‘I felt sheer terror. ‘Are you scared off yet?’ I knew if I met him, I wouldn’t say no. This is what I signed up for.’: Single mom adopts medically complex baby with Down syndrome, ‘I knew he was mine’

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Read Jenny’s previous story here.

“I have written bits and pieces of Zee’s story before, but because he was in foster care, I could never tell it all. Now that he is all mine, I want to tell the whole story.

Courtesy of Jenny Clark

Before I got the call about Jojo, I was taking classes to become a foster parent. About a year after Jojo was born, I began to feel God tugging at my heart to do the few things I had left to get licensed.

I remember one of the questions on the paperwork asked how many kids I would like to have. None. I wanted to have no more kids. BUT, I did want to be available just in case there was a child who came in to foster care who had Down Syndrome. I knew enough about foster care to know it’s hard to place the ‘typical’ kids, so I could only imagine how hard it might be to place a child with special needs.

I got licensed on a Friday. On Monday, my friend Amanda, from DHR, called me.

You may not realize this, but there is a process for kids who are difficult to place. Once the county the child is from has determined they do not have foster parents who are willing (or able) to take the child, they contact the surrounding counties. If there is still no one, they send out a statewide email. If there is still no foster family, then the kids with behavioral issues, the older kids, and the large sibling groups, typically go to a group home. The kids with medical/special needs go to a nursing home.

Zee was a statewide email. I can say with confidence, if I had not said yes, he would have ended up in a nursing home, and would likely not have lived.

As Amanda read Zee’s LONG list of special needs and medical needs — Down Syndrome, fully ventilator dependent, tracheostomy, gastrostomy, chronic respiratory failure, AV canal, Tetrology of Fallot, pulmonary hypertension, developmental delay, hypothyroidism, and Polyspleenia — many of which neither of us could pronounce, I felt sheer terror. But, when she asked me, ‘Are you scared off yet?,’ for some reason, I said no. This is specifically what I signed up for, although I wasn’t expecting it to look like this or happen so fast. I suggested I go to the hospital and meet him, pray a whole lot, and we would go from there.

My friend Lisa happened to be in town when I met Zee for the first time. She said, ‘You know if you meet him, you won’t be able to say no.’ I knew that was true.

I was terrified and calm at the same time, as I walked down the hall in the hospital to meet him.

Courtesy of Jenny Clark

June 24, 2014 — There were two social workers, a couple of nurses, and a doctor in the little room. I don’t think any of them expected me to say yes to him. I could tell they were all a little shocked when I picked him right up (after snapping a few pics, obviously) despite all the wires and machines he was attached to. We talked over his case and his medical needs. The plan at the time, was they would wean him off the ventilator, and he would come home with just the trach and g-tube. He would eventually need surgery, 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, weaning off the vent wasn’t going so well. It seemed 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.

Courtesy of Jenny Clark

August 11, 2014 — I truly thought he was going to die that day. I felt so helpless because I could do nothing for him. The other problem was, although they knew he would come in to foster care upon his release from the hospital, he wasn’t in foster care yet. And, his birth mom was still around. That meant, when there were decisions to be made about his care, she was the one they talked to. Helpless is the only word to describe it.

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. This meant my mom and I (they require two caregivers) had to go through six weeks of training to learn all about caring for a child on a ventilator/trach.

We somehow managed to complete the training, with the help of our village who took care of the other three kids and helped us with meals, and on November 24, 2014, Zee came home. He was 10 months old.

Courtesy of Jenny Clark

To be honest, the months that followed are a bit of a blur. I was so 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.

In May of 2015, his cardiologists did a test to look at his heart and decided he was ready for his open heart surgery. Although I wanted (selfishly) to wait until after the summer, for the sake of Aidan and Ella Mae, we decided it was best to go ahead and get it done. He 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. In all, we spent over a month in the hospital.

When I think back on that time, it strikes me that I never thought about the fact, as a foster parent, I had no legal rights to this child at all. I put my life on hold for over a month, to be there for him every day and night. My ‘own kids’ summer was crap. All for a child who may not be forever mine one day. I am glad now, I was able to trust God and His sovereign plan for Zee during that time.

For about a month after his open heart surgeries, his care was pretty complicated. We had new meds that had to be delivered through a PIC line, in addition to all his other stuff. BUT, he was no longer dependent on oxygen, and slowly but surely, his little body began to heal and get stronger and stronger.

The rest of 2015 was really amazing. He was finally able to sit up on his own. He learned to eat food like a boss. He learned to drink from a straw cup. He was able to take breaks from the ventilator, eventually leading to him only needing it at night time. He was FINALLY able to be totally disconnected from machines during the day, meaning we could walk freely around the house with him (that was a really big deal), go outside, etc. He started to crawl in his own unique way! The progress he made in the months following his surgery were truly remarkable.

In early March of 2016, we went before a judge for TPR court. This is when the rights of the parents are terminated. Everything went smoothly (which is awesome because that’s rare) and TPR was granted! Then, we just had to wait out the appeal process and pray towards adoption day.

May 10th, 2016 was the big day. A judge confirmed what I had known in my heart all along. He was mine. My son. ‘Just as if he had been born to you.’

Courtesy of Jenny Clark
Courtesy of Jenny Clark

He got a new name that day: Zee Emmanuel Clark.

Emmanuel means ‘God with us.’ God has changed us all through Zee’s life. He has proven Himself faithful time and time again. He has been our provider and Zee’s healer. I’m so glad I gave God my ‘yes’ that day. I’m so glad I trusted Him through the hard times.

Zee’s life has taught me a great lesson. He had no one. Then, God sent me. Even when he wasn’t truly ‘mine,’ I was still there, loving him. Being his mom. It is the perfect picture of the gospel. God pursues us, even if we don’t want to be His. He is our Father, whether we claim Him as such or not. And, when we do become forever His and trust Him to lead us, He will never leave us or fail us.”

Courtesy of Jenny Clark
Courtesy of Jenny Clark

This story was submitted to Love What Matters by Jenny M. Clark. It originally appeared on her blog. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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