The Worst Part? "Leaving!"

Becky achieved 2 of her dreams in one trip last week!  Seeing Elvis Presley and going to Las Vegas.

Becky has been a fan of Elvis Presley for years, watching him on YouTube, looking him up on the internet, buying shirts and other things with his face on them.  She had been planning a trip to Las Vegas for several months and was delighted to learn that people often dress up as Elvis Presley and hang out in Las Vegas.  She let out several of her trademark shrieks!

Becky left for Las Vegas last Tuesday.  I accompanied her to the airport in El Paso to see her off on the plane.  It was a typical Becky Adventure! We went up to the check-in counter with the luggage and told the ladies all the info about her wheelchair, destination, etc.  They were very surprised to hear that Becky was traveling alone. After a few questions about her ability to do so, they asked her where she was going and she answered (shrieking) "Las Vegas!!!!!"  They loved it. For several minutes, they encouraged each person who came to the desk to ask Becky where she was going.  "Las Vegas!!!!!!!"  The ladies had switched from being skeptical about Becky's ability to travel alone to being sorry they weren't going to see her arrive.
Next, we ventured up to security. If you have traveled, you know that the TSA people are typically very serious and look fairly miserable....especially the ones sitting at the podiums looking at i.d.'s.  This TSA man was no different. When it was Becky's turn to show her i.d., he took it without looking up, asked her how she was.  Becky gave him a huge grin and said "I'm fine....how are you? What's you name?"  He stopped, looked down and broke out into his own huge grin.  He answered that he was fine and doing much better now.  He asked the magic question, "Where are you going?"  "Las Vegas!!!!!!!"    She went through the security area without a hitch other than the security people needing to take a little extra time to check her wheelchair. 
* Wheelchair travel tip *  Make sure to wash your wheelchair thoroughly before traveling. Medications can leave residual dust or oil on the wheelchair and show up as illegal drugs.

The people at Southwest Airlines were terrific. They had their own concerns about her ability to travel on her own, but with a little reassurance, most were supportive of her trip.  The assistant who helped me get Becky onto the airplane picked her up beneath her arms and I took her legs.  We carefully moved her into the plane where the front aisle seat was waiting for her. There was a 30ish looking man in the middle seat sitting beside his young son. The man was visibly upset at Becky sitting  beside him. He wanted to move to another seat.  After he offered to move a couple of times, Becky looked at him and smiled.  "What's your name?"  "John". She smiled again and told him "I going to Las Vegas!"  His shoulders relaxed and lowered, his face softened and he took a deep slow breath.  John smiled at Becky.  I  gave her a big kiss and told her to have a great trip.  

The steward was an experienced veteran of many years of flying.  She called after me, "Wait! She can't do this. I don't think it's legal.  Isn't this illegal?"  I answered "Nope. She's flown by herself before. This is her 3rd trip."  "Well, things change and I don't think this is legal now.  I can't guarantee her safety! If there's a problem with the airplane, I can't get her out!"  I tried to reassure her that we understood that and we're okay with it.  "I fully expect you to get everyone else out if there's a problem with the airplane. If you have time, go back and get her. But I have faith there will be no problems...Have a great trip!"  She had an assistant calling on the phone to someone with authority.  He found out it was indeed legal.  The stewardess was still not happy.  Becky called to her and said "Have a great trip!".   
They did!

Becky arrived in Las Vegas and met up with the group of people she was going to be touring with.  The next 3 days they went gambling, shopping, and sightseeing.  She went to the Fremont Street Experience and loved all the lights, especially the light show of the ocean/fish/whales. She also went to the Bellagio and loved watching the water fountains dancing in time with the music.  They went to a traditional Las Vegas show complete with tributes to the entertainers who made Las Vegas famous and showgirls.  On the third day, they went to a comedy magic show and were given private magic lessons. Becky said she learned a card trick, but has yet been able to show it to me.  

