I hope you all are well, wherever in the world you are! Here at In Step Children’s Home, we are doing well! The kids are home from school for half-term break so keeping them busy is a challenge, but it’s nice to have them around. The rains are letting up, only light showers most days, with heavy downpours once or twice per week. We have had quite a few cases of malaria lately, which is not unusual. Mostly, everything is going on as always, which is good!
I had a few fun topics I wanted to tell you about, but my heart is heavy and my mind is exhausted, so I think I will dedicate this update to filling you in about our sweet baby Susie, who went to be with Jesus a few days ago. A few of you have had the pleasure of knowing her personally… I wish you all had… she was amazingly inspiring and always smiling… even while chronically ill.
Susie joined our In Step Family in February of this year. It feels like she has been here longer… I guess because she just stole our hearts from day one! It’s hard to remember Stepping Stones (our center for kids living with disabilities) before Susie was there! It’s weird how that can happen! Someone enters your life and it just seems like they’ve always been there.
Susie turned 2 years old a few weeks ago. She was very small for her age, partly because she had Cerebral Palsy and partly because she got such a rough start in life. When she joined us, she was extremely malnourished, very stiff-muscled, suffering from bronchial pneumonia and in desperate need of a good bath!
Providing baths, nutritious food and occupational therapy for the stiffness, were the easy parts. The bronchial pneumonia, on the other hand, proved to be an ongoing challenge for the entire time she was with us.
Beth Ann, our missionary manager of the Stepping Stones Center, along with Sheila, our occupational therapist and Nurse Abby, worked hard to get Susie healthy! Almost daily, they would put their heads together about how to make Susie more comfortable. One day, as Beth and I were grocery shopping, she got the idea of buying Susie a baby walker, thinking that if she could sit up straight, maybe she could breathe better. We searched all over Kitale Town until we found one. This greatly improved Susie’s day to day life, as she could be upright, seeing what was happening around her and being able to take in air with less effort. Cerebral Palsy prevented Susie from being able to sit on her own, but Beth stuffed blankets down around her for support. I think that was Susie’s favorite place to be… sitting up in her walker, smiling at anyone and everyone who happened by!
Although Nurse Abby was able to administer nebulizer treatments and even oxygen therapy when necessary, every three or four weeks Susie ended up admitted in the hospital with chronic bronchial pneumonia and dangerously low oxygen levels. Our amazing social workers and aunties took turns staying with her in hospital, until she could return home.
Many of you will remember that a few months ago, our eight-year-old boy, Wayne, was hospitalized for an emergency appendectomy. It just so happened that, at the same time, Susie was going through one of her bouts of pneumonia. The two of them shared a hospital room and formed a super tight, brother/sister bond. After being discharged, Susie returned to Stepping Stones and Wayne returned to the boys dorm… but almost every day, Wayne would venture up to the Stepping Stones Center to say hi to Susie! He would talk to her, sing to her, hold her hand… such a sweet bond! Please pray for Wayne. I’ve talked to him a few times about Susie now being in heaven, whole and pain free. He just smiles and says, “I know.” I’ll keep checking in with him as the days go by.
During Susie’s hospital stays, the doctors continued to run various tests, including echo-cardiograms, blood work, ultrasounds, X-rays… same old story, time after time! No answers! Why does this baby continue to suffer from bronchial pneumonia? After three or four days in the hospital, Susie would stabilize and be discharged, then the whole stupid cycle would start all over again!
After her most recent hospital stay a few weeks ago, we decided to let her recover and get her strength back and then take her to Eldoret, a town a few hours away, for a second (and third and fourth) opinion. The ear, nose and throat specialist (ENT) ordered a scan which showed that Susie’s adenoids were oversized and completely blocking her ability to breathe through her nose. He felt that this was the primary reason that Susie continued to struggle breathing and consequently developed pneumonia. We were so very encouraged that maybe, just maybe, this was the answer!
Two more trips to Eldoret to conduct lab work, including Covid testing, were done in preparation for the upcoming adenoidectomy. Susie sailed through the travel and the tests with flying colors! The surgery was scheduled for Thursday, then bumped up to Wednesday… they didn’t tell us the reason for the schedule change, but we made sure that Susie was there on Tuesday, admitted to ward and ready for surgery the next day. Everything seemed to be on track! We were hopeful that Susie would finally get the help she needed and would come home a healthy girl!
Tuesday evening, things took a turn. As had happened so many times before, Susie began struggling to breathe and her oxygen levels took a dive. Her temperature spiked within minutes! With this new development, there was no way that surgery would take place the next morning. Uggghhh!
Our Head Social Worker, Miriam, was staying in the hospital with Susie and was keeping us informed as to what was going on. We had seen this many times before! A few days of oxygen and antibiotics should do the trick! But this time, it didn’t. Despite the oxygen therapy, Susie’s levels continued to drop. Despite the antibiotics and fever reducing medicines, Susie’s temperature continued to rise. She became unresponsive and limp, eventually falling unconscious and breathing her last breath.
(I know this story is getting long. Please bear with me as I process all that has happened, by typing it out for you.)
The next day, Thursday, August 26th, a team of us traveled to Eldoret to collect the body of our beautiful baby Susie. As was expected, the exercise took the entire day. Clear the hospital bill. Purchase a casket. Request an autopsy. Wait for the autopsy. Collect the body. Drive home.
In Kenya, it is required that family members or other credible witnesses are present during the autopsy. Nurse Abby and myself were those people. I have endured this process a few times before, when we have tragically lost children, but it never gets easier. I won’t go into my thoughts and emotions that took place as I witnessed the procedure of determining the cause of death. Suffice it to say that the process was proof that our Susie was no longer on this earth, but was safely in the arms of Jesus.
Also attending the autopsy were eleven medical students. The doctor conducting the procedure asked them a multitude of questions, while showing them the condition of Susie’s heart, lungs, kidneys, and brain. I prayed for each of these young people… the future of Kenya’s medical field. I prayed that Susie’s life would not be in vain, but that these upcoming Kenyan doctors would be able to learn from her suffering, to save other kids with similar problems in the future.
Cause of death: chronic bronchial pneumonia and long term damage to the lungs.
As we arrived back at In Step, everyone was waiting to welcome Susie home! The older girls took on the role usually filled by mamas; that of singing blessings unto the deceased and to those of us who remain. Songs about our faith in God and His perfect plan for our lives. Hugs. Tears. Prayers.
Finally, we laid her to rest. We are so blessed to have a beautiful cemetery at our home! Our children and staff sent her off with wonderful words of remembrance, especially reflecting on her infectious smile, which was present even when she could hardly breathe! Oh how she will be missed!
Most of our Stepping Stones kids don’t fully understand what is going on, but their hearts feel the loss. Please pray for them.
I am so thankful that God brought Susie to our family! He blessed us with the honor of loving her, caring for her and ultimately ushering her into his arms. Her biological family had not been able to help her. They surrendered her, in hopes of giving her a life full of health and happiness. Everyone here on earth did what we could, but God had other plans!
Thanks for letting me process my thoughts! I am forever grateful for you! Words cannot express our appreciation for your love, support, prayers, thoughts, etc.! God is good all the time… and all the time, God is good!