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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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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Transformation in the Waiting

You wait in check out lines. You wait on big news to come. You wait on deadlines and release dates. You wait on your husband to get home. You wait on your baby to arrive and you wait on them to fall asleep every night. Waiting is just a part of life. Some people are good at waiting and others are very impatient. While you are waiting what are you learning? Life is not always about the destination at the end, but about the journey on the way there.

“I believe that I shall look upon the goodness of the Lord in the land of the living! Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!” Psalm 27:13-14

Jordan and I have been waiting for what seems like forever and we still have no clue what God is leading us towards. He has called us both into ministry, yet neither of us is anywhere close to that calling. When we first got married three years ago we were helping at a church with the youth group. We then moved to a part-time youth ministry positron, and then we moved here where we are not in any ministry. We have interviewed at countless churches and been told no more times than I’d like to admit. It’s tough knowing what your passionate about and what God has called you to, and yet not finding an open door to do that calling. I can only hope that God has something bigger out there than we could imagine, and this season is our time to prepare for what God has planned.

We are also still waiting on answers about Abigail. Why is she so far behind developmentally? Is there hope for her to talk and walk and be independent one day? This journey started when Abigail was two months old. We have waited on many different doctors to do many different tests. We have waited for MRI, EMG, EEG, and blood work results. All these point to the same answer – that Abigail is completely ‘normal’ on paper. So we wait. We wait for her genetics screen to come back. We wait for answers. We wait for her to determine if she is ready to advance or not.

We are living in a time of waiting. Waiting is not fun. We want answers as to why God has led us here and what He wants us to do. We want answers about Abigail and hope that things will be okay. But for now God has led us here – to this community, to this job, and to this child. We are trying to serve where we are because for now this is where God has us.  And as long as God has us here I want to be intentional with every moment. So many days I get caught up on the to do list I forget there’s a bigger world out there than just my own. I’m not sure how long God will have us here. It could be for 60 years or for two, but while we are here God is molding us and growing us. I can see it in my own life and in Jordan’s. We are growing up and learning so many things about our community and ourselves. We need to be here. We need this time to mature. We need this time of waiting to mold us into vessels God can use.

“But now, O Lord, you are our Father; we are the clay, and you are our potter; we are all the work of your hand.” Isaiah 64:8

The Bible uses a lot of comparisons to pottery and a potter when it talks about God working on our hearts. I have a very special piece of pottery from when I worked at a camp one summer. It doesn’t seem like much of a pot from the outside, but our theme that year was about the Potter and the clay. During our worship night two leaders would sit on the stage and make a pot as worship music was played. It was beautiful picture that God is still working on you and me. As the girl made this particular pot it started to fall in the middle. She didn’t give up on it though. She just started reshaping it and now the line where it dropped gives this pot personality. That’s exactly what God does in our lives. When we mess up, when we choose what our flesh wants, when we fear and doubt His ways we feel like we are messed up and cannot be fixed. But our Potter takes his skilled hands and forms all our mistakes into beauty. He is a master Potter and what He designs is never wrong. So these times of waiting, while painful and long they may be, are necessary to make us into the vessels God needs to serve Him today. And to do that I have to stay moldable and in my Creators hands no matter how tough it may be. It hurts to be pressed and pounded into something new, but in the end I want to be a beautiful piece of pottery that my God is proud to display to the world around me.

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“Where do you want me to go?” That is what is written on my piece of pottery.

And the Mystery Continues

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Waiting on our x-rays. Abigail loved this doctor! She has smiles for everyone. 

The doctor looks at us with the saddest look in his eyes. You know he is about to tell you the worst news about your child and you brace yourself for what you are about to hear. Then he says, “I am so sorry Mr. and Mrs. Lidh. But everything in Abigail’s tests shows up normal. She could not be any more perfect.” A big sigh and a shoulder shrug. You just want to hug the doctor and tell him everything will be okay. This is nothing we have not heard before. Most people would be jumping up and down about hearing a normal diagnosis, and yet here we sit with the doctor who looks like the worst thing has just happened.

This was our experience Thursday morning at the orthopedic office. Our therapists wanted us to get Abigail’s hips looked at, and make sure everything was growing properly since she never bears weight through her legs. We scheduled our appointment and had x-rays completed of her spine, side, hips, and legs. Everything looked perfect! Her bone structure and growth plates were exactly how they were supposed to be, and the doctor could not find one thing wrong with her.

At every doctor appointment we have to list all previous doctors and tests we have seen and preformed to date. The list is getting rather long. As I began listing Abigail’s previous medical record to the orthopedic doctor you could tell he was thinking this was a lot for a baby who is not even two. Then he asked the age-old question, “And none of these tests came back with any answers as to why Abigail is behind?” Nope, not a single one. Every test has come back with the same answer. Normal. Normal. Normal. Her eyes are normal. Her brain structure is normal. Her bone structure is normal. Her brain activity is normal. Her muscle responsiveness is normal. All her blood work has been normal.

Usually when a doctor comes back with lab work and test results that are normal, both you and him are very relieved. Everyone likes to be normal. But when all tests point to normal, and still the patient is very abnormal something does not add up. Jordan and I almost laughed when the x-rays were completed. We are so used to Abigail’s tests being normal, why should we think anything different. But that poor doctor wanted to help us and let us know why our daughter is behind developmentally. He even said he looked for possible spine tumors or anything odd. Yet, there was nothing. We walked away laughing, leaving him looking stumped in her chair.

Abigail has baffled many doctors. We have had doctors consult their medical books in their office while we wait. We have had many a doctor scratch their chin and shrug their shoulders looking very puzzled. Our one neurologist even referred us to another practice because they were not sure in what direction to go in anymore. What can you do? Your baby defies all medical odds so far. At least she is cute.

So who knows why Abigail is the way she is. We are still waiting for the genetics testing to come back from the blood work we did in November. We will not know anything on that until May at the earliest. So, maybe we will find our answer there. But we are not getting our hopes up too much because the genetic counselors have told us again and again that with this test there is only a 25% chance they will actually find anything abnormal with Abigail’s genes. Genetic testing is such a long, detailed process that finding one abnormality on a strand of DNA is slim to none. But we are happy with the negative results, and we are very thankful to have such a healthy, happy little oddler! Maybe one day the mystery of the little oddler will be solved.