My beautiful daughter Jordan was diagnosed a few months ago with a rare structural brain abnormality called pachygyria. Jordan’s brain wasn’t formed correctly, so where there should be folds and ridges, Jordan’s brain is flatter than it should be and the folds she does have are thicker than they should be. This abnormality in shape causes developmental, speech and coordination delays as well as seizures. In the months since we discovered this condition, Jordan has made huge gains in progress, thanks to her speech, occupational and physical therapies. Her therapists are just angels in our lives who have given her new skills and have given us hope that maybe Jordan will be able to accomplish more than is expected for someone with her disorder. The last months have been long and hard and many days are hearts are heavy with the weight and reality of her diagnosis, but little Jordan moves through life with sunshine and rainbows and brings joy to even the hardest of days.
I have been wrestling with the “special needs” label that we have been given. Some days I find myself embracing it and some days I feel troubled by it, so I decided to do a photo shoot of my little gal celebrating her beauty and joyful spirit. The idea came to me after we did a 5 day hospital stay for an extended EEG to determine if she was having seizures and Jordan had to wear a little crown of leads and gauze and wires for five days. You would think she would be annoyed by being trapped in a hospital room for so long with stuff all over her, but she handled it all with happiness, just as she does everything else. Unfortunately, her hospital stay wasn’t productive as we didn’t observe any “typical” events and therefore were unable to monitor them for seizure activity, so we will likely be doing another study in the future. While spending so many unproductive days in the hospital, I started dreaming of a different kind of crown for little Jordan and a beautiful flower crown was donated to us by an amazing florist, Mandi at Butterfly Petals (ButterflyPetals) for her shoot. Jordan loved wearing her new crown and playing in the forest, rather than playing in a hospital room. My beautiful girl is a blessing to us and to every single person who meets her. She’s just a ray of sunshine and delight with infectious happiness that makes everyone smile.
Though we’ve come so far in a short period of time, Jordan has a long way to go. She has a lifetime of challenges ahead of her. Seizures, hospital stays, therapies, doctor appointments and who knows what else. The next step for her is genetic testing to determine if her brain abnormality was caused by a genetic mutation or just a fluke of mis-development in the 2nd trimester. Jordan’s genetic testing is costly but necessary so I’ve designed a shirt that will help support Jordan and her needed testing as well as her ongoing therapies. I hope you love the design! Check it out HERE.
As I’ve struggled down this special needs road, I’ve found myself among the most beautiful company of supporters and families who struggle as we do. I’m proud to announce that One 3 Photography will be launching a division to serve special needs families through photography. More on that soon … in the meantime, enjoy my beautiful Jordan who was fearfully and wonderfully made. Thanks to everyone who has prayed for us, thought of us, encouraged us and supported us. We are so thankful for you.