Where are the Answers?

One day we were driving in the car together before Abigail was even a thought and Jordan played a little song for me by *NSYNC. Maybe you have heard it, “God must have spent a little more time on you.” The chorus goes a little something like this, “When I look into your eyes I know that it’s true, God must have spent A little more time On you.” It’s a classic love song, and I hated it. I felt like it was just saying you needed so much extra help that God had to take extra time fixing you to be right. I know that is not how you are supposed to take it, but that is what I heard. We still laugh when we hear that song and we will sarcastically say, “yep, God spent some extra time on you.” Then we had a lovely baby come along and I can definitely say that God put some work into making her!

We have been to about seven different specialists, not including her therapists and regular pediatrician. It goes without saying that every single doctor has been puzzled by Abigail. She is an odd bird to say the least. Her tests results never come out the way the doctor plans. Her results often do not match what she can do physically. We have done many tests and procedures in this short two years and every single one has come back normal with zero answers as to why Abigail is the way she is. She is a complete medical mystery so far.

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Our medical mystery…at least she is cute!

Just this week we received details about her genetic testing we have been waiting on for six months now. Six months is a long time to wait on a test that could literally change everything.  Everything is pending on this test. Answers as to why Abigail is the way she is, what our next steps will be, what her future will hold, and finding out about our next steps as a family. This was a BIG test! And in about five minutes of being on the phone all our hopes were shot. You say you will not get your hopes up. We knew this test could be as normal as the other test. We knew it might not give us the answers we were counting on, but you cannot help but to get your hopes up a little bit.

The nurse on the other end of the line said what we have always heard, “basically, the results show that all Abigail’s genes and chromosomes are normal. She does not have any misplaced or missing, so that’s unfortunately fortunate.” We have been fortunate that she has no major chromosomal abnormalities, but part of you wishes there was one thing wrong so you could have an answer. We are very unfortunately fortunate a lot. Part of us wants to cheer because our baby is healthy, and the other part of us wants to beat our heads against a wall because this constant testing process will never end. Between scheduling appointments that are months away because the doctors are so booked up, and tests that take months to complete we feel like we will never have the answers we seek.

What makes Abigail the way she is? No one can tell us. No one can say why she is so social and yet she cannot talk. No one can say why our two year old, who has been working on sitting for 18 months now still lacks the core strength to sit on her own. No one can tell us why her legs refuse to hold her up. No one has any answers and it is frustrating. But for now we are doing what we can. Even with a diagnoses we would do exactly what we are doing by going to therapy and receiving all the help we can for her. But it is that one question that plagues us – why? Why did God spend a little more time on Abigail, making her so complex? Why is it our child who will have to work harder in everything she does in life? Why?

I cannot answer these questions. I ponder them sometimes as I go throughout my day. When people ask us what is wrong with Abigail I try to explain to the best of my ability what I do know, but there is an awful lot I do not know. But I do know that God made her. He may have spent some time crafting her uniquely, but His thumbprints are all over her. And God made her with purpose. He made her in love. He made her with grace and mercy, and He loves Abigail more than I do plus a million times more. While I do not have all the answers, I know we are not alone as we journey through this. We have a Leader who guides us through. Yes, the way is often dark and very lonely but we are not alone. And for that I am thankful. I am thankful God spent a little more time on Abigail. She is perfect in every way and I would not trade her for the world. She may never talk or walk or even dress herself, but she is my sunshine and my little blessing. I only pray one day as I look back over our journey I will see the fingerprints of God in every step of this long path.

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Thus Far

David

I love the Old Testament, and right now I’m reading through 1 & 2 Samuel. In 2 Samuel chapter 7, God has just revealed to David the Davidic Promise of how he will always have a relative on the throne for all eternity. David goes in, sits before the Lord, and says, “Oh Lord, who am I and who is family that you have brought us thus far.” I obviously cannot relate to how David felt at this moment, but I can repeat those words. “Who am I oh Lord, that you have brought me and my family thus far!” I was reflecting today where the Lord has led me in the last 10 years. I would never have planned any of it, but I am thankful to be here and to know God has brought me thus far and He will continue to lead me and my family!!

