Tuesday, March 20, 2018

A response to Ruth Marcus and others like her for World Down syndrome Day 2018

I am writing this to Ruth Marcus of the Washington Post in response to her article "I would have aborted a fetus with Down syndrome. Women need that right." from March 9th, 2018, but it could easily be directed to so many across the world who share her same opinions regarding people with Down syndrome.


I have written and rewritten this post in my head a hundred times over the last week or so. I could go on and on about prenatal testing or abortion. I could argue so many points in the article, and unfortunately there are a few that I cant argue with. But none of those things would accomplish my goal in writing this. I guess the best thing I can say is

Ruth, you just don't get it.

Bless your heart. 

In a feeble attempt to change that fact, allow me to tell you a little bit about my son Zee.

I was not given the option to abort Zee, because I am not his birth mother. When I met Zee, he was 7 months old in a Intensive Care Unit at a local hospital. A ventilator was helping him breathe. He had a tube in his airway to keep it from collapsing.  He was connected to multiple other machines to give him oxygen and monitor his heart. He was being fed through a tube in his stomach and given countless medicines to keep him alive.

I was a brand new foster parent and I knew not one thing about his care. I was a single mom and I already had two biological children as well as a 1 year old son I adopted at birth who also happens to be blessed with an extra chromosome. I had every single reason in the world to say no. 

But I knew something deep down in my soul that day. I knew without a doubt that if I said no, he would surely die.

You see, I was the last ditch effort for him. Without my yes, he may have never gotten well enough to leave the hospital, and if he had he would have been sent to a nursing home. I knew he was my son when I first laid eyes on him and I have never regretted going to that hospital and giving this sweet boy a chance.

And to quote your article, he was "not the child I wanted".

I never once dreamed of bringing home a child who was ventilator dependent. I never hoped that our living room would be turned into a virtual ICU for months on end. I never "wanted" to have to go through 6 weeks of training with my mom to learn how to care for a medically fragile child.

He was not the child I wanted.....until I met him.

And then he changed my world for the better.

You see Ruth, a perfect child with no scars and no prenatal diagnosis could have never taught me about a love like this.

Every time I feel his heart beat I am thankful, because I was there both times that it stopped and he had to have CPR to be brought back.

Every sound he manages over his trach fills my heart up because for so long he could make no sound at all.

Every time he scoots across my floor I smile with pride because I know that for almost 2 years he couldn't sit up much less crawl.

Every time he wraps his tiny arms around my neck and hugs me I remember the time, not so long ago, when he didn't even know how to be held because it had never happened to him before. It was like holding a rolled up rug instead of a child. He just didn't know what to do with love.

Every time he plays with a toy or laughs at a song I think of the time when he was in the hospital and all he could do to entertain himself was stare at the back of his own hand.

Yes, "Down syndrome is life altering for the entire family"....just as you said.

You just don't understand. It is life altering in a good way.
Those of us who love a person with special needs don't think about their IQ's or their future financial security. We are just so very thankful for the beautiful lessons that they teach us every day. We are thankful that they are different because that is what makes them special. They teach us things about ourselves that we could have never learned any other way. They cause us to be more kind and more compassionate. They give us new eyes so to speak to see the overlooked, the vulnerable, the alone and to reach out to them.

And if given the choice to live in your perfect cookie cutter world with the kids and the life you wanted and your "good company" of friends who agree with you, I would choose my hot mess of a life every single time. I don't want to live in your world where everyone has the same abilities and the same IQ and the same chance and financial stability and independent living because that is not a real world. You simply can't abort everyone who doesn't fit the mold that you created.

Loving those who are different than us makes us better people.

I just wish I knew how to make you see that.

Friday, August 4, 2017

Elynn's Celebration of Life

Did you find one of the balloons from Elynn's memorial service?

Please comment here and let us know where you found it!

I just can't say enough thank yous to all of the people who helped to make Elynn's service perfect.

To God be all the glory!

Thursday, July 6, 2017

A tribute to Elynn by Gary Clark

Did you find one of the balloons from Elynn's memorial service?

Please comment here and let us know where you found it!

A personal note from Gary Clark

{my sweet dad emailed this to all of his clients and it is just too sweet to not share}

Financial planning and investment management are important. Work is important. Providing for your family…. very important. But we need to check up on a regular basis to make sure we are not neglecting some very important things that money can’t buy.

