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.




FAQ's:

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 do...in his own time.

blessings,

jennymo


Wednesday, May 18, 2016

today foster care sucks

Sometimes foster care looks like a healthy cute baby with no medicines, no machines, no health issues or special needs. Just an adorable infant who needs temporary love and care. But that has never happened to me.

For me, today, foster care sucks.

Foster care in my house right now? It looks like a teenager who has so much anger and hurt that she is hell bent on hurting those who are closest to her.

It looks like a little girl who just wants to go home.

It looks like more medicines and medical supplies and gtube feeds and machines.

My room literally smells like either rancid poop or gtube leaky formula yuck all the time. And this poop? It is weird. It gets on stuff and won't come off. And the smell takes days to go away. Weird poop.

For my forever kids foster care today looks like knowing there is major drama in the house but not knowing exactly what is going on. It looks like sharing everything. Sharing mom. Sharing toys, food, rooms. Everything. It is hard for them today.

Foster care on social media? It usually looks happy and fine. Why? Because we don't really want you to know how hard and awful it is sometimes. Because then you will never want to do it. And we need you to do it. We need more foster parents. Desperately.

Yes today foster care sucks. But you know what? We will push through the hard. Why? Because God said so. And He is the boss of me.

Blessings,

jennymo

Friday, April 15, 2016

poop diapers and prom dresses

Three years ago today I got the call that would change the direction of my life.

Stephanie from the National Down syndrome Adoption Network called me to tell me I had been chosen by a birth mom. I am still blown away when I think back to that call. I was shocked. Excited. Scared. But God. He knew exactly what He was doing. He knew what His plan was way before He felt the need to inform me.

And He still does.

I find myself in such a strange place three little years later. A couple of weeks ago I got my first lesson on how to remove a weave. I have two 2 year olds. I have learned so much about caring for a medically fragile child that I am expecting my nursing degree to come in the mail anyday now. I have a crap ton of medical equipment in my house. I have 2 kids in elementary school, 1 in intermediate school and 1 in high school. I have 3 kids receiving early intervention therapies for special needs. Three in diapers. A Jojo who seems to be pre programmed to destroy all things he has access to. I just bought another car and it isn't for me. Zee's adoption will be final soon. Prom is happening tomorrow and it is a whole situation. Poop diapers. So many diapers.

I have fostered at least 10 kids in my home. Honestly I've sort of lost count. I have been able to use my voice to advocate for so many children who need permanent and temporary homes. I have talked to countless families who are considering adoption or foster care and have had the opportunity to inform and encourage them. God has done so much work on me and on my family and our faith in Him has grown.

Today I have 7 kids in my home ranging in age from 6 months to 18 years old.

This is what I have learned...so far:

God will most certainly give you more than you can handle.

But if you align yourself with Him and allow Him to work through you, He will do amazing things. Things that you could never do on your own. By trusting Him, you can do amazing gospel sized things that can impact so many people.

Who knows what the next three years will hold! My plan is to continue to trust Him to guide me as I point these kids towards Christ.

Because it is all for Him and His glory!

Blessings,

jennymo

Friday, December 18, 2015

2015: the ups and the downs

 

What a year it has been for our ever changing family!

We started the year off still working on getting our bearings with Baby Zee who had only been home for a few weeks. It was like we had a mini hospital in our living room, and looking back on it now it was quite overwhelming to say the least. But, as the days went on, we all got more and more settled in to our new normal.

But God.

Those words always crack me up....but they are always good!

In March we got a call about a little boy with CP who needed a home for a while. I know not the first thing about a child with CP, so this was quite the learning experience. "C" was a hot mess and quite a handful!

While "C" was with us we found out that Zee would be ready for his open heart surgery sooner than we had originally anticipated which was very good news, but also very difficult as many decisions had to be made. We knew that "C" would have to go back to his family as soon as possible with an extended hospital stay looming in our future. Luckily God worked it all out and he went back home with a couple of weeks to spare before Zee's surgery was scheudled.

And just like that Summer and open heart surgery was upon us. We went in to the hospital on June 23rd, and did not leave for a month. That was a really hard time. Due to complications Zee had to have not only 1 but 2 open heart surgeries. But God proved himself to be the Healer of Zees little body, and we were finally home at the end of July.

Zee is doing so well now! He is off the ventilator totally during the day and just has it as a back up at night. He is eating a drinking by mouth and getting stronger each day. Papa says he has a lot of catching up to do and he is surely working on it! I have not adopted him yet...but I will as soon as they let me!

Jojo is a hot mess. He started walking just before he turned 2 and now spends the majority of his days seeking out new ways to destroy our house. He still doesn't have many words but he communicates just fine!

Ella Mae fell in love with horses this year....more importantly she became a Christ follower at Rock the Block after hearing her brother share his testimony. She is such an amazing help with the babies!

