We are fragile right now

“We are fragile right now.” This is what our nurse Anthony said to me yesterday.  It was at the end of a conversation about the baby Pearl, whom we lost last week (https://janinemaxwell.blogspot.com/2019/01/mom-she-isnt-breathing-saturdays-blog.html), and our toddler Morris, who was in hospital with seizures, fever and pain. We also were discussing the 12 other babies who were in the isolation room at the El Roi Baby home with fevers and diarrhea.   We’ve had a tough couple of weeks.

Yesterday we were called by Social Welfare to ask if we could take a 15-month-old boy who was severely malnourished, with dark yellow eyes and looked sick.  After several conversations it was agreed that the child would go to the hospital first, and then come to us once he was discharged. When I told that to Anthony he said, “That is a good plan. We are fragile right now”.  He is right.

As a nurse, Anthony is trained in life and death scenarios.  In fact, as we had many conversations about Pearl’s death, Cerebral Palsy (Morris’ condition), and other childhood illnesses with our medical team (including doctors and nurses), I found myself reminding everyone that medical professionals are trained in life saving, and end of life situations. 

Now think about our staff. 

We have the most incredible team of caregivers and I have the greatest love and respect for each and every one of them.  Each of them started with us either on nightshift or as a cleaner. This is how we are able to observe them, see if they are hard workers and see if they mop around a crying child or stop and pick them up.  We are looking for people who have integrity, are teachable and who love children.  But we don’t hire them with the expectation that they will have to hold a dying child or quickly try to get a fever down so that a massive seizure does not ensue. But that is what they do.

These are not trained nurses, but they have become a crack medical team knowing when to nebulize an asthmatic child, clean a wound and apply glue, or perform CPR in the back seat of a car to a child who is lifeless.  We have learned the difference between treating bacterial meningitis vs. streptococcal meningitis. We know IF and how long a child is contagious when they have tuberculosis and when to notify our Doctor when they see the signs of a child who is not responding to their HIV/AIDS medication.  All of this under knowledge has come under the tutelage of the incredible Dr. Moira Lemmer, and our remarkable nursing team (Hannah, Anthony, Rebekah and Brooke in the early years). I am eternally grateful for each and every one of them.

Some of our Aunties and Uncles are educated and some are not. Some finished High School, some finished Primary School and some do not read or write, but they are teachable and they love our children like they are their own.  They are the hands and feet and arms of Jesus, every day, and that love is reflected the faces of our children.  I would like to take this opportunity to thank them for going above and beyond the call of duty, every single day.

This week we are fragile, but we are not broken.  Morris is home from the hospital and we are focused on loving him and keeping him comfortable (it is evident that he has significantly more brain damage in the past few weeks with ongoing seizures and fevers).

Thank you all for your love, your emails of encouragement and your financial gifts to help us with our medical expenses.  It does take a large village to raise 217 children, and I love our village.

Live from eSwatini … praying for our care givers today.

Janine

"Mom, she isn’t breathing," – an update

This blog was originally posted on Thursday, January 10th.  Here is an update with the original blog below.

Morris' fever broke last night for the first time in 7 days, but all blood work shows a very very sick little boy.  Our Doctor says, "Morris is a very sick little boy, with no obvious cause, apart from the very
severe cerebral palsy. Probably brain damage contributing to all his systemic incapabilities".

Isabelle is without fever this morning, but still a very sickly baby, struggling for life.  We have 12 babies in isolation with fever and diarrhea, but most are on the road to recovery. Still 3 more children with fever due to ear infections and teething.  All sickness is at the El Roi baby home - we are thankful that all other homes have not been affected or infected. 

Our volunteers gathered with our Aunties and babies on Friday morning for a time of prayer, and it was wonderful.  I admit, I opened my eyes a few times to watch 27 little faces looking around at us from their highchair tables. They were quiet as church-mice for the 15 minutes of prayer, just looking around at the adults holding hands and crying out to El Rofi, the God who heals.  The Holy Spirit was palpable. 

Thank you all for your prayers, words of encouragement and financial gifts to help with Morris' mounting hospital bills. 

