was hanging out with his cousins.  He was experiencing five-year-old boy perfection.

We drove north yesterday morning. The roads had been plowed pretty well, the trees were beautiful all covered with snow, the sky bright blue. It was crazy cold when we started and just got colder as got closer to Minnesota. So cold that we drove straight through not giving Grace her customary breaks to stretch her legs along the way. Our girl hates cold. Hates it. We did everything in our power to get her somewhere warm quickly.

When we arrived we hadn’t even checked in yet when Grace’s doctor – all dressed in her surgery garb- greeted us. She greeted us so warmly and told us she wanted to get Grace going early so she could get us home. We’d talk with her two more times – once more before the surgery where we showed her the pictures of everything that’s been going on with Grace’s mitrofanoff and we talked through how Kevin and I would take care of Grace for the next 7-10 days as she healed. We saw her again when it was all done when she explained to us what she’d found and confirmed that we were right to not wait to get the mitrofanoff revised now. It wasn’t going to get any better without a surgical intervention.

Grace took her sweet time waking up. The first time she woke she complained a lot. We asked that she be given some more pain medication. With that on board she slept a bit longer, and the second time she woke up she was pretty good. A bit groggy, but she made an attempt to grab some tubing and play. We got her dressed. Got her some formula in her stomach. Got her in her wheelchair and got her to the hotel. She played for a bit. Then we snuggled. She played a bit longer and then we got her to bed.

We have pain meds to get her home. There are antibiotics we will give her for six more days. There’s a catheter in her that we pray she doesn’t pull out. When everything’s had time to heal (it could take about 10 days) Kevin and I have a special syringe that we’ll use to take the catheter out of her and we will go about our normal business.

So for anyone who’s counting – that’s 4 surgeries in 6 months for our girl. That is way too many.   I for one am hopeful for 2017 that brings: health and strength to our girl, less worry and more together time for our boy, and energy, inspiration, and courage for Kevin and I to take our family out in the world and enjoy it.





img_4151We (Kevin, Grace, Graham and I) left for Minnesota on a recent Sunday. Our van was packed pretty full for a two-day trip. Grace doesn’t travel light.  (That’s a different blog post entirely!). Graham packed his own suitcase with the following belongings; a Santa hat, his Little Passports suitcase, slippers, his bug jar, books, sleeping friends, and Thomas the Train.

He was delighted to stay in the hotel that first night. He had a whole bed all to himself.   He swam in the hotel pool. Pizza was delivered to our room. Disney Jr. was on TV.

Grace was happy to be out of the car.

Grace had three appointments over two days. First, we followed up with the plastic surgeon about her eyes. All looks good. The swelling could last a few more months. We have one more appointment with the surgeon in January. After that, we will continue to watch her eyes with the eye doctor. If we see drooping again we go back to the plastic surgeon. Graham sat on my lap for the appointment. He played on the iPad at times putting his hand on my cheek and pointing my head down to see what he was doing.

After that, we went to Culver’s for lunch. One thing that’s different about Minnesota with Graham than without is our food choices.   When Graham is with us we frequent restaurants that serve chicken nuggets, chicken strips, pizza, or pancakes.   At this particular Culver’s we were able to watch the trains (the light rail) go by.   Graham led us straight to the tables by the big windows so we wouldn’t miss a single one.

We got to the second appointment. This one was with Grace’s urologist. The appointment has several steps; first an x-ray, then an ultrasound, then height and weight, then the doctor. Here’s where we had trouble. Grace needed to be cathed, needed meds, and needed food all at the same time. Graham wanted to be playing in the kid area on the other end of a large waiting room. That left one of us trying to get to all of Grace’s needs. We travel with a green bag full of Grace essentials. We put it on the back of her wheelchair. Things are organized and sorted into baggies. We need water – hot water for meds and some at room temp to keep her hydrated. There are gloves, lubricant, catheters, and wipes. Medicine, medicine crusher, syringes, and tubes are all in there too. Then the box of formula – that sometimes, depending on how you open it, drips a small amount of sticky white liquid on your hand, or the tube, but you are powerless to do anything about it because if you let go those few drops could become a lot more.

Graham was sure we were done after each step of the appointment. Because we were trying to meet both their needs we ended up feeding Grace as we talked to the doctor’s nurse and then the doctor. When we were with the doctor Graham did excellent. The doctor told us Grace will need a surgical revision of her mitrofanoff. This is not an immediate need. We have some tricks we can try to buy us some more time. Neither the doctor, Kevin, or I want her to be in surgery anytime soon.

Once we were done Graham was so excited. The Lego store at the Mall of America was next. But then we had to wait some more to schedule Grace’s follow up appointments.

All that done we left the hospital, went down the circular parking ramp, where Graham went “whee” and declared that he loved driving in circles. We were ready for his part of the trip.

He’d told us when we planned the trip that he definitely wanted to go the Lego store. It turned out he wanted to go to no other stores.   Lego store was done he was ready for his next objective. A train ride.

Grace was done being in her wheelchair.

img_4149After the train ride where Graham got to go under the airport on the light rail it was back to the hotel. He ate some pizza, played with his Legos, and went swimming in the hotel pool. He fell asleep in another big bed – all for him- watching TV.

We went to the breakfast buffet in the morning. He chose Cheerios. We talked with a few girls eating their breakfast. Graham and one of the girls had a jumping contest to see who could jump highest.

We packed up to head to Choo Choo Bob’s – Graham’s final objective. As we left the hotel room he made Kevin stay behind but led Grace and I outside to see the singing rock he and Kevin had discovered when we first got there. The singing rock is actually a fake rock with a speaker in it.   He was so excited to show it to us. He did a little tap dance as we listened to the music.

Choo Choo Bob’s was a lot of fun. We had to leave story hour after only 10 minutes to get Grace to her final appointment. Graham handled it well. Way better than is even fair to a boy at Choo Choo Bob’s. The last appointment was the eye doctor. Eye doctor appointments take at least 2 hours. Grace wasn’t being particularly cooperative. Graham actually scared the doctor when he popped out of the chair he’d been sitting in very quietly. After she’d recovered the doctor started talking about Grace’s next appointment. Graham interrupted her piping in that he didn’t think Grace should have any more doctor appointments.

Then, there were chicken nuggets for lunch with fruit punch to drink. We started driving home. Graham wanted to be home 20 minutes after we left.

img_4150I sat in the back of the minivan between the two kids as we drove home. There were moments when my shoulders held both their little heads. We’d done it. It wasn’t always pretty. Kevin and I hadn’t really unpacked any of the information we’d heard.   Having Graham there prohibits some of that.   But we’d seen a singing rock. Graham had gone under an airport. Grace doesn’t have to go back to Minnesota until January. We’d done it leaving no man behind. We’d done it together. I don’t feel like Graham should have to be with us every time, but sometimes he should be there. She’s his too.

A few months ago he’d asked me why anyone would stay in a hotel if their sister wasn’t having surgery. I tried to explain the whole concept of vacation.

Maybe he kind of got it.

I hope one day soon we can get him (and Grace) an actual vacation.