by Jenny Clark
Jojo and Zee are my “twins,” not by birth (obviously) but by the great gift of adoption. They both have Down syndrome and are only seven months apart, but their adoption stories are quite different.
I adopted Jojo at birth in the summer of 2013 with the help of the National Down Syndrome Adoption Network. When Jojo was about a year old, I felt the Lord calling me to become a foster parent. I wondered what would happen if a child with special needs came into foster care, and I wanted to be able to help so I got licensed.
The day after I got my license, I got a call about a very medically fragile little boy, Zee, who happened to have Down syndrome. As the social worker read off his LONG list of medical needs, (fully ventilator dependent, tracheostomy, gastrostomy, ventilator dependent, chronic respiratory failure, AV canal defect, Tetrology of Fallot, pulmonary hypertension, developmental delay, hypothyroidism, polysplenia), I was admittedly scared to death.
However, I knew this was specifically what I signed up for, although I wasn't expecting it to look like this or happen so fast. I suggested that I go to the hospital and meet him, pray a whole lot, and we would go from there.
There were two social workers, a couple of nurses and a doctor in the little hospital room on the day we met. We talked over his case and his extensive medical needs. The plan at the time was to wean him off the ventilator and he would come home with just the trach and gtube. He would need surgery eventually, but right now he just needed someone to come to the hospital to hold him and bond with him. I said yes to that plan. Of course, like most plans, things turned out quite differently.
I could tell pretty quickly from visiting him that weaning off the vent wasn't going so well. It seemed that very little changed each time I saw him, until the day everything changed. I got a call from the hospital saying Zee had coded, and I needed to come right away. That was less than three weeks after the day we met.
I truly thought he was going to die that day. I felt so helpless because I could do nothing for him. He managed to pull through and had his first heart surgery a few weeks later. They did a repair that would basically “hold him off” until he was big enough and strong enough to have his open heart surgery.
By the grace of God alone he was doing well enough by the end of September that they were ready to send him home. However, he was still on the ventilator and it didn't look like he would be coming off it any time soon. My mom and I went through six weeks of training to learn all about caring for a child on a ventilator/trach. We managed to complete the training with the help of our village and on November 24, 2014, Zee came home. He was 10 months old.
To be honest, the months that followed are a bit of a blur. I was so happy to have him home, but his care was exhausting. The amount of supplies, the medications, the machines and the potential for emergencies were just overwhelming. Going anywhere was really hard and we had a lot of doctor appointments.
Zee had his first open heart surgery in June of 2015. The first surgery wasn't as successful as they had hoped, and he was still having complications so a second open heart surgery was necessary. We spent over a month in the hospital.
For a while after his open heart surgeries, his care was pretty complicated, but his little body began to heal and he got stronger and stronger. The progress he made in the months following his surgery was truly remarkable.
He continued to grow and heal so much so that he no longer required oxygen and only needed the ventilator at night. On May 10, 2016 a judge confirmed what I had known in my heart all along. He was mine. My son – Zee Emmanuel Clark.
The need is great
When I met Zee, my eyes were opened to the great need for families who are willing to take on kids who have special and or medical needs. I learned that many children are basically abandoned at the hospital because their parents are unable or unwilling to care for their often difficult needs. In many cases, these children stay at the hospital as long as possible, but if no family is found for them, they are sent to a nursing home. I am certain that this would have been Zee’s fate had I not said yes, and I truly doubt that he would have lived.
Often these children have ADD or are on the autism spectrum. Sometime the cases are more extreme, like Zee’s. There are not enough foster families here in Alabama for the typical kids who come in for foster care, so you can imagine how difficult it is to place the ones who need a little, or a lot, of extra care.
If you would like to know more about becoming a foster parent and serving special needs kids in your community, please contact your local county DHR. The need is great, and the job is not easy, but these kids are totally worth it.
Jenny Clark is mom to Aidan, Ella Mae, Jojo and Zee, plus an ever-changing number of foster kids. For more information about becoming a foster parent, visit www.jennymo.com. You can also learn more about children here in Alabama (many of whom have special needs) who are waiting for their adoptive families to find them at heartgalleryalabama.com.