Maria Deysi's Story...


Maria Deysi Aguilar was born on March 15th, 2003, in Okinawa, Bolivia (in the department, or state, of Santa Cruz). She is her mother's third child and only girl. When she was three months old, her mother left their dwelling (a wooden structure with a tarp roof) to look for food, leaving Deysi and her two older brothers alone. As it was a cold night, she had left the embers of their cooking fire burning. A stray spark made it up to the tarp, which caught fire and began to melt and drip onto the dirt floor of their home, where Deysi was sleeping, wrapped in a blanket. The only exposed parts of her body (her face and hands) were severely burned by the burning, liquid plastic of the tarp. By the grace of God, Deysi and her mother made it to the city of Santa Cruz (a two-hour drive) and Deysi spent four months in the burn center at the city's childrens hospital. After two skin grafts and many weeks of painful recovery, she was finally released, but after realizing that she was unable to adequately care for her daughter, Deysi's mother chose to place her in the girls orphanage "Hogar Sagrado Corazon" (Sacred Heart Home) in Montero, shortly before Deysi's second birthday.

How is she now?


Deysi is now 10 years old and will start fifth grade in March. She still lives in the childrens home "Hogar Sagrado Corazon" and is well loved by all. She has a sweet disposition and a quick, easy smile. She is doing well in school and is a hard worker, not easily frustrated and generally well behaved. She has been blessed by more frequent visits from her mother and brothers recently and continues to rekindle the bond that she has with them.

Her skin is completely healed (and has been for some time now) but the effects of the burn are still very noticeable. Deysi has never been self-conscious about her differences, but is approaching an age where those differences will start to matter more. In 2014, thanks to the generosity of Shriner's Children’s Hospital in Boston, and the skill and dedication of their professionals, she has undergone a second surgical procedure (on January 27th). This most recent surgery removed the nail bed of the thickened fingernail on her left hand and grafted skin from her leg onto the back of her left hand, allowing more movement in her fingers and replacing a portion of the scarred skin with her own healthy skin. She has also undergone the first of a series of laser procedures to gradually lighten the areas of (darker) grafted skin on her face. We are so grateful to Shriner's Hospital and to all those who have contributed to allow this second trip to become a reality!

Sunday, May 22, 2011

Much to share! (Info/Photo OVERLOAD!!)

We've been doing great and busy, busy as always.  (Too busy to post as often!)

The most important news, which will therefore come first, is that we had our last appointment with Dr. Donelan and the Shriners team on Wednesday.  Can you imagine driving 6 hours just to hear: "She looks great!  Come back in a year or so!"  But really, I wouldn't have wanted to hear anything other than those exact words!  The plan is that we look at our time and what's going on in a year or so, and then decide when we'd like to return, call Shriners...and they'll get us back on the waiting list for another surgery date!  Dr. Donelan is getting excited about starting work on her left hand, so we'll see if she's up for it in a year or two.  I also need to start work my Spanish degree (maybe get at least a year of classes under my belt...or cinture, rather...), so I'm guessing it will probably be a year and a half to two before we're back.  We want to reiterate our deepest thanks to all the wonderful staff at Shriners Boston for their loving work with all the kids they serve: Dr. Donelan and the surgical team and anesthesiologists, Monica, Liza, ALL the nurses and the support staff (especially Jeannie--we love you!).  This has been an amazing experience, one that has really spoken to my heart about the great work that Shriners does for so many children and their families.  We look forward to another trip and further healing for Deysi, in such a loving atmosphere.  THANK YOU!!

And now for the rest of the news...

Two weeks ago (can it really have been that long ago?) we took a trip down to southern MD to visit with my Dad's side of the family.  We had a wonderful visit, someone was thrilled to play with Ryan (my cousin Steve and his wife Cynthia's amazing little boy) and swim in the hotel pool, and though we wish it could have been longer, it was so great to see everyone!

First trip to the pool with Beth...

Mom got in on the act...

