Broken Expectations

This post is a follow up to my two posts, Re-Evaluate Everything and Talking about an Early Exit. Many of you have asked to hear more details about the journey that brought us here. Many have also asked to hear Sarah’s perspective through it all. Well, she delivered. In a powerful way. To me, this is particularly powerful for those of us dealing with the unknown. About our health. Our children. Our future. All things.

Enter Sarah… 

A Baby Girl  

A mothers joy, her future best friend, someone to get dolled up and flaunt around. I had the greatest of expectations for mine. All vain. Willa was the perfect little baby girl. She came out an even 9 pounds and had a beautiful olive complexion. Her thighs were so chunky compared to the rest of her body it just melted my heart from the very beginning. She also had a very slight cross eye, which was (and is) quite endearing. We had our normal adjusting period. Bringing home a new baby to a 23 month old brother who is “all boy” took a few days of adjustment. For Rowe, it was certainly not love at first sight. But few things are with him anyway.  

Willa slept “normal” and ate “normal” at first. Her demeanor was so chill and laid back. We had very few hard days early on. As time passed, we noticed that she was not the best sleeper. As in, she really never slept during the day. I thought it was the fact that we kept her on the move, on her brothers schedule that made it hard to get into a routine of her own. As more time passed, we noticed that she just seemed, well, for lack of a better term, lazy. She was quite content laying on her back and looking up at the lights.  

All the while her cross eye was getting a little more pronounced. One weekend my sister was in town and was trying to get her to track her fingers. Willa had no interest in it. So Anna told me, very emphatically, that she thought willa was blind! WHAT?? I mean, I felt like something was wrong, but blind? No way. Low and behold, Willa would not and could not track anything.  

The Journey Begins

We went to our six month check up, which resulted in getting scheduled to see a pediatric optometrist. Willa was still not rolling over or really moving much at this point. Weeks went by before we could get into that appointment. When the day finally arrived, we left with a laundry list of what “it” could be, but it was too early to tell if it was any of those things. In other words, everything checked out fine for the moment. I can say for sure though, those early hypotheses were brutal. 

We were then referred to Arkansas Children’s Hospital (ACH) to a neuro-ophthalmologist to have a MRI. We waited for weeks (again) for that appointment. Of course ACH called during the busiest week of my job and told us to come for the MRI the next day. So of course we dropped everything and went. Willa did amazing going under sedation. She is such a sweet little spirit. She laughed the whole time until she finally just knocked out! All checked out with the MRI…normal results again.  

Next up was an appointment with the neuro-ophthalmologist. Luckily, he had the foresight to set her up with a retina specialist and a geneticist right away. The neuro-ophthalmologist ran as many tests as he could. Took measurements of her “drift”, etc. But we were advised to wait until she was one year old to do an ERG. Again, no abnormal results. So we waited until she was one.  

During this time we started physical therapy and occupational therapy. It was difficult to understand why this was necessary, particularly for Mark, because we were so focused on her eyes rather than physical delays, but we went anyway. Willa enjoyed her OT activities, like brushing and stretching. But I was so overwhelmed at the added responsibilities that were being placed on me, like brushing and stretching her three times per day, in addition to the therapy. First I had a baby that was not functioning “normal”, and then I was told I had to be the one to get her up to speed? It was too much for this non-medical, non-technical mama.  

To this day I believe brushing has made the most significant difference with Willa. I literally take a small, soft brush back and forth and up and down her legs, arms, back, feet and hands repeatedly. It awakens her sensory system and has made her so much more aware of her extremities. She is less sensitive to touch and feel after being brushed.  

As for PT, however, Willa really hated it from day one. As I said earlier, she was and is very content just laying on her back observing the world around her. But thankfully her PTs wouldn’t accept that attitude. They pushed her, and sometimes me, to the max during her sessions. Willa would scream and cry, and all the while, I’m trying to guess what is going on with her, why she’s so unhappy in therapy. Does it hurt her? Can she see what she’s doing? Is she capable of doing what they’re asking of her? I’ll put it this way. You cannot watch Willa in a therapy session and then want to go home and sit on the couch and eat a bag of Cheetos. She is so inspiring with how hard she pushes and works.  

She turned one. Still no answers. At this point, she could hold her head up for extended periods of time. Progress. No rolling, crawling, or sitting though. Not that much progress. Her eyes had tested “normal” and that’s all we had to go on. So finally we were scheduled for that ERG. I bawled like a baby.  

