I have wanted to share my daughter’s testimony for a long time, but have never gotten around to it. So here it is-Gracyn’s story.
In August of 2014, we found out we were expecting again. After suffering a miscarriage in July, we never thought we would be pregnant again quite so quickly. But here we were, expecting and so very excited! We waited until we were able to see the doctor before announcing to our friends. Once we had seen the doctor and got the all clear that everything looked good, we shared it with the world! We posted a picture of the ultrasound picture and me getting some pizza since I had been craving it so badly. We were on cloud nine, until about 9 weeks in.
One night, after coming home from a concert, I began to bleed heavily and we went straight to the emergency room. They told me I had a sub chorionic hemorrhage and I needed to be on bed rest. Bed rest lasted about 6 weeks which let me tell you, was hard. I’ve got a toddler and a busy life so it was more taking it easy as much as I could. They referred us to maternal fetal medicine to have it checked on and at 16 weeks, all looked good. So I’m thinking we can move on right? Wrong.
At 20 weeks, we saw my normal obgyn and had our gender ultra sound. It was a girl!! Woo hoo! At the ultrasound though, they found what is called echogenic bowel, which can be a sign of a bigger problem. After this, we were sent back to see MFM. At this point, I was tired of hearing bad news. Along with the issues of the pregnancy, we were having a horrible time getting insurance figured out. Nothing seemed to be going right. Tests were ran, all came back negative, and they had come to the conclusion that it may have had to do with the previous hemorrhage I had had. They wanted to see me every two weeks for a month just to make sure everything checked out. Overall though, they thought I was fine. Bam! More problems. During these next two visits they noticed that she wasn’t growing as she should and at 29 weeks, she stopped growing all together. So guess what? More tests.
At this point, I was on a first name basis with the staff there. I was going in 2-3 times a week for ultrasounds and NSTs. They wanted to do another round of blood work so off to the lab I went. During this particular blood draw though, an error was made. They lab tech punched in the wrong code and had the wrong blood test done. I went back to see my doctor and they told me this. “Well, we meant to have the cystic fibrosis test ran on you but they accidentally ran the CMV test. Looks like you’ve had it at some point but it’s not currently active. Just go back down to the lab and have them run the correct test.” Little did I know at that time, that test would have such a huge impact on us.
Flash forward to just shy of 36 weeks. They decided to induce me and after a long, stalled out labor, I finally gave birth to a 3 pound 8 ounce little girl! I was able to hold her for about a minute before they took her to be checked out. First issue they noticed was her incredibly low platelet count. It was so low, they were concerned about internal bleeding. Because of this, they decided to transfer her to Cardinal Glennon Children’s hospital. Along with the platelet issues, she had a slew of other problems but overall was doing well. She was a fighter, that’s for sure! As they began trying to find out what was causing all of her issues, they asked if I had ever been tested for an autoimmune disorder. I told them I wasn’t sure but gave them permission to look into my medical records. While looking in my records, they stumbled upon that CMV test that had come back positive. They decided to run the test on Gracyn and guess what? Positive. Gracyn was born with congenital cytomegalovirus. This explained everything! As thankful as we were for an answer, the outcome of this was not something we wanted to hear. The outlook on life for kids with CMV was not promising. They talked to us about blindness, deafness, seizures, physical and mental delays, etc. I must say I was pretty devastated. Then, my personal favorite part was when we were informed that roughly 80% off marriages fail when they have kids with special needs. Thanks. That’s encouraging. Why not just throw salt in an open wound why don’t ya. But my husband I refused to be part of that statistic. We didn’t know what our future would look like with Gracyn but we were ready for whatever came our way. We had a God who was strong, family and friends who loved us and a church family that supported us more than we ever could have imagined. So we began life with a special needs child.
Now that you have some background, I want to share some moments through this journey where God showed up, and he showed up big. First, I would like to point out her diagnosis. Like seriously, she was diagnosed by a mistake made by a lab tech- what?! Some may call it a coincidence but I fully believe God had his hand in that situation the whole time. Next, I knew she was deaf. We knew many kids with CMV are deaf. I prayed and asked God to not let it be her but before we went in for the hearing test, I knew in my heart that the Holy Spirit had prepared me for what I was about to hear. When the audiologist told us, it didn’t alarm me. I had a peace that only God could have given me. Physical delays. She has them, but she has continued to get stronger and push forward, surpassing what any of us thought she would ever do. Even our therapists agree that she is a wonderful example of the power of prayer! Which brings me to my next point-our doctors and therapists. They are incredible! Not like oh yeah I like them and they are nice I mean, hands down, they are the best! I prayed at the beginning of this journey that God would place us with the right doctors, therapists, etc. and guess what? Prayer answered. Then, at 8 months old, Gracyn started showing signs that could have been seizures. We went in and had a video EEG done and the initial report was yes it definitely looks like something is up. When we sat down with the neurologist, we were once again shocked. He said that the EEG was abnormal and that when you look at it, you should see seizures all over it, but he didn’t. He said it was very odd and he was quite taken back. I wasn’t. That’s what happens when God is in the equation. Time and time again, he has shown us his goodness and healing power in her life. I want to end with one last story and quite possibly my favorite of all.
About a month after Gracyn was born was when we found out she was deaf. Now mind you, even though I felt God had given me a peace about it, it didn’t take away my fleshy desire to be really mad at God. We had just gotten discharged from the hospital because her liver was giving her problems, she was deaf, we were meeting with therapists to decide the best plan of action for her and I was mad. I was mad that this was the life my daughter was living. At a Wednesday night church service, I was worshipping and praying. Maybe yelling a little too. I just wanted to know why Gracyn was going through this. I believed in the healing power of God but I wasn’t seeing it at this point. Why weren’t my prayers being answered?! Then, in an instant, God spoke to my heart and told me it was my prayers that got her here in the first place. He told me that he was in control and that He was with me. In that moment I thought God wasn’t there but truthfully he had been there all along, protecting her, and getting her into our arms. There are plenty of CMV moms whose babies left this earth way too soon and Gracyn was here with us. What more could I ask for?
Here I am, about 17 months later and I can honestly say, I have seen God show up more in the last year than I have my entire life. Most CMV kids are in need of a full time care taker, completely disabled, and some even pass away from the effects of this unfortunate virus. And then there is Gracyn. She is for the most part, a normal kid. Yeah she’s got her issues but we are handling them thanks to God’s overwhelming mercy. And as for Tony and I? We are slaying the whole marriage thing. That doesn’t mean it’s not tough but we refuse to give up.
Now, when I’m struggling or wondering where God is in a certain situation, I look at Gracyn. She is my daily reminder that God is good. Not only is he good, he is alive and working in our every day lives. I challenge you to when life gets tough, see the things God has already done in your life. Because here’s the deal- he is the same God now that he was then. The things he got you through then, were just the beginning of what he is going to do for you now!
It’s all about your outlook. So what’s yours?
For more info on CMV, click here.