A single mom with a three year old daughter, having to flee an abusive husband, staying with a family from her church, no money, no bank account, no education, no job, how could a baby with Down Syndrome be a blessing?
One of the most influential people who the Lord brought into my life was my youth pastor, John. Born prematurely at a time when incubators where a fairly new development, he was born prematurely and given too much oxygen which caused the blood vessels in his eyes to proliferate wildly and the retinas to detach causing John as a newborn baby, to go completely blind. But the Lord used John, and his wife Laurie to impact my life in a huge way. He was my youth pastor for many years through Jr. High, High School, College and into my young adulthood. I was given the opportunity to observe this couple, raising their young children, enjoying life, inspiring others and glorifying the Lord in and through their circumstances. Their oldest daughter, Bethany, who I used to babysit with her brother Jeff over 30 years ago, now greeted me at the door of her home in the Central Valley of California. Not only time but also the trails and tribulations of life, had matured Bethany into the beautiful young woman who stood before me, hair still blond, with her sparkling, crystal blue eyes, I had come to hear her story.
Zachary- loved for who he is
We had worship music on, we were laughing and celebrating in the delivery room! I had two ladies from church there with me when Zach was born. But he wasn’t necessarily the baby I was expecting. He was quiet and small and kind of floppy but I didn’t think anything was wrong. He spent the night in my room, and I nuzzled and loved on him.
Then, the next morning, this hideous pediatrician came in and flopped him around like he was a rag doll and said, “I think your baby has Down Syndrome. I can’t be sure, we’re going to run some tests on him.” Then she walked out of the room. They came and took blood and then I was sent home with my baby!
That night, holding my newborn on my lap, I got on the internet, reading everything I could about Down Syndrome. I was picking him over, looking for all of the things that I found, “Yep, there’s the crease on his palm, yes, the bridge of his nose is kind of depressed, he has the extra fold on his eyelids, a big space between his big toe and the next toe, yep, he has all of the symptoms.”
I just thought, ‘Ok, now I just have to wait for the blood test results,’ and I went to bed.
Zach slept through the night immediately which seemed kind of strange. Then, on the fourth day, it was as though I heard the Lord with an audible voice saying, “Yes, he does have Down Syndrome and yes, you’re going to be ok.” That’s when I knew in my spirit, that my son had Down Syndrome. It took another 6 days for the test results to come back but I had such an unusual peace about it.
I had the Alpha-fetoprotein(AFP) test while pregnant, but it had come back negative (AFP is made in the part of the womb called the yolk sac and in the fetal liver, and some amount of AFP gets into the mother’s blood. In neural tube defects, like Spina Bifida, the skin of the fetus is not intact and so larger amounts of AFP is measured in the mother’s blood. In Down syndrome, the AFP is decreased in the mother’s blood, presumably because the yolk sac and fetus are smaller than usual). While I was pregnant, I don’t think I could have handled a diagnosis of Down Syndrome emotionally. It was during this time that my husband left me and I went into hiding. All of the prenatal tests had come back negative. They checked everything in the ultrasounds, the length of his femur, the neck folds which are usually thicker with kids with Down Syndrome, this child was perfect by all the tests.
I didn’t really go through the “Why is this happening to me?” phase, it was more like, “Ok, now what am I going to do? HOW am I going to do this?”
There was a grief process for me but the Lord seemed to take me through that quickly. I think it was because of all of the other things going on in my life. I had to move on. I had to let these dreams that I already had for my baby son die and then, be open to this new plan, whatever it looked like, even though it was uncertain, it was a different plan. It’s like that poem called, “Welcome to Holland.” It’s as though you are planning a trip to Italy, you plan everything out, pack your bags, get on the plane and then find out you’re not going to Italy, instead, the plane will be landing in Holland. It’s not that Holland is a bad place, it’s just that it’s not what you expected. It was just like that. (See video here: http://iamviable.org/1228/welcome-to-holland)
It’s ok to let that dream die and that’s what the Lord was showing me. By laying it to rest, it’s not failure, it’s not anything I did wrong, it wasn’t some bad hand that I was dealt, it was as though God was saying, “Look at the opportunities that await your son. And it’s even bigger than that original dream.”
I saw my dad do so many great things, he probably could have done even more! He recently tried golfing, he even tried snow skiing too! Seeing my dad function and embrace life, just living and not wallowing in self pity, it helps me to just know that this is a part of life.
