Archives for posts with tag: Family

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

 

 

 

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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

 

 

 

waiting for hayrackFall has been hectic – I’ve started several blog entries in the past few months. None of them have actually been developed fully. In an effort though to keep these pieces of our story in one place I’ve decided to upload some of what I’ve written this fall. It doesn’t flow from piece to piece – I’ve given you fair warning.

 

Dress up days

Today was mismatch day at school. It’s a really hard day for me, which I know sounds incredibly stupid, but there is very little that I can control about Grace. I try to always make sure that she looks put together, cared-for, loved. To purposely lay out a horrible outfit just kills me.

Yesterday was worse, the theme was to dress as what you want to be when you grow up. First off, I don’t even really like to think much about Grace grown up. When I do what I want for her is community, people who will appreciate her, love her. I want there to be music, dancing, painting, outside time, sensory activities, movement! Costuming that wish is difficult.

 

Smiling while being stared at

It’s been a little rough lately. It feels like everyone stares and not in a friendly way. At the pumpkin farm adults held their kids back from getting on the tractor ride before us, which is nice, but they seemed not happy about it. Graham not understanding that we were supposed to sit in the handicapped section of the wagon meant another family with a wiggly little one had to wait. A girl on the wagon who said she was 10, looked at Grace, looked at me, and said “special needs child?” “Yes” I responded, “Her name is Grace.” I wanted the label quickly replaced with a name.

The little boy in the row in front of us at church looked at Grace with what looked like fear. When Grace got too close (she wanted a bulletin) he backed away as far as he could in the confines of the rows.

“Stop looking at her like that!” I’ve wanted to yell. “Stop looking at us!

We are a family- we are doing this life too. I don’t stare at you, please stop staring at us!!

But instead I smile. If you are going to be stared at you might as well smile, and in as real a way as you can. If I can’t smile I put my head down.   It seems better to pretend you don’t see than to frown back.

 

Love means you wear drool on your shirt

I caught a glimpse of myself in the mirror – my ponytail was half pulled out, my shirt had a big drool strain, my eye make up was smudged, and I looked tired- a real mess. I’d walked around like this. Gone to get food downstairs before I’d hurried back to Grace. No one had even looked at me funny. Evidently a hospital is a safe place to walk around looking like a wreck. “Sheesh” I thought to myself – “I look the wreck people must imagine special needs parents are”. I try so hard to always seem like I’m pulled together. When I was a new special needs mom I look at those people and they gave me hope. But today, today I’d gotten Grace up, got her ready and the nurse and I had taken her to the hospital for an infusion. We’d waited almost 45 minutes to see a cancer doctor – because even though it’s not cancer we are dealing with we still have to follow protocol. A nurse tried and failed to insert an IV. We waited for the medication to come up. We got the IV in. We gave ibuprofen to make her comfortable. She had a shot of a different med in her leg. I made sure the infusion med was the right med and I had snuggled her in a chair, where she had drooled on my shoulder while she slept. I tried not to move so as not to disturb her. She slept through her blood pressure being taken – this was a huge thing because normally she hates it and the machine just squeezes her arm repeatedly. When she woke up and was settled with her nurse I went and got a sandwich. After I’d eaten I went to the bathroom to wash my hands and that is when I saw myself. I fixed my ponytail and make up as best I could after silently chewing myself out for looking that way. But then I told myself that I’d done what I needed to do to take care of Grace and that motherhood- any kind of motherhood- sometimes is so consuming that you don’t take time to see yourself. The drool I couldn’t do much about. I’d earned it I decided and I would not be ashamed. It meant my girl had been snuggled on me for an hour and a half. It meant I’d kept her comfortable. It is what it is and that day I was just wearing love on my shirt.

 

Epilepsy Awareness Month

Today I saw this on Facebook related to epilepsy awareness month – “You learn how long 30 seconds really is when you are watching your child have a seizure.”

It’s true. I hate having to watch Grace have a seizure. The sounds she makes. The way the seizures contort her body. I wish she wouldn’t hold her breath or put her hand in her mouth. I hate how quick they come on.

 

Dance

I was talking today with two people that I work with.   I don’t work with them everyday, they aren’t in the cube next to me, but they know me and always are checking in on our family. When I mentioned today that I was anxious about changes to Grace’s dance program they both jumped in without hesitation to talk about how the program could evolve and be funded. They’ve seen the pics of Grace. They know how much it means. I was so thankful today for their support, ideas, and quick passion that Grace and others have a place to dance.

Joy