Go Fish is universal (and Beth won, thank goodness!)
(l to r: Ryan, Uncle Bill, Beth, Deysi)

Too bad we grown-ups didn't get a chance to talk any!  :)
(Steve, Dad, Aunt Jo, Uncle Bill, Mom, Cynthia, Uncle Jim)

Very cool flower at the reception desk of the hotel (yes, it's real!)

Second try at the pool (learning to kick)


The next Monday, we took a day trip into NYC.  We met up with my dear friend Sarah, walked the streets of the city a bit, went to the top of the Empire State Building...

Wow--everything looks so small from up here!

Hello, Green Lady, nice to see you again!

Two lovely metropolitan ladies...

We then had a lovely dinner with other dear friends of mine: Rachel, her husband Isuru and daughter Ruthie, and Adam.  I wish I had been enjoying the food and company just a little bit less...maybe then I would have gotten up out of my chair to take a few pictures.  But Isuru did take a if he sends them to me (hint hint!) I will post them--it was too good a time not to share more photos.  It never ceases to amaze me how friendships that began back in the 5th (or 6th!) grade have weathered many changes and differences but remain such a comfort and gift to me. 

Deysi and I went out a few days later to put together some goodies for the girls back home and then spent the afternoon making up the baggies for each girl (a great way to practice not only addition and organization, but also sharing with the rest of her sisters back home!).

She also spent an afternoon drawing on our driveway and I was able to capture her masterpieces before the rain started a few days later...

Artist at work in her studio

L to R: Me (always with side-ponytail veil), Max (my Siamese cat back home--I LOVE this drawing!) and Deysi

Then last Friday we went to a Trenton Thunder game, not only to cheer on our "home team" but also to cheer on Monsignor Nolan, our pastor, who threw the first pitch!

Steeeee-rike!!  (Way to go, Monsignor!!)

 Mary, Helene, Mom and Deysi right before the game started
(Ladies--I have never had a more hilarious encounter with a GPS--good thing it was just us girls in the car!!)

Hmmm...this stuff looks least it's the right color... :)

Yup--definitely a winner!!

And something that I didn't have my camera for but couldn't forget to mention...towards the end of the game, while waiting in line for the ice cream (yeah, I'm not telling what else we ate!), I "ran into" my dear friend from camp, Erin Fitzgerald!!  I guess it's not too hard to spot a nun, even across a baseball stadium!  It was great to see you, Fitz!

Then, last Saturday, my college roomie and soul sister Dana came to visit.  After fighting conflicting schedules for the last two months, we finally found one weekend that we could visit, and though I wish it could have been longer, we had such fun!  Auntie Dana is definitely a keeper, as far as Deysi is concerned, after the long and crazy basketball game on Saturday and then the trip to the BEACH (or, as Deysi would probably refer to it, the BOARDWALK near the water) on Sunday! 

The nice, slow rides were about our speed, which was fine with me!

This airplane one was super fun because she could control if it went up or down!

Yes, I DID get on the truck ride--I had to fulfill my life-long dream of driving a 16-wheeler!

Madre...stop honking the horn!!  (Heh heh heh)

We did manage to convince her to go and see the water, at least for a little while...

It was beautiful, but COLD, but we got in up to our knees anyway!  (And I do mean WE!)

Then our feet were very chilly...

(Notice wet habit and toes drawn onto my cement blocks!)

Someone else's feet were cold, too...


We made some sand creations...

Perhaps you wouldn't notice it if I didn't point it out, but that's a castle, and the lower right-hand section is the bathroom, with a toilet with a flusher (=a small stick)!  (Everything has to be accurate, you know!)

Deysi with Auntie Dana

This is the life!!

So after a lovely trip to the beach, we headed back to MA for our last visit to Shriners.  Here is where I was a woefully inadequate camerawoman.  I think it's really true that, sometimes, things are too much fun to stop and get out the camera!  But I wish I had taken even just a least I have other photos of most of these same wonderful folks from previous visits...

