The Main Caregiver

My life has been inundated with caregiver issues. Here's what happened just in the past three weeks:

- I hired someone for part time. She quit a week later. 

- I had to hire someone because of the person that quit. She sprained her ankle the day after her first day working with me. She'll be gone for 4-6 weeks. My mother and I are looking for someone in the meantime. 

And the big whopper was when my main caregiver who is literally responsible for my day-to-day life had trained someone to do her job. Literally, this caregiver is so important to my well-being. This caregiver is my teammate regarding my preferences, what makes life easier, and being just savvy enough to help out with any of my technology or jimmy rig my wheelchair. Part time caregivers are essential too, but my main caregiver provides consistency which is critical to my life.

I had interviewed for nine weeks and was beyond relieved to find someone that fit the bill. During training, the woman I hired to do this job QUIT. We were four days in, and I was furious. This will somehow make it in my memoir so I will write the scene here and now.

With a sheepish looking face, "Jill" said, "I know I'm not cut out for this."

You have to be joking. Autumn, my main caregiver, and I have literally thought about you nonstop. Not for us but for you. My life has revolved around you for a week, and this is how you repay me?

With a calm that I can only say came from the Holy Spirit, I said, "Jill, we are going to sit on the couch and call my mother."

She had to know. 

 "Autumn, Jill and I are here. Jill does not think she can continue," I said to Mom on speaker. 

“Jill, have you made up your mind because if you have, we should all move on," Mom said.

"Yeah, I'm sure. I'm not cut out for this."

 We ended the call. 

 I was walking her out when she said, "This sucks for me."

I looked back at her with venom in my eyes. That look summed up what I was feeling. 

 

Readers, I don't know how to feel. I understand that I dodged a bullet. She wants an easy job, and this is a job that is layered. On the one hand, we hang out. On the other hand, this person has a lot of responsibilities. This person is so critical to my life. I've noticed a difference regarding employees post Covid. There is a lot less effort put forth by people. It's scary. Obviously,  if you know someone, please let me know.

I'm thankful for all my caregivers right now. Thank you for working so hard! This gratitude extends to my mother in countless ways. To all who support me, I appreciate you!  

On a pink, positive note, thank you for all the birthday love! I got 30 cards and countless text messages. You're amazing! I am so grateful.

I'll keep you updated, 

Hannah! 

It Can Never be Normal

             The dreaded pink line was there. I had Covid. It was there. It sat there on my kitchen table mocking my plans for the next five days.

            “I think we should go to urgent care because I barely have symptoms, Olivia,” I said to my caregiver.

            “You can’t have Covid. You don’t look sick. You’re not coughing. I think it’s allergies,” Olivia responded.

            I hopped on the Solv app. It had been my best friend during 2020 when many caregivers tested positive on a frequent basis. I found DuPage Immediate Care which I highly recommend. When we arrived, I checked myself in and left Olivia inside to keep her safe. It had been some time since I had donned a KN95 mask. I’m going to miss lunch with my brother and totally miss Mother’s Day. Shoot. Olivia found me and told me that it was time.

            “Hi, I’m Dr. Mike. I heard you received a positive Covid test at home.”

            “Correct. But I barely have symptoms,” I said.

            “Let me have a listen to your lungs.”

            “Mmm…you have a lot of phlegm. I doubt it’s Covid though. Regardless, I’m going to put you on some strong medicine to help with that cough.”

            He proceeded to sit down and ask my name. When I told him, he got emotional. I looked at Olivia as if to say, “it never can be normal,” Dr. Mike walked out.

            “What was that about?” Olivia asked rhetorically.

            His nurse came in and administered a Covid test. That never gets more pleasant. Olivia and I sat there waiting for my prescriptions when the doctor came back in.

            “Sorry about getting emotional earlier. I lost a little girl named Hannah almost 12 years to the day.”

            “I am so sorry,” I said feeling empathy for the grandfatherly man. He looked at me for a few seconds and then left for the next patient.

