Also, I know many of my friends here and back home have wondered how we (particularly me- Melissa) are doing dealing with it, and how we have walked through everything. So, I am going to share our story.
I found out I was pregnant just a few days before Christmas in December of 2013. We were very excited! And from the beginning I prayed for a little girl. I had delivered at a birth center Elliot, but knew I wanted to go to a hospital this time. I really wanted to have a couple days to relax after having the baby, and that is not a luxury the birth center gives. So, that meant switching to an OBGYN rather than having our wonderful midwives. We went with a Doctor named Dr. Marlio. She was wonderful!
At my 8 week appointment, we were asked if we wanted to have bloodwork done to test for genetic disordered. We declined. We knew that we would not abort no matter what, so I didn't feel the need to be poked at with a needle needlessly. Besides. I was 26. And no one has babies with genetic disorders at 26, right? That's why we had kids so early!
The pregnancy continued and everything looked great. No problems whatsoever. We opted to only have one ultrasound since I prefer to have as few interventions as possible when I am pregnant. We had planned on not finding out the gender, but our families wanted to know so badly that we decided accommodate and have a little party with a couple friends in PA since our family lives so far. The 20 week ultrasound was the first time we found there might be a problem. They found 3 possibly issues. One was that the baby had a small calcification on the heart, 2) there was a very small amount of extra fluid around the brain, 3) the baby's kidneys were slightly inflamed. We were told that our baby had a 1 /52 chance of having down syndrome. They asked if we wanted to have genetic testing done and/or and Amniocentesis. We agreed to genetic testing, but opted our of the amnio since it ran the risk of killing our baby (about 1/300). The amnio was more accurate, but we didn't want to risk it.
I still wasn't super nervous. I was 26! A lot of people have scares like this. And even the ultrasound markers weren't prominent. So we waited. That night we had our party. A GIRL! We were elated! I had wanted SO badly for Jeff to have a daughter. I love my dad so much! I wanted Jeff to experience the same kind of relationship.
So, we waited for the result to come in. I often even forgot to pray about it since I was so sure it would be negative. A week later I got a voicemail on my phone, from a genetic counselor asking me to call her back to discuss my test results. I knew then. Before I even called her back. There was no reason a genetic counselor would call me. I felt sick to my stomach as I called her back. I literally though I might throw up as I talked to her. And my fear was confirmed. There was a 99% chance our daughter would have down's syndrome. "Now it's time to talk about your options," She said. No. There are no options. This is my daughter and I have no intention of killing her, thanks. I hung up the phone. And in the parking lot of the grocery store, I completely lost it. I am not sure I have ever cried that hard in my life. I called Jeff and he came home from work. We cried and prayed together. And I was so scared. We didn't understand. I had planned on being a missionary my whole life since I accepted Christ as 14 years old. That is why we moved to PA. It was to be evaluated for ministry and pursue international missions. Why would God do this? Hadn't we offered our lives? Why would do this to my daughter? My first baby girl.
But we prayed and we prayed and we prayed God would heal her. Maybe this was a test? I don't think we much questioned that she had down syndrome. Our hope wasn't much in a misdiagnosis. If our daughter was born without down syndrome, it would be because of the Lord. We told many many people so they could be praying with us as well. Jeff was much stronger than me. He always had faith God could heal her. He was such a rock for me during pregnancy. And we drew so close to the Lord together as we prayed for our sweet baby girl.
We were stuck between two names for most of my third trimester: Sarah and Joy. By about 35 weeks it was obvious which we should choose. If she was born without down syndrome it would be Joy because the Lord would have filled us with Joy in His healing her. And if she was born with down syndrome it would be Joy because we wanted the world to know we had wanted her anyway and she was still our Joy. With abortion rates as high as 93% with children with down syndrome, we wanted people to know we had chosen to keep her. That we were not ashamed to call her ours.