Original blog posted Thursday: 

On Monday morning at 7:10AM I was called about one of our babies who had been running a small fever through the night and the Supervisor wanted me to ask the nurse if they could start her on an antibiotic.  I contacted our nurse and we were in the process of sending a photo of the baby’s chart so that the nurse could see what the baby had recently been taking.  At 7:40AM I was called again, this time I was told that the baby had stopped breathing.

I jumped in Ian’s car (which handles our terrible roads better than mine) and met Margie at the baby home less than a minute later.  She jumped in the front seat with two Aunties in the back seat holding a lifeless baby.  The baby’s name was Pearl.

We all prayed over the child, crying out to the Lord over and over again to heal her in His mighty name. We prayed, and cried and one of them did CPR while I drove at a break-neck speed to the hospital in town, only to have her pronounced dead at 8:30AM.

What??  She was alive less than an hour before? 

Pearl was a sickly baby, struggling with fever and diarrhea from time to time and then every now and then she would puff up. We had her tested for every possibility from allergies, to renal problems. All tests came back negative.  And then she died.

The next morning, at around the same time of day, Margie called me and said that Morris was not doing well and needed to go to the hospital.

Morris as he was being admitted

Morris is a 2.5-year-old boy who has never sat, never walked and doesn’t hold his head up due to severe Cerebral Palsy.  He was born at 28 weeks and lived the first five months of his life in a rural clinic (left there by his 14-year-old mother who promised to return for him). Since he came to us we have struggled treating his fevers, pneumonia, choking and seizures. He is the happiest little boy, except when he is sick, and then he cries all the time.  We have had many “close calls” with this little guy, but in December we rushed him to the private hospital in town where he was admitted for two weeks. He returned home on December 28^th and eight days later, the day after we lost baby Pearl, we were rushing him back to the emergency room.

After Morris was admitted and they started suctioning mucus, it was time for me to leave (I don’t do mucus well).  We always have an Auntie stay at the hospital with our children 24/7 and so he was in good hands and I went off to run another errand – buy a coffin for Pearl.

I am not unfamiliar to the DUPS Funeral Home, and sadly knew where to go to register the baby’s death, where to choose the coffin (size #2), and what dark window to slide my money under to make payment.  I forgot to drop off her burial clothes, so I could only think of little Pearl lying wrapped in a hospital sheet until Margie took the clothes the next day.

Early this morning Denis picked up two of our baby home Supervisors (the ones who held Pearl as she died in their arms) and together they would go and get the tiny coffin and bring sweet Pearl home to be laid to rest in the Project Canaan Cemetery.

We notified Social Welfare and they came to the funeral with some very distant family members who were notified of the death.  It is common for Swazi’s to travel a great distance for a funeral, even if the relation is distant. It is also common for the family to want to see the baby in the coffin (which takes me by surprise every time) so Cynthia and I were asked to open the coffin for the family to see Pearl. 

They don’t embalm bodies here, so unscrewed the lid of the coffin to reveal sweet Pearl laying there peacefully, covered in condensation from being removed from the cold refrigerator and being brought out in to the deep heat of a Swazi summer day.  The lid was screwed back on, songs were sung, scripture read, and then the coffin was carried to the grave site that had been dug by hand minutes before the service began. 

As in Swazi tradition, a grass mat is placed down in the hole, two people jump down in to the hole and the coffin is passed down.  It is covered with a blanket and then men take turns shoveling dirt on to the coffin.  Every couple of feet of dirt, one of the men jump in to the hole in bare feet to stomp down the dirt so that it is well packed.  As the grave gets filled with dirt, the women collect rocks from the bush to surround the top of the grave and hold the piled-up dirt. 

Graveside

Shoveling dirt to cover the coffin.

Stomping the dirt to pack it down.

Our Aunties gathering rocks

When this was finished, we placed the flowers on the top of the grave, and a rock cross made on Project Canaan at the head of the grave.  Kind words were spoken, a prayer said, and it was finished.

Morris’ fever continues, his seizures are increasing in frequency and we continue to pray for health and healing, in this life.

I am not writing this blog today (rather than Saturday) for sympathy, but writing is how I process things. I just don’t know what else to do today. I don’t want to go and design beaded décor at Khutsala. I don’t want to go have fun with the big kids. I don’t want to drive to town again.  I am tired of crying. So, I thought I would write, and make sure Pearl is not forgotten, and that Morris is being prayed for.