            The test confirmed I had Covid. No dinner with my brother, I could kiss a fun weekend goodbye, and Mother’s Day at the very least would be watered down if not completely canceled. We didn’t know how I was exposed. My parents were up to bat. I think I said, “I am so sorry,” to my parents and Olivia about a thousand times.

            “Nothing you can do about it although you do have a knack for getting it when no one else gets it,” Dad said.

            “Cruel little joke that the universe plays on us.”

            “Yep.” Dad said.

            The next morning, I expected to feel worse, but I still was pretty much symptom free. A little sore throat, a little cough but nothing big. Some colds had been worse than this. My parents were in Uline N95 Standard Industrial Respirator. We took it very seriously. One of my parents would come in, get me dressed, feed me, then leave my bedroom. I didn’t have a ton of energy to write. I was

disappointed. All these appointments canceled, my life on hold, and I couldn’t even be productive. I’m not being hard on myself, I was happy to let my body rest and heal, but I wanted to write and mentally get away from the same four walls. I eventually did do some editing…one of the days…they all blurred together. We all know that feeling. My parents were spectacular. They really did all they could for me including picking up Starbucks (they really know their girl). It was funny because I would call the landline if I needed something, not like I could open my bedroom door and go out.

            “When you call, I feel like I am in a horror movie. It’s creepy,” Mom said.

            When I was back in Elmhurst, my wrist started hurting. The pain was cruel and unusual. Sharp pain accompanied every movement and not moving it did not provide any respite. My right hand is how I communicate and access the computer. I was in denial and continued to try to text and email. As a handful of you know, I finally had to turn on auto reply.

            First, I went to urgent care. It was the same doctor which I was grateful for. I was in excruciating pain and had lost the ability to function without the pain ripping through it. I hadn’t hit it, hadn’t fallen, none of the above. The doctor was so sweet and helped me take an x-ray.

            “Hannah, I need you to hold my hand so I can get a good image. Hold on as much as you can,” the sweet old man said.

            This poor guy doesn’t know what’s coming. I clenched my hand in his. I proceeded to pull his whole hand a good eight inches across the table. I looked at him as if the say, “Yeah, that’s dystonia for you.”

            Nothing was found in the x-ray. He prescribed me pain medicine and an anti-inflammatory. The pain medicine made me feel nauseous and dizzy. The swelling was worse the next day. I called my primary care physician. They make it nearly impossible to get in, but I managed to get in that day. My doctor didn’t know what it was, so she ordered blood tests and an ultrasound. We ran into the kindest woman in the ultrasound lab who took me back right away instead of making me wait three hours.

            After all that, they found NOTHING! It is good news but frustrating because we have no idea what it is. Currently, my wrist hurts on and off. I am going to Shirley RyanAbility Lab the week after this post goes up. I’m anxious to know what this strange thing is that is impacting my life. It’s the hand that I do everything with so there is an element of fear here. I’m hoping for answers.

            It is my birthday month so it’s a good month regardless of what happens! Please share this with anyone who has similar symptoms. You don’t have to ask, just go ahead.

Happy June,

Hannah!

Ready for May Flowers

Before I graduated college, I had the opportunity to speak to medical students at Northwestern University. That was really my first professional speech, and I loved every minute of it. Ever since then, they invited me back every year with the exception of Covid (it really did stop everything) so my relationship with them has grown and grown. I have the privilege of speaking to future doctors about patients with special needs. It’s always a sign of spring because it’s always in March or April.

Other than that, it’s been a stressful month. I have caregivers coming and going. Some caregivers are graduating and moving on and finding caregivers to fill their shifts is like a Rubik’s Cube but harder. It’s all consuming and I know their first few days are always rough. It doesn’t matter how good they are or how patient I am with them, it’s hard.

All around, I’m good. I don’t have any more speeches so please spread the word that I am available. I’m ready for a May flowers, how about you? 

