Loving Guatemala for the Third Time...

Brad Blauser and I returned to Guatemala on May 16th. It would be our third time in the country providing adjustable pediatric wheelchairs to children with disabilities. I was excited to see old friends and share the experience with my mother (Mum), Christina. She was our second volunteer to go to Guatemala; the first volunteer was my husband, Bruce.

We met Mum at the airport. She had already connected with Sam and Annie from Hope Haven and was sitting comfortably in the van when Brad and I arrived from Houston. I breathed a huge sigh of relief.

Sam

I had stayed in Sam and Annie's quarters at the Hope Haven guest house before but never had the pleasure of actually meeting them until that day at the airport. They were a wonderful couple; both filled with love for the Lord. We enjoyed a lovely lunch with them at the San Martin restaurant before we went to the guest house.

The house was as we left it in October. Our fur babies, Tank and Dozer, were there to greet us. The only thing I noticed that was different was a new kitchen table and the wicker sofa was missing from the rooftop. It feels like home whenever I go there. It's a welcome respite from cell phones, TV, laundry, cleaning and other responsibilities. Okay, well, not exactly. I remember doing a lot of dishes, some laundry, and making dinner one night, but it feels different when you're doing those things at someone else's house, right?

Mum heading into Church

Lunch with Dick Rutgers & Others

On Sunday, we attended Church in Antigua, had lunch with friends, went to the jade museum, and went shopping at the market for souvenirs.







We stopped at the Cerro de la Cruz and had dinner at Monoloco before heading back to the house. 


Cerro de la Cruz

The view of Antigua from the Cerro de la Cruz was incredible but it was a cloudy day so we didn't get a great view of the Pacaya volcano.




Monoloco Menu

A Mother's Love Knows No Boundaries...

Happy Mother's Day!!

I have three children. There isn't anything that I wouldn't do to keep them safe and healthy...



Izzy with Diana and her mother in 2014

 

You've probably heard the term, "A Mother's Love Knows No Boundaries," and it is very true. All around the world there are mothers who are struggling to care for their children with disabilities, but every day they sacrifice everything and do their very best to care for them. So, this blog is dedicated to all the mother's who choose to care for their children, and refuse to give up...

This is a photo of little Dianna. I met her in March 2014 at one of our wheelchair seating clinics in Guatemala. She has very complex medical needs and cannot walk. Through my personal donation of $350 she was able to receive a wheelchair. It was an incredible experience to meet the child who would receive a wheelchair because of my donation. I thought about all the ways the chair would change her life. I remember her mother dressed her in a beautiful little dress and she was wearing the most precious little shoes. I took a photo of her shoes.


I returned to Guatemala in October and we had made plans to visit some of the children that received our wheelchairs in March. I wanted to know how the wheelchairs had impacted their lives. Were they attending school now? Were they able to go outside and play with friends? I had no idea we were going to visit Diana. I remember Brad Blauser had walked into the house ahead of me and he came out and said, "You're not going to believe who this is...." I looked inside and there she was, and I wept. I wept because I wasn't sure if Diana would still be alive, and she was.

I connected with Diana's mother on a level that only another mother of a child with a disability would understand. With the assistance of a translator, I told her about my own son and also about the photo of the shoes that I had taken. She walked into another room and appeared with little Diana's shoes and presented them as a gift to me. She had outgrown them. I reciprocated by giving her some Quetzals to purchase Diana some pink new shoes and for her other needs.

Today, Diana's perfect little shoes are in my library. They remind me every day of Diana and her mother's love. There are no boundaries..

 

I am returning to Guatemala in less than 7 days and I hope  to see Diana again as well as many of the other children we met last year. Through several generous donations, we will be providing 30 children with adjustable pediatric wheelchairs. My mother, Christina, is traveling with us and she's so excited about volunteering. I can already tell this will be an incredible trip!!

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Donations change the lives of children with disabilities all over the world. If 100 people donate just $20 each then 6-8 children will receive wheelchairs. Please visit Wheelchairs for Kids International and learn how you can make a difference; help a child go to school; play with their friends, and just be kids..

Visit: http://kidchairs4life.org/WFKIDonate.html

Hermano Pedro Hospital and Orphanage







Hermano Pedro Orphanage in Antigua

It's difficult to write about Hermano Pedro.  I've written so often in this blog that I either didn't know what to expect or it was better not to have expectations. In this case, I knew I had to prepare myself mentally for the worst.  

