Archives for posts with tag: Family

screen-shot-2016-12-31-at-7-11-35-amWhen my mom and dad were here a few weeks ago I handed them their copy of our Christmas card. My Dad looked at it for a minute and then said: “Dan Wardell made the Christmas card?” I only replied with a yes and a smile.

Our card has many pictures on it this year – having time to get a family picture taken just didn’t happen.   Kevin and I ended up picking some of our favorite pictures from the year to include.

There are multiple shots of Grace dancing.  Dancing continues to be her “thing”. We are incredibly grateful for dancing!

Graham is shown at the Iowa State Fair proudly holding his peanut butter sandwich on a stick. (They custom made it for him since he doesn’t like jelly).

There are pics of Grace and Graham both from the summer camp we attended as a family – one is a beautiful picture of Grace with a big smile on her face having ridden a horse after way too much time away from horses. The second is Graham on the horse; he decided that he would give it a try after watching Grace ride. I love when having a big sister works in his favor in more of a typical way.

One of our summer bucket list items, a trip to the High Trestle Trail Bridge is featured. When we made the list we knew Grace’s medical needs would be a factor in our ability to complete it but we had no idea how much of our summer would be spent with her in the hospital. There were several things on the list we didn’t get done during summer, several that we accomplished but we had to wait until fall and a few that we will start our list for next year with.  I’m so grateful that it wasn’t worse – the trip to the bridge shows we did manage to accomplish some fun!

Grace is shown getting her new bike on the Variety Club telethon this year.   We were all on TV.   Fareway sponsored the bike and the executive who presented it to her mentioned that she perhaps could ride her bike to the new store they were building in our neighborhood.   Grace picked the color – bright orange. It’s amazing all the ways a bike can be adapted and we are tickled to be able to take her out for a ride!

There’s a picture of both Grace and Graham in their Halloween costumes. They each had the opportunity to wear their costumes a couple of times. Graham chose Ryder from Paw Patrol and was always on the lookout for fellow Paw Patrol costumes when we were out and about. Grace we chose to dress as Super Girl. We thought the costume was perfect for her – she consistently displays a strength that I can’t help but admire.

There’s Graham grinning like crazy the night he got his first bike and we went to “Old McDonald’s” (McDonald’s) to celebrate.

We made sure there was one picture of each of us. There’s a picture of Graham and Kevin the day they rode their tag-along tandem bike to the “golden castle” – the Iowa Capitol Building for those of you who don’t speak Graham. They were exhausted but so proud of themselves for doing it; a nearly 20-mile bike ride.

The picture I’m in is of Grace and I the day we had her 10-year-old pictures taken at the Botanical Center. Her turning a decade in January was a huge deal for us. Epilepsy for 10 years. Appointments for 10 years. Doctors, nurses, therapies, the grind, wear and tear, and wonder for 10 years. With everything that’s happened to her medically in the last six months, it sometimes feels as though another decade should have passed by now.

And finally, there’s the shot of Graham and Dan Wardell. Graham is a big fan of Dan Wardell from Iowa Public Television. So much so that when we taught Graham the game 20 questions on the way to Thanksgiving he had selected Dan Wardell in his mind to have us guess. Kevin and I struggled to figure out who he was thinking. Graham ended up giving us a clue that he is a man who wore a cape but not a superhero. We were so impressed that Graham had thought of him – until then the game had been focused on cousins, grandparents, and kids in his class at daycare. Graham’s brain and what it is able to capture, process, and remember makes us marvel.

Graham went to see Dan Wardell several times this year including breakfast at the zoo, the PBS kids clubhouse kick off and Dan’s birthday party hosted at the IPTV studios. The one that meant the most to Kevin and I though was when Graham attended story hour in Marshalltown so he could see Dan Wardell on his reading tour of Iowa. That day happened to be one of the many days last summer we were dropping Graham off to be with my mom and dad because something was going on with Grace and she needed our full attention. Somehow that he was seeing Dan Wardell was a distraction that Graham needed, and made us feel better as parents that we weren’t neglecting what he loves and needs as we took care of all of Grace’s needs. When I called Mom and Dad later that day to check on Graham he was still talking about what Dan Wardell had told him that morning. I was so grateful for that.

There are no pictures of Grace in the hospital or even remotely medical on the Christmas card. As we look back over the last year that’s not where we wanted to focus. We wanted to focus on the fun, the inspiration, on what makes our family run outside of medical stuff: dance, bucket lists, summer camp, Halloween and fall traditions, grinning because you have your first bike, and carrying out the end of show advice of Dan Wardell that Graham repeats. “Get outside and play, read a good book, use your imagination, and eat healthy foods.” (Graham refuses to believe that Dan Wardell includes vegetables in the healthy foods category. We will keep working on that.)

Merry Christmas and Happy New Year from us!

Kevin, Joy, Grace and Graham

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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.

