Archive for ‘cerebral palsy’

June 21, 2013

Jovia feeding Benjamin

Jovia is such a good big sister!  She’s so motherly with Benjamin – comforting him when he cries, scolding him when he’s doing something he isn’t supposed to, yelling for help when he’s fallen down or needs something, trying to help dress him and now…. feeding him.  :)

(It’s melting ice cream cake, in case you wonder what kind of green goo we feed our children!) 

Jovia feeding Benjamin from sister haiti on Vimeo.

June 5, 2013

Waiting Child Alert!

This adorable young man is Barry. 

April 2013 Haven Children.Trip 098

Barry is 8 years old and has cerebral palsy.  He is described as very, very sweet and very cognitively aware.  He seems to understand most things when you are talking to him, can answer questions with “yes” and shake his head for no.  He will move his limbs when asked but because of his cerebral palsy is not able to do much else without help.  He isn’t yet sitting independently.  Barry has a few more words and can let his foster mom know when he wants to walk, when he wants to eat, and when he wants a drink.

A volunteer who knows Barry says this: 

“I consider myself very blessed to have a bond with him that I can’t explain. His foster mom will let him know I’m coming, and he starts smiling and laughing and want’s his “ma.” He and I both light up when we see each other! This little boy has so much love to give, he is always smiling! He loves to play and interact, but most especially practice walking. He is still so small for his age, still easy to carry and transfer into his wheelchair. His foster home is doing a lot of things to try and get him stronger and moving more on his own. Barry has so much potential in his movements, his verbal skills, and his communication! He needs a family now!  He does really well with relaxing massage and being stretched, and can move so much more after these exercises. We all want to see Barry get a family of his own that is committed to his care. Barry is one of the sweetest, happiest children I have known. I care deeply for this little boy and want to see him adopted as soon as possible. He is going to bless a family tremendously!!”

Barry lives in West Africa.  His country program has flexible requirements for families adopting children with special needs.  Families interested in Barry or with further questions should contact me using the form below and I will email you contact information for the agency/program.

PLEASE help us spread the word about Barry!

This sweet boy has so much potential.

I can’t wait to hear how he flourishes under the love of family.

April 20, 2013


If you’ve ever wondered what a living, breathing, WALKING miracle looks like….well, here he is! 

Benjamin took his first unassisted steps today!

No walker, no braces.  Just walking.

Two years ago very few people thought this would ever be possible.

God has done such amazing things in this little boys life. We are so, so grateful.

He’s going to be running all over the place soon!

Go, Benji, go!

Benji Walking from sister haiti on Vimeo.

April 3, 2013

Communicating with Benjamin

I feel like we’ve finally hit a long awaited breakthrough with Benja.  He’s trying to communicate with us so much more than he used to!

For example, this afternoon he waved “hi” at me when I went into get him up from his nap.

As I was changing his diaper he signed “eat” and “said” yes (this sounds like a grunt but we know what he means) when I asked if he wanted a snack.

When he was done eating he signed “all done”.

He then signed the word socks” and crawled over and sat by his socks and shoes signing “socks”.

After I put them on he went to the TV and signed “Yo Gabba Gabba” and then pointed at the TV.  He started squeeling and laughing when I turned it on.  I asked him if he was happy and he signed happy!

He’s changing so much!  Actually seeing him tell us what he wants instead of tears and frustration…I can’t tell you how good that feels.

Go, Benji, go!!!


January 7, 2013

and still he waits….

Two years ago I walked into an orphanage in Africa and met a precious baby boy.

Elias* was about a year old.  I was told he had seizures and low muscle tone.  He had reflux and was considered “failure to thrive”.  His caregivers asked me if I might be able to find a family for this precious baby boy.

Of course, I answered.  Of course this precious, adorable baby boy would find a forever family.


Two years later…Elias is still waiting.

His chances in Africa aren’t good.  If he survives he will spend the rest of his life in an institution.  He has been diagnosed with cerebral palsy and they have a hard time controlling his seizures with the limited medical care available to him.   He is being fed through an NG tube (in his nose) because he aspirates his food.  While the orphanage he is in is a great one, it is still an orphanage and Elias NEEDS a family.  There is nothing that can replace a loving family.

Last time I was at his orphanage I went looking for him.  I had been warned that he looked a lot different.  “Like a holocaust victim” is how a friend who works at the orphanage described him.  Apparently he had been sent to the hospital and came back to the orphanage is worse shape than he was in before.  I was heartbroken.  He had changed so much.  He smiled at me as I held him and I smiled back with tears in my eyes knowing how much harder it would be for him to find a family now.  Now that he was older, gaunt, stiff and spastic.  I was heartbroken that this little boy with SO much potential is wasting away without a family or the medical attention he so desperately needs.  Wasting away because no one will step out and say YES that they will rescue this precious child.

Elias is a beautiful, innocent 3 year old boy who needs and DESERVES a forever family.


I know it’s scary.  I know.  Elias needs someone willing to take a leap of faith.  Someone who see’s what I see:  a sweet little boy who longs to connect with you but who is stuck in a body that is working against him.

