Me and Bea go to church

Finding a spiritual home for our African friends has been a journey in itself.
 In talking with Mama N and reviewing family photos it was revealed that Mama N is a Presbyterian and attended church regularly in Africa. Many vans pass through her apartment complex picking people up for church. She let them all pass and seemed to be waiting for the right place. I wrote to churches in her behalf. No one answered. I wrote to my friends asking for a Presbyterian church that we could visit. I got an answer from a very dear one. Julianne invited us to Decatur Presbyterian and off we went one Sunday morning in March.

We must have been quite a sight. A Jewish woman with her texting red-headed teen, Mama in full African dress with a baby tied on and Little E over my shoulder fighting to get a look at all that surrounded him.
The church bells rang as we exited my beat up old truck and the look Mama N had was faraway.
Her eyes glazed, mouth open........ memories flooding. This was the fabric that was going to hold her together. A place to feel prayer and hope for her family. Her disabled boy, the family she left behind, her beautiful baby girl could become part of a new world where she would find love and support.
Of course I was an emotional mess and Bea, well she took it all in.
It took about 5 minutes to realize that Little E and baby C were not going to sit quietly in the pews. We left Mama N with Julianne and schleped over to the childcare.
Thats another story in itself...........

Stand up Little E

Little E spends a lot of time on the floor. He cannot hold his body up and he desperately wants to interact with the world.
I remembered from my work that there is a place where they fix old rehab equipment called Friends of Disabled Children and Adults. I called and asked if I could get a stander, a walker, and an adapted bike.
These folks are not only providing an incredible service, but the warmth in which they provided me with support was another overwhelming emotional moment for me.
They called me to pick up a stander and waitlisted me for the rest of the stuff.

I loaded up the stander in my truck with the help of two charming gentleman, one in a chair himself.

Maria and I hoisted Little E into the stander and placed a desk with toys on top in front of him. Sheer delight and time for play. We could not stay long enough. He loved it. Thanks to Bea and Molly for keeping the little one busy so we could work with E.

Adding her own form of stimulation, winding up the children into a frenzy that only Bea could create!!!!

Puree is a French word

Feeding our children is something we all take for granted. They sip or bite and swallow without much thought. But when you have a neuromuscular disorder, chewing and biting are an issue. Teaching a feeding technique that provides nutrition to our little boy friend has become an important goal for us. One of my dear Sagamore friends gave me a Target card for our African family so I went straight away to buy a  blender.

Momma N understood quickly how to puree a can of Chef Boyardee and there were lots of happy sounds from Little E as we fed him the orange mess.

The best part was he swallowed every bit. The hardest part was we still have to hold his jaw and it takes a while to get it all in. Little E is happy to have the attention, but on a busy morning, I expect he only will get half fed.
Also,  I had my best buddy, Will outside playing with the rest of the gang so we were undisturbed.
Once the kids came flyin' in for water, Momma N and I were covered in orange puree.
Picked up lots of Pediasure to supplement the calories and he does seem to be growing.
Everyone is consistently laughing more, which must be a sign from heaven that these guys are gonna make it.

Will doin his thing

Gotta hand it to Will, he knows how to make fast friends. He brought all the boys baseball caps and taught them how to putt golfballs in the greasy parking lot. He was able to keep his eye on baby C and 3 year old L while simultaneously doing several sports lessons at once. He truly is one of my best friends. I admire him so much. I guess he became a multi tasker by trying to keep up with his parents and sisters who never sleep and are maniacs most of the time.






Will is a 13 year old artist, film maker, musician, great friend and a wonderful son. When you meet him, he will tell you being a teenage boy is not so easy. The world has a lot of expectations and pressures. But when I watched him leading these children with compassion and care, I knew he was building confidence in a way no one can teach.

Helpers

Bea has gathered some of her friends (Molly and Caroline) to join us on our visits to our African families' apartment. They are very compassionate and spend their time focused on teaching and playing with the kids. Caroline's brother sent over some sports clothing for the gaggle of 9 year old boys that act as interpreters for me at times. Molly promises candy to the boys and they always hold her to it.

Slippery

READ TO ME

Molly teaches English

I had a special friend join me today. She is a kind, loving compassionate young woman who would like to be a physical therapist. She is at GSU studying biology and I met her at the children's hospital during her observation time. She is a natural caregiver and shows true potential in her ability to pick up information quickly and use it to help others.

Use your muscles little bunny

You make us lugh

Today we played with E and gave him some exercise time. We were able to show mom how to play with E on a ball to improve his strength. We all laughed and E started hopping forward like a little rabbit. He is so adorable. Bea played with little C on the couch until someone poured a coke on some other kids head. Thats when I sent all the big kids to play outside so we could get something done.

Lets play with Bea's old toys

Outside

No car seat and a mouthful of meat

When you work with refugee families , you set the bar at a different level. Not necessarily higher or lower. Just different. I would like to advocate for E's (will call little boy this name to protect his privacy) medical needs but because of HIPAA and other privacy acts, I am having a tough time finding out what doctors he actually sees. I did find out the name of his Pediatrician and obtained a release of information to take to his mom which she signed for me.
When I arrived at her apartment she was walking out the door carrying E with little C (his sister) running after her. He saw me and produced a giant grin allowing a huge bolus of meat to fall out of his mouth. So here is where I am trying to help. Now this may seem gross to you, but when you work with kids with neuromuscular impairments you learn that many have difficulty eating, which is the case with E. He holds onto food sometimes not able to completely chew it. He needs speech therapy and has had some test which showed that he indeed needs therapy but I do not know if he is getting it or who the therapist is. I alerted the refugee agency of my concerns and will continue to try to help by teaching some of the feeding techniques I know from my work.
The other thing that worried me today was that they were all piling in a small car with a friend to go to the bank and there was only one car seat and 3 small children. Oy. I can only imagine the scene at the bank when E allowed more meat to come oozing out of his mouth like a noodle making machine.
So now I am on the hunt for the car seats that they need, the doctors or clinics he attends and any other information that will help keep this family healthy and out of the emergency room.

One problems is..........emergency rooms don't take too kindly to kids being carried around without car seats and wads of unswallowed food in your kids mouth. You get the gist.

Our Journey begins

Exercises

learning to love and read

This diary is titled for my girls who show great compassion to those in need. To fulfill our ongoing craving to give back to our world and give thanks for all the gifts we have, we have once again volunteered to be a family mentor for the International Rescue Committee.

I first met the family at the children's hospital where I saw a frightened mom with a baby tied on her back pushing a stroller.  The boy was beautiful and revealed his neuromuscular impairment when he tried to shake my hand.   His smile lit up the room and I was attached before I could take the next breath.

They were accompanied by an IRC worker who told me they recently came from a refugee camp in Cameroon. They live in Clarkston and the mom is here without family or significant other.

I spoke with my girls and they expressed interest in providing support to the family.

We met them at their apartment and started to connect immediately. We converse in my broken french and are using simple books to teach English.

The highlight is playing outside in the neighborhood where kids often join us while we set up games and make chalk pictures. I spend a bit of my time helping the little boy with his exercises and showing mom different techniques for feeding him.

I have visited several times more trying to piece together her story and how her little one became impaired.

Thank you for following us as this relationship blossoms. The visits are always bittersweet as there is plenty of laughter with Bea chasing kids around the parking lot. But knowing that they left everyone and everything behind, and under duress........ these are not happy thoughts

beautiful mom and baby