Adapt

I'm posting this from Austin, TX... where I've spent the past 2 years prior to my mother's sudden illness. I'm enjoying the festivities of SXSW for the weekend and the great weather along with it.

Early last week we interviewed with social security (disability). Unfortunately, my mother was turned down due to not having enough credits to qualify for disability benefits (she has mostly been a homemaker until she began working last year). I'd like to push for an attorney to appeal the decision... she has worked and contributed her earnings to social security throughout her lifetime, so you never know.

My mother does have private insurance. However, the reality is, they don't cover everything 100% and with as long as she's been in the hospital (today is March 20th, she was admitted Dec. 24th...) and with as many physicians she's seen, surgical procedures... the medical equipment she will need once she is released (wheelchair, prosthesis, etc.)... it adds up and we're beginning to fear she's going to max out soon. Of course, it's 5pm on Friday and now I'm remembering I was supposed to call her insurance to find out her running total of costs! Anyway, what I'm getting at is money is suddenly seeming to become a very real issue. (Thank you, by the way, so very much to those of you who have contributed to her medical fund... you have our warmest thanks and gratitude). Fortunately, Esy spoke with a former social worker recently and has tapped into a long list of resources available for scenarios like this. There is hope; it's just going to require patience and diligence.

Shortly after the disability interview, my mother developed shingles which are commonly stress-induced. Shingles have set her back some on progress. She also has a scab on her right leg that has not healed and her surgeon may decide to graft skin on that area again. This will add some recovery time, pushing back further the date to move on to rehab.

Last week, a very special visitor came to meet with my mom- Jennifer Griffin, who is also a sepsis survivor and quadruple amputee. Her story is quite inspiring and I'm so happy to have found her. She was very sweet and gave my mom a slip on hand tool that holds a pen so she can write. Just the day before, Dee was terribly upset because she could no longer write the way she used to. Since then she's been practicing her penmanship, which is also a part of her physical therapy.

I helped my mom brush her teeth... she's been practicing and can hold the toothbrush with her thumb. She did pretty well but still required a little help. I told her not to worry, that she would once again be able to do the things she has done before; it will just take some time as she'll have to find new ways of doing them.

I would just like to encourage any family and friends who have not been able to visit lately, that it is perfectly safe for you to stop by and see her, shingles or not. Children who have either already had chicken pox or been vaccinated (over the age of 2) are not at risk. Just be sure to practice good hand hygiene (wash hands and wear gloves). You may also want to wear a gown if your clothes come into contact with her bed linens. Really the only way you would contract it is if you touch her open sores... these are just some precautionaries to follow, and if it makes you feel any better they're already beginning to clear up.

Since I'm in Austin this weekend, please tell her you're stopping by on my behalf. No pressure. :)

Hands

I've always had a fondness for hands. They can sometimes be pleasantly attractive. I remember I would sometimes look at my mom's hands and notice the skin, shiny and a little taut... and I would think, "what pretty hands."

Sometimes, my mom would make it to where you couldn't notice anything except her fingers. The middle ones in particular. She's very feisty. When she was younger, one of her middle fingers got caught shut on a car door. The healed tip had an odd little shape to it. This was one of the things I feared I would miss the most as she lay in bed, not yet awake from her medicinal coma in the hospital as her fingers turned to black and were withering away like leaves that had fallen from a tree.

I asked my step dad if it was weird that I occassionally have a hard time remembering my mother the way she once was... it seems so long ago. He said in agreement, "yeah, it does seem like a long time ago."

The wound care team decided it was time to leave her hands exposed; the skin, though still a little scabby with edges peeling off, has healed on both hands and has a normal tint. The plastic surgeon who worked on her hands once mentioned he was a "hands man," that was his specialty- indeed. Her right hand in particular still has it's old shape, minus the fingers. And as strange as it sounds, I think it's quite pretty despite everything it's been through. She was able to keep the skin originally on her palm so it looks the same as before. The back of her hand has skin borrowed from her back. Her left hand is a little smaller because she lost a few knuckles starting from where her pinky once was, and the skin on the palm is partially borrowed. Both thumbs are wrapped up to protect them... they still have a little ways to go because the tips are now gone, but she does have the knuckles to bend and straighten them. She calls them her "dancing thumbs".

