Thursday, May 26, 2016

the story of zee

I have written bits and pieces of his 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.

As many of you know, 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 none 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 that it is 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 that the child is from has determined that 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 state wide email. If there is still no foster family, then the kids with behavioral issues, the older kids, the large sibling groups etc typically go to a group home. The kids with medical/special needs go to a nursing home. Zee was a state wide email. I can say with confidence that 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 need and medical needs(Down syndrome. Fully ventilator dependent. Tracheostomy. Gastrostomy. Ventilator dependent. Chronic respiratory failure. AV Canal. Tetrology of Fallot. Pulmonary Hypertension, Developmental delay. Hypothyroidism. Polyspleenia), many of which neither of us could pronounce, I felt sheer terror. But when she asked me if I was 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 that 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", and 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.
June 24, 2014

There were 2 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 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 3 weeks after the day we met.
August 11, 2014
I truly thought he was going to die that day. I felt so helpless because I could obviously 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 that 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 manged 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 that my mom and I (they require two caregivers) had to go through 6 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 take care of the other 3 kids and helped us with meals, 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 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 that 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 that 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 O2, and slowly but surely his little body began to heal and he got stronger and stronger.

The rest of 2015 was really amazing. He was finally able to sit up on his own. Learned to eat food like a boss. 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 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 is 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".

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 again. He has been our Provider and Zee's Healer. I am so glad I gave God my "yes" that day. I am 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.

And now for the most important part of his story: all the moments you have missed.


Has Zee been his name all along?
No. That was his nickname from the beginning and it just stuck!

Will he always have the trach?
No. Not sure how long we will have it, but I am in no rush. He just needs to grow a little more so his airway can be larger and then we will get rid of it!

Why does he still have a gtube if he can eat and drink by mouth?
Good question. The best answer is because doctors are very hesitant to remove anything before they are 100% sure that they won't end up having to put it back in.

Will he ever be able to talk?
Yes! It will require a whole lot of work with our speech therapist, but I am confident it will happen someday.

Will he ever be all better?
Sort of. He will always have Down syndrome and his heart issues are something we will always have to follow. He will require additional surgeries as he grows. But I have confidence that will a lot of hard work he will walk, run, talk and do all the things that kids his own time.




  1. Gave me chills reading this!! <3

  2. Oh the happy tears are flowing!

  3. Couldn't stop reading. I am so happy that everything work out fine. A d now he is with the best family that he could finde. You are such a inspiration, a real angel. Hugs and kisses for your amazing family.😽 😚 😊 💕 😽