I would really love to tell you that when Jack was born we were on cloud 9, but really, it was more like a nightmare. We left the hospital after 6 days and were trying to wrap our heads around what all happened. From the traumatic delivery, to not knowing Jackson’s diagnosis. All we knew is that Jack had some different cranial facial features, a misshaped head & and possibly a cleft palate.
Once he was diagnosed with Craniosynostosis & Chiari, my first question was, “WHY?” Why did this happen. I remember telling the doctor “I drank a little wine when I was pregnant, and I think I took some allergy medicine.” Did I eat something or drink something that made this happen? It was a question I couldn’t really escape in my mind. He assured me that this diagnosis is not caused by anything I DID while pregnant.
Google. Surely google can help me. (Our doc specifically said “If you want to sleep at night, don’t google this.”) ok, thanks doc. As I type: what causes craniosynostosis?
The internet lead me to some speculations, but nothing scientific. Really it just made me more anxious and upset.
Genetic testing. This will give us answers. We waited 5 months to get results back. Jackson’s test results: Negative. “That’s a good thing, right?”
I just wanted to know WHYYYYY. And how. And what’s next. And what should we expect.
I remember tirelessly searching the internet and social media for anyone that resembled the way Jack looked. I spent hours going through photos, digging.
I was scared. And although we remained mostly positive, there were some very ugly moments. Anger towards my husband. Vanity. Control. Depression.
We’ve fearlessly prayed for our son, but I’ve had to intensely pray for myself. For the ability to release control, finally. To let it all go. To look up. To allow myself to be fully present and ok with the unknown.
The last 6 months have just totally wrecked me. But maybe that’s exactly what I needed. To be torn down completely so I can be rearranged, rebuilt, stronger & wiser.
I'm starting to become more comfortable with the unknown. The future for Jack. Because lets face it, having kids is the ultimate test to releasing all control. Every kid is going to have challenges. And I’ve learned that I don’t need all the answers all the time. I don’t need to know exactly what the future holds. All I need is faith. To enjoy the present. And to keep putting one foot in front of the other with a positive, hopeful attitude.
Jack has come so far! Each milestone he hits is like a huge a wave of relief. We have some upcoming MRI's and tests to see how things are going since his surgery in October. He could only need one more surgery around 12 months or he could need more. Or he could need none. We're not sure. One day at a time. Thank you for following our journey and praying along side of us! We are hopeful and excited about what the future holds!