Monthly Archives: February 2015

As Sophie’s second birthday approached, her lack of speech became more concerning. Her therapists continued to assure us that it was normal given all her developmental challenges. She had overcome so much already by this point in her life. I was (and am) so proud of all that she accomplished thus far in her short life. But, her pediatricians were more concerned.

Because of her stagnant development in speech, Sophie’s pediatrician encouraged me at her two year well visit (ironic how these “well” visits for her always focus on what’s NOT well) to consider enrolling her in developmental preschool when she turned three. I nearly cried. I had quit my job just a few months before this point to stay at home with my kids. I was leaving a career in teaching — teaching! But all my efforts to teach Sophie to speak were falling flat. I had no desire to send her to preschool; it was against my natural grain, against everything I had planned and considered for educating my children. (I’ll spare you the rant against the public education system and all that is wrong with it right now.) (Garrr!) Instead, I began to try and open my mind to see what God might have for us in this. Maybe there were people with whom we needed to interact. Maybe other lives that God wanted to touch through Sophie. Maybe a lesson in humility for me. I knew that it was going to need a lot of prayer. A whole lot of prayer.

As Sophie’s mental and emotional development continued, her lack of speech became increasingly frustrating for her and for me as well. Her little personality was emerging in all its cuteness, but she was unable to express her wants and needs. She understood everything that was said to her and around her, but no words would form on her lips. There would be times that we would both be in tears because I simply could not understand what she was wanting or needing. So, so frustrating. We worked off of storyboards; we worked on signs, but it all falls short of real speech. I wish that I could say that now I have the answer to this dilemma, but I still don’t. This is still an every day struggle for us. Sophie has learned quiet a few more signs, and that helps, but there are still many times where she cannot convey what she is wanting or needing, let alone being able to just express what she is thinking, wondering, or feeling. (Although, in spite of a lack of speech, I still think she finds ways to ask “why?” over and over again. So we haven’t missed out on that toddlerhood joy.)

Over these silent years, I have longed to hear Sophie’s words. I still long for that. Three years is a long time to not have any meaningful conversation with someone that you love. Yes, I know that Sophie and I communicate in other ways, but there’s just something about words. What is it about words? I can’t figure out why they are so important to me. But, I do know that in Sophie’s continued lack of speech, I have been mindful of how God must long to hear my words to him. There are days where I hardly find time to address him at all, let alone tell him how I love him, how thankful I am that he has chosen me as his child. There’s something missing from a relationship when communication is scanty. If I haven’t called my mom in a week, I can spend over an hour bending her ear, catching her up on all the exciting [read: mostly mundane] details of my life as a stay-at-home-mommy. We fall out of touch with friends when they change jobs, or churches, or move away, because we don’t keep up communication with them. There is something powerful about the bond that words can create, the intimacy that they can foster between two people. I am especially touched by the power of the written and spoken word; it’s just something about the way that I was created. In my longing to hear my daughter’s words, to connect with her, to build intimacy in our relationship, I see God’s longing for those same things from me. He longs just to hear my questions, my feelings, my thoughts – more than just my wants or needs. I would love for Sophie just to be able to pour her little three year old thoughts out to me. In the same way, my Father longs to hear what’s on my heart. How loving a Father we serve.