Through all this, since Willa was about 5 months old I have not been able to keep myself together. Something is wrong with my baby and no one can tell me what it is. I was falling apart at the mystery of it all. Willa went under anesthesia again for the ERG and did great again. And once again, normal results. We got in to the retina specialist next, and once again, normal results. The anxiety was chilling really. 

In the meantime, we had also been referred to a neurologist at ACH, who ran a panel on Willa but found all the results were “normal”. We were instructed to not contact them again until willa started regressing…seriously??  

Finally, one fateful day we got into the geneticist. He talked to us about our family history. He told us he could not promise he would find an answer, but that he would try. He ran a panel on Willa, and to be honest, I have no idea what it was. Those results came back normal. So he suggested that we run a test called Xsome Sequencing. This apparently is the macdaddy of all genetic testing. It required Willa’s blood, Marks blood, and my blood and was supposed to tell us everything we might possibly want to know about what’s going on in our bodies. Cue the extra life insurance! So we drove up to Little Rock, gave our blood, and were told it would be a 3-6 month waiting period. Awesome, right? So hopefully by Halloween we could expect to know something. Oh, and the kicker is, even though this test was supposedly the best of the best, we had a mere 25% chance of finding an answer. Awesome again.  

At the time, we felt like this was our last resort. Remember Willa was 15 months old by then. She hadn’t spoken. She hadn’t really rolled over on her own. She couldn’t sit up on her own. She certainly hadn’t stood or walked like so many kids at that age do. And we were still feeding her every bite of food she took. So we patiently waited on the test results. 

All this time, we’ve had everyone we know praying for Willa’s eyes. We had received the sweetest cards and texts about having a blind child and so much advice on raising a visually impaired child. We are forever grateful for those messages, but part of the reason for chronicling this journey is to explain the reality of the situation to those who still think Willa can’t see. Or is visually impaired. She’s not either of those things. 

August 7 came, and we had a fury of a morning. By lunch time we had received a phone call from our geneticist with an answer. An answer! My mommy heart jumped with excitement. The unknown was seriously eating me alive from the inside out. I had to put all my things down at TJ Maxx and go to the car to finish the call. The doctor told me what the disorder was called and immediately encouraged me not to get online and look it up. The phone call was a lot to take in. And really what can you process when you are sitting in a TJ Maxx parking lot anyway? I feverishly wrote notes because I knew Mark would have questions. I look back at them now, and they make absolutely no sense. Did I mention that I’m the worst at these kinds of things?! I went to pick up Rowe at school when I get off the phone and ran into Mark on my way. I just lost it. What I couldn’t get Mark to understand during those early moments, and what I kept replaying over in my head, was how many times the doctor referred to death and the “end of life” for Willa. WHAT?! My expectations were set on this child growing out of whatever this was and growing up to live a full happy life.  

Broken Expectations 

A lot changed for our family on that day. Our day to day didn’t. Willa didn’t. Rowe didn’t. But we lost that glimmer of hope that this was something she’d grow out of. We lost hope that we were ever going to have that “normal” family. I lost hope that I would go back to work. I lost hope that therapy would not be my norm. I lost hope that I would get to help Willa put on her wedding dress.  

As the days and weeks have passed, I have found new joys and learned so much about the expectations we set on ourselves. I get to see the face of Jesus every day in this child. I get to see His mercies with her and with refining me every day. I get to see grace in my marriage where there was very little before. I see appreciation for the messes and things that used to make me growl under my breath. I have learned that expectations are man-made and made to be broken. It is only when you can adapt to their brokenness that you have succeeded. I struggle daily with the idea that comparison is the stealer of joy. I have learned that I have been letting Satan attack my family, my marriage, and my mind for far too long. I am broken and weary. The one thing that stops me in my tracks and pushes me forward is knowing that I serve a God that has watched his child suffer. He has seen His child die. I will witness these very things. And I am not alone.  

For today we move forward. We have a diagnosis, and I am forever grateful for that. I am terrified. I am humbled that God chose us to walk this path. And I am joyful that I get to love on my sweet angel for as long as I possibly can.  

Mark has said it before, but we truly cannot thank you all enough for everything you have prayed and sacrificed on our behalf. We are so very blessed!