But one of the highlights of the trip was seeing two different men dressed up as Elvis Presley!  "Two of them, Mom! Walking outside!"

When I asked her what was the best thing about going to Las Vegas, she said, "The fountains."  When I asked her what was the worst part? "Leaving! I wanted to stay there!"

Becky's Road to Recovery

Becky has come a long way since her accident. She has started going to dayhab again, although she does get very tired very quickly.  She got the "green light" from her orthopedic doctor to start weaning away from wearing her leg braces during the day.  She should be off the braces completely in another month.  Thankfully, Becky has healed well enough to no longer need the heavy duty pain medications that caused so many complications in her recovery.

In the weeks and months since Becky's accident, she has touched so many people, brought happiness and gifts of peace to the ones who have cared for her in the process of her recovery.  

Once example was a nurse assistant at the hospital where Becky spent 10 days inpatient.  This nurse assistant was extremely efficient and professional as she took Becky's vitals, assisted with her bed baths, etc.  But she was also very distant, almost cold, as she provided her services.  Becky would try to talk with her each time, asking her how she was...and always finishing the nurse assistant's visits with "Thank you for taking care of me".  The nurse assistant would tell her "it's my job" and look at Becky funny as she walked out of the room.  One night Becky scared us all terribly.  She crashed.
It was the night before she was supposed to go home. Becky suddenly began breathing very rapidly; her face was beyond pale. The nurse assistant ran out of the room and got the nurse. Everyone thought that Becky was having an anxiety attack. Then I felt her face and realized she had a fever. That's when everything felt dreamlike. Medications to lower fever and flush liquids out of Becky's system were pushed through the IV; her blood pressure was very low and her heart rate slowed drastically. The doctor and all the nurses who had gathered were worried Becky had a blood clot going to her lungs. (It turned out to be pneumonia). The nurse assistant ordered the nurses to back away from Becky. She took over all the comfort measures to calm Becky and me. She worked with the nurse and they got the situation under control.
This amazingly talented and capable nurse assistant came back to check on Becky and tend to her needs the rest of the night...her night off.  Later, when Becky started feeling better,  Becky took the nurse assistant's hand and kissed it...thanking her again for taking care of her. 
The nurse assistant told Becky "Stop, don't do that" and hurried to the door. She stopped at the door and turned to me, saying: "I used to do that. I used to kiss people on the hand and tell them thank you or I love you. But my family made fun of me for it, so I stopped.  No one has done that to me in decades."  She had tears in her eyes. After that, the nurse assistant was very warm and friendly with Becky....actually, with everyone I saw her come into contact with.  

Becky has the gift of touching peoples' hearts. We all do. Who knows how many people she touched with her loving nature, her gratitude for their service, for their company.  

   

Bumps In The Road

A couple of weeks ago, Becky had an accident in her home. She fell out of the Hoyer lift onto her feet then her knees.  A Hoyer lift is a type of sling on a pneumatic jack system. A handle is pumped up and down to lift Becky as she sits in the sling. This is how she gets from her bed to her wheelchair; from her wheelchair to the shower chair; and back into her bed.  It's always been an extremely safe method of getting Becky from one place to another.  But accidents happen to everyone, even to people who have very careful, well-trained staff taking care of them.  Becky fell forward out of the sling and onto the floor. She landed on her toes, bruising them badly. Falling this way also jammed the bones of her left leg together, breaking the femur about 1" above the knee.  It broke in the pattern of a "T", causing lots of pain....but no bruising or swelling. Becky also fell onto her knees, breaking the knee cap of her right leg. This leg swelled up a lot and was very black and blue very quickly!  

Her poor caregiver was in shock just as much as Becky was. They were BOTH crying on the floor when another caregiver came in to see what was happening. Becky said she wasn't hurt and she had stopped crying. They picked her up and placed her on the bed, phoned the on-call nurse and then made a second call to 911.  