 

Images of children with disabilities warehoused in bare cribs with blank stares, sunken eyes and dressed filthy torn clothes with dirty diapers came to mind. I had seen videos of orphaned children with disabilities in Europe and I cried afterwards. What might an orphanage be like in such a poor country? What kind of work would we be doing? Could I handle what I was about to see, smell, or hear?

I was pleasantly surprised and heartbroken at the same time.. Let me explain..
 

We were a small group-- me, Ilse, Brad, Bruce, and Greg Skolaski. The best way to describe Greg is that he's a retired American Occupational Therapists who travels around the world doing voluntary OT work wherever he's needed. It was a joy spending the day with him.
 

Greg, Bruce and Brad

 



The front of the building is a typical medical clinic. There were lots of local people waiting to be seen. The hallways were decorated with Franciscan artwork and each section had several small courtyards. Some of the courtyards were garden, others were play areas for children, and another was converted into a small swimming pool for the residents.

I'm not sure how many beds they had but I estimate it was probably around 300 with residents of all ages. Ilse explained that many of the residents were not orphans. Their families could not provide them with the skilled nursing care or support they needed so the orphanage was their only option. Ilse lives in Antigua and goes to Hermano Pedro often. She knew several of the residents and staff. You could tell they really loved her visits.

One room appeared to be a room for medically fragile infants; another large room was for adult males; one for adult females of all ages. I could go on and on.. I passed a therapy room where a couple of residents were receiving physical therapy. I think we arrived in one room as the residents were getting their briefs changed. Each resident sat in their wheelchairs at the foot of their beds waiting. In the ladies' room the beds were covered in brightly covered bedding. Each room was very clean and staffed with multiple nursing assistants.

Ilse, Brad and Bruce working
on a resident's wheelchair

We dropped our boxes of supplies and got to work on repairing some of the resident's wheelchairs. Most of the chairs required new belts and harnesses. Breaks were tightened and other adjustments were made as needed.

Bruce entertained residents with his singing and Ilse chatted with some of the residents while working on the chairs. One young woman shared that she was going on vacation. We were made adjustments to a temporary wheelchair that would be easier for her family to transport.

This young woman loved spending time with us!

I thought about the medical care, education and support these young women would receive if they lived in the U.S. They would have gone to school with their peers; some may have gone on to college, and several would have jobs, gotten married, and a few would have children of their own.  It will take decades of social reform before Guatemalans with disabilities are able to experience the rights and freedoms promised by the United Nations Convention on the Rights of Persons with Disabilities (CRPD). However, I see a glimmer of hope through the images I see on Facebook of some of the workers at the Hope Haven participating in wheelchair sporting events. I wish I had more time to spend with them. I would love to hear about advocacy and systems change in Guatemala.

What disturbed me the most that day was the manner in which a young woman was restrained in her wheelchair. Her arms and hands were covered by a denim contraption that I was told was protecting her from biting herself. I long piece of fabric came under her breasts and was tied tightly in the back of the wheelchair. Another piece of fabric was lodged tightly between her legs and was supposed to keep her from slipping down in her wheelchair . She was crying and shaking. It wasn't clear whether she could walk or not, however, she was able to pull her legs up and sit cross-legged. We added seatbelts and a chest harness to make sitting in the chair a lot more comfortable for her.

I wanted to cry. I thought of my own son and what his life would be like as a young man with autism living in Hermano Pedro. He was self-injurious when he was younger. He would hit himself, bite at his hands when he got frustrated, and pinch other students. Would he be strapped into a wheelchair? Would he wearing diapers into adulthood sitting in his own urine until someone noticed or until diaper change time happened? Would he have even survived into adulthood in Guatemala? Those were the thoughts that occupied my mind that morning. I wanted to leave.. 

 

First Group & Lasting Memories..

 

The first group of children received temporary wheelchairs when they arrived at the Hope Haven facility on the afternoon 19 October. We quickly transported everyone over to the Mennonite camp where they would be staying for the next couple of days.

Helping Lucinda and her sister prepare dinner for the group.

Lots of goodies for the children!!

After a delicious dinner, we gave each child a blanket, a rain poncho, stuffed animal, and tooth brush and toothpaste. They were surprised and delighted.

It didn't take long for us to get to know the children and their mothers. What impressed me was how quickly mothers began to get to know each other and share their stories..

It really doesn't matter where you are in the world; mothers who have children with disabilities are often isolated. It is such a comfort to talk to another mother who understands, has similar challenges and hopes and dreams for their child.

 

The next day everyone was transported back to the Hope Haven facility. Physical Therapy students from the university in Guatemala were already working hard in the assembly area when we arrived. There were a few that I recognized from the clinics in March.

