Sometimes Things Are Harder

Sometimes Things Are Harder

It’s just hard, this thing called normal. And we want to share what we are up against, not so you can feel sorry for us, just so you can understand. One of the things that I personally have a hard time with is when family and friends fail to realize that it’s harder for families with children and family members with special needs to do some of the “normal” things that people do on a day to day basis. Oh yes, don’t get me wrong, we will try, our other kids count on it, but it’s just not going to be common when our choices are to get a sitter and leave someone behind or consider so many extra things. First and foremost – and likely the easiest to deal with – we have gear people! Our children have GEAR. Oxygen tanks, trach supplies, feeding pumps, special food, medicine, emergency kits. Where they go, their gear goes! But, with that handy pack mule (often known as ‘daddy’) we can move on, because this is where is gets a little more unpredictable and complicated for us. Some of our children can’t walk on their own and can’t sit in a stroller for a significant amount of time. Often we are asked to go somewhere where Dylan can “just stay in her stroller.” For some kids this works, you would think being up with the crowd is optimal right? It used to work for us, but we have turned a corner. Dylan is developmentally around 18 months and as with every 18 month old, she is fine while we are moving her stroller, but...
Dreamnight at the Zoo

Dreamnight at the Zoo

A couple weekends ago, my family had an opportunity to go to our local zoo with the annual event Dreamnight at the Zoo. This is an amazing, after-hours event where families of chronically ill and special needs children are provided tickets to the zoo where they will find many special surprises. Dreamnight at the Zoo is an International event that happens the first weekend in June. So where did it all start? The Netherlands! It’s grown so much from it’s start 18 years ago! From the Dreamnight at the Zoo website “Rotterdam Zoo initiated an annual evening ‘out at the zoo’ for children from the Sophia Children’s Hospital in 1996. This first edition of the ‘Dreamnight at the Zoo’ was especially for children with cancer. 175 children were invited and they brought their mothers, fathers, brothers and sisters.” It is meant to be a BIG DEAL of an event! Children are greeted by fantasy and costumes characters, they have animal interactions, entertainment. This year we saw every superhero and costumed character imaginable; it would be impossible to list them all. They included Disney characters, superheroes, Harry Potter characters, knights and princesses. There were even the newly famous Anna and Elsa (the only place in the park with a line, even though it was short). Having seen a few different Anna and Elsa’s online and right where they live, these were two of the best I have seen. Someone asked Anna about her singing and she belted out a little tune! They were gorgeous, I wanted to watch them with the kids all night. In addition to all of the...