Parenting Elias isn’t going to easy.  Especially at first.  There is no doubt about that.   But I can tell you, this little boy is WORTH IT.  He will make the most amazing son for someone willing to step out of their comfort zone and bring him home.

Please friends, won’t you consider if you are this sweet boy’s family?  

Elias has waited far too long.

*name changed to protect privacy

Little E from sister haiti on Vimeo.

October 2, 2012

Benja’s Eating Update

It was almost exactly a year ago that I was in Uganda trying to convince 18 month old Benja that having something {anything!} in his mouth was OK.   At that point anything you tried to put near his mouth (your hand, a spoon, toothbrush, etc) was pushed away violently.  If you insisted he would throw himself backwards, shaking his head back and forth as fast as possible and start to cry.  He would do anything  to keep whatever you were offering away from his mouth.

Shortly after we came home we notice he started putting toys up to his mouth.  But only if he did it himself.   I spent time every day forcing my finger into his mouth to massage his gums.  His dentist shook his head, muttering under his breath that he couldn’t believe that Benja kept his mouth so clamped shut all the time that most of his teeth have never been given a chance to erupt.  “Do what you can to get him used to having things in his mouth…” the doctor told us.   They tried to pry his mouth open at one point at the hospital.  It was then that we realized we were dealing with a bigger problem – that it wasn’t that he wouldn’t open his mouth, he couldn’t.    It only opened a few centimeters.

So I kept at it.  Massaging his gums, encouraging him to make sounds and move his mouth, clapping and cheering when his tongue ventured past his teeth to test the taste of a new toy.   We started to notice him opening his mouth more and more.   And then he realized he loved the taste of icing.  So if we put our fingers in his mouth with something sweet he would allow us to keep doing it over and over.

A few months later he discovered that baby food on a spoon was pretty yummy.   That was the start of his love affair with food and the end of his oral aversion.  Now anything and everything that can be eaten off a spoon is taken happily.  Just the sight of spoon gets him excited.  And holding a spoon, even with nothing on it, is one of his favorite things to do.  He can now open his mouth wide enough to stick a small finger between the top and bottom jaw.  A spoon still wont fit between his teeth but if you scoop the food under his top lip he has learned to suck it down quickly.

He even lets us brush his front teeth now.   And enjoys it!

A few months ago I started seriously trying to get Benja to feed himself.  He’s started eating small melt-away yogurt snacks that I push between his teeth and onto his tongue.   I’m hoping he can master picking these snacks up on his own but we haven’t gotten there yet.

We’ve also been slowly introducing him to the idea of feeding himself baby food with a spoon.

It has been slow going.  For months we’ve worked on this.

Last night, like I have a hundred times in the past, I put him in a highchair with a tiny bit of applesauce in a bowl in front of him.   I took a hold of his hand with the spoon in it.  Over and over again I dipped the spoon into the food and guided his hand to his mouth.  Then I let go.   And guess what?  HE KEPT GOING!   He fed himself the rest of that bowl and then I gave him some more and he fed himself that one too!

Look at him go!  PROGRESS!!!  So proud of our baby boy!!

IMG 4263 from sister haiti on Vimeo.


September 4, 2012

World CP Day!

Today, September 4, 2012 is the first ever World CP (Cerebral Palsy) day!

I have always had a soft spot in my heart for children, especially orphans, with cerebral palsy.   I remember the first time I spent time with an orphaned child with CP.   He was in Haiti and it was one of my first experiences in a developing country.  This sweet boy spent most of his time tied up.  He would be tied to the railings of stairs/porches or his feet would be hobbled so he couldn’t walk.  He was so desperate for attention he clung to whoever would show any interest in him.   I watched as visitors and volunteers spent hours loving on the cute, chubby babies but averted their eyes whenever they were in the same room with this little boy.  My heart broke for him.  Since that time I have found myself seeking out children with CP whenever I’m in orphanages or children’s homes.  Giving them extra love and cuddles that I know they are likely missing in their daily lives.

My precious son was diagnosed with CP after we brought him home from Africa.  He is only mildly affected, it causes weakness in his lower limbs.   He is now 2.5 years old and is learning to walk with braces and a walker.   While he is challenged with many special needs and medical conditions, he has made more progress in the past year than we would have ever dreamed possible.   He is a delightful, sweet and beautiful child.  We can’t imagine life without him.

There are many beautiful children with cerebral palsy waiting for families all over the world.   AAI‘s Uganda program is advocating for two children with CP on their waiting child list and we’ll have more children listed soon.   I’m know other agencies have children with CP on their waiting lists as well.   Reece’s Rainbow has a beautiful video of children with CP that they are advocating for.  Please consider providing a family to one of these precious children.

If you have any questions about what parenting a child with CP looks like, I’d love to talk to you and connect you with other families!

Happy World CP Day!!

Some of the many silly faces of our sweet Benja.  He loves to sit in his new big boy chair!



June 8, 2012

Look at him go!

We are watching miracles unfold here one after another! 
I can’t wait to get his walker – Benja’s going to take off!    

Benja Walking from sister haiti on Vimeo.