Joy

 

 

 

IMG_8871Yesterday Kevin’s mom sent us an email about Christmas. Christmas seems so far away and I had a hard time wrapping my brain around it. That’s when I realized I have descended back into surgery mode. Surgery mode is about making it through the next few weeks.   Nothing beyond those weeks factors in. I’m planning for those weeks, preparing however I can. Surgery mode is complicated by the outside world which has given us a new nurse and a new speech therapist. ( I can’t even think about not having our old speech therapist- too many feelings). Emails from school are starting to come in – transportation, school supplies. I have more responsibility at work. And although not part of the outside world we have two kids. Graham is four, he fights bedtimes and asks questions about why dirt is black, why someone would want to hurt a policeman, and why we go to heaven twice.

I’m mourning the loss of Grace’s stomach – soon it will look different some kind of medical thing will be there. I worry about how it will look in a leotard for dance. I worry about the surgery. Will it go well? Will it not? Will there be leaking when it’s all done? Will the surgeon be having a good day or a bad day? (She’s just a human.) I worry about Grace. How will she handle it all? How will we know what she needs? I worry about Graham. How will this affect him? How do we make sure he knows we love him when his sister is taking us away from him? I worry about Kevin and I. Will we be able to juggle everything that needs to be juggled?

I’ve enjoyed our reclaimed summer. We did family vacation bible school. We had dinner with friends. We went to fireworks over the fourth. Graham is still talking about a firework that went a bit crooked and landed in a tree not far from where we were. We’ve swung outside. We all went to Farmer’s Day and rode the ferris wheel. Grace and Graham both took summer dance classes. We checked a few things like sparklers, Trainland USA, and frozen lemonade off our summer list. We did it all able to keep surgery mode at bay, I’d thought. I know now I was fooling myself a bit. In all that time we were regularly taking samples to the lab. They all came back fine. We were making new plans to be gone 3-10 days. We were also hedging our bets that it could actually happen this time.

A week from today she will have the surgery. Our last lab checked out fine. History and physical tomorrow and then technically nothing can stop us. One day at a time will get us through.   There will be moments of panic- plenty of planning- hopefully some good rest – worry- but we will make it. The world doesn’t stop – but we can carefully determine how we keep up and what we may need to let go for just a bit.

Joy

IMG_1626Yesterday was supposed to be a very central day between the past and the future in our day-to-day lives.

Grace’s Mitrofanoff surgery was the end goal, the prize if you will at the end of two years of working to prevent all to frequent urinary tract infections (UTI). In order to proceed with the surgery we had to prove that cathing would solve the problems. We have found that with regular cathing four times a day (now moving to five times daily) along with a nightly rinse of the bladder and an instillation of an antibiotic would prevent the UTIs. This was further mediated as we have been able to manage her bowel movements through another process that helps reduce the pressure on her bladder.

We did everything we needed to do and it has come with limits on our daily life. With Graham if he has to go the bathroom while out and about you quickly find the nearest and hopefully moderately clean bathroom. With Grace we need a place to lay her down, a private place that is clean and would not present other infection complications. We time activities around her schedule and we have figured out how to squeeze every possible minute to the max to take care of her needs but also provide Grace with a life that does not require her being a prisoner in her own home.

We had dreams of what life would be post-surgery, the hope of freedom and exploring the world, possibly traveling a distance further than the time in between two cathings. While only delayed a month it is a draining hit from what we were prepared for.

Yesterday I went back to work traveling to Cedar Rapids for a meeting that I was originally going to miss. Joy stayed home with Grace and was confronted with the reality of Grace’s day to day cares. I pondered them while she dealt with them.

As I drove I reflected that if the day had gone to plan I would be once again driving on I-35 a drive to “the Cities” a drive I have made countless times. While in college I went to “the Cities” frequently to visit friends, travel to fraternity events, or catch an occasional GB Leighton show. A roommate in college who shall remain nameless (Ben) essentially told me that normal people refer to Minneapolis and St. Paul as the Twin Cities, but not I…to me they are “the Cities.” Little did I know that all of my travels to the Cities and eventual one year stint as a Minnesotan would come in handy navigating to all the places we take Grace to for her medical needs.

I never intended living in the Des Moines area; it wasn’t what I was looking for and I longed for life in a slightly more exciting place, a place with ready access to more, or just the ability to have adventure. It’s the wanderlust in me needing to be exercised. After waiting ten years we were on the cusp of having some freedom and it slipped away albeit for just an additional month. Don’t get me wrong being in Des Moines has presented us with some unique opportunities for Grace and we know that finding a better place to live would be an incredibly difficult task if not impossible.

Recently I was able to exercise my wanderlust on an overnight trip to St. Louis to see Bruce Springsteen & the E-Street Band. I had full intentions of maximizing those two days away but they were cut short in part due to Grace receiving an adapted bike from the Variety Club who asked for us to be on air during their telethon and on the other side an IEP meeting. Both were good things but they came with some sacrifice of which I was happy to comply.