As Sophie approached her third birthday, a routine visit to the doctor produced another possible diagnosis. Her pediatrician brought up the possibility that Sophie may have apraxia, which is basically an inability to speak because the brain fails to coordinate the muscles properly that are needed for speech. I’ll be honest, this thought broke my heart because this apraxia is a lifelong condition, not just a speech delay. Up until now, I’ve functioned under the belief that Sophie’s speech will catch up. If she does have apraxia, it’s possible that speech may be a lifelong struggle for her. My heart broke. But the Lord quickly brought much truth to mind. I first thought of Moses. He told the Lord that he couldn’t go and speak to Pharaoh because he didn’t speak well. Well, God used him to lead an entire nation out of captivity. So I guess speech problems are no barrier for the Lord. Duh, right? But if you’ve ever had a possible “disability” spoken over your child, you know the thoughts and fears that quickly try to enter your mind. Life will be hard. Life will be different. She won’t be accepted. Well, that may be, but God has a plan, and he’s much bigger than all that stuff. The second Scripture that came to mind was of the blind man about whom the disciples asked “who sinned that this man was born blind?” and Jesus replied, “Nobody. He was born blind so that God could be glorified.” This passage reminded me that Sophie is God’s creation, and he did not make a mistake, and that he will be glorified through her life. Such good news! When Jesus walked this earth, he healed many people who were called mute. They could not speak, but this was not an obstacle for Jesus. Maybe these truths seem obvious to you, but I love how God quickly brings Scriptural truths to my mind to overcome the doubts and lies that the enemy speaks. So, while I don’t “feel” great about this possibility, I believe, and I trust. And I know that God is up to something. Words are so important to me. They have always been. I need to hear affirmation, thoughts, feelings out loud. And, ironically, my daughter has no words. I’m learning to find love and connection in other ways. It is so unbelievably against my grain that it just has to be the Lord. He’s working on me. I’m believing and longing and waiting for the day when I will hear Sophie speak, whenever that day may be. Her future is in his hands.

Sophie’s second year of life brought new challenges. Up until she was almost a year old, her neurologist was content to just observe her progress and see if she caught up before running a bunch of tests. But as her first birthday approached, we knew that he was going to suggest testing because she wasn’t on track developmentally. She only began crawling just days before her first birthday. We agreed to move forward with testing, but I was confident that God had touched Sophie and was answering our prayers for healing in her body.

Sophie underwent three MRIs that year she was one, and she also underwent multiple procedures on her eyes because of her blocked tear ducts. Unpleasant to say the least. We also endured two trips to the Cleveland Clinic for second opinions. Their neurologists actually ended up running many of the tests that she underwent that our neurologist in Columbus had been hesitant to do unless necessary. Blood draws, urine samples, more blood draws. The whole process was just nightmarish. I remember sitting in labs, holding Sophie, clamping down her limbs and holding back tears as I whispered in her ear to try to help her get through the needle sticks. Because she was so small, the lab technicians often struggled to get the needle into a vein to get the blood they needed. And then there was the arterial blood draw. Oh. My. Goodness. I remember standing above her head as she lay on the table, holding her little face in my hands, staring into her eyes and just telling her over and over that it was going to be ok. I remember after that particularly difficult lab appointment, Andrew said to me in the car, “I don’t know how you do it. I don’t know how you stay so together during these things.” I didn’t have an answer for him then, and I don’t now either. I just needed my baby girl to know that mommy was there, and that she was going to be alright. Even though she was enduring pain, it was for her good. After this appointment, I remember seeing myself as the child in pain, with my Jesus just holding me, reassuring me that even though I was in pain, he was there, and it was going to be ok. He promised me then that it was for my good. What a beautiful picture, to know that just as we hold our babies when they are hurting, Jesus holds us through our pain, too. Sophie understood nothing of what she was going through or why she was going through it, but as her mother, I knew that she needed to go through these things for her good. I was reminded yet again of another reason to trust my Father. Like Sophie, I did not understand one bit of what we were going through. I could not, cannot, see the big picture, but God does. And I trust that the picture he sees is completely beautiful. And so we kept walking forward.

After her tests were all run, I realized that the tests were not, in fact, the hardest part. The waiting was harder. What would the results be? As we waited, I wrote an email requesting prayer for our family:

“At this point, I am just not sure what to pray for. Each time I dread one condition or diagnosis, I’m always reminded that another diagnosis could be worse. How to choose the least evil diagnosis?! Ultimately, I’m reminded that I don’t WANT or NEED to decide my daughter’s life. I want to place that in the hands of the ONE who can actually see what is BEST and what is needed for HIS GLORY. So I ask you to pray as you feel led, and ask God to do what is best for Sophia, and ask him to prepare Andrew and I for whatever that is. Along with that, as a mother, I cannot stop asking him each and every day, many times a day, that he would make my daughter strong and whole, every nerve, muscle, joint, tendon, ligament, neuron, gene, etc.”

