This weekend we had an engagement for our oldest daughter. It was a lovely affair with family, the bridal party and close friends. Of course, AHC reared its ugly head and Kathleen went into an episode an hour before the guests started to arrive. She never joined the party.
We decided to have Kathleen’s aide be present to take care of Kathleen so that I (because it is usually me she wants) could be free to meet my future son-in-laws family and just mingle with our guests. It is hard not to feel guilty that we are enjoying ourselves when she is stuck in her room. Many family members and her young cousin stayed for a time with her but it just wasn’t the same.
With Kathleen’s anxiety increasing, it is so hard to plan for these momentous events. No matter how we try to maintain normalcy and keep calm, we can’t control how she feels nor can we skip these precious moments.
Let’s continue to raise awareness, raise funds for research and work together to find a treatment for our kids so that they can participate and enjoy the events around them!
Share your experiences with us in the comments section. How do you keep moving forward when AHC episodes come up?
My name is Shaun and my daughter who is turning 11 years old are diagnosed with AHC since age of 2. My family is looking for a community of family with AHC to talk and share experience of how to handle our child with this illness. Especially in the area of behavior management. But I noticed the last post here was dated back in 2016. Is there any new or latest website that you might be using?
Appreciate and hope to hear from you.
Hello Shaun! Thank you for writing. We do have a support network on Facebook. “AHC Support Group”.
Unfortunately our blog, AHC 365 has fallen a bit behind due to all the work we have been pursuing.
We hope to get it back up and running near the Winter of this year.
Please contact us with any questions. Lynn Egan is our family support chair, and former president. a wealth of knowledge.
Please engage with the community at our facebook site. so much support there.