I am having the hardest time accepting the fact that every single aspect of our lives are impacted by cystic fibrosis. Normalcy is hard to come by and there are only so many people who “get it” and those that “get it” must be kept at arm’s length for fear of cross contamination.
I love that I regularly text and chat are more experienced CF