 

 

 

 

 

 

 

Beautiful little Blanca in her new wheelchair!

The children received their new wheelchairs and the mothers received wheelchair training. The more  independent children ventured outside of the seating area to try out their new chairs and play basketball.

Each chair is adjusted to meet the child's mobility and postural support needs. Some children required complex supportive seating because of postural deformities. Proper postural support provides comfort, improves function and helps to prevent future postural problems.  


I sat with each mother, and with the help of our skilled interpreter, Raul, I asked them questions about their child's diagnosis, whether or not they were attending school, the types of therapy their child was receiving, activities their child enjoyed, and what their hopes and dreams were for their child. It is important to learn about their history, their needs and goals for their children. The older more verbal children were able to share their hopes and dreams with me. One child wanted to learn how to fly; another wanted to be a secretary, and another wanted to be an interpreter. I spoke to them briefly about the United Nations Convention on the Rights of Persons with Disabilities (Guatemala has signed and ratified) and their rights. I planted the seed. :)

What concerned me was that probably 90% of the mothers or more shared that their child was not attending school. Some mothers said their child went to a rehabilitation facility to receive therapy once or twice a week. On the USAID website it states, "only two of every five children finish sixth grade and just 19 percent of all high school-aged youth are in school in Guatemala."

How can we talk to children with disabilities about going to school when only a small percentage of the general population makes it though primary/elementary school and even less make it through middle school? What can we do to provide them with opportunities that will help them grow into responsible productive citizens of their countries? Giving them a wheelchair is step in the right direction that will hopefully open doors to opportunities that were not afforded before. 

The group receives wheelchair user training.



Stairs are always tricky!

That evening we made a makeshift movie theatre. I brought my laptop and small projector. Hope Haven supplied speakers and a white sheet on the wall served as the screen. I brought a few movies I thought they might enjoy (Disney's Frozen in Spanish was a big hit!).

It's difficult to imagine a child or mother who has never watched a movie. I think some of the mothers were enjoying the movie more than their children! Even today it warms my heart to remember the giggles and squeals of their children and their mothers!

 

The next day we loaded the wheelchairs on top of a chicken bus and we all went to the La Aurora Zoo in Guatemala city. What a day!!! The children had never visited a zoo before. They were mesmerized by the monkeys; amazed by the penguins, and loving every minute of it!!





Raul brought his funny face to the zoo!


 

Brad and little Blanca

Mothers :)

Loving her new chair!!!



Princess Hilda!!

Putting their wheelchair training to the test!

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Donations change the lives of children with disabilities all over the world. If 100 people donate just $20 each then 6-8 children will receive wheelchairs. Please visit Wheelchairs for Kids International and learn how you can make a difference; help a child go to school; play with their friends, and just be kids..

Visit: http://kidchairs4life.org/WFKIDonate.html






A Topsy Turvy Week Indeed!

Azwan and "Auntie Izzy"

The last week has been one of those topsy turvy weeks. I invited Azwan to stay with us for a few days. We went to the asylum office to check on his status, ate a nice lunch, and then went downtown to the National Air & Space Museum..

[Thank you to all the staff at the asylum office in Arlington, VA! We love you!! You were so patient and kind to us!!]






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Commander William "Willie" McCool - Pilot, Space Shuttle Columbia

One of the Air & Space exhibits includes a display honoring the lives lost in the space shuttle Columbia. I took a photo of the display because Commander William "Willie" McCool's information was included. I had the privilege of having lunch with his father, Barent, last year at a National Institutes of Health event. He gave me a detailed account of the day the shuttle broke up during re-entry and all of the amazing people who intervened to help him get to NASA and deal with the media.

Commander William C. McCool
1961-2003



Barent McCool unbuttoning his sleeve to
show me his Marine Corps tattoo!


Barent McCool is a fellow Marine who served during the Vietnam war. On Veterans Day, I thought of Barent, his military Service, and his son's. I will never forget his Service and his son's bravery. Semper Fi Barent!! God Bless You & Your Family!!!








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Azwan pointing to his home

There were lots of amazing exhibits at the Air & Space museum. My favorite activity at the museum is the planetarium. Azwan thoroughly enjoyed learning about the stars and planets but I think his favorite activity was in Moving Beyond Earth where there is a Google Earth station and visitors can explore earth, the moon or mars in an immersive interactive display.  With relative ease Azwan was able to drill down to find his home in the village he came from in northern Iraq. The technology was amazing!! I could see Azwan was thrilled to find his home but I couldn't help but feel sad that it may be several years before he can ever return to his village and see his family and friends again. As an immigrant myself, I understand the heartbreak that comes from leaving your home and people you are close to. I was fortunate that I came to the U.S. with my parents. Azwan is fortunate that technology allows him to speak often with his family via Skype but it's not the same. I know his mother worries about him but hopefully it will give her some peace of mind knowing that he has friends, like Brad and I, who are here to help him and care about him. 