A little more than ten years ago our daughter, Jenny was pregnant with her second child and going through a divorce. So, we agreed to move in together to share expenses and so that my wife, Emily could help with the children. About four years ago Jenny, along with a commitment from Emily, me and the two children, began her ministry of serving special needs children, including those with significant health challenges. I now have two grandchildren who are natural-born and two who are adopted. The two adopted ones have Down Syndrome. JoJo is quite healthy but the other one, not so much…two heart surgeries along with a lung disease are the major challenges for Zee. Zee spent most of his first year of life in the hospital. His future was dim until Jenny brought him home, along with lots of medical equipment.

Jenny, along with Emily’s help, has taken loving care of quite a few foster children for various periods of time. About a year ago Jenny agreed to take responsibility for the care of a two-year-old baby with Downs and with very fragile health. Elynn's heart and lung condition was severe, his needs were many and his life expectancy was short. He didn't have much hope for having a family or even for having a good place to live. Jenny brought him home and, along with the help of Emily, gave him a family, a good place to live, good medical care and all the love and affirmation with which any any son could be blessed. He   spent a lot of time in the hospital, including two heart surgeries as well as other surgeries and procedures. He never gained the strength to walk—in fact, he never even crawled. He moved around by rolling and by scooching. However, he didn’t go far because he was attached to oxygen. He never took any food or liquids by mouth. No ice cream, no candy, not even a bottle. Anything swallowed went into his lungs due to a deformity that apparently couldn’t be fixed. Of course, he took food though a tube directly into his stomach. He suffered a lot of pain and discomfort. He struggled to breath.

Thursday morning, June 29, Elynn’s frail little body finally gave out. He went to be with our Lord Jesus….

Jesus wiped every tear from his eyes.
No more pain, no more discomfort.
He doesn’t need extra oxygen, he can breathe just fine now.
No more trips to the hospital.
No more surgeries or procedures.
He can now laugh normally without having to take a breath between every “ha”.

I was influenced by Elynn. Even though he was very weak physically, he was mentally strong. When he felt relatively well, he would be smiling, happy and playing as best he could. He was very liberal with throwing kisses to anyone who would give him some attention. What he wanted most was expressions of our love…hugs and kisses. When he felt neglected, he would sometimes be quite vocal about it but all we had to do was to pick him up or lie down beside him on the floor—just look at him and talk to him and be close enough for him to touch us.

In human terms, Elynn got a very bad deal in life--but he didn’t do much whining. I often wondered why he didn’t cry more, especially when I would notice a grimace from some internal pain. I have had a very good deal in life but I have spent too much time whining, complaining and feeling sorry for myself. I think I will be a better person due to the influence of my foster-grandson Elynn. His first word that I remember was, Papa. I like that.

Someone may say, “he is only a foster child”. But, he is family…I can assure you that we love him accordingly.

To everyone who is still reading, I want to thank you for caring. Please show your concern for someone who is less fortunate than you—especially children--especially family. I can assure you that no one wants be alone when death is imminent. Too many times, I have made up an excuses for attending a funeral...I'll bet you have too. Our conditions are terminal too--it's just a matter of time. They need to be remembered and we need to be reminded. 

Love must be sincere.
Be devoted to one another in brotherly love.
Honor one another above yourselves.
Be joyful in hope, patient in affliction.
Share with God’s people who are in need.
Practice hospitality.
Rejoice with those who rejoice and mourn with those who mourn.
Do not be proud but be willing to associate with people of low position.
Romans 12

May God bless you richly,
Gary Clark

{memorial celebration will be held on Monday July 10th at 1pm at The Church at Brook Hills}

Thursday, May 11, 2017

The Story of Brighten Storie

Me, T (birth mom), Jessica and brand new Brighten

I have been trying to write this down since September, but haven't quite been able to find the words.

Now that Mother's Day is upon us again, the time seems right to tell this awesome God orchestrated story.....at least my side of it.

Last Summer I was contacted by Jojo's birth mother. She was expecting a baby and she didn't feel like she was in a good place to parent this child. Jojo would have a full biological sibling very soon.