Love,  

Hannah! 

Just Another Crazy Day

“Bye, Hannah, see you next time,” my therapist called out as I left physical therapy.

I parked my wheelchair a few feet away from the door to check my phone. I wasn’t expecting any messages. Alarmingly enough, I had four text messages from my caregiver, Autumn, saying that the muffler needed repair. Apparently, she had called mom explaining that she was going to another town to drop off my orthotics while I was in therapy and heard explosive noises. My dad met her in the parking lot and determined it was a problem with the muffler. This is all while I am in therapy where she knows I don’t check my phone.

I get out of the green elevator into a sterile lobby. I’m in the lobby of a medical building with grey carpet and a surprising number of dental offices as well as a number of law offices.

Me: Are you okay?

Autumn: Yes, your parents were of ton of help. Can you Google mechanic shops around town?

I agreed.

Remember, I can’t call them because they would not understand my communication device over the phone. I’m not working with much, but I do find a nearby Midas. I happen to glance over to my left and there is a 90 year old woman on a gurney not doing too hot. Are you serious? Why is that woman in the lobby? This is a normal office building. What is going on?

When Autumn gets to me, she says, “Oh thank God the ambulance is not for you. With the day going the way it is, I would not have been surprised. And the blog is writing itself, isn’t it?”

“My thought exactly. By the way, there’s a woman in the lobby on a gurney, I don’t know why but it just fits the day. That is who the ambulance is for.”

“That’s the cherry on top,” Autumn said with a stunned look on her face.

We drove 10 minutes to the Midas. They were really nice guys, but they did not have the parts. Another location did have the parts which really was a blessing although that place was full of jerks. I went to see if Lyft or Uber had options for accessible vans. They did not which is more frustrating than I can express. Lyft and Uber… do better! Autumn had to pick up her little boy from school. It closed in an hour.

Her aunt who lives close by thankfully was home and could pick him up. I had a red velvet loaf and a caramel macchiato from the Starbucks in the Target for lunch. What a healthy day!

Her little boy came very confused why he was dropped off at Target.

“Mommy, why are we at Target?” The little guy asked.

“We had a long day because Hannah’s van broke down. Hannah bought you a treat. She got you a loaf from Starbucks.”

“Thanks.”

“Least I could do.”

The truth was I felt like crap about what happened. I respect the fact that my caregivers leave at a certain time. This had been utterly out of my control, but I still felt bad.

We finally got home!

“Go home,” I said to Autumn with enthusiasm.

“OK. Are you sure you don’t need to use the restroom?”

“Nope. See you in the morning,” I replied.

I was so tired from problem solving all day. I called Mom. We both knew this was going to be the blog post for the month.

 

This post is dedicated to Judy Heumann. She was a fierce disability rights advocate and one of my personal heroes.  

Three Speeches, One Great Day

             “Hey, H.T.,” Kevin said as he greeted me in the parking lot.

            Kevin, my mentor and friend, had asked me to speak at the elementary school he worked at. After the elementary school, we would speak to the middle school students, and then I would speak to future clergy who wanted to work with people who have special needs. I was as excited as a kid on Christmas morning. I live for days like these. I get to fulfill God’s purpose for my life.

            “So, first we have the kindergartners. We’ll spend about 20 minutes with them,” Kevin said.

            I was excited for their earnest questions and comments. I never leave a kindergarten class not been thoroughly entertained. This class did not disappoint.

            I ended the speech by saying, “If you see someone who is different, go up and talk to them. We like making new friends. I am so glad to be your friend now, and I would really love to answer any questions you have.”

            The questions began.

            “Do you have pets?” One little guy asked.

            “No.”

            “How fast does your wheelchair go?” Another child asked.

            “Seven miles per hour,” I responded.

            “Do you sleep in your wheelchair?” One kid asked. I get that question every time with kindergarteners.