The wound care doctor gave her clearance to bear weight on her right hand, and her occupational therapist (OT) has been working on strengthening her shoulders and arms to where she can become more independent. She gave her a Velcro cuff that wraps around her hand, and small items like a spoon, fork, toothbrush, etc. fits into a slit on the cuff. The first time I saw my mom use it, her task was to scoop up dry lentil beans and empty them into a bowl. Her OT joked that she would have to count them all! Yesterday, I walked into her room at lunch time and she had just finished feeding herself for the first time! She did a great job, really... her only mess was two beans (pinto, cooked) that had dropped onto her lap.

Once a week, her care staff meets to review her progress. During the most recent meeting, everyone agreed she has been healing much faster than anyone could have anticipated. She might be released in as early as two weeks (which is now about a week and a half away) and transfer to rehab for an additional two weeks of therapy, then may be cleared to return home.

When she comes back home, she'll be wheelchair bound because her hands and legs won't be ready for prosthesis just yet- it may be a few months before that process begins. But at rehab she should learn how to transfer herself from a wheelchair to her bed or bathtub bench... we just have to make sure everything is ready at home for her return. Talk about a nightmare, clearing out the clutter and preparing to rennovate the house so that she can once again function at home. My step-dad and little brother are stuck with that task.

I might be a little unbiased because it's not mine to deal with, but really, it's a good problem to have.

Save The Date - Benefit Show (Mother's Day Weekend)

I'm working on a benefit show which will be held the day before Mother's Day. Several acoustic acts, myself included, will be performing. Details as follows:

Saturday, May 9, 2pm-midnight

Mother's Day Benefit

Opening Bell -South Side on Lamar, 1409 S. Lamar Suite #012, Dallas, TX (MAP)

Treat your mother to this special event honoring Mother's Day, featuring live music from local artists. Benefiting Delia King - quadruple amputee and septicemia survivor, hosted by her daughter Karen Naomi. Suggested $10 Donation.

Thanks to those who were able to stop by for the birthday celebration over the weekend - we had a great turnout and my mother truly enjoyed herself!

The Reconciling Walk

I composed "The Reconciling Walk" and have shared it with both my sisters; Nana and Dee. Nana cried as she was reading it, smiled afterwards, gave me a hug and thanked me. Dee kept saying "you got that right, you betcha, and then gave me a big smile and told me that if she could she would give me a big bear hug. My sisters are very special; I love them both very much. Dee asked me yesterday to share the story with her friends, family, and readers, so I am.

The Reconciling Walk – Inspired by Strong Powerful Wonderful Healing Sisterly Love (By Esmeralda Moore)
January 12, 2008

As I hung up my cell phone after talking to my brother Eliseo, I swallowed the huge lump in my throat and told myself to stuff Kleenex in my pockets and take my walk. I looked at the time; it was 4:45 pm. I told myself that it would be the one of the most important walks in my life. “Walk for just an hour" I told myself, "just do it, do it for Dee, do it for Nana, do it for yourself:”

Since Christmas day 2008 when we almost lost my younger sister Dee to a deadly bacterium my regular exercise routine has been put on hold, but regular power walking is always on my agenda, I make it a point to take my power walks. Today’s walk was a “must”.

Eliseo, also known as “the sister’s boy-as opposed to “mama’s boy” and lovingly named Bebe (Spanish for baby) by our oldest sibling, my sister Emma (Nana), he gave me an update on my sister, Dee. Bebe is the youngest of 3 sisters and 2 bothers. Bebe refers to his three sisters as “the Darrels” Bebe likes the Bob Newhart show, his nickname for his 3 sisters came from this show. Nana is Darrel #1, I am Darrel #2 and Dee is Darrel # 3. “Have you spoken with Van (Dee’s husband) or Karen (Dee’s eldest daughter) over the last few hours?” He asked. “No”, I said, “What’s up”. It seemed that my heart skipped a hundred jumps in a second; somehow I knew it was not going to be good news. He sounded like he had been crying, and to have our little big brother (he is 6’2") cry rips at the heart of his Darrels. “It’s not good, you better go workout, that’s where I’m headed”. My Darrel #3 is going to lose her fingers and her legs, the doctors have told us they will need to amputate as soon as possible”, he said gruffly. We cried together over the phone, I felt us holding each other. I took a deep breath, stopped my hysterical crying and told him to have a great workout.