I can't quite express the range of emotions that I went through when I heard that news! If I'm being totally honest, I actually toyed with the idea of adopting the new baby although I was not prepared to "start over" again so to speak. But gracious this would be Jojo's SIBLING.

I prayed a lot and God made the answer crystal clear. Biology doesn't make family, love does.

With so many families waiting to adopt a baby, I knew helping Jojo's mom find the perfect family for his sister was the right thing to do.

I thought this part would be easy. I attend a really big church and I feel like the families who don't have adoption as part of their story are in the minority! I truly thought that I would toss the info out there to a handful of people and BAM the obvious perfect family that had been right under my nose the whole time would appear. But God....

The baby was due in September....and it was August! So I was tasked with finding a Christ following family that was already paperwork ready to adopt, who lived near me (so Jojo and baby could know each other as they grow up), who was willing and able to up and go to Texas when it was baby time AND stay there for at least 2 weeks. And that was all the easy stuff. It also had to be a family who was wiling to "roll with" the craziness of this particular adoption situation.

Most adoptions take place through an agency and those are the people who walk you through all the paperwork, all the uncertainties, travel plans...everything. Well we didn't have time for all that, plus it would make the adoption significantly more expensive for the family that God chose to parent this baby. So it had to be a family who could find a way to TRUST GOD big time, and in a way to trust me as well.

And of course, God provided just that.

I had a handful of God fearing women who walked with me through these weeks, and I will be forever grateful to them. Because of them, I found my way to Jason and Jessica. We spoke on the phone about the craziness of the situation and they didn't seem too terrified, so we decided to meet for dinner a few days later. I knew after talking to them for a short time over Thai food that they were the ones. And the rest is history {which Brighten's mom has documented beautifully with tons of pictures in the posts below! When she refers to"C" that is me ;-)}

Brighten's Storie: Part One
Brighten's Storie: Part Two
Brighten's Storie: Part Three
Brighten's Storie: Part Four

So, this Mother's Day I feel compelled to tell our birth mom again how much we appreciate her. I can't imagine life without Jojo, and I can't imagine not being Brighten's "Auntie Grandma". You made the most selfless sacrifice not once, but twice, and we are forever changed because of your choice.

This is the letter I wrote to "T" three years ago for Mother's Day:

Dear Birth Mom: Happy Mother's Day

I just love the way God knits families together don't you?

Brighten on left. Jojo on right.

Brighten and Jojo meet.
Me, T and Jojo


Tuesday, March 14, 2017

Beauty from Ashes- A review of "The Lucky Few" by Heather Avis

In her first book “The Lucky Few”, Heather Avis takes us along on her journey through infertility, adoption and the unexpected gift of having not one but two children with designer chromosomes.
I consider Heather a friend, although we have never met in real life. The Down syndrome community is just awesome that way. So when I was given the opportunity to read her new book before its release I was elated and honored. I expected a book about Down syndrome, but what I read was so much more.

This book takes us on the bumpy but beautiful road that ultimately leads Heather and her husband Josh to the adoption of their seriously gorgeous children Macyn, Truly and August.
I was surprised to find in the first few chapters that this book really reads like a work of fiction, in a “I can’t wait to see what is going to happen next” kind of way. The way that God knit this family together is so crazy, but in a God crazy kind of way, that makes it a page turner from the Introduction to the Acknowledgements. 

This story is not just about Down syndrome any more than it is just about the very real struggle of infertility or the seriously risky business of adoption. It is about a woman who, like me, knew she always wanted to be a mom, and a great big God who she chose to trust, sometimes through tears and gritted teeth, every step of the way.

Change the names, add a few kids, take away the supportive and handsome husband and mix in foster care and this is my story. But the amazing thing about this book? It will become your story too. Because we all have those beauty from the ashes times in our lives. Yes, they all look different, but the end result is the same. If we choose to trust our God (who’s plans are often different than ours, but ALWAYS better) then we can all find ourselves in some of the most beautiful and hard places, where His light can truly shine. This is the place where He will be glorified and we will be blessed in the most unimaginable ways. 

“The Lucky Few” will be released on March 21st, World Down syndrome Day. Please visit theluckyfewbook.com to read Chapter 1 today! You can also pre-order the book and get access to other fun goodies. Also, be sure to follow @macymakesmyday on Instagram to meet the beautiful family whose journey created this amazing story.

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 do...in his own time.



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.