My dad talks a lot about heaven, the beauty of heaven, the perfection of heaven, the glory of heaven. We were very heavenly minded growing up. These disabilities are just the result of not living in a perfect world, our bodies are not perfect, nothing is perfect. I never had the feeling, “This shouldn’t be happening to me!” My dad never said, “I shouldn’t be blind!” Having a father who is blind, teaches you that your focus has GOT to be on something other than the external.
I think that’s how our oldest daughter, Kendra has been affected by Zachary, she’s not a “click” kid, she’s not all about the brand names that you have like most Jr. High kids and I think Zach has kept her grounded in many ways, looking beyond what you have and into who you are.
Every developmental milestone with Zach has been a party in our house! Zach didn’t start speaking until he was about 4 years old. We signed everything and then the language just took off. He speaks really clearly now at 11. He’s pronouncing three syllable words, he’s doing multiplication, he’s doing so well in school. When he got to the two word stage, we just cried, “He’s putting words together!” Now, he’s rambling these big, long sentences!
The people that I was living with when Zach was born were familiar with people with disabilities. They helped me get involved with early intervention and Zach started in-home therapy at 2 months. By the time he started preschool, he had intervention for three years. He has been partially mainstreamed since first grade for 60% of the time. We’ve had both positive and negative experiences with that. I think the negative comes from ignorance. He’s had some kids saying, “Hey Zach! Do this or that!” and he does to get attention, then he gets in trouble! But I’ve also seen friends come along who rise up and become protectors of Zach.
When his school was involved in an oral presentation competition, his class wanted Zach to go with them. I got this permission slip from his teacher so I called her and asked what this was all about. She told me that Zach may not be able to participate but the class wanted him to go along. He sat with the teacher while the kids competed and they watched the kids together. He loved it! He got to be there and be a part of things and the other kids were happy too that Zach was able to come along.
He’s also on the wrestling team this year! He has won a couple of matches and tied one! Zach has a really good work ethic which has been good for the other kids to see. When he’s out there on the mat, you can’t tell that Zach is any different from the other kids. It’s been a very positive experience and he wants to do it again next year.
When Bethany met her new husband, Steve, she wasn’t ready for a relationship, she had just gotten out of an abusive marriage and they built more of a friendship. She had been hurt and wounded and was pretty much committed to remaining single after that.
Steven’s mom was a special ed teacher and he had grown up in a very loving and accepting environment. He had also worked with emotionally disturbed kids. Zachary took right to him while Kendra was a little more protective and suspicious.
Steven would come and take them all to the park or to the movies. It was really tough for Bethany to work through her insecurities and her own suspicious nature but Steve cared for her and knew that this was her response because of her past. She continued going through counseling and four years later, in April of 2007, they got married. Their daughter, Joycelyn was born in July of 2008.
Steven and Zachary do their guy things together, they love to play guitars, Zachary loves his music. They play together at least 2 ou 3 times a week. Steve remembers doing worship at the church when Zach was about 2 years old. He loved to worship, he would walk up and down the isles of the church, lifting his hands and worshiping. Bethany told the pastor that she didn’t want Zach to be a distraction but the pastor said, “Just let him worship.”
We’ve had to think about having a child with us for the rest of our lives. We don’t know how independent Zach will be in the future. We’ve had to kind of shift our own thinking, what our future will be like when our kids are grown. We believe he will always be with us and we think it will be a great thing! We’ve talked about going to Latvia, Steve used to live there. We’d like to teach. People with disabilities in that country are usually shipped off to institutions. We’ve prayed, “Lord, what an opportunity to bring this young man with Down Syndrome into that country as part of our family!” We could do some kind of sports program, petition the government for grants, you never know what God can do! Reaching out to people with disabilities will always be a part of our lives.
I have no fear for the future for Zach or concerns about where we are going or where we are headed because I have seen God’s faithfulness for so long, through my own parents and watching God providing, the pieces of the puzzle in my life come together, how out of my own rebellion, God actually brought me these two wonderful children and how God has positioned me with people who have helped me come to a place of wholeness spiritually, emotionally, and physically so that I could meet Steve and we could get married and make our family complete. Steve is in the process of adopting Zach and Kendra right now.
Zach has helped me see the heart of God and His love for people. Though we live in this imperfect world with disability and there is this beautiful person that lives on the inside of that disability. You look at children with Down Syndrome and they are the picture of love.
People say, “Oh, they are the most loving people!” But you know what? They are also the most stubborn people you’ll ever know and sometimes, they are cranky and stinky just like everyone else! But they are so incredibly loving. That’s what I see in Zach, the undying love and the purity of that love. He loves his baby sister and gives her the sweetest kisses! He loves Kendra and he is her number one fan. He goes to all of her track meets and soccer games. He yells and cheers. He gets the whole crowed riled up for her because he is her personal cheerleader!