Azwan is an amazing mature young man who will persevere and be successful in any endeavor. As a teenager, he assisted Brad with wheelchair distributions in Iraq and worked at an English school. I look forward to watching Azwan flourish in America. We are all praying that he will be granted asylum. Your thoughts and prayers would be appreciated!!

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CRPD Work..

On Veteran's Day, I presented at the Association of University Centers on Disability (AUCD) annual conference with Dr. Patricia Morrissey and Andrea Shettle. Pat is the President of the U.S. International Council on Disabilities and Andrea is a program manager in the same organization.  The title of our presentation was "The Use of Social Media to Promote the Ratification of the Convention on the Rights of Persons with Disabilities." Pat spoke about her very successful blog and book; Andrea addressed the USICD's social media efforts, and provided valuable social media tips; and I spoke about my CRPD Facebook page that has over 10, 670 Likes (demographics, lessons learned, etc). The room wasn't packed but the feedback we received was excellent. If you work in the disability field, or you're a parent or advocate, then I highly recommend the AUCD conference. Please contact me if you would like to receive a copy of our presentation. Your calls to your State Senators and to Senator Harry Reid asking for a Senate vote soon to ratify the CRPD would be appreciated!

Izzy and Dr. Shriver

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One last highlight from last week..

On November 13th, I finished work and drove to Politics & Prose bookstore in Washington, DC, to attend Dr. Timothy Shriver's book signing for his new book Fully Alive.  It was horribly cold outside and I wasn't entirely sure I wanted to drive in the dark to an unfamiliar area when it was raining. But, life is always an adventure, right?!

I got to the book signing before anyone had arrived, purchased 5 copies of the book, and went downstairs to enjoy a grilled cheese sammy, and a cup of coffee. I have the book on Kindle and had started reading it when it was released earlier in the week. I was working my way through chapter 4 in one of the hard copies I just purchased and was reading about his Aunt Rosemary who had a developmental disability and was the sister of President John F. Kennedy and Eunice Kennedy. I could understand why Rosemary influenced so many members of her family. I could relate because of how my own son has influenced so many..

I was also Tweeting about being at the event, sharing photos, quotes, etc. I included Tim as well as his brothers and sister in the Tweets because I knew they were probably excited for him and might appreciate reading tweets during the event. Some people retweeted and favorited some of my Tweets and Dr. Shriver was appreciative of the support.

I waited until the line was almost down to a couple of people and stood at the end of the line. The gentleman in front of me was distraught because he didn't have a copy of the book (the store had sold out) so I offered one my own copies. He insisted that I take money for the book but I told him it wasn't necessary. He finally pushed the money into my hand. He went on to tell me about his adult daughter who has cerebral palsy and how the Shrivers' impacted their lives. It was finally my turn to see Dr. Shriver. I never do well at meeting "celebrities." I've met quite a few and I always regret it afterwards because I get nervous and what spews out my mouth is never something noteworthy. When you meet someone who has given so much to improving the lives of people with developmental disabilities you want it to be noteworthy.  But, instead, I said, "You don't remember me do you?" He smiled and responded with a polite, "No." I reminded him about my interview with him last year for the Joseph P. Kennedy Foundation Fellowship. I thought he might remember me because he took note of my Scottish accent.

[Side Note: I didn't get accepted for the Fellowship. During the interview I shared that I wanted to work on international disability rights and it wasn't a focus area for the fellowship that year.  I told myself that if God wanted me to be a Kennedy Fellow then it would've happened. I was obviously supposed to do something else instead that year. I prayed and trusted that God would show me the way and that's what finally led to my work with Wheelchairs for Kids International and the creation of the CRPD Facebook page. If I had received the Fellowship then I wouldn't have had the time to get involved with Wheelchairs for Kids International; I wouldn't have gone to Guatemala, and I wouldn't have gotten to know Azwan.]

I had books signed for my son and others but I couldn't bring myself to ask him to sign my own book. Weird, huh? I shared on Facebook that it felt like a selfish act. I did the same thing when I met President Obama a couple of times and the First Lady. I didn't ask for an autograph or a photo when everyone around me was. For me, it was a gift just having the experience and I will treasure the memory. But this time, I asked for a photograph, so that I could show my son who participates in Special Olympics.

