Archives for posts with tag: medical supplies

When we were younger

15 years ago this month Kevin and I went on our first date at Living History Farms.

14 years ago tomorrow we were married there.

We were so young but felt a little old at the time to just be getting married…sigh.

I see our wedding picture every day and I almost don’t recognize us.

I don’t feel like we’ve looked like that since Grace was diagnosed. What I see now in our pictures are two people who look a little bit tired. Two people working so hard to keep everything afloat and smiling (but not as big) while doing it.

Never in our dating did I consider if Kevin would be a good medical supply orderer. If he’d be able to princess carry our daughter long after I couldn’t. If he’d be ok cleaning up poop.   How he’d respond when a doctor said: “Frankly, I’m at a loss…”.   If he’d have a hidden knack for adjusting a wheelchair or whipping up a changing table using IKEA bookshelves.

We had no way of knowing all of that and more was in our future.

We joke with people sometimes that we have five or six “date afternoons” a year. We’ve been getting season tickets to the Civic Center for the last several years. Somehow we’ve managed to never miss a show. We’ve been able to do that through a combination of help from family and respite providers who we are very grateful for.   When we were first married I admit I imagined there would be more date nights. But the reality of finding someone to care for Grace is that it’s hard. I sometimes get jealous of date nights and parent trips that others seem to take with such ease. I know social media is all perception but it just seems so far from our reality.

I struggle sometimes to understand the effect of Grace’s needs on our marriage. She arrived a year and a half into it and by our second year of marriage, we were playing by completely different rules. Graham changed the rules again when he arrived. I don’t mean to oversimplify but one of the big differences I see in parenting the two are the logistics Grace brings with her that Graham doesn’t.  There are so many people to schedule appointments with, people to communicate with, meetings to go to, labs to get, paperwork to fill out, things to have in a bag before we leave the house. If we forget anything for Graham we can pick it up at any Target or gas station. If we forget certain things for Grace she doesn’t eat and has to wait until we get home. Grace has forced Kevin and I to combine our brainpower and up our organization. Sometimes we have it all. Sometimes we forget things.

The other thing she’s forced is conversations I’m hoping most married couples don’t have. Brain surgery?…Yes or no? Try the experimental drug? Get the medicine from Amsterdam? Are our expectations for inclusion fair? Can we afford the wheelchair van? What will happen to her when she’s done with high school, how will she spend her day? How will she not get isolated?

I’ve been thinking about all this because we had a nurse today in our home who wasn’t with us all summer. She asked if we took any vacation this summer. I told her we did. We did Mt. Rushmore, the Badlands, Devil’s Tower. I went on to explain that the wheelchair van had made it possible. That Graham being older helps a ton. That Kevin’s research on van toppers and ability to pack in tight spaces was key. That it went well enough we are planning another summer vacation.

“Good for you,” she said.   “It was good” I replied.

This thing that the younger Kevin and I started is going ok. We are doing good things. Maybe not the things we imagined but things that are important.

I’m glad they didn’t know… the younger Kevin and I. We’ve probably done best learning together as we go.

Joy

 

 

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“I didn’t know Grace had a brother” I heard a teacher say as the four of us walked past inDSC00327 the hallway at school. Today was Meet the Teacher day. In my opinion, it’s madness – in an hour and a half, every kid in the building is technically supposed to find their room, meet their teacher, put away their supplies, and then be ready. You have exactly 2 minutes with each teacher to ask questions while they are trying to take care of everyone else there and for me, the whole thing just lacks personality. Graham was anxious, not sure of what was going on. Grace kept yawning. Kevin and I ran around trying to unload the four bags of supplies necessary in the places where we thought they should be.

Anyhow – that’s a blog for another day!

So, back to the teacher’s comment about Graham… it was really the tone of which it was said that caught me. I heard it as “Wow, Grace has a brother.” It’s not the first time I’ve heard the tone. It happens more than you might think. My impression is that a lot of people think maybe we are a bit crazy to have had a second child when Grace is so Grace.

I choose to think of it this way. Graham wasn’t an accident we had him on purpose. We waited to have him until we felt like Grace was stable so that we’d be able to be there for him like we wanted to.   We had him because our family didn’t feel complete – we’d always talked about having two kids.   Some days I think of Graham as a visible sign of our faith and optimism.

That’s not to say we weren’t scared when we had him.  But we wanted him. We took a risk on him.

He’s stretched our parenting in different ways. He teaches us things that are quite frankly amazing and humbling.

I’m looking forward to finding out what school is like on the normal side of parenting. Even though Grace has been there I just have to imagine it will be different.

So this year, this one year Grace and Graham will be in the same school building. I’m anxious to see what this will be like for both of them. What will it mean for Grace to have a little brother in the building? And what will it mean for Graham to be Grace’s little brother?

We shall see!

Joy

 

IMG_6048Graham fell on Saturday on a metal slide that he loves.  When he got back up there was a pretty good gash on his chin.  Enough that we knew he needed stitches. Graham did not want to go to the doctor.  I almost laughed out loud when Kevin tried to comfort him by telling Graham that “Mommy and I are really good at emergency rooms.”

When we arrived and saw the triage nurse I was amazed how fast it went.   After birthdate, address, etc. it went like this:

Nurse: What happened?   Me: He fell on a slide. We think he might need stitches.

Nurse: Any medications?   Me: No

Nurse: Any allergies?   Me: No

Nurse: Is he generally healthy?   Me: Yes

And once they had his blood pressure, oxygen, etc. They took us back to a room.

The nurse chatted with Graham despite his reluctance to talk back. Graham whispered a few answers in my ear and then asked me for my phone so he could show the nurse a picture of the horse he rode earlier on the carousel.  From there he proceeded to other pictures – the donut he ate for breakfast, the ice cream he had after his dance recital…I was slightly embarrassed that there were no pictures of healthy food for Graham to show the nurse, but he doesn’t ask to take pictures of fruit!

Anyhow the nurse left and it was just the two of us.  Graham glued to my side – still not talking out loud.  He warmed up when I pointed out a picture in the room.  A hot air balloon made out of several different stickers.  We took turns picking out shapes and pointing them out to each other.  I was so grateful for that picture – I thought quickly about how I don’t really notice the artwork when I’m there with Grace.

The staff seemed charmed by Graham.  Everyone was very kind.  There was no rushing him.  The pace and atmosphere were wholly different from times in the ER with Grace.

In the end, we came home with bath toys.  A saline bottle they’d used to clean his chin before they put in the stitches.  A syringe that they’d used to give him medicine to make him relaxed before they put in the stitches.  No one’s ever offered Grace medical equipment for a bath toy.

We also came home with a boy with five stitches in his chin for the next five days.

I write about it here because the difference between answering all of those questions from the triage nurse with no instead of yes was really pointed out to me.  I don’t think of Grace as unhealthy.  I don’t think of Graham as healthy.  They are just my kids.  I hate for either of them to be in ER.  But I’m thankful it’s there for both of them.  I’m thankful that the ER is able to ramp up for Grace or look at pictures on a cell phone to calm an anxious Graham.

Joy

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