Zach and I have a special song, “You are My Sunshine.” That’s always been our song. I’ve sung it to him since he was a tiny baby and now, he sings it with me, smiling the whole time (Bethany’s eyes welled up with tears and they trailed down her cheeks as she described the bond that exists between them). He is just the picture of love. He greets me with a smile every morning, he goes to bed with a smile every night. He has his little stinky moments but he is quick to get over them and he is quick to forgive.
The other day, some girl hit him in the head and kicked him at school! They called me and told me what had happened.
“Is Zach ok?” I asked.
“Yeah, he’s sitting right her smiling at me!” the school nurse told me.
“OK, tell him that I love him and we’ll talk about it when he gets home.”
The love he has is so immense. The moment he was born, there was that instant love. I fell in love with him the moment that I saw him, even though he wasn’t what I expected, I fell so in love with him. I think I was feeling so unlovable during that time in my life because when I was left by my ex-husband, I was so caught up in my circumstances. God’s love was there but I wasn’t allowing myself to receive it. When Zach was born, every day, there was this outpouring of love for me. It was God but it was coming to me through Zach.
Zach lives life to the fullest, he has so much to give. We live in a world that is so focused on perfection, everything doesn’t have to be perfect. It’s good to just be who you are. I hope that the rest of the world will see that through Zach.
I realize while watching Bethany talk about her son, seeing the love in her heart for this little boy rising up into her emotions and spilling out into tears, this is something that I see time and time again as I talk to mothers of children with special needs. It suddenly occurs to me that I don’t see it happen nearly as often with parents who have only typical kids.
Zach was born with two holes in his heart, high up in the same area. He didn’t need emergency intervention, the doctors just said they would watch it and see how it goes. At first, it didn’t look like they were going to close and we were thinking that they might have to do surgery but our church was laying hands on him and praying and praying that the holes would close and they closed spontaneously!
Steve and I have talked about, what if the Lord were to miraculously heal Zachary? I think everyone who has a child with a disability wonders about healing. I know that God could heal Zach, I believe that with my whole heart! But we have loved this child for 11 years just the way that he is, his personality, his characteristics, his quirkiness, all of his little mannerisms, the way that he loves, the way that he looks, the way that he moves, everything about him. This is who we love. If the Lord healed him, he wouldn’t be the same, he wouldn’t be this son anymore. He would be a different child.
If I were to talk to other parents who have received the diagnosis of Down Syndrome, I would tell them to get ready for the best ride of your life! It’s an amazing adventure. Nothing what I thought it would be but it’s very fulfilling and exciting. It’s not the doom and gloom that you’ve been told, don’t accept that! We were offered testing while we were pregnant with our youngest daughter but we refused. We really didn’t care! It wouldn’t have had the negative impact on us. I hope that people will see that if God is allowing this in your life, he will also get you through. The statistics are just mind boggling on how many babies are aborted with Down Syndrome. Down Syndrome is not a death sentence.
“10 Things People Should Know about My Brother Zachary”
by Zachary’s 14 year old sister, Kendra
- He is really good at sports. People don’t realize it, but he is great. This year he won two wrestling matches and he’s going to run track in the spring.
- He likes to cook. Even if there’s nothing in his bowl, he loves it. He stirs and pours and he likes to be mom and dad’s little assistant.
- He is like a little preacher. When he was little he would go on the playground at school and talk about Jesus. You couldn’t always understand it, but every now and then you’d hear ‘Jesus died for our sins’. I still hear him do it sometimes.
- Zachary is very smart. He can read and even do multiplication. He is one smart cookie.
- Zach cares about everyone. He is nice to them even if they aren’t the nicest to him.
- Just like anyone, Zach has lots of feelings. He may not express them like we do, but he has them – happy, sad, ecstatic, mad and many more.
- Zach is very stubborn. He likes to do things his way, and doesn’t really like help. Sometimes he will accept the help, but most of the time he says no.
- He likes music. He has a guitar and microphone. He sings or plays all the time. I’m sure God loves the sounds he makes – even if it is not the most pleasing sound here.
- Zach loves meeting new people. He may seem a little shy but whenever he meets someone, like one of my dad’s friends, he talks about them all the time. Sometimes he gets out his fake phone and calls them.
- Zach wants to do things like everyone else. Sometimes he doesn’t understand why he can’t do everything that everyone else does. All he wants to do is be the same.