Life often take unexpected twists and turns and can get a wee bit topsy turvy. Sometimes disappointments lead to something greater and beyond your wildest dreams. And, sometimes taking risks lead to wonderful adventures that help you on your path to understanding what it means to be "Fully Alive."

Receive your copy of Dr. Shriver's book from Amazon for less than $20. It makes a wonderful gift!! 

Lximche Mayan Ruins



Lximche Mayan Ruins

On our second day in Guatemala we traveled to the Lximche Mayan ruins located in the western highlands of Guatemala. I was quite excited because we didn't have the opportunity to visit any Mayan ruins in March. I wasn't disappointed. We hired a tour guide at the gate and we're glad we did as we all agreed that if we had skipped the tour guide then we would have walked around the grounds reading the placards and left in fifteen minutes.

The history of the Kaqchikel people sounded very similar to periods of history in North America and Europe--battles between clans, sacrificial practices, the Spanish conquest, people decimated by smallpox, etc.

Raul & Brad at the Lximche Ruins

Raul, Brad, Izzy, Bruce at the Lximche Ruins

Where the heads were chopped off...


 

 

 



Of course, we asked our guide if life for the Kaqchikel people was similar to the life of Mayans portrayed in the movie Apocalypto. He responded with a confident, "Yes." Like most movies, I imagine there were some liberties taken here and there with some of the historical facts and the level of brutality. Well, maybe not (see image caption to the right).

We often think about people like the Mayans as being primitive but when you compare their history to the history of the Spanish and the British during the same time period then they were equally as brutal, if not worse.. Remember the Spanish Inquisition--over 5,000 people died, the Tower of London, etc.?


On a lighter note, the Kaqchikel people hunted, planted crops, practiced the Maya religion, washed clothes, played sports, fell in love, held business meetings, told stories around fires, and enjoyed festivities. It would have been amazing to have seen Lximche in its former glory..

Brad meeting a new friend..

There was a Mayan ritual going on at the very back of the ruins, where the least of the royal families would have resided. We thought it was staged for tourists, however, we were wrong. There was a colorfully dressed Mayan Priest surrounded by local followers.  We couldn't hear or understand what he was saying (the Kaqchikel have their own language). Instead, we stood in the rear, quietly watching the Service and left early wondering what was going to be the sacrificial offering that day (I think it may have been a chicken).

After visiting the ruins we returned to Hope Haven and met the first group of mothers and children..






October 18th - Our Arrival

It's somewhat surreal when I think that just a couple of days ago we were driving on a dirt road on the side of a mountain in Guatemala trying to get to San Luis Jilotepeque to visit children who received our wheelchairs in March, 2014. It was an incredible trip and very different from the March distribution..

Our Arrival

Brad Blauser arrived in Guatemala City ahead of us although we were supposed to arrive 30 minutes earlier than him. Our flight from Miami had an mechanical issue and we had to switch to a new airplane. It all worked out in the end. Our new friend, Raul Porras, was there to meet us. I'll write more about Raul later because I want to share his story with you. I'll just say for now that he's a little younger than my father, his English is wonderful, he has a marvelous sparkle about him, and the gift of the gab.



The volcano is behind me

We decided to go straight to Antigua instead of going to the Hope Haven Guest House. We walked around Antigua, ate a delicious lunch at Monoloco and then Raul took us to a beautiful park that boasts an incredible view of the volcano, works of art, and other surprises.

I was a little nervous about holding this bird
because I had just been bitten by another bird.

I remember it was a challenge just getting to the house. We hiked to it with some of our suitcases because the road had partially washed out and we couldn't drive the large van over it without getting stuck. It was so dark I wasn't sure if it was a few feet to the house or half a mile. It was a relief that it wasn't very far at all. We were greeted immediately by our guard dog fur babies Dozier and Tank.

The next day we checked the road out as well as the tall corn stalks growing beside the road (Wow!).

Brad and Bruce sizing up the corn stalks

Raul, Bruce & Brad checking the ravine in the road





The plan for the day was for us to visit the Lximche Mayan ruins located in the western highlands of Guatemala and then meet the first group of children at the Hope Haven facility...
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Donations change the lives of children with disabilities all over the world. If 100 people donate just $20 each then 6-8 children will receive wheelchairs. Please visit Wheelchairs for Kids International and learn how you can make a difference; help a child go to school; play with their friends, and just be kids..

Visit: http://kidchairs4life.org/WFKIDonate.html