Loving Ezra

Tom and Marae Keller, West
Salem, Ohio

One never knows where God will take them when He calls them to parent, whether by birth or adoption.
              We have known the trials and joys of having biological children: Pregnancy loss, premature births, healthy delivery, illnesses, accomplishments, matching, placement, premature and/or medically fragile babies, healing, marriages, and most recently death.
            We were richly blessed in June of 2008 to bring home our two newest sons.  Boaz Andrew, born 3-22-2008, came to us through The Gladney Center in Texas.  In spite of having hypoplastic right heart, Boaz has done wonderfully well.  He is developing physically and is on-target developmentally.  We give praise to God for all He has done for Boaz and trust Him to guide the continuing care of Boaz.
              Ezra Kailash, born 3-24-2008, was premature at 29 weeks and weighed only 1 pound, 8 ounces.  Ezra was born in Cincinnati, Ohio and came to us through Adoption Link.  He was the third of his biological parents' children to present with  Intrauterine Growth Retardation.  We received Ezra knowing the eldest biological brother had suffered from a seizure disorder and started regressing developmentally around the age of six months.  Their first son died at fourteen months of age.   We also knew the bio parents had a living child who was diagnosed with Williams Syndrome.
                  The birth mother had never been able to heal from the first loss and had difficulty considering parenting Ezra.  She had questioned how I as a mother could consider parenting Ezra when I too knew the pain of burying my own flesh and blood. Thomas and I had buried our daughter Annah in 1999 due to complications from prematurity.  My response to her was that it did not matter that there were unanswered questions for Ezra or that we had no assurance as to the length of his life, Ezra needed to be loved whether his life was one more day or years on end. 

 It took me three long years to walk through the valley of Annah's death and yet I knew the Lord carried me and had used that experience for good.  Ezra was to be the eighth premature child whom Thomas and I would parent.  Loving Annah had taught us there are no guarantees as to the health, development or lifespan of our children or any child.  They are truly all God's and he has ordained every detail of their beings as well as the number of their days. 