            When the teacher made eye contact with Kevin and asked in a hushed tone when I was diagnosed with my disability, I interjected. I was more than capable of answering that question for myself. I typed out “lost oxygen at birth.” The teacher nodded and asked me not Kevin if we could talk about it. We certainly could!

            “So, when I was coming out of my mommy’s tummy, I didn’t have enough oxygen and my brain has an owie on it,” I stated.

            “Just take deep breaths,” one child suggested.

            I let out a laugh. Oh, how I love kids! And it’s a little too late for that!

            My presentation for the middle school students was on bullying. I talked about how I was ignored by most of the kids in middle school and high school. It hurts to this day. I definitely have a lot of scars on my heart from kids viewing me as invisible. Funny how I’m a 32 year old woman who is living her best life and it still hurts.

            Then, I had a presentation with future clergy. I told them about different experiences with clergy. Some priests get it right off the bat, some priests take a few months until they really understand that I don’t have a cognitive disability, and some priests never understand. Clergy are merely humans; they are not perfect. Last month, I talked about physical access to a specific church. I relayed that humiliating story to the students too because they need to know how critical accessibility is.

            All in all, I had a great day. I live for these days. Nothing fulfills my heart quite like speaking.

Carried Into a Church

            Wearing a dress that epitomized a little black dress, I looked at the church. It was completely inaccessible.

Julia, my caregiver said, “Hold on, I’ll be back with strong men.”

I don’t know where you think I’m going to go.

When the strong men came in the form of the groom’s friends, I was grateful because the January cold was not being kind to me. I was freezing!

“OK, we go through the entrance that could not be farther from where we are,” Julia said running down the stairs.

“Of course.”

Once inside, I saw the team of strong men.

They’ll do!

Guys who were friends of the groom walked down fifteen steps. They were in suits and quite aware that the wedding would be another 70 minutes. They were happy to have a distraction. I’m Catholic so I’m used to long weddings.

“Hi, Hannah! We’re happy to help,” one of the guys said.

That guy took the top half of my body; his arms through my arm pits and the other guy had his hands under my knees. The other two guys spotted. 10 years ago, I would have been over the moon to have had these guys carry me. However, at 32 years old, this is substantially less fun, and inaccessibility is a true burden instead of a fun adventure. The family of the bride left a manual wheelchair for me at the top of the steps. I was placed in the unfamiliar wheelchair without my communication device. I was ecstatic about the wedding however if this was my first encounter with a Catholic church, I would not have gone back. Why would I go back to a place where I wasn’t able to be physically comfortable?

Back to the wedding. The bride was my friend, Natalie. She is Julie’s twin. Go back to the November post if you want background on Natalie.

Of course, she looked like she walked off a runway. With a strapless fitted dress complimented by a huge bow in the back, she was the epitome of a stunning bride. After all the tragedy this family has endured, it was glorious to see them all smiling.

At the reception, I mingled with many of the guests. The groom’s mom, for example, knew my physical therapist of fifteen years through their book club. There were a bunch of people who I had that type of connection with.

During the speeches, the three siblings who were unfortunately watching from Heaven were mentioned several times. I had the honor of being mentioned in light of Natalie’s social calendar. She’s friends with everyone and she and I get together on a regular basis. Her dad pulled off the ultimate

At the reception with dad and daughter!

surprise by having two Broadway singers perform “For Good” from the musical Wicked. Not much can make my jaw drop but this did! I was truly gob stopped.  This was a night that Elmhurst would remember for a long time.

 

“Did you have fun tonight?” Natalie asked.

“Yes!”

“Thank you for coming especially with all the stuff at the church.”

“Wouldn’t have missed it for the world.”

“Let’s get together after I get back from my honeymoon when we can actually talk.”

“Sounds perfect!”

It did sound perfect. I like when Natalie comes over just to talk. It’s beautiful and our friendship gets stronger every time we spend time together. That is why I go to these big events. It’s a culmination of all the small moments because I wouldn’t get carried into a church for just anybody.