But, I won't lie. I don't think there was a single moment before Joy was born that I wasn't afraid no matter how hard I tried. I constantly had a pit in my stomach. I thought about it day and night. I regularly would just start sobbing as she moved around in my belly. I had worked with kids with down syndrome before. They seemed happy. But it didn't matter. This was my daughter. Not someone else's. Mine. My baby girl. I thought about her future. She would probably never get married, or have kids. She probably wouldn't go to college. She might need lots of extra help. What if she never learned to talk? I couldn't bare the thought of kids staring at her, or fearing her, or making fun of her for having a disability. And it plagued me everyday. I sometimes lay awake for hours thinking about it, and praying she would be spared. Jeff helped me so much with this. Reminding me that regular kids get made fun of too. And how far things have come in the medical world. How there are people with down syndrome who have gone to college or gotten married. And how even if she DID have down syndrome when she was born, God could still heal her if He chose. I love that guy so much. He also reminds me that someday we will see Joy for what she was meant to be, and she will have a new perfect body one day. This life is short. Soon we will see her made whole and perfect :) Praise God
I am a bit hesitant to admit this, because it looks really bad. And it is honestly. But I completely understand why people have abortions when they find out news like this. I had always said I would never have an abortion. That it is was murder. And I believe that. But I had also never been the one to be told that my child would have a life altering disability. That my life had changed forever. But then I did. And I was so afraid. And I understood. If did't have the Lord, and I had the whole world telling me how hard my life would be. How terrible it would be to have a child with a disability. That I would be better off not to have her. I would be happier. Why the heck wouldn't I "abort" my "fetus". They use words like that to dehumanize. So you wouldn't have to say I am going to "kill" my "baby". But they are the same words just switched out. But it helps. Now that I have been there I can see it. I understand how people are so afraid that they panic, and they give into the lie of the world that it would be better if their baby was never born. If I weren't a christian, I probably would have to. We are all afraid of what we don't understand. If I could go back, I wouldn't have had the genetic test run at all. Because when you are just pregnant and have no baby to show for it, it just made me afraid. It didn't help me prepare. For me, it just made it worse. I'd rather them just put that sweet baby in my arms and I'd take the news then.
I never felt ready, I could have just stayed pregnant forever if it were up to me (which is saying something since I hate being pregnant), but the day came for Joy to be born. I woke up all though the night with terrible back and abdominal pain. Exactly 3 weeks before my due date. No contractions. Just pain. Funny thing is I ALWAYS have contractions. I am the master of braxton hicks contractions. If you can believe it they started at SIXTEEN WEEKS with Joy. I kid you not. But when I got up in that morning around 7, I had leaked a little fluid so I called the doctor who told me it was nothing to worry about. But I didn't feel right. So around 7:30 when Jeff was leaving for work, I asked him to stay home for the first half of the day because something wasn't sitting with me right. So he did, but he didn't think I could be in labor yet either. Not three weeks early. I was 5 days late with Elliot! Around 8 I started having contractions so we started packing a bag for the hospital just in case. I still was in denial, but the contractions did feel different. Lower. Like labor contractions. But they didn't hurt a lot and they weren't regular. But I called my friends Julia at around 8:30 and she was there by 9 to take care of Elliot while I waited from my mom to come. At this point I didn't really want to talk though my contractions, but it still wasn't that bad. Jeff was getting a bag together, and I still didn't think I was in labor, haha. DENIAL. Julia, after about 10 minutes of watching me, told me she really thought we should go to the hospital because my contractions seemed close together. I called the doctor and she asked me to come into her office which was in the office wing of the hospital. THANK YOU JULIA! We left for the hospital and I was getting increasingly uncomfortable, but I knew it would get much worse. I could handle this. It gets A LOT WORSE. So I was ok. Walking up to the office, I had to stop in between contractions. The receptionist asked me to take a seat with 5 old ladies waiting for their annuals and a super pregnant lady. ARE YOU KIDDING ME?! I thought. I sat in the waiting room for 5 minutes and they brought me into the small exam room and strapped me to a monitor to look at the strength of my contractions to see if I could be admitted. The second I laid down on that table I was in excruciating pain. There is was. Now I was finally sure I was in labor. If I was like a 5 on the pain chart before I sat on that table, I was a 10 the second I hit it. It was about 10 am. I wanted to scream, but I didn't want to scare the old ladies and the super pregnant girl, so I just almost broke Jeff's hand in complete silence. And they left me in that room for about ten minutes. A nurse came in and looked at my contractions on the monitor. She said, "hmm, they aren't super regular yet, but there are a few stronger ones." And I thought, "If you tell me I am not in labor I will rip you apart." But she didn't say anything else. She left the room. No sooner had she shut the door then my water broke. Still fully clothed, mind you. And I started SCREAMING. Forget you old ladies, and sorry to scare the crap out of you pregnant girl. Not like a little. Like, I am sure the people in the lobby thought I was dying. The doctor told her patient she was working on, "gotta go!" and ran into my room. When she walked in the first thing she she said to me was, "it's that bad, huh?" Obviously. She checked for dilation for the first time. "Oh, um, ok, so... I see the baby's head... Do you think you can make it to labor and delivery?" Um, NO. "Yea, I think we will have the baby in the hall so let's do this!" One contraction, two pushes. Done. 10:18 am.
