Thankful Thursday

Today I’m thankful it’s just a sprain. Yes, Aidan fell out of his bed and, of course, it could have been so much worse.

I’m also frustrated that after weeks of recovering from major orthopedic surgery Aidan is off of his feet again. We had just been adding all sorts of regular walking to his routine.

But I’m thankful it will be for a short while.

And I’m thankful that Aidan is motivated to walk.

I’m frustrated that his seizures, which I’m never ever ever grateful for, are causing him some sort of pain related to falling out of bed. They must be hurting some sore part of his body. I’m still playing detective on that one.

And I’m grateful that his school team has been working with me on this injury. Here’s Aidan putting his feet up at school. Someone pass that boy a remote control.

And here he is with his kinesio tape to bring the swelling down. I think he may be able to shoot webs from his ankle now.

So here I am again as with most Aidan related medical issues, kind of frustrated and also grateful.

Dear Insurance

So Aidan fell out of bed this weekend. We knew it would happen eventually because the rails on his bed are not appropriate for him. Actually, they’re a joke. I took Aidan to the Emergency Department mostly because I wanted documentation for the insurance company. He had a bloody mouth. He was miserable and in continual pain for the day.

This morning when he woke up, Aidan made it pretty clear that his foot was in a lot of pain so I took him back to the Emergency Department. More documentation. He’s going to be fine, though I suspect he won’t be walking well for a few days. We’ve requested a Sleep Safe bed.

Insurance has denied us once and is now considering our appeal. I’m sending them the following letter with our ED discharge papers. This bed, though very expensive, is cheaper than a head injury or continual trips to the ED. I don’t need them to care, but I’m sure they want to make a sound financial decision. This bed is it.

I don’t love writing negative truths about Aidan and I certainly have better things to do with my time then visit the ED and I really really don’t like waking in the middle of the night to reposition Aidan or knowing that we rigged up a piece of plywood to keep him safe for the time, but it’s all part of this parenting journey.

I sent in an appeal regarding a Sleep Safe bed for my son Aidan and I have new information. This bed is medically necessary because Aidan is at risk for falling out of bed. He lacks the motor control and muscle strength to maneuver safely away from the edge; he also lacks the cognitive comprehension to understand that being close to the edge of the bed is not safe; he also has seizures that result in strong uncontrolled movements involving his entire body which could easily propel him out of bed. 

Currently Aidan is sleeping in a hospital bed that is being covered as a rental by this insurance.  On the morning of June 9, 2013 Aidan fell out of bed. I took him to the Emergency Department. He had several cuts in his mouth. Aidan was discharged and spent the rest of the day at home. Because of the cuts in his mouth, he did not consume his regular caloric intake, which he cannot afford because he’s underweight. Aidan did not display his usual mild-mannered behaviors, and instead was indicating that he was in pain. Because he is non-verbal, it’s very difficult to determine exactly what’s wrong. He usually walks with assistance but that evening he cried when bearing weight. Aidan also woke up crying in the middle of the night after having a seizure, which is an unusual response for him

On the morning of June 10, 2013, Aidan was still distressed so I took him back to the Emergency Department. They took x-rays of his right foot. While they did not indicate any fractures or breaks, it seems that he probably sprained his ankle. It will take more time than expected to heal as Aidan’s seizures will continue to strain his injury.

This one fall out of bed resulted in minor injuries to Aidan but cost us two trips to the Emergency Department. Every night he sleeps in this bed, he is at risk for greater injury, including a head injury. Aidan is in danger while his injuries and this hospital bed are costing insurance money. The Sleep Safe bed has sides that, unlike hospital beds, are solid and will not only keep him in bed but will also not be an entrapment hazard for his skinny little body parts. Please take this information into consideration and understand that covering the Sleep Safe bed is the safest and most cost effective decision.

And just so you can see how cute he still is when he’s in pain…..

Thankful Thursday – City Driver

I drove to Boston this week for a follow up appointment for Aidan.  I don’t drive in the city.

Ever.

Boston traffic is re-routed from the Ted Williams tunnel during rush hour in Boston, July 11, 2006. (Photo credit: Wikipedia)

Aidan was in Boston for a month when he was born and I never ever drove to see him. I know, I know, I’m a sucky mother. I only went with Garreth on the weekends.

Most of our doctors are in Maine and I made that decision when Aidan was born specifically because I knew I could drive there alone. And yes, with many second opinions we’re confident that he’s received excellent care in Maine.

For all of our recent Boston appointments someone else has driven, but it’s high time for me to get behind the wheel.

Garreth started talking me through directions the night before and I had to tell him to stop. My heart was racing and I felt nauseous. Really. I had to give myself permission to get lost and end up in Cape Cod. I’m nice like that.

[On a side note - I have it on good authority that if you have a fear of flying and you let the flight attendant know, you may get a complimentary glass of wine, you know, to wash down the little pink pills. You're welcome.]

Fortunately my friend Sue decided to play hooky and be my navigator and cheerleader. (If her boss is reading this she had the flu. Really.)

So we chit chatted most of the way down and I was fine. I feel like I did a great job staying calm and talking myself through it until I ended up in the wrong lane.

Cape Cod sounded good to me.

Sue told me to get over into the right lane.