I headed out the door, my pockets full of Kleenex. This walk would be a sisterly walk. Sadly I realized that it was official now, Dee would be handicapped for life. Dee now joined Nana, and her husband Van in the “handicap” category. Nana has fiboratious tumors embedded in her spinal cord, she was born with it. Nana lives with severe pain, and has lost some functions of internal organs over the last couple of decades. Her pain has always been part of her life. Van hurt his back years ago in a job related accident and also lives with severe pain, he relies on a walking cane to help him walk. Dee tells me that she always has great parking spots since both Van and Nana have permanent handicap stickers; and that this is one of the great added benefits of being the driver of handicappers she says.

The fact that my older sister Nana is alive and still walks at the age of 55 is a miracle in itself. Nana has a slew of doctors and medication, Nana calls her heavy dosage of meds her daily cocktail. She bravely holds off taking any pain medication till late evening; she tells me as long as she feels the pain she knows she is living. We have been told by many doctors for many years that Nana should be in a wheelchair; Nana proves them wrong every year. Nana and Dee live in the same city, and our younger sister Dee has been “Nana’s taxi” for many years driving Nana to her frequent doctor visits. I couldn’t help but recall when Nana had a series of major surgeries; the family had spent many days and nights in hospital waiting rooms; history was repeating itself. It’s not fair I screamed in my head! I want both my sisters to be as healthy as me! I headed down the steps leading to the sidewalk and noticed that once again it was one of those “warm weather breaking sunshine winter days”. It was a beautiful day. The screaming in my head stopped as I felt the warm sun on me and took in the beautiful day.

I knew that I would have to go over Dee’s “list”; just as I had for Nana’s list over 15 years ago when complications from Nana’s birth defect had emerged with a vengeance. I told myself to calm down and make the list and get it over with. The “list” would bombard my Dee and I needed to have offsets ready, my sister would need me to provide the “list” offsets.

The List:

The wind blew my hair and into my eyes- frustrated I removed it. My sister will not be able to do this small gesture I thought. Then a new thought emerged; she will be able to feel the wind on her face…yeah! Her long thick hair…I thought…it will be necessary to cut it short. Short hair is a lot easier to manage without fingers. I recalled that Dee had previously worn her hair short and that she looks very pretty in both long and short hair. We can do short hair, I thought, not a big deal. Maybe I will cut mine short too I thought. We can both have short hair; I will start hunting for good short haircuts for us.

As I walked, I recalled how much my sister Dee loves the outdoors, how much she enjoys flea markets, camping and hiking. A new flood of tears came flowing down- “It’s ok,” I told myself we will make sure she has one of those fancy wheelchairs, knowing my sister she will mischievously pretend to run over my toes. I took us at that moment to a flea market outing in my mind and picked up my pace. Momentarily the tears were replaced with a small smile, with my heart beating strong from my power walking.

As I rounded the corner of my block, smiling I looked up and noticed the beautiful landscaping in my neighbor’s front lawn…my smile faded as I cried over this new list item; how will Dee continue without her gardening hobby? Dee has a green thumb and loves gardening; she grows her own vegetables and has tons of house plants. Offset- there is no way she will cease her gardening hobby; we will get her gardening gloves to go over her prosetic hands. I begged God to please let her keep her wonderful green thumbs, yes that might be possible I told myself. I wondered if I could find gardening gloves with big smiling faces and little red hearts; my new imagined gardening gloves for my Dee gave me courage to continue with my reconciling walk and the list. New tears emerged again coming down fast and furious.

I refused to use my Kleenex to wipe my tears. I wanted the tears to clean my wounded heart. I let the tears fall, but they were clouding up my glasses and I didn’t want to trip so I used some of the Kleenex to wipe my glasses. New item- what about Dee’s glasses, will she be able to put them on ok? Will she be able to wipe them? Offset-maybe we can pursue eye lasik surgery for Dee.

Dee loves to be outdoors especially on sunny days. I imagined her in one of her camping trips with her new hands, a new shiny wheelchair and her prosthetic legs. She can always use the wheelchair along with her legs; she can switch back and forth. I smiled seeing Dee at her camping trip in my head. The tears stopped. There was no doubt that Dee would continue to love life and continue to cherish her outdoor adventures.

