Having a child with a life threatening condition is scary. A parent worries about every environment where the child exposed. Preparation and planning are important for every trip.
In the early days of being diagnosed, we were very protective of our daughter. In part because we did not know what we were dealing with. Also, she was be putting on meds that did not always help. We slowly learned that others were not as protective of her when she was outside of our care, no matter how much we prepared them. Yet, there was fear, fear of not knowing what would come. All the what if's.
We did not live in some far remote area where we could be in a cabin for half a year and have no where to go the other half. We were in a sizable city and very active. Our child was a social butterfly, she had experienced eight years of being out and about, being social prior to her development of Cold Induced Urticaria.
Because of her diagnoses and the limitations that come with them, she became a prisoner in her own home. She could only be out when her father and I could be around. She even had to be homeschooled. Her only opportunity to be socialized was at church, during the Miracle League season and through her violin lessons. She went from being very outgoing prior to the health issues, to being withdrawn. Her hope for getting better was gone. In just a couple years, her childhood was gone.
We were able to get her on medications that helped stabilize her conditions. We decided to allow her to live as a child and not as a prisoner; as much as reasonably possible.
Swimming - A big no, no! Yet, she can swim for up to 30 minutes at a time in an unheated pool while on her meds. On a 100 degree or higher day, she can swim for an unlimited amount of time. We still have to go through a routine when she comes out of getting her dried off immediately. However, she got to be involved, she got to be a child. We even take trips to the beach (rarely) where we just sit on the beach, no swimming. She still gets the excitement of building sand castles and digging holes in the sand, chasing the birds.
Sports - This one is a biggy. It impacts her on every front. However, with the support of those in charge, modifications, sports can be safe. We chose to allow TLC to participate in the Miracle League. She is able to play baseball each spring. With her team, kids can play when they are able and don't have to worry when they can't. If TLC has to leave mid game, she can. No problems.
Shopping - The doctors were completely against us buying a wheelchair for our daughter who has Orthostatic Intolerance with severe blood pooling and Ehlers Danlos. However, since we bought it, she has been involved in every facet of life, once again.
Trips out of town - Wow this is a big one. Put in someone else's care when we as parents cannot be around. This one is still hard, because it depends on the willingness of those in charge of watching the kids to ensure her safety. Some just don't get it. But if you get to send one off with your child that gets it - WONDERFUL! If we don't have enough faith and can make the trip, we will go with her on out of town trips. She doesn't make every trip, but some. ANGER ALERT! We as parents should not have to be with our child on every trip because other adults don't want the worry.
In every case we are careful. We plan and strategize and prepare for safety, but we choose to live, we choose to let our daughter live. We gave our daughter her life back. She is okay with it and understands that there are consequences. She accepts the consequences from overdoing it. But she is happier - she gets to be the child (ahem - teenager) she was meant to be.
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