Oh, to be able to trust our Father, that he truly DOES see what is BEST, and even if we go kicking and screaming, he won’t give us any less than this best, just because we don’t see it through our human lenses.

My deepest fear in this time of waiting, that I never even spoke aloud for a long time, was that her genetic test would come back with an abnormality. I was terrified that she would have a chromosome disorder. I agonized over this fear in my own heart and mind as we waited to hear. One day when I really could take it no more, I shared this fear with my ladies small group. Friends, it was so freeing to let that out. On my way home from my group, I completely broke down in my car, wept before the Lord and confessed my fears to him. I chose to stand resolute in my trust in his good plan for Sophie’s life, regardless of the outcome of her genetic test. Whatever the results might be, his plan was GOOD. The next morning, less than 12 hours later, I heard from the neurologist. Her genetic test was normal.

In fact, as we got result after result, everything was normal. She was a hypontonic child with no clear medical explanation. Any number of things could have been wrong with Sophie, but as we pursued answers over that year of her life, there were none to be found. I will never stop believing that God touched her in those moments when we prayed for her, when she was anointed in prayer at church, the probably hundreds of people who have lifted her up in prayer countless times. I am eternally grateful to the body of Christ, because I believe now, and I did then, that our prayers were heard.

Although we had much good news in this second year of Sophie’s life, we had the the pain of seeing our child endure pain. How our Father must have felt to see his only Son on that cross. My heart broke for Sophie with every needle stick, every moment of being pinned down so that someone could examine something, all the fear and uncertainty and confusion she experienced from loud-noised machines, anesthesia, and, I’m sure, pain. What a year. And the barrage of testing that she underwent did not leave her life unscathed. When she was 18 months old, Sophie began pulling her hair out. She was diagnosed with trichotillomania. It was her way of coping with her world. Each bout of pulling always began with a change, usually my return to work. I guess that should make me feel good – she feels that I provide her stability and security in life. But, honestly, it made me feel guilty, or I should say guiltier. I already felt guilty for working and leaving her each day. Now my separation from her was causing her to pull out her hair.

This experience with Sophie taught me a lot about true beauty. And of course, more about acceptance. (It’s a big lesson for me!) And it showed me how much I cared about appearances. Way. Too. Much. My love for Sophie never wavered, of course, but I struggled with the feelings of judgment that others might have towards her. I never wanted anyone to think Sophie was anything less than a wonderful, beautiful creation of God. And perhaps I wasn’t giving people enough credit. There were and are so many wonderful people in our lives who have loved and accepted Sophie from day one. But I was always afraid of how someone else might not see her as the treasure that she is. Introspection showed me that perhaps I feared this because I was not very accepting of others, particularly when their flaws were evident. My journey with Sophie has helped me see that I need to be a much more gracious and accepting person. God, who is PERFECT, graciously accepts us — so, so imperfect — with no catch whatsoever. Who am I to be unaccepting of others?

In her second year of life, the biggest developmental challenge that Sophie continued to face was her lack of speech. By the time she was approaching her second birthday, many of her skills and areas of development were catching up or caught up. But not speech. At 20 months of age, she could not say one word. Many of her doctors and therapists assured us that this was pretty typical for a child with her type of muscular delays. Her body has always been so focused on breathing, moving, balancing, strengthening, that it just hasn’t had time to think about speech. And, we don’t consider the amount of muscular control needed for speech, either. So with Sophie’s hypotonia, a speech delay was a given. If you know me, you know that words are pretty important to me personally. How I longed to hear even just the word “mom” come out of my daughter’s mouth. This was a longing that would not soon be satisfied. And this has been and continues to be an area where I have had to exercise MUCH trust in my God’s goodness.

In another prayer email, I summarize what this year has taught us in our walk of faith. “We are confident that God has touched and healed Sophie in many ways since her birth, and we know that this [further healing] is not outside his power. Yet, I continually temper these desires with a greater desire to see His best plan unfold in her life. May we be ever accepting of what he has for her, even if initially it does not match our desires or plans. Above all, we pray for His best, and for good results that align with what God has for Sophie. Seems redundant to say that, because that’s obviously what he will do and how it will unfold. May we accept that with grace, in a way that glorifies him. And may Sophie’s life reflect his goodness through and through.”