They laid Joy on my chest for the first time. My first thought, what do her eyes look like? Strange thing for a mom to think. But that is what I knew to look for for down syndrome. Did she look like her eyes were almond shaped? So, I looked at her. I knew then she had down syndrome. Her features weren't prominent (and they still aren't). It wasn't obvious. But I could see it. Jeff wasn't sure. Neither were the doctors. And I wanted to believe I wasn't. It was 3 weeks and a blood test later that we received the official diagnosis.
And I was very sad. Obviously. Who wouldn't be? Mostly for all thing things my daughter might miss or struggle with. And I struggled with the Lord. Why hadn't He healed her? Had our faith not been strong enough for healing? Had God turned from me? Was I being punished? Maybe. I still don't know the answer of why God didn't heal her. But I have a much better understanding of suffering now. I had never been though a trial like this before. I never really lost anyone, or had any major trial. But all of a sudden I saw suffering all around me. We have friends who have now lost both of their daughters (within just a couple years) only hours after they were born, a young mom of 4 lost her husband to cancer, a couple from our church lost their first daughter to Edward's syndrome, a pastor from our church had a daughter born with down syndrome, and the list goes on. I cannot claim that I suffered as much as many of them, but I can relate to suffering now in a way I never could before.
The bible says, "Consider it pure joy, my brothers and sisters,whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything." James 1:2-4 (ESV)
We are promised trial, and we should consider it joy! Something I always read, and I could totally do that when my trail was studying for 4 finals at once, or getting into a fight with my husband. But it made me think. Is God only good when my husband is cancer free? When my daughter has no disability? When my son is obedient? No. In this world we will have trouble. But He has overcome the world. (John 16:33). This lifetime is so short. And there is so much suffering in this world by so many people. I see that more clearly now than I ever have. And I have had to wrestle with that question. Why is there so much suffering in this world? Why is there so much sadness. I see it everywhere now. But God is showing me, little by little, how good He really is. I was very faithless through much of this trial, but God is patient with me, and is slowly pulling me back up to my feet. I needed to be shaken up a bit. I can see that now. I was far to naive and I had gown stagnant in my walk. I can see much much good from this trial. Does that mean I am glad Joy has down syndrome. No. But the Lord has certainly used it, and is using it, as a means of sanctification for both Jeff and me.
It was so hard when I was pregnant. But it was so different after she was born. She wasn't at all what I expected. She was... just like a regular baby. She nurses, she sleeps, she cries (though not very often!), she smiles, she laughs, she plays, she hates laying on her tummy, and she loves being snuggled. Nothing makes her happier than when she is being snuggled! And we are completely and utterly in love. I don't see her as my baby with down syndrome. I forget she has down syndrome 95% of the time! She's such a good baby. And I have often thought to myself, "Why was I so afraid of this?"
So, God has given us much grace for today. For when she is 20? Not so much yet. But I believe that day will come, God willing.
How should you talk to us about this? Excellent question! It is not a touchy subject. We are happy to brag about our daughter, just like you like to talk about yours! And we are happy to talk about the trial. I am only touchy when I feel like people take pity on me for my daughter. Don't be sorry. My daughter is alive, and she is happy and healthy. Why should you be sorry that I have a daughter I love with all of my heart? No, be joyful with me! WE HAVE A SWEET BABY GIRL! But, to be honest, it isn't my favorite thing when people say down syndrome children are a blessing from the Lord for special parents. Down syndrome is a sad thing. It is a result of the fall, just like any other sickness, because of our sin and disobedience to God. Though I know they mean well, down syndrome is not a blessing from the Lord. But children are. Joy is my blessing from the Lord.
And lastly (finally), how does this affect our plans for the future? In short, right now it doesn't. We are still pursing international missions, but caring for our daughter as well as we can. She has special instructors and physical therapists that come to the house once a week to help keep her from falling behind her developmental milestones, she just started solid foods, and right now things are going great! We know our plans might shift, or be farther delayed, or maybe even changed entirely. But we will continue to pursue what we feel like Lord has placed on our hearts. One day at a time :)
If you made it though that whole thing you totally get a high five (high five). We do welcome any questions and we are so thankful for you all. Please continue to pray with us for our daughter's health and development.
Blessings,
Melissa and Jeff