Becky went by ambulance to the hospital. She normally flirts and falls a little bit in love with men in uniforms, but not this time.  She didn't start crying again until they got to the emergency room and she was transferred onto another bed.  X-rays were taken of her right leg and the doctor suspected a fracture but was not certain. They decided to admit her into the hospital as a precaution.  

Thank goodness for very good friends and caregivers. Our friend, Sylvia, stayed with Becky through the day and night. I rented a car as soon as the rental place opened and drove like a maniac 5 hours to Las Cruces.  Becky called me several times to check on where I was on the journey, crying through each conversation. By the time I reached the outskirts of Las Cruces, she insisted on staying on the phone with me and listening to me describing which street I was on, which building I had just passed, etc.  When I told her I could see the hospital, she said a pathetic little "yay".  We hung up so I could run up to the hospital. Poor girl had been crying for more than 24 hours straight with no break or rest.  
I stayed with her for the 10 days she was hospitalized. It was quite the adventure.

Becky Loves Her Papa

A couple of weeks ago, my wonderful husband accompanied me to southern New Mexico for a visit with Becky.  I'm going to try to describe the amount of excitement, anticipation and pure joy Becky expressed about her "Papa".  

During one of our nightly phone calls, Becky asked if Papa was going to be coming with me during my next visit.  I told her "yes, he is" and was treated to a long, happy shriek lasting at least ten seconds.  Sure, it's nice that her mom was coming to see her, but the REAL thrill was that Papa was coming.  

When Becky first met Frank, they formed an instant bond.  We had gone to Frank's restaurant following a Special Olympics Bowling tournament.  He treated her to a good supper and spoiled her with dessert. After eating, we loaded Becky onto her van...or rather, we TRIED to load Becky onto her van.  The wheelchair lift got stuck in mid-air.  We had a long wait for the "van guy" so Frank got into his truck and retrieved his Dallas Cowboys blanket (a truly coveted treasure).  He covered Becky and tucked the blanket into her wheelchair.  Becky felt so cared for and special...she talked about it for months afterwards.  

Over time, she was much more interested in talking with Papa on the phone than anyone else. She'd call me and ask "how's Papa?". If she could figure out he was there in the room with me, it was all over.  She HAD to talk with Papa.  Sometimes it is a challenge to get Becky to talk and keep up her side of a conversation; but not with Papa.  All of a sudden, she is full of questions and finding ways to make the call last longer.  They have a fun little game at the end of their phone calls where they keep saying goodbye to each other - louder and louder, sillier and sillier. They both love it!

Anyone who knows Becky knows that she is a terrific hugger.  When Becky hugs you, you feel it for hours! We have all learned to have Becky hug us with her right arm so that we can eventually get away.  If she hugs someone with her left arm, that person is going to be there a while.  Becky always hugs Papa with both arms.  

So, back to our last visit...  We arrived at Becky's home about half an hour before she was scheduled to get home from dayhab.  We made ourselves comfy with me at her computer doing a clean-up and Frank sitting on the sofa in the living room.  Becky came into the apartment and immediately saw my Sonic drink on the counter. "Mom!"  She wheeled over to me at the computer and gave me a huge (right armed) hug.  Lots of kisses were given and received.  I told her to turn around; that's when she spotted her Papa.  SHRIEKS! SQUEALS! "PAPA!!!!!!"   Crazy driving into the living room followed by lots of (left armed) hugs.  She didn't let him out of her sight until it was time for us to leave.  As we were about to leave, Becky gave Papa a special gift.  A stuffed bear wearing Dallas Cowboys uniform.  Yes, they have a strong, very special bond.

It's A Small World After All?

Becky's dream of going to Disneyworld is certainly well-timed.  

