“What does she have?”

You know how everyone tells you not to Google? Well, I’m the worst for that. The second we knew something wasn’t right during my pregnancy, I started to Google. What I searched for changed all throughout our journey – even up until today. Yes, I will admit that googling what we thought she had at the time caused me to go into full on panic mode on many occasions. The more I would read, the more terrified I would get, but I just couldn’t stop.

Then those searches turned into trying to find other people going through something similar. I wanted – I needed – stories of hope. I needed to know that no matter how bad a diagnosis could be, suffering and joy could co-exist, and that we weren’t alone. I know that everyone’s story is different, but coming across similar stories was and has been a tool in helping my heart grow and heal.

I’ve had enough people ask me what Hope’s diagnosis is. I’m always hesitant to tell people, because – well, Google. But it’s time. I hope that someone in similar shoes will stumble across my blog or instagram, and feel encouraged, helped and know that there is hope in the darkest of times.

Hope has been diagnosed with Aicardi Syndrome. Although Aicardi Syndrome is a rare genetic disease, all of our genetic testing came back negative. That is because Aicardi isn’t something passed down, but a new mutation that happens in the individual. Hope has been diagnosed based on clinical findings: agenesis of the corpus callosum (the bridge between her left and right lobes in her brain is missing), infantile spasms (seizures), scoliosis and an eye deformity. We had been given other names of things while I was pregnant, and when Hope was born, the first neurologist we met in the NICU told us about Aicardi. When I Googled it, I couldn’t believe that basically all of the things that were listed, Hope had. Aicardi Syndrome only effects girls. We were told that it is a mutation that occurs on the X chromosome, and because girls have two, they survive, while boys don’t make it sadly. Now, with all of that said – you have to take your googling with a grain of salt.

We know that girls with Aicardi Syndrome vary greatly when it comes to the degree of their struggles. We have both had to remind ourselves over and over again that God created Hope, fearfully and wonderfully. He is the only one that determines her days – not a diagnosis – just like the rest of us. So just like we all should be living, we take each day as it comes, and try our best not to worry about tomorrow. Although there are tough days, we have witnessed miracles. One huge one being that Hope is with us. She turned 7 months this week, and we were told she wouldn’t come home with us from the Hospital. He is always always at work.

Now that all of that is behind us, soon I will share with you what a typical day looks like. This was something that I was desperate to read about and see on my frantic Google searches. Could life still be normal? Were these families happy? I hope that an honest glimpse into our life will be just the thing someone needs to read and see.

Coming soon 🙂

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6 thoughts on ““What does she have?”

  1. I love the verse in Psalm 138:8, “The LORD will fulfill His purpose for me; your steadfast love, O LORD, endures forever.”That is as true for Hope as it is for you and me. He is faithful. I am sure that nothing goes to waste in God’s economy, and there are indeed other struggling parents who will find hope and peace in Christ, through your story. Keep tellin’ it like it is….He’s got this!

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  2. We have been praying for Hope ever since we found out about her “super powers”. Placing your trust in God coupled with your family’s positive attitude on life despite the circumstances will be the winning combination that brought you all through it with joy when you testify about her life many years from now.

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