I live by the saying, “Cross that bridge when you get to it.” I am much more comfortable living in the now and find myself all too often getting anxious about the future. I like knowing what to expect, and I am a creature of habit.
Having said that, it probably will not surprise you to know that our days are pretty routine. We get up, June has her pills, we watch Sesame Street, we run an errand, have lunch, June has another pill, she takes a nap, we play and dance to music, greet Daddy at 5:30, we have dinner, read books, then bath time, June takes more pills, and she goes to bed. This is our normal.
In fact, just last week my husband, Tony, came upstairs with her bedtime dose and said, “Wow, I don’t even think about it anymore. It’s just…what we do.” I smiled; my thought exactly.
The next day, I took June to observe a Mother’s Morning Out program. June loves kids and I want to encourage her social development. I also decided I was due a couple of hours to myself once in awhile. She is only a year and a half old, so this is not pre-school, just a program available for younger children to get together for a few hours on the day of my choice. So we decided to check it out before signing up. They play, they have snack, go for walks. Sounds easy enough, right?
What’s that? Oh I forgot…they also get sick! They sneeze, they develop fevers, they throw up. My friends have their children in different programs, and as much as I love hearing about their artwork and new friends, I also can’t hear enough of “all the kids at school are sick right now….he can’t get rid of this cough…he caught the stomach bug…she has a high fever.”
So this little room full of dollhouses, bikes, and building blocks suddenly turned into one huge bubble of ICK! You know in the commercials where they show you the little bubble of ‘this is what is on your kitchen counter’ and show you those little microscopic worms? Well, that dollhouse wasn’t looking so cute anymore!
I started to sweat. I began to tell the director of June’s medical condition and fought back tears. I guess it’s hard saying it out loud. You know-what it really means to be adrenal insufficient.
Other parents may shrug their shoulders when they say, “oh it’s just another cold.” But to us, it is not just a cold. To us, it is watching June like a hawk and feeling her forehead every hour to make sure there is no fever. It is staying up with her until midnight because the extra dose of medication is equivalent to me drinking three Red Bulls for dinner. It is constantly wondering, “is there something else we are missing…what if she spikes a fever in the middle of the night…what if she throws up and needs an injection…”
Oh, the ‘What If’ game! I played this game the whole weekend after visiting Mother’s Morning Out. It was exhausting. I cried, I yelled, I had to stop and catch my breath. The reality of what could happen had come up to the surface and was a little too much for me to bear.
I kept telling myself that June will get sick, and we will have to stress dose, and the hospital is 18 minutes away if we need it. But when she does get sick, my world gets turned upside down because I no longer know what the next day will bring. Our routine gets thrown out the window.
Tony and I know what we are doing (for the most part), and we know what to look for and when June needs more medication. We know what can lead to a crisis. I once could tell that June was getting sick just because she had bad breath the day before! Who else is going to know her like I do??
Like Tony said, this is what we do. It has become our normal, and I like knowing what to expect day after day. But seeing June grow up and preparing her for life outside of our home-of-hygiene sure adds a new dimension to our “normal,” and I just question whether or not I am ready for this step.
I tell myself, “cross that bridge when you get to it,” but now that first little bridge has approached and there is a part of me that would rather jump off than cross it! Well, I can’t hold June hostage forever. I guess I will have to come to terms with our new “normal,” now putting my trust in the hands of other adults, accepting the fact that June will get sick, and embrace the unknown.
I will cross that bridge, I just hope that June holds my hand the whole way!
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