When I was fifteen I got serious about my relationship with Christ. I knew it was something more and that relationship needed all of me. God needed all of me. So I made the decision to jump head first into my relationship with God and I never looked back. There have been lots of times of doubt, struggles, and fear but God has been with me every step of the way! I had my life all planned out by the time I was a freshman year of high school. I had always wanted to be an elementary school librarian (my dream since second grade) and I planned to go to college at Berry in Rome, GA. I like plans and hate change so when I make my mind up it does not change a lot, but low and behold God had other plans for me. I had already applied for Berry and a few other choices by my senior year. But my friend was looking into a school named Truett-McConnell for a soccer scholarship. The ironic thing was this friend did not have a relationship with Christ, and to apply for Truett you have to have a written testimony. She even asked me to write a testimony for her. Needless to say I had to explain that was not an option. But because of this friend I found myself at the TMC table during a college fair talking to the admissions rep. The rep was great at her job and convinced me to tour the school and meet the librarian there. I was so excited to meet a librarian I agreed to come visit the next week.

My mom and I went to TMC to meet with the Admissions team and take a tour. The weather was awful and I had to sit in my moms lap while taking the tour so I would not get wet. An eighteen-year-old riding around a college campus on her mom’s lap was not a good start to the tour. But the last stop before we went home was the library. I do not even know why but I told the librarian I would be there in the Fall. I went home and applied to TMC that night and was accepted in the following weeks. I was going to TMC to major in Education to get one step further in my dream of becoming a librarian.

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Me as a little tiny Freshman. The hair cut was a huge mistake!

Truett-McConnell changed my life in many, many ways! I wish I had the time and space to write everything, but since I don’t I will just have to hit the highlights. The first and biggest thing was that God continued to change my plans. I felt God tugging at my heart and leading me into ministry but I struggled because if I heeded to Him all my plans would be shot. I had already changed schools (which was a marvelous decision) and now He was taking away my only other dream. But by the end of my fist semester of college I was ready to surrender my dreams to God too. It is a story in itself, and everyone who knows me calls it my FROG story. Maybe one day I’ll share it with you too, but I accepted Gods call to ministry, changed major to Christian Studies, and again never looked back. Three years later I graduated with a Christian Studies degree, and I pray to use my calling to encourage and disciple women all my life!

But not only did I receive a whole new calling and a degree there, I received a husband and a child. My family grew there, literally. I was not even planning to get married going into college. Having a family was not a thought for me. I just was not one of those girls who dreamed of marriage and family. I guess I figured one day I would get married and have kids, but it was not something I desired. I liked living my life, and growing closer to God, but as always God had other plans for my and my mystery man.

Jordan and I both became Resident Assistants for the 2012-2013 school year. That was fated to bring us together, though I am not sure exactly how. We could not be more opposite. He was your typical athletic, popular, blonde hair jock, and I was your shy, dweeby average nerd. We did not hang out in the same circles (mostly because I never left the all girls’ dorm and he never left the all boys’ dorm), we did not share the same interests, and we had no clue the other existed though we sat a couple chairs apart in most of our classes the semester before.

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I think this is our first picture together at the TMC Hoedown.

But the summer we came to school for RA training we got to know each other and kept having weird, awkward encounters around campus. One time we passed each other in the stairwell and just stared at one another for about a solid minute without saying anything. I practically ran back to my dorm room mortified! Oh, to be a young college kid again. So after a lot awkward encounters, and a lot of volleyball games later we both confessed we liked each other for some reason or another and we became, as the kids say, ‘official.’ That was September 4, 2012. We both knew after two months of dating we were going to get married. Jordan proposed in June the following year and then in February 2014 we were married.

Our first year of marriage was probably kind of weird looking back, but we did not think anything of it at the time. Our first home was a small apartment inside the all girls’ dorm where I resided as Resident Director. So Jordan lived with 60 other girls for about four months. Then we moved down the hill to another on campus apartment to become the Resident Directors to more college kids. Six months into marriage I was pregnant and sick as a dog most days. Again, not the life I had planned but I would not trade these things for the world. They have made me who I am today.

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The day we left our ‘first home’ aka Otwell. I had lived there for three years by then.

Soon after Abigail was born we left TMC. It was a sad farewell, but we both knew it was time to move on. This is when the adventures with Abigail started. At two months we knew something was wrong with our child, and it has been a journey since. I will not go into details because I have told Abigail’s story so many times, but she is yet another thing we did not plan. We planned the having a baby part, but not the ‘your baby has special needs’ part. No one can plan that.