“What about those cars?”

“They’ll either let you in or get hit.”

“THAT’S THE PLAN?? OMG WE’RE ALL GONNA DIE!!!”

They let me in.

On the way home I had to turn left.

Sue said, “As soon as the light turns green, gun it.”

“Gun it?? I’m driving a mini-van!”

I did NOT gun it. I sat in the middle of the intersection for approximately four years until some kind Bostonian took pity on me and my Maine plates and waved me through.

And don’t even get me started on that weird intersection near Fenway. We were approaching and Sue noticed my green arrow was about to go away.

“Who has the right of way and which cars are coming at me and why isn’t straight really straight?”

I have no idea how we made it out alive.

But we did. And I’m thankful. And I really really don’t want to do it again.

*****

P.S. Aidan’s appointment went great. He’s healing well and we bought more time until his back surgery.

P.P.S I’m also really thankful for the man who gave up his handicap parking spot for me today once he saw that I had to abandon Aidan at the door to go get my van. I’m more used to parking hassles than parking gifts.

Thankful Thursday – Refocus

Aidan has been falling into bed exhausted at night. Recovery, learning to walk again, is hard work. He fusses and complains, until at last I mercifully snug him into his bed.

 

Garreth hasn’t played guitar in years, but he picked it up again this week. He’s been playing guitar to Aidan and singing about bedtime and school days and stinky toes. Aidan is completely mesmerized by Daddy’s music. He will either hold down a fret or tap on the guitar to become part of the music.

Liam and Aidan and I sat in our close to complete living room this week while Daddy made dinner. We threw a ball around because we are an “it’s ok to throw balls in the house” kind of family. We played closest to the ceiling in which you win if you can, you know, throw the ball closest to the ceiling without actually hitting it. Somehow for years this has kept the boys entertained at length.

These simple moments, the ones that lack stress or drama or urgency or conflict, are worth noting. They are in fact, why I started thankful thursdays. Somehow along the way I got distracted and exhausted and stopped noticing these simple moments.

So help me refocus. What simple moments have you enjoyed?

 

A Guest Post on Parenting and Imperfection

I had my perfect baby first. Liam popped out of me in under 2 1/2 hours, nursed like a champ, and slept through the night at six weeks. As a toddler, Liam rarely pitched a fit, he listened to my directions, and even gave himself time outs when needed. He’s grown into a teenager who helps around the house without complaining, stills enjoys my company, and uses kind words with others…..

Read the rest over at Five Kids is a lot of Kids….

Please take some time to explore Beth’s blog as she writes funny stuff, really funny stuff. She also has a gift for encouraging parents and contemplating the deeper things in life. Beth has been a great encouragement to me as a writer and I’m thankful to be sharing her space today.

Beth is writing a book which is sure to be a best seller and publishers love statistics. If you would help me give back some of the blog love she’s given me I’d appreciate it and her publishers will dig it too. Go to her blog and like it, share it, comment on it (you can say hi to me over there today).

If you’re new here, welcome.

You can read about our life without a diagnosis and how it effects my marriage and enjoy this little bit of sass.

I’d be honored if you took the time to read my three favorite posts:

Bleeding Words

The Weight of Love

When Gratitude is Hard

I hope you’ll consider joining me on this journey.

Heather

Sad

“What does Aidan understand?”

It’s the $64,000 question; one I ask myself every day.

Because Aidan doesn’t have expressive language skills, or, he can’t tell us what he understands and doesn’t understand, I’ve become a detectives of sorts. I watch Aidan’s facial expressions, follow his eyes, try to decipher his actions, look for patterns of behavior.

There’s always a chance I could be wrong, that I’m assigning meaning to something that’s not there. Did he really mean to throw that food on the floor because he doesn’t like it?

His wheelchair has actually become a powerful communication tool for Aidan. He knows where he wants to go and is able to follow directions.

Aidan’s class was told to line up for gym. Aidan, in his power chair, was the line leader.

“Ok, Aidan. Let’s go to the gym.”

There was a brief kurfuffle of kid chaos that needed to be attended to. After sorting things out, the teachers (yes, there were several) looked at each other and asked, “Um, where’s Aidan.”

In the gym, of course, having driven there all by himself because he was clearly following directions. I love this story, even if it did induced a moment of teacher panic. My boy is smart indeed.

Fast forward several weeks. One of Aidan’s former teachers has died.

“What does he understand?” I ask myself, wishing for a brief moment that I wouldn’t have to tell him.

Aidan would recognize her name. I know that. My strong belief that Aidan is smart, that he is comprehending the world around him, has led me to this moment where I have to share this hard truth.

I put my face right up against his, feeling that this moment demands touch and closeness. I recall his teacher to him and tell him that she has died and that many people are very sad. Aidan grabs my hair and giggles. Even as I know that’s just his reaction to my face being in his, I’m so frustrated, needing to know he grasps the bigness of this moment. I back away and tell him again. I know I’m supposed to ask how he feels, if he has any questions, but how can I possibly do that? I tell Aidan that God always hears him and loves him so much and will answer any of his questions. It’s meant as a comfort but feels like a cop out.

I suppose there are many ways of knowing. Sad is more than a word, more than a symbol on a page; sad is in your heart whether you can name it or not.

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