In all my years, I never envisioned living life with steadfast grief. Not grieving the loss of a child. Grieving the loss of the life I saw for my child. Grieving the loss of the life I envisioned for my family. I am the firstborn...type A...the rule follower...a closet organizer. I appreciate and crave order. But grief has no playbook. And it leaves behind one hell of a mess. Denial Zella the zebra came into this world in mostly the same way as her older three siblings. There was no fanfare upon delivery, just another silently breathed prayer of thanks followed by a slew of sleepless nights and tongue-tied nursing struggles. The diagnosis that followed her arrival nearly 18 months later caught us off guard. We were determined to make the most of it, and honestly as an ... [Read More]
special needs
Another Year of ADNP Syndrome
As we head back to school this week, I am reminded yet again of the truly amazing team of physicians, therapists, teachers, and babysitters that surround Zella daily. Thanks to their encouragement, in the last few weeks of summer Zella has hit milestones we never believed she would reach, namely walking. Simultaneously she has struggled with new self-injurious behavior, but team Z has pulled through and everyone is working hard to cooperatively manage these new challenges. Zella is loving her new preschool program at Apparo Academy. Teachers and staff have already gone above and beyond to make her feel right at home in her new space. If it takes a village to raise a child, it takes a sprawling metropolis to raise a child with ADNP syndrome. The only way to fully recognize the ... [Read More]
The Things I Didn’t Say…
Today after Jake got home from work we decided to take the family out for a late lunch at Atlanta Bread and follow it up with some amazing shaved ice from Pelican's SnoBalls (highly recommend, by the way). The older three kids had been briefed about being quiet and calm while in the restaurant, but we knew that like always, Zella would be the wildcard. Luckily as we entered Atlanta Bread we were relieved to find that it was still as loud as ever inside and even an occasional outburst from Zella would potentially never even be noticed. We ordered quickly and found two tables next to each other in the far corner of the restaurant, away from most of the other patrons. As we waited for our food, the older kids managed not to beat each other (a sheer miracle) and Zella was ... [Read More]