This continues to be our prayer. Though I ask God often to give Sophie the gift of speech, I really just want her life to reflect God’s goodness. I trust his plan. That doesn’t mean I don’t have hard days, that my heart never breaks over her silence. But in my heart of hearts, I trust my Father.

The expectancy of new parents waiting on their first baby — there’s nothing quite like it. So much excitement; so much uncertainty; so much naivety. That was us. Totally unaware of how becoming parents would completely change our lives. In February of 2012, we were eagerly awaiting the arrival of our first child. I was pregnant from head to toe and completely uncomfortable. Ten days of bed rest were some of the longest days of waiting in my life. I just wanted to meet my sweet child and find out if I had a son or a daughter. It seemed as if he or she would NEVER come. But finally, one day after her due date, on February 13, 2012 (just one and a half hours shy of being a Valentine baby and sharing her daddy’s birthday) our sweet Sophie girl arrived. This warm day in February, we began a part of our race here on this earth that has changed us forever.

From her first moment, Sophia was not what I expected. You see, I was expecting a boy to pop out. No, we didn’t find out the gender, but I was convinced she was a boy. When she arrived, I exclaimed, “Oh! You’re a girl!” Please don’t get me wrong — I could not have been more thrilled to have a daughter. But I was surprised. Then, my sweet girl was quickly taken from me because her breathing was labored and shallow. After receiving some oxygen, she perked up some, and her sweet, warm, pink little body was returned to me for our first cuddles. Oh so sweet. Yet, during the rest of our time in the hospital, Sophia continued to have some difficulty breathing off and on. By the time we were due to check out, she seemed to be doing well. As naive new parents, what did we know? Obviously, exactly what every new parent knows — nothing!

Sophie’s first weeks were both challenging and frightening for us. Day after day and night after night we had difficulty with her feedings, and she continued to have difficulty breathing. Her breathing was so raspy, a horrible snorting sound emanated from her mouth. Any time we laid her down, she began this rasping, snorting sound. Was she struggling to get enough air? Those days and nights were terrifying. We had no idea why she seemed to be struggle for each breath. Finally when she was 8 days old, we rushed her to the emergency room during a particularly bad breathing spell. Of course by the time we got there, she had settled down and was fine. Even after several tests, the hospital could find nothing wrong with her.

After a short stay at Nationwide Children’s Hospital when she was just 12 days old and many visits to the pediatrician, Sophie’s issues began unfolding in more clarity. Sophie was diagnosed with severe Gastroesophageal Reflux Disease. She was put on an acid blocker within the first months of her life. In addition, she was diagnosed with tracheomalacia, or a floppy windpipe. This, we learned, was the source of her noisy breathing. Her acid reflux would trigger heavier breathing during feedings, which would lead to choking and gagging, and the horribly raspy breathing sounds that terrified us. When we look back now at videos of her, her breathing is so noisy and frightening that I can hardly believe it became normal to us. But it did.

And so for a short time, things seemed to settle down. With the acid blocker, Sophie began to feed better and started gaining weight. She began smiling and cooing at the appropriate ages. By 3 and 1/2 months she was rolling over. Now that she wasn’t in such intense pain, she was a charming little lady. Everything seemed great.

But in June of 2012 she went for her four month well visit, and everything was not great. Sophie was diagnosed with hypotonia, or low muscle tone, commonly known as “floppy baby” syndrome. And she was floppy. At four months of age, she still struggled to support her head when in an upright position. She was not able to hold herself upright in a sitting position, even with support. And so, we were referred see an neurologist at Nationwide Children’s Hospital to investigate the potential causes of this problem. This day was such a shock to us. We were numb. How could there be something wrong with our sweet girl? Of course a quick search of the internet revealed so many horrific conditions which caused hypotonia. I struggled not to be overcome by the fear and uncertainty. It felt like I was drowning.