I could tell story after story of how God continues to change our plans. How we have interviewed at countless jobs for Jordan’s ministry position and yet have been turned down for one reason or another. I could tell of the tears that have been shed or the questions we have asked God as to why He continues to change our direction and path. But today I want to celebrate where God has brought us as David did all those years ago. I want to thank God for the life He has led me on. I want to praise His name for His faithful and continual care and provision for us. We have never been without what we need. God is good all the time and all the time God is good. He may not seem like He is always there or that He is listening to our pleas for answers and direction, but He has a bigger plan than I could ever dream or imagine. So while we are in the unknown in so many areas of our life, all I can do is trust God to see us through, and remember how far He has brought us thus far.

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My family! We are BLESSED!!!

Our Journey

When we first find out we were pregnant I was very apprehensive. I was worried about being pregnant. I was very, very worried about labor and delivery. I do not handle pain very well. And I was worried about how to be a mom. I had never been around babies and toddlers, so I had no clue how to change a diaper or even give a baby a bottle.  However, I survived being pregnant even though by about week twelve I was ready for the Lord to take me. I was so weak from throwing up and not eating for about ten weeks, I figured I would die any day. But that blessed second trimester came and pregnancy became a blessing as we watched our little baby grow inside me. I somehow survived labor after pushing for three and a half hours and being one push away from a C-section. I was exhausted!! But thank you to modern medicine I experienced zero pain. Praise the Lord!!!

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Our little newborn.

Then I was holding a brand spanking new baby. I had no clue what to do, but I knew our lives had changed forever. I learned to breastfeed and change a diaper in the hospital. We had our first scare when Abigail was just hours old. The night nurse discovered sores all over her body. But no one could tell us what they were from. At a day old Abigail was already giving samples and blood for testing, but nothing came of it, and they actually trusted us to take this little one home. Since Jordan and I had no idea what newborns were like we just figured Abigail was normal. She was eating and gaining weight. She slept well and smiled around three days old at her daddy, of course. She even flipped herself over from her stomach to her back a couple times her first week home. We figured she would be a wonder baby. Abigail was a great baby and always has been. She ate and slept like a champ and rarely, if ever, cried. I still do not know what Abigail’s cry sounds like because we never hear it.

We went to her two-month check up and she was gaining weight perfectly. That is all I was concerned with since I was breastfeeding. The pediatrician did her check up and said she looked perfect except for her vision. We had not even noticed because we just figured all newborns had bad vision and weird focusing issues. Abigail looked up for her first 10-12 months of life. You could barely see her pupils she looked up so much. She never focused or tracked anything. This led us to Atlanta to an appointment with a pediatric ophthalmologist. The doctor told us that her eyes looked perfect but he was concerned that there was maybe an issue with her connection between her eyes and her brain, so he scheduled us to have an MRI when she was six months old. Jordan and I were new and naïve at this process at this point, so we were worried our little baby was blind. I even remember researching everything I could find about babies who were born blind. Best-case scenario we figured she would be that baby with little goggles, and those babies are adorable so we secretly were kind of excited about getting baby goggles.

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Looking back on her baby pictures I do not know how we did not see it. But this is her looking up, as she always did. This is what concerned the doctors.

However, in the meantime we went back for our four-month check up, and our pediatrician was again happy with her growth but there was another issue. She had very low muscle tone. At four months her head control was still similar to a newborn’s. Abigail did not gain full head control until recently. But she was diagnosed with hypertonia, or as they call it ‘floppy baby syndrome.’ So we found ourselves going to a neurologist to do more tests. The neurologist was puzzled by Abigail’s vision as well. But they wanted to do blood work to determine the cause of her hypertonia, called a hypertonia panel. We did multiple rounds of blood work to determine things like her vitamin levels. We did a few urine tests, and urine tests for a baby are no fun and gross! We also did an EEG to test for seizures. All these tests came out clear. Which is a praise, but we realized then that this might be a long journey. Our days of researching everything were done. I knew all we could do was wait for something to come through with an answer.

Thankfully, at this point of our journey we started occupational and physical therapy. Abigail was about five months old, and she could not do much of anything. She barely could sit up with support. She rarely played with toys or noticed anything in her environment. She could not focus or track anything with those crazy eyes. And she had zero protective instincts. If you went to ‘drop’ Abigail she never reacted or got scared. To remember all that, and then to see her today is truly a miracle. Therapy has been amazing for her!!