I do appreciate your prayers and words of encouragement, and I also think it’s important to try to explain just some of what happens here on a daily basis.  There is so much that I can’t share publicly out of respect for my Swazi sisters and brothers, and because you simply wouldn’t believe most of it. Life is real, and it’s hard. Death is real, and it’s ugly. And we deal with both daily.  

Matthew 11:28-30 says, "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."

Thank you all for your love and support and your prayers for all of His children who are suffering around the world.  We are not discouraged, just sad.   We are not giving up or running away, we are just taking a time to mourn, and we know that there will be joy in the morning.

Live from my yellow chair in eSwatini … it is Thursday afternoon.

Janine

We all have special needs

This week I spent a lot of time watching the individual development of our children.  We continue to work on making this a children’s home, and not an orphanage, and that requires being intentional about individual care and development.

I cannot tell you the joy that I got from seeing that  in practice this week. I will share a bit about a few of our most challenged children.

Morris is 13-months old and is very developmentally delayed.  He was abandoned at a rural clinic by his teenage mother and lived there for 6-months with little to no touch, stimulation or love. He cannot hold up his head, and while first receiving a diagnosis of severe Cerebral Palsy, we are now not so certain about that diagnosis. Our Occupational Therapist (OT) was working with him this week and identified a slight spasticity in one arm, but otherwise his biggest challenge is not being able to hold his head up. BUT look at the photo below of him with the exercise ball. He LOVES doing his neck exercises and we are seeing a huge difference his stability already.   I love seeing the Aunties cheer him on to lift his head and everyone claps to encourage him. 

Barry is also 13-months old and is developmentally that of a 5-month-old.  When I first saw him I thought he was blind because of how detached he seemed to be from his surroundings.  His mother was very neglectful and would leave him for days a time by himself, just lying on the floor. He had more abuse and neglect than love and positive human touch.  This week our OT noted that he is responsive to toys, music and TV, but not responsive to the human voice or touch.  We are beginning his daily therapy, which will include a lot of touch, massage and love.  I can’t wait to see this little guy in the months ahead.

Barry working on some exercises to help him sit.

Jonathan is 26-months old and still can’t stand.  He is cognitively smart, has quite the “attitude” when he doesn't get his own way, but loves to play.  Also, this little boy LOVES meat!  When we bring him a meal that doesn’t not include meat he gets angry. So, of course I said, “Let the boy eat meat!”.  You may recall that he only weighed 13 pounds when he came to us at the age of 2-years, but now he is almost 20-pounds!  Go Jonathan go!

Jonathan being assessed by our OT

 Princess is 3+ years old and is still not walking, but she sure wants to. She was off to a bad start with severe malnutrition, TB and related diseases.  Now we are working to put muscle on her tiny legs and challenging her to get her hands working so that she can put square pegs in square holes, and round pegs in round holes.  She works SO hard on her exercises and we are encouraged each and every day.

Princess working hard with her hands.

For the rest of our children we focus on individual childhood development plans. This week during school break the children worked on motor skills development, which included everything from paint-by-number to visiting the Kufundza center to hammer nails into wood, turn screws in to wood and even get to pull down on a drill press to make holes in wood.

Jacob and Allen teaching the kids to hammer and screw.

Gabriel doing paint-by-number

I am so thankful for an amazing team of people who are so commitment to each and every child.   Yesterday I was on a long drive to pick up out newest baby (#163) and our volunteer Program Director, Bryan Throgmorton, came along.   We had fun talking about so many of the things we love about so many children:

·      How Paul loves to say “thank you” for random things that he appreciates.

·      How Titus will tell me that he likes my hair.

·      How sweet Moses is when he runs over and gives a big hug.

·      How funny Caleb is when he gets his dance grooves on.

·      How sweet and happy Phephile is now, when 2-years ago she arrived with a broken femur, tibia and as a very angry and hurt child.

Our newest baby whom we are calling Bryan.  He is 8-months old.

Each and every child has a special need, just like each of us has a special need.   While we cannot  know about or provide for all of them, but I can rest in the knowledge that their heavenly Father knows them all and sees it all, and HE is our provider.

This full rainbow appeared last week and went from the Emseni chilren's campus to Dam #2.

Live from Swaziland … my heart is filled with joy.

Janine

PS – no updates on the break-ins. Nothing at all.