As I continued my walk, and turned the corner and headed towards my trail on mile two, feeling the warmth of the sun on me, I knew my sister could and would still feel the sun on her face; her senses were still all intact. I knew that like Nana, Dee would continue to be strong and courageous, and, like Nana, she would love life even more. I knew that today’s list would most likely grow over the years. Any new items on the list will always have a positive offset I told myself.

With love swelling inside of me for my two sisters and with my two powerful legs carrying me I picked up my pace again. I knew that their courage and strength flowed in me; they had been training me for many years to take life and to live it to its fullest. I am so very proud and grateful they are my sisters. I finished mile four at 5:45 pm, it was a great walk, my sisters had joined me in my heart on this walk. My smile was huge as I walked up the steps to my front door. God had also joined me in my walk; I had felt Him holding my hand and gently reminding me all the way what a grand prize my sisters are. He had helped and comforted me during with this reconciling walk.

I couldn’t wait to tell and share my walk with Dee and Nana.

Milestone Birthday Celebration

Dee approaches a milestone birthday this week... a milestone in so many ways. We're truly grateful to have here here with us after all she's been through these past two months. We're celebrating this Saturday February 28th in the hospital cafeteria from 2-4pm. If you'd like to be included on the guest list, please send an email to request an online invitation.

She began her Hyperbaric Oxygen Therapy yesterday- Here's how it works: she is encased in a bed, or "chamber" and is exposed to pure oxygen. This helps supplement the oxygen her blood supply is already providing to her wounds. The pressure changes in this chamber much like a it would on an airplane or underwater diving. She can even see through the case (most patients watch movies during treatment), and can also communicate with people outside the chamber. She'll receive treatments 5 days a week.

Hot Wheels

They say the way to a man's heart is through his stomach. They say.... well... on second thought, I don't really know what the saying is for women, but I can tell you the way to my mother's heart: Hot Wheels.

A nurse noticed today that my mom has some hot wheels still in the packaging up on display. My Aunt Esy explained that my mom collects Hot Wheels, and that one of her nephews used the money he had been saving up in his piggy bank to buy them for my mom as a "Get Well" gift.

Well earlier this morning my mom got the ultimate set of hot wheels, the only kind that can provide her any kind of mobility or freedom: a wheel chair. She & I were free to roam around wherever we wanted, as long it remained on the hospital property. I've never been so excited about a freaking wheel chair in all my life. It was my mom's first time out of the hospital bed that didn't require some kind of procedure or facility transfer.

Initially, the physical therapists granted us an hour. We used up the first half outside enjoying the beautiful sunshine and gusty winds. "You have no idea how good this feels" she said, as she was basking in the sunlight. I teared up a little. I noticed her wound specialist had arrived as he left his car from the parking lot. We went back inside soon afterward because it was getting nippy. As we rolled into the lobby, one of the nurses summoned us back to the room to see the doctor who had just arrived. Our time was cut short. My Step Dad and Aunt Esy, responding to my excited phone call, showed up to join in on this momentous occasion just as we got back into the room.

My mom will be spending more and more time on the wheel chair as time progresses and the doctor assured us there would be better schedule coordinating so that her time wouldn't be cut short again. As her doctor examined her wounds he said that she was healing very well and looked much better from the last time he saw her this week.

On Monday she'll begin wound care treatment in the Hyperbaric Oxygen Therapy Chamber... more details on this to come.

She's settled in nicely at the new facility, has attentive nurses and caring staff. Things are looking up.

Movin' On Up

Eariler on Monday my mother's trach was removed, since she has completed all planned surgeries, and the hole is closing up nicely! Her voice sounds good as well.

She'll finally transfer to another facility either today or tomorrow, depending on when we give the ok. I just spoke with a rep (who is actually an RN) from one of the facilities... and in all honesty they are the front runners. It's a little further away from where I'm currently staying than the other facilities we are choosing from, but it's newer and physician owned and they have their own operating room to accomodate various procedures. Now, I'm not saying she'll need to use this room, but if for some reason it comes up she won't need to be transferred back to a hospital- She can receive surgical care in-house. I'm going to visit this facility shortly; I just wanted to give an update that she will definitely be moving soon... I'll post how she's doing once she's settled in.

[Update: we decided on a different facility than what was mentioned here]

Also, I just wanted to remind everyone of the show in Denton this Friday at Boiler Room - Opposite Day and Shaolin Death Squad have agreed to donate the funds they raise from this show to my mother's medical expense account. Hope to see you there!