We took our time driving up on Monday--she's much too active to get any pleasure out of those 6 hour drives and now seems to be utterly traumitized with the idea of Connecticut (the longest state we drive through to get to MA)!  She knows it's the longest and when we cross the border it's like the end of the world is drawing near (OK, I'm exaggerating, but she really dislikes that part of the drive!).  She now uses the word Connecticut to mean anything really really really long: a few nights ago I told her I would sit with her while she fell asleep, but that I would be praying since I still had some of divine office left to pray.  She asked: "A lot?"  I answered that yes, a good deal.  She asked: "How Connecticut?!"  :)

Soooo...we made it through CT and arrived in Winchester just in time for dinner with Jill, Ben, Avery and Donna (thanks for waiting, guys!!).  We had a lovely dinner and hated to say good-bye to Auntie Donna.  Later, after catch with Toby, playing with a cool glow-in-the-dark toy with Ben and Avery, and lots of hugs with Jill, we went to sleep.  Thanks, you guys, for your unbelievable hospitality this trip (both Donna and Blacks!).  We would have been lost (literally!) without you, and we miss you like crazy! 

The next day we made the trip ("Not as long as Connecticut?") down to Dartmouth again for a last, lovely visit with our friends Gretchen ("Chin") and Buddy ("Body"), with surprise guest appearances by Martyn (whom Deysi now refers to as my grandfather...pretty close...he refers to me as his girlfriend...or is my faithful fashion guru...) and Kevin and Betty Ann.  What a gift, that dinner and all the fellowship that followed.  Deysi was especially enthralled with all of Kevin's wind-up toys, especially the killer whale that really swam (in the bathroom sink--yes, we tried it out!) and the bike-riding panda.  It has been such a blessing to revisit such a special place, both physically as well as in my spiritual journey--thank you for being such a gift in my life, and for holding Deysi, and all our children, in the Light.

Wednesday we tried to squeeze every last thing into our last day in MA:
- a wonderful and long overdue (and way too short!) visit with my Jills buddy and great friend Meg and her beautiful baby, Roan.  Schmeg, what makes me happiest is to see you so happy. 
- the previously mentioned, wonderful visit to Shriners
- meeting and totally enjoying Laura, sister of Michelle (current SLM in Okinawa, Bolivia)--thanks for such a wonderful afternoon and for all the goodies!  We hope to see you again soon!
- one last romp down 93, the pike, and the dreaded Merrit (my favorite, but her least favorite for its twistiness and just because it's in CT!!), 287, 206... and home again, home again, jiggidy-jig!

(Hang in there, I'm almost done!)

Thursday we met up with Jenna, our volunteer from a couple of years ago, back in NY for preparation for her mission to Haiti (our prayers go with the whole group, that leaves for Haiti tomorrow).  We were able to run into Adam (SLM Director extrodinaire), Matt (former Oki volunteer who just happens to have grown up with none other than Auntie Dana!!), Jessica, Jayne and other wonderful SLM staffers.  I'm hoping (hint! hint!) that we'll be gifted with a few of those photos, but here are a couple from our lovely visit with Jenna:

Squish-your-head hug!!

"How beautiful are the feet of them..."
(sorry, Martyn--I just can't get rid of my tennis shoes--my "real nun shoes" just aren't as comfortable for hour-long basketball shoot-outs...or for anything else, for that matter!)

AND...yesterday we had a beautiful day at the NJ Aquarium with Tia Teresa and Tio John!!  After working so hard to find a date that would work, we made it happen and got amazing weather to boot!  We had such fun and are looking forward to seeing you guys again before we leave!

On the light rail...

Her one comment for this guy: "Es goooooooooordo!" ("He's soooooo fat!") 
(And we got a great laugh when, a few minutes later, he unceremoniously stuck his whole head in the water for a few minutes, as if to say: "Why take the trouble to get all the way into the water, when I can just cool off like this?!")


We love you guys!

No comments:

Post a Comment