I don't often refer to Asher as a "special needs" child despite his diagnosis and medical history. To me, his mama, he is my little buggaboo....my precious miracle who lives every day with laughter and smiles, kisses and lots of hugs!
With that said, our world is different than it was before Asher was born. A world filled with a whole other language (that we had to learn on the fly), specialists for parts of the body that I did not even know existed, and decisions that are on a whole other scale...those decisions weigh far more than I ever thought possible! I don't exaggerate by saying, the decisions we are often required to make can lead to life or death situations for Asher. The symptoms that seem unimportant in a medically stable child, can change Asher's life forever given his medical conditions. His heart and his breathing has the most to do with those decisions, as it turns out, bother are rather important to living!
I have found it challenging lately to explain how this affects a person long term to those who have never been in this situation. It's not the same as having a child with an ear infection and after 10 days of antibiotics life goes on as per normal. It's a life long commitment of daily choices that affect Asher's well being.
Our life is no longer filled with what now seem like easy questions "should we feed our children white or whole wheat bread?" "What is an appropriate bed time for a 6 yr old?". It is filled with things like, will this medicine I am giving Asher so he can breath easier raise his heart rate to a dangerous rate? How do we treat bronchitis when nothing is working and he isn't able to breath well? If I go to sleep, will Asher wake up in the night with his heart racing and irregular and I'll have to have the presence of mind to call the Cardiologist on call, pack a bag and drive to London at any given hour? How will Joel and Calla feel to find their mom and brother gone with the time of their return unknown? How do we maintain "normal" when everything isn't very normal? How do we socialize with people without fear of picking up germs and causing Asher to become sick? How do we keep all of us healthy during the fall/winter and still continue to go to church and worship with our church family? How do we explain to our extended family, yet again, that we can't have a family function at the family farm where we live because someone is sick and we don't want Asher to catch it from them? How do I treat Asher like a typical boy when all I want to do is put him into a bubble!? How do I answer the question "how old is he" when people in public ask....because when I answer with the truth, they give me a blank stare, and even sometimes ask then why is he so small!?
This list of questions is not exhaustive! It's a glimpse into the things that we think about almost daily. And the last thing I want is for people to feel bad for us. We have an incredibly blessed life, full of love and hope (and adventure!). I do, however, wish I could find a better way to help people understand that it is a heavy weight at times and it's not always easy.
On most days, Asher looks so healthy and well that I think it's difficult for people (physicians included) to remember that he has a host of extra needs and complications. Our lives don't continue on "as per usual" when we leave the doctors office with a cold.
Tonight, as Asher is in the hospital to be seen by the pediatrician on call...I am thankful for the care he receives. It's hard though to be home with Joel and Calla while Jesse waits with Asher....