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Her first time in her Bumbo chair. She could barely sit in it for a minute or two without falling over to one side or another. Now we use this seat every day and her legs are so much longer!

The day for the MRI came, and we made our three hour trip to Children’s early in the morning. Abigail had to go on a fast and could not eat that morning. It was a long morning with a tired, hungry baby, but we made it. They took us into our room to put Abigail under so she could go do her test. It was hard for them to find her tiny vein to put her IV in, and I had to step out of the room. My baby who never cries was screaming and I could not handle it. Then they got her ready to be out under. They put the medicine in her IV and within a minute she was out. It was one of the hardest things we had to watch. They rolled her out and I remember Jordan and I crying in each others’ arms. It was a long day for us all but we all survived, and made it home safe and sound. Two days later they called with the results, saying nothing was wrong. This would become a normal for us.

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In her precious little hospital gown getting ready to go back for her MRI. December 2015, seven months old

Our one neurologist gave up on us saying they just were not sure what other tests to do for Abigail. They referred us to another neurologist at Children’s. So back to Children’s we went. The doctor at Children’s wanted us to do an EMG test to check her muscle function. It was the craziest test we have done. Jordan and I were in the room with the doctor, and Abigail was laying on the hospital bed. To do the test the doctor had to stick little needles in Abigail’s muscles and send shocks into her muscles to minister her reactions. The doctor was on one side placing the needles and turning on the machine. I was on the bed holding the probes in place and Jordan was on the other side trying to hold Abigail down. It was like playing twister with all three of our hands on every inch of Abigail, and if someone walked in it would have been a sight. But that test came back normal too. Her muscles worked perfectly!

We have gone to an orthopedic doctor recently and you can read our story about that appointment here. But again Abigail’s bone structure was great! The last test we are waiting for is her genetic test. We did her blood work for it back in November. They said the results could take up to six months to come in and it has been five, so maybe we will hear from them soon. We do not have our hopes hinging on this test though because the nature of genetics testing is that they don not always give any answers. It is only a 20% chance they will find anything, and if they do it will not really change anything that we are already doing.

It has been a long two-year journey for us, with lots of new experiences and lessons in patience and faith. We obviously have no answers as to why Abigail is the way she is. But we have lots of answers as to things she does not have. She is healthy and happy. She is a joy to be around and we are spoiled!! Everyone always asks us what is wrong with Abigail when we say she is behind or has special needs. We just do not have an answer, but even without a diagnoses that does not mean that we have no hope. A diagnoses will just put a name on what Abigail has, but it will not solve any thing. We will still continue to do all three therapies, and attend our doctor appointments. Yes, a diagnoses will help with getting grants and other help as time progresses, but Abigail is not defined by what is wrong with her. She is who she is because of what she can do, and her bubbly little personality God has given her.

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I miss her gummy smile!

I wrote a blog about being In the Midst of the Unknown, and we are still there today. The unknown is not a fun place to be. It feels as if we are walking a path to absolutely no where, but the view around us right now is good! While we do not know what tomorrow holds, we know that right now God has us here on this journey. It is tough in its own ways. We do not know what Abigail’s quality of life will be, or even what she is capable of. She has the potential to regress any day, and that scares me more than anything. She could be our child who never leaves home. She could be in a wheelchair in the next year or so. We simply do not know. It is the not knowing that is the hardest. I want to make plans. I want to grow our family. I want to know what the next ten years will look like, but we cannot even predict the next ten weeks.

This journey of the unknown has stretched my faith and my patience to the maximum. I never planned to have a special needs baby, no one does. But here we are diving into the special needs community headfirst. It is a life I never thought about. But it is a life that is so rewarding, and blesses me everyday. My daughter is a blessing, and she is perfect in every way. Yes, she is a little different and highly unusual in so many ways, but she is a joy and a treasure. A lot of times she will do something and we will be like, “oh, that is so Abigail.” Like she just learned to blow kisses, but she does it all her way and it is precious. I think that will be the way her life is, doing things in her own unique way. But I am so glad God gave Abigail to us to raise and love on. It is been a journey loving this girl, but I would not change a moment of it!!

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