Just after this appointment, I poured out my heart in my journal:
“There cannot be another pain so great as that of a mother’s heart breaking. In a moment like this, my mind races and fights to understand how, why… Although God never put sin or imperfection into the world, he ultimately allows what happens. My mind can’t wrap around the concept that God might allow something to be wrong with my sweet Sophia. And if he would, then why? My mind knows all the churchy answers, but they don’t satisfy the heartbreak that I feel. What I desperately want is for my little girl to be normal, healthy, whole, happy. I don’t want her to grow up with pain and struggle. I just want a sweet, beautiful, healthy little girl, and my mind can’t wrap around the fact that she might not be. My mind struggles to integrate a God who grants our requests with the fact that bad things do happen in this world. And then God spoke to me as I gazed into my daughter’s face: ‘Don’t you know that I love Sophie even more than you do?’”

A mother’s heartbreak. It is so real. Only by God’s deep love for me and for my family was I able to stand in the midst of this trial. My mother’s wise words taken from Ephesians 6 came back to me, “Standing firm, even if only for a moment, is still standing firm.” Resolved to trust our Father, we began to pray. We were waiting to see what the Lord would do in our sweet Sophie’s life.

Even at a short distance of two years from all these events, I can see how much God had to teach me through my role as Sophie’s mommy. From the very beginning, motherhood has been one giant lesson in “you are not in control” for me. Thank goodness that lesson is followed by “your good God IS in control.” While Sophie’s first year did bring me much heartache and fear, it also brought me much joy as I learned to let go of my need to control everything. (Yeah, I’m still working on that one.) She was developing on her own timeline. And it was hard seeing her in comparison to other children her age. The comparison game is a dangerous one. I remember our pediatrician telling me that no matter how all of this turned out for Sophie, that we would still enjoy each moment in her life. It seems simple and even kind of silly that I needed to hear that. But it was freeing to me. I’m such a planner. Things happen according to schedule in my life. Or at least they used to. In Sophie’s developmental timeline, I had to, well, throw out the timeline. In doing that, we got to enjoy each of Sophie’s big moments, no matter how “late” they might be. We found that just because she wasn’t “typical” that didn’t mean that we couldn’t enjoy her. (Imagine our excitement as she finally began to crawl!!) Again, it seems silly, but if you’ve ever been through something like this, you know it’s not silly. The possibility of a child with a life that is “not typical” is hard to swallow. At this point, there was still SO MUCH uncertainty about her future. Our neurologist had not ordered any tests and was just monitoring Sophie to see how she developed up to her first birthday. So we knew nothing. And we tried to walk in faith believing that there was nothing to know. Call me hard if you will, but there’s a big dose of acceptance that needs to be swallowed in a situation like Sophie’s. When your new child, your first child (you naive parent, you), turns out with a prognosis other than what’s expected, acceptance is most definitely a real process. It wasn’t about loving her, it was about letting go of my need to control everything, and of my illusion of a perfect life for my child. My love for Sophie never wavered. But I had to come to terms with the fact that God’s plan for her life might look different than mine. In spite of the uncertainties about her future, Sophie was (and is) my precious treasure.

Many times through this first year, I struggled and wrestled with the incongruity of what God seemed to have for Sophie compared to what I had had in mind, in my “perfect life,” you know. (To be totally transparent, this is still a struggle I have at times today.) Instead of seeing a perfectly developing child, I watched my sweet infant child with the talons of our fallen world digging into her life. Sophie didn’t do anything to deserve being born with such a struggle. She didn’t do anything wrong to deserve for life to be such a fight from right out of the gate. Ah, the shortsightedness of emotions. Three years later I can see the beautiful way that God has chosen to glorify himself through Sophie’s life. What a privilege that has been bestowed upon her. Do I wish pain for my daughter? Of course not. But do I recognize what suffering and struggling can produce? Yes. A resounding yes. I was not spared pain and struggles growing up (nor as an adult, as Sophie’s mommy), and those trials have helped shape me into who I am today. I would never want to deprive Sophie of the shaping needed for her to become a woman of God. Ultimately, I find that it comes down to trust. Do I trust the Lord with my child? Do I believe the words that he spoke to me that afternoon after her four month check up, that he loves her even more than me? Do I trust in his good plan for her life? I do. That doesn’t make any of this easy, but it gives me oh so much hope.