Aidan continues to be a soccer super star but also loves to play football in the back yard and is really good at that too! He has a heart like no one I have ever known and I continue to be amazed by this sweet boy God gave me.

Papa & Emmy....well....if you know them, you should send them a note or a card or give them a hug. They have been absolute rock stars over these last few years and have supported me like I couldn't even have imagined on this crazy foster care ride.

Just in the second half of this year alone, we have welcomed "Miss V" (who is still with us), "Jake" (another boy with CP), "Bitty Baby" (who was only with us for 2 days) and now we have "Baby Jesus" (nicknamed because we picked him up at the live nativity).

So we currently have 6 kids in our home. This year has been nuts, but it has been richly blessed. I will leave you with some pictures....because what better way is there to tell a story!? 

Hoping that your family is richly blessed in 2016!

jennymo

Zee turned 1
We celebrated Papas 70th

Jojo and "C"

Ella Mae broke her arm and fell in love with horses
Zee's surgeries
Jojo walks!

Aidan sharing his baptism video and testimony at Rock the Block
Ella Mae became a Christ Follower!

Zee came home and Jojo turned 2!

Beach trip!

Ella Mae and "Miss V"

Aidan and "Jake"

Aidan and Ella Mae had their tonsils out

Zee is disconnected from his machines!
Bitty baby

Soccer star



Zee and "Baby Jesus"


Thursday, September 10, 2015

Sex, drugs and middle school...and heart palpitations.

Yall. I am freaking out.
Freak.Ing.Out.

My oldest child just started 5th grade. This will be his last year before the middle school and then high school years start. I am not ready. Not ready!

"You better have 'the talk' with him before he starts middle school"
"Trust me if they haven't heard it already they sure will in middle school"
"Middle school is when the kids start experimenting with the drugs and drinking"

These are the things I hear and I tell you they are keeping me up at night and giving me heart palpitations. I am not equipped for this. Puberty? Ummm...no. Not ready. Drugs? Sex? What?!?! No! My kids are sweet innocent babies. Just look at this picture of them sleeping! It is not time for this. It just can't be. No.

As I have been losing much sleep lately due to the debilitating fear of my kids growing up (xanax helps), I have started to develop some scenarios in my mind that could allow me to avoid the changes that are a comin'. I would love wisdom from those who have gone through this valley of the shadow of death (that's how it feels ok) before me:

Scenario #1: Exactly how much trouble would I get in to IF I just took my kids out of school after 5th grade and home schooled them? And by "home school" I mean just keep them at home and not do any of the school because I just can't. Seriously how long would it take for "the man" to realize I wasn't actually schooling my kids? And what would the jail time for that be? Like 3 months? Totally do-able if you ask me.

Scenario #2: How old do you have to be to go to trade school and can you take those classes on-line?

Scenario #3: Can we just skip all the "middle" grades and just start studying for the GED? I feel like there are online classes you can take for that like if you were in prison or something so I wouldn't have to teach them but maybe by the time the cops show up at my door they will have gotten their GED and I can be all like "haha too late".

Scenario #4: Work hard over the next year to have a law passed that would require all students from 6-12th grade to wear a body camera like the police do. Then if some little jerk tries to get my kid to try some crazy synthetic drug that looks just like candy I can pop up in that school like a spider monkey and handle it on the spot. 

As I have been going over all this in my mind, I begin to think to myself that maybe it won't really be that bad because I have really good kids. I do. People compliment them all the time on their manners and how sweet and kind they are and then the voice inside my heads gets all pitchy and starts to scream  "yeah that is what they will say when they get interviewed by Dateline because my kids have started a heroin factory or joined the mafia FOR THE LOVE!!!!"


Although I am leaning hard towards scenario #1 or #4 right now, I realize they are all flawed to some degree because no matter what I do, my kids are going to grow up. They are going to be faced with temptations and challenges and they are going to make mistakes. I just plain can't prevent that from happening. Dangit.

So what can I do?

-I can point them to Christ. Not a religion or a habit of simply going to church whenever the doors are opened, but a real relationship with the true and Living God. Real faith. A real love for Jesus and the Gospel. A desire to share that great Gospel with others.

-I can pray for God to guide and protect them....and trust that He will.

-I can try my best to SHOW them what it looks like to follow Jesus with my life. They are always watching.....be a good example.

-I can spend as much time as possible with them, as long as they will allow it. I will let them sleep in my bed (because I can) for as long as they want to....because they won't always want to. I will cherish these years and make the memories. I can be intentional about being their mom but also about making sure we have lots of fun.

These two sweet kids have my heart in a big way and some days I just love them so much it hurts. Some days I want to lock them in a closet .....but that is neither here nor there.

