By Meredith Grimes
Our first National Foundation for Ectodermal Dysplasias (NFED) Family Conference was a life-changing week. We were new to the diagnosis and feeling completely overwhelmed. We had a list of questions a mile long. What is hypohidrotic ectodermal dysplasia (HED), what does it mean to be a carrier, what do we need to do for Carter, what kind of future will he have, and so on and so on.
We brought Maura, 4, and Carter, 2, with us. They had a blast at Kays’ Kids Camp! Having the kids safely taken care of, so we could focus on getting our questions answered and learning about this whole new world, was a godsend. The sessions were very informative and there were a number of options that covered different aspects of ectodermal dysplasias. Jake and I split up and went to as many sessions as we could. Then, we would fill each other in over a meal or during some free time.
We also took advantage of meal time to sit with different families and learn their stories. If they had kids older than ours, then we asked for any helpful tips/tricks. Personally, as a mom, the Family Conference is a “free” zone. I can say the ugly truths and frustrations and know I am totally and completely understood and not judged.
As for why you should keep coming to the Family Conferences – change. Sometimes there is new information to be shared. Even if you sit in on a session you’ve done before, you or your family has changed and that same information gets taken to a new level. Maura and Carter grow and change.
We Are Lucky
We are extremely fortunate to live in a small town where the kids are curious but not cruel. Even so, I think Carter and Maura need to see that there are kids like them. To have the opportunity to talk to, play with, and share time with them is priceless. I also find it invaluable to be able for them to see the affected teens/adults and have a chance to ask them questions. I went from feeling overwhelmed and helpless at our first conference to feeling confident enough to help guide a couple new moms at the last conference we attended. It’s a family we would be lost without.
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Meredith Grimes is a guest blogger for the NFED. She and her two children are affected by hypohidrotic ectodermal dysplasia.
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