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!!!
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.
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!!
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.
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.
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!!