Archives for the month of: November, 2016

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.

Joy

 

 

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img_0955I hesitate to even write this. I hesitate to even begin. I’m not one to post on politics. I choose more often to focus on the less controversial topics that we deal with as a special needs family. My hesitation is also based on me finding myself trying really hard not to judge based on political views. I don’t want to be judged for mine.

But the truth is I am struggling. In large part, we write this blog to serve as a record of our journey with Grace. I forget. I move from one thing to the next and details get foggy.   At this time, I can’t ignore the weight of the outcomes of state and national elections on Grace or our family. It’s worth including here as part of the story.

If I boil it down to what I think might be the root of the struggle it’s the possibility that the affordable care act could be repealed and more specifically that insurance companies could again elect not to cover someone with a pre-existing condition.

When Grace was born we made all the calls and filled out all the paperwork to get her covered by my health insurance company. When Grace was 15 days old we got life insurance for her. She was diagnosed at around 5 months of age.

The life insurance agent has told us in the past we were smart to get the insurance when we did if we had waited until after she was diagnosed her policy would have been denied.

When she was diagnosed there was no such thing as the Affordable Care Act. That’s when pre-existing conditions became part of our vocabulary. We looked at changing insurance at one point but because of her diagnosis, Grace wouldn’t have been covered. Do you remember those stories about families who went bankrupt and were homeless because they were caring for the medical needs of someone they loved? Those stories have haunted me. The very first medication we gave Grace cost thousands of dollars.  A month’s supply of the medication was more than I paid for a brand new car.

Grace is expensive.   There is no getting around it. She’s also evolving, growing up. Her needs will change. It’s not just epilepsy we are dealing with. Sure that might be the first thing we say but she has more than 10 doctors. She receives physical therapy, occupational therapy, and speech therapy privately. Yes, she can get those things at school, but in reality what we get are consults from those professionals, not the intense work we are able to get through private therapy services.

Insurance makes it possible for her to have those therapies. Those therapies have helped her walk, made her stronger, addressed sensory defensiveness, allowed her to find a means of communication.

Insurance also means we can take her out of state to doctors who can care for her. Often, even living in the Des Moines area, Grace’s needs require a level of specialty not available here.

Insurance pays for the supplies she needs. Boxes of supplies show up at our home on a regular basis.

There’s also a wheelchair, braces, her talker, etc.

Yes, there’s Medicaid, but it has its limits. It’s also under fire.

Neither pays for many things she needs.  Neither pays for some of her meds. Many of the special needs adaptations that she needs or that add to her quality of life are incredibly pricey. We pay for them. We also pay for the trips out of state, for gas, hotels, food. It quickly adds up.

So my fear is that we would somehow lose insurance for her and have no means to get it back.

I wake up from dreams about losing our home because we had to care for her.

I wake up wondering what opportunities we would have to withhold from Graham because we are taking care of Grace.

I wake up feeling trapped in my job with no way of leaving because I have to care for Grace.

I also wake up knowing that there is no choice in the matter – we have to care for Grace. She’s ours. She has needs that we have to meet. However, we can. I feel the weight of that deeper somehow. It is a legitimate weight.

I have campaigned for Grace’s rights rather privately thus far. Advocating for her primarily in our church and her school. Believe it or not, that’s a lot. Plus advocating is just part of the special needs parent role. It’s separate from the paperwork, the appointments, the meetings, the actual hands-on care. The first time I advocated for her formally I was at a meeting where a county group was discussing cutting funds to her special needs daycare. The two parents before me had these incredibly powerful presentations with visual aids. I hadn’t thought about that at all. All I had was my planner. It had a huge pocket in the front and in that pocket I had a picture of Grace. When it was my turn I sat at the table, showed them my picture, apologized that I didn’t have a more polished presentation, and then told them our story. I told them about how no other daycare would take Grace. I told them how helpless it made us feel.

I feel a little of that helplessness now. Time has made me more polished I like to think. I can better describe how Grace is a whole person, worthy of what it takes to make her the best she can be. She has potential. She has character.   She is not less. She is not a liability. She is a person more the same than different.

And in reality, any of us is seconds away from being in a situation where we could be very sick or very injured and need significant help.

So I’m afraid. But life continues. I’m working on my next blog post where Graham tap dances by a singing rock…

Joy