Some days I wonder why on earth God saw fit to entrust these people to me, but I am so grateful that He did. I know one day I will stand before Him and answer for how I raised them....and that is a pretty big deal to me.

Tiny baby Jesus help me to raise these kids in such a way that I do not end up in jail and none of us end up on Dateline....or please just let them never grow up. Amen.


Anyone else having heart palpitations?


jennymo

 

Tuesday, August 25, 2015

Want to de-fund Planned Parenthood? Get ready to become a foster parent.

I am literally typing this post on my phone while I sit at the hospital, so imma keep this one short and sweet.

Two things I don't get:

1. Why wasn't everyone all up in arms when we thought PP was just tossing these babies in the trash?
2. If abortions are not readily available then what do you think is going to happen to all those babies?

Let me be clear: I am pro-life. 110%.

What frustrates me is when the Church gets all bent out of shape about things that the world is bent out of shape about. Shouldn't we have been fighting this all along?

And let me tell you what will happen to those babies....IF they are born they will end up with families that don't want them and/or can't care for them. So guess what? They will end up in foster care. Maybe directly from the hospital or a few months or even years down the road.

So, find a Foster parent licensing class and start the process because we are gonna need you.

The church should be the solution not just part of the drama.

Thursday, August 13, 2015

Baby Zees surgery and the oh so bummer no Chuganooga summer

MY plan was to wait and schedule Zees surgery in August after my bigs had started back to school. We made a summer bucket list complete with big plans for us and a personal goal of having lots of very intentional time with my kids rather than just letting our summer together coast by.

But God. I love those words by the way, even when they jack up MY plans.

We went in for a heart cath in late May to prep for surgery in August. The doctors came away from that procedure confident that he was ready for his surgery ASAP. Not a rush by any means, but he was ready. I prayed over that news and agonized with the decision of what to do. Sometimes making these BIG decisions as a single mom really blows. Just FYI.

The more I thought about it the more I realized that there were just too many "what if's" in waiting on surgery. What if his recovery took longer than expected and he was still trying to get better when RSV season comes along? What if something unexpected happens between now and August and he is too sick then for the surgery? So many things to think about. Ultimately I listened to God and scheduled the surgery for June 24th (smack in the middle of summer), trusting that God would work everything out.

People said "How long do you think he will be in the hospital?". My guess was 2 weeks although I knew it could be longer. I had a spreadsheet for 2 weeks worth of fun play dates for my kids, people to keep Jojo, meals from an awesome small group at church....everything was all planned out. Two weeks.

Two weeks quickly became a month. One open heart surgery became two. Complications were abundant. The spread sheet ran out.

My bigs and I have tried to do a "just us" trip every summer before school starts back. This year I promised them that we would make it happen. We would go to Chatanooga (Ella Mae has always called it Chuganooga) because they love it there. We would stay at the Choo Choo, spend mornings at the pool(s), go to the aquarium, catch frogs in the evenings at the lily pond.....and just have 24/7 fun. But it didn't happen.

Zee not only came home still on the ventilator (which I had high hopes of leaving behind), but also with a PICC line for IV antibiotics and an injection that had to be given twice daily. There was literally no way I could leave him, and taking him with us would have defeated the whole purpose. 

People often have concerns about how adoption and/or foster care will affect a persons "own kids". I hate that term by the way. Well, this summer it affected mine. They were disappointed. I am disappointed and I feel guilty. Bad guilty.

But here is the bottom line: foster care, adoption, mission work, being a pastor, leading a small group, serving widows, being a voice for those who cannot speak for themselves....whatever it is you do for God requires sacrifice. It just does. And the same goes for my bigs because they are on this journey with me. And they are amazing and the lessons they have learned so far and will learn in the years to come will always greatly out weigh any guilt I feel or disappointment they feel. Because what God tells you to do is always the right thing to do. Always.

And now that I look back over some pics from our summer, I realize we did manage to have a lot of fun together, in spite of me living in a hospital away from them for a whole month. Because God is always right. Always.


Catching lightning bugs
Zip line obstacle course with the BFF's
Visiting Zee at the hospital and playing at the Children's Harbor, which turned out to be one of their most favorite things to do this summer

Ella Mae rode her very first horse at The Red Barn

Aidan got a ball signed at a Barons game




I got to spend a whole weekend with the bigs at a hotel near the hospital...we even ordered room service

We had backyard VBS at our house with 20+ kids every day who heard the Gospel
Aidan was able to share his own testimony.....
.....which led his sister (and maybe even others) to faith in Christ
We celebrated Jojo turning 2 and welcomed Zee home from the hospital

And spent lots of time with our BFF's

We ended the summer with hand cranked ice cream with Aidan's soccer team
So I guess when you look at the big picture, maybe it was not such a bummer summer after all.

Blessings,

jennymo