I arrived in St. Louis, parked the car and made a beeline to the general admission lottery area to attempt to gain entry to the pit. There were only 10 minutes left, I got my ticket and waited in line and just a few minutes later my section won and were the first to enter the arena floor. Having driven for six hours I then stood for six hours and was imparted into a 35th anniversary of a cover to cover rendition of “The River”.

The music spoke just as much today as it did when originally written, two times Bruce reflected on the album that I thought of during my time on the road yesterday. “…when you’re young and you’re first startled by your parents humanity and shocked to realize that they have their own desires and their own dreams and their own hopes that may or may not have panned out the way they thought they might. And all you can see when you are young are all the adult compromises that they had to make. And you’re still too young to see the blessings that come with compromise. So all you can see is a world closing in, closing in and all you can think about is getting out and getting away…” This is true even in the present day where I find myself struggling with the blessings of compromise.

He concluded the set with “The River was about time, time slipping away and how once you enter the adult life and you choose your partner and your choose your work, the clock starts ticking. And you walk alongside not just the people you have chosen to live your life with but you walk alongside your own mortality. You’ve got a limited amount of time…do your work to raise your family and try and do something good.”

We learned today that the second urine culture that was collected prior to starting antibiotics came up negative after 48 hours and that the lab was concluding the test after just 48 hours. The test that showed the bacteria was cultured for six days. Talking with a former lab manager I’ve learned that a urine culture would be completed in 48 hours and would not be cultured for six days. So it appears a false positive may be responsible for the delays.

In the meantime my hope is that within our compromise that we are doing something good. Many times it feels like the tank is empty and there should be energy for more, but in reality emptying the tank may have been the something good.

Kevin

 

grace and grahamGrace and Graham continue to grow in their relationship. I haven’t written about it for awhile- and it’s important. Here’s my current take on it.

Let’s start with the rough part. I’ve been getting frustrated because Graham has been making a big deal about Grace’s drool. He doesn’t want it anywhere near him. It’s frustrating because I struggle with knowing the best way to help him with it. Part of me gets this – we don’t call it “goo” without a good reason. The other part of me long ago accepted that there will be goo in our life. We give her medication to lessen it actually but for it to go away probably isn’t an achievable goal. He doesn’t have that perspective of course- he’s four.

The goo is a real challenge. When I’m with her and other kids I’m constantly making sure that she doesn’t goo them. I was reminded not too long ago about a time when I failed to get the job done. Grace and her princess friend from kindergarten were in the back seat of our van. We’d taken them to Wesley Woods to ride horses together. It was really wonderful. Grace’s princess friend had a jacket on. Grace had been chewing on her hand and reached out to touch her friend. When I said “Oh I’m sorry she got you wet” the little girl looked at me and said so matter-of-factly “That’s ok, it will wash.” That little girl had touched my heart several times that year – and this moment just got added to the list.   She did move a little to get out of Grace’s range but not so much that she was totally detached from her.

Graham says “she’s touching me”, “why won’t Grace leave me alone”, or picks something up and says “eww, Grace had this, dry it off .”

The first two feel like normal sibling statements – the last one, that’s about Grace.

One day this spring he wanted a megaphone to take to baseball. Kevin fashioned him one out of paper. I was Grace’s buddy that day at baseball. As we came up to hit the little boy’s voice that I love came yelling through that paper megaphone. “You can do it Gracie” and I missed the rest of the encouragement because what I really wanted to do was sit down and cry but what I had to do was hit the ball and get Grace around the bases.

When we bring Grace with us to pick him up from daycare we are typically surrounded by kids. Often with questions like “Why can’t she talk?” “Is she a baby?” and I see him take all our answers in. I hear him repeat them to others.

At our last visit with Grace’s immunologist he asked us about Graham. He reminded us that Graham too needs our attention, and that the older Graham gets the more he will understand about how our family is different. I teared up as we talked about it. I read a book about siblings of kids with special needs while I was pregnant with Graham. The take away I got was that we were putting Graham in a pretty tough position. He’s the youngest, he’ll have no siblings to commiserate with, and we’ll make only child and first child mistakes with him – without him having the benefit of being only or first. It made me worry. I think of it often. I want him to love our family when he looks back. We are taking it day by day. I can’t get too far ahead of where we are.

As for where we are he pushes her in her wheelchair. He asks to go on a bike ride with her. He wants to go swinging outside with her. He introduces her to others – sometimes yelling out his own and her introduction at people as they are walking by our house.

He’s quick at a restaurant to move a chair away from a table so there will be a place for her wheelchair. He offers to share his Cheetos with her. He doesn’t share them with his dad or me.

He’s quick to accept a piece of candy offered to her on her behalf. 🙂

He’s getting strong enough to open doors so that we can push her through them.

When we were at a family camp last week he quickly adopted Grace’s buddy as his own and when the three of them were together he would often attend to Grace bringing her toys that she likes so she could play too.

And if imitation is really the sincerest form of flattery – his participation in a dance recital this weekend – because he wanted to dance like his sister – speaks volumes.

Joy