It was with that peace from God that Ezra came home to us on June 23, 2008.  We were home for less than two weeks when the problems started to manifest.   I suspected reflux and aspiration.  A swallow study led to a g-tube and almost a month in Akron Children's Hospital.  This was the first of over 270 days inpatient.  The seizures manifested early in the appearance of Infantile Spasms and continuing with myoclonic jerks after he reached a year of age.  Medications were not fully effective in spite of trying various combinations of meds.  Ezra seemed to always be getting ill with either a virus or a bacterial infection in his blood.  We had to go to J-tube feeds due to dysmotility and continuing issues with reflux in spite of surgical intervention.  All the illnesses and the involvement of his eyes (CVI), neurological system, muscular system, and gastro-intestinal tract led the pediatrician to encourage us to look into mitochondrial disease.
             We ended up seeing Dr. Bruce Cohen at the Cleveland Clinic and eventually had muscle and liver biopsies taken to attempt to obtain a diagnosis.  The liver revealed Complexes I, II, III and IV.  Even now we are awaiting outstanding test results.  Although we were utilizing various nutrients and supplements in addition to prescribed medications, Ezra's body continued to struggle to grow and develop.  We finally got a mediport (having had broviacs short term in the past) with the hope of being able to treat at home.  We needed it - right away!
                   Our eldest son entered a courtship in May and became engaged in July.  July 28 found Ezra admitted again and he remained there through September 6.  The wedding was planned for September 19.  That gave me thirteen days to finish preparations at home for the wedding.  Was I ever grateful to God that He allowed us that respite with our little one home and amongst the family.  It does sadden me though to consider that Ezra was spending a great deal of time asleep as he was on IV vancomycin and multiple oral medications. 
                     Our dresses (for my five daughters and myself) were completed on schedule even with multiple trips to various doctors.  The wedding was beautiful.  Seth and Regina (nee Glick) had seriously considered all they wanted to take place as they truly wanted the focus to be on the Lord and His gracious gift of salvation.  Friends, Steve and Pam Clutter, had graciously offered to help with the little boys during the ceremony.  They did a wonderful job and Tom and I were able to focus on the marriage of our eldest.
                Ezra did not seem to feel well that day and he suffered the dislodging of his JG tube.  That meant I had to replace it with a standard G-tube and reduce his feeds to maintenance rate to hopefully avoid aspiration.  The attempt was futile as he suffered from aspiration and quickly developed pneumonia.  Tuesday morning brought the blessing of laughter and squeals of pleasure; however, this was quickly followed by coughing.  Ezra had only coughed rarely in his life.  We had come to learn that he had more than BPD from prematurity and his lungs were in a continual state of decline.  
                   Dr. Roach, our pediatrician, ordered a chest x-ray; however, the pneumonia did not reveal itself.  Wednesday morning was the replacement date for the J-G tube.  The day started bright and early as we were to be at ACH by 6:30 a.m.  I informed the staff that he was very ill and I had an order for a repeat x-ray.   The tube was replaced and the x-ray repeated.
                  Sweet little Ezra began laboring to breath in spite of the assistance of a portable oxygen tank.  My heart grieved sorely as I considered his days on this earth may be drawing to a close. 
The x-ray revealed pneumonia - right upper lobe collapse, involvement of right lower lobe, atelektosis of all lung areas.  We were taken form the Emergency Department to the Pediatric Intensive Care Unit where the consideration of a ventilator was broached.
                      Ezra never left the PICU, at least not in the physical body in which he entered it.  Shiloh, one of our 16 year old daughters who had accompanied me that morning, and I were soon joined by Tom and the other children, as well as my mother and various friends and family, and Ezra's pediatrician.  Some of these people had given Ezra respite care so I could go home on occasion and be with family. Ezra's birthparents and a sister arrived shortly after Ezra died.
                      Ezra's last earthly hours were not what I would have envisioned had I ever seriously contemplated the thought of his passing.    However, we were blessed that those close to home could be together.  The hospital PICU staff and Palliative Care team aided in making memories and having Ezra comfortable as he fought his last earthly battle.  We shared hymns which we pray ministered to his soul as they did ours.  We were able to hold our precious son and assure him that he would soon enter into the presence of the Lord.  I had always told him that God would heal him, either here or in eternity, so I assured him that he would be whole and complete and would know no more suffering.  He knew we were there and seemed to take comfort in the hugs and sounds of those around him.  It was hard letting him go and yet we knew the decision was the Lord's.  Ezra entered into his heavenly rest on September 23, 2009 at eleven o'five in the evening.  He would have been eighteen months on the twenty-fourth!
              Our eldest son's in-laws were at the hospital when Ezra died.  He immediately called a family member who graciously fashioned a casket for our little one.  We were blessed by the kindness of many as preparations were made for burial the next evening.
              Visitation was held in our home from 5-7p.m. with the funeral at the close.  Family and young people filled in the grave as a friend sang accapella a beautiful hymn "In the Sweet".  God graciously carried us through and blessed us, even now he is aiding us in our grief.
            We could not have predicted the road we would travel with Ezra back in June of 2008; however, we know it was all in the will of God that we obediently follow His commandments.  There were many struggles along the way.  We were stretched beyond our human comprehension.  We had to battle the enemy as he would plant well meaning people in our paths to give us advice which is not even worth repeating.  The advice reflected a godless society that feels we must look out for ourselves and not consider others. 
                 We found ways for the younger children to be with mom during the long stays in the hospital.  The little girls were familiar with hospital "slumber parties" and found out learning can continue even when daily life is altered.   The young men and ladies in the family coped as best they could and were stretched beyond the norm, thus developing strengths which they had not cultivated prior to having Ezra.
            Loving Ezra is a choice we shall never regret. He was a precious child who thrilled at the sight or sound of those who loved him.  He was a bright child who had a body which did not respond to his wishes. His struggle to move was intense but his determination was great.  He was a delightful child who had a wonderful belly laugh and chuckled with glee when he heard his father's bird-calls.  He was a wanted child.........he has been loved!
                Some would focus on the fact that Ezra was "special needs".  They are right to a degree, Ezra was dependent upon those who would love and care for him - he had needs.  However, the "special" is not a negative thing.  The special is that he loved with a heart of innocence and received all people as they were.  His legacy is good in the sight of the Lord.