The state of New Mexico is making drastic budget cuts, like most states are this year.  Unfortunately, the state of New Mexico has decided that cutting back on programs for the poor and disabled is a great way to balance their budget.  How sad that our state leaders would go after citizens that are all too often "voiceless".  Culturally, many of the people who are directly affected by these cuts do not complain, do not access their government officials via letters or emails; they tend to not be informed about forums or meetings to voice their objections.  Despite having been involved in a very expensive lawsuit due to the way the state of New Mexico used to treat people with special needs, the state is cutting the budgets for people on the DD Waiver by 25% and in some cases up to 73%.   
http://www.sfreporter.com/santafe/article-5232-jacksons-legacy.html?current_page=1

In Becky's case, we are expecting major budget cuts that will force the company that provides her residential care to group their clients together.  Becky will no longer live in her apartment by herself; but will have a roommate.  Because the company that takes care of her is so small, options for roommates is extremely limited.  Luckily, Becky loves her future roommate.  He is a 73 year old man.  She sees him as a grandfather figure and loves helping his staff take care of him.  She gets him drinks of water, tells staff what he needs next.  He's a quiet man who needs help getting around.  He and Becky often spend Saturdays & Sundays together at each others' homes.  

Another way the budget cuts are going to affect Becky is through cuts to the Medicaid program for prescription drugs.  Luckily, Becky is a fairly healthy young lady who takes few medications. But the medications she does take are very expensive. We are going to be challenged to find ways to give her the medications she needs while maintaining her already tight personal budget.

Of course, like almost everyone these days, Becky's personal budget will be greatly affected by the state and national economy.  It's part of normal living.  And like everyone else, Becky will be making choices in daily activities to help her stay within her budget.  She'll have to choose which social activities are important enough to her to pay for the gas to get there....we're pushing for her to continue having an active social life by going to karaoke, bowling and out on a day every other Saturday, as well as church on Sundays.  But because she also goes to Dayhab 5 days a week and doctor appointments occasionally, her social life choices may become limited.  Her world may become quite small indeed.  

Going to Disneyworld will expose Becky to new people, new parts of the country, and new experiences.  It's very important that she sees there is more to life than what she sees every day.  Her trip to New York City opened her eyes and her mind.  She has become much more active online and has goals and dreams for her future.  Becky has also decided to become much more active in her fundraising for her trip!  She has been having me send out cookbooks that she made to some of her extended family members and is having a yard sale in September!  She is also planning on selling pizza by the slice at her Dayhab.

Any help she can get toward her goal of going to Disneyworld would be forever appreciated.

How Disneyworld Can Help Independence!

My daughter, Becky, has cerebral palsy and uses an electric wheelchair to get around. Her ability to talk with her family and friends is an ongoing challenge for her but we discovered a wonderful way to help Becky communicate better!  Travel and adventure!!!
Becky is a very happy, friendly young lady but has huge challenges in independence.  She grew up relying on others to complete all her self-care such as dressing, grooming, and for many years, even feeding. With much work and therapy, Becky was able to learn to use utensils to feed herself, help put on tee shirts, and brush her own hair and teeth.  But all of those tasks take an enormous amount of effort and energy.  Thank goodness for her loving and attentive staff at Milagro de Vida and Angelcare of Las Cruces, NM.  

Last year, Becky went on her first independent adventure with Hammer Travel when she went to NYC.  The process of getting ready for the trip, fundraising, and telling everyone about the trip brought Becky out of her shell.  She eagerly talked to whoever would listen, telling them about her trip to the Today Show, meeting Jon Stewart at The Daily Show, going to the statue of liberty, and going to a Broadway show.  
We've seen a difference in Becky since her trip.  She is braver, more adventurous, and willing to try new things.  And she talks so much more!  She calls me every day to tell me what she did that day at dayhab.  

So, today I asked Becky a few questions about her upcoming trip to Disneyworld.  
Me:   Becky, what are you wanting to do most when you go to Disneyworld?  
Becky:   I want to see characters. I like Goofy, Mickey, and Donald Duck. My favorite is Tinkerbell. I love her.
Me:    What is your favorite Disney movie?
Becky:     Hmmmmmm I don't know.  
Me:     You used to love Aladdin.  
Becky:   Yeah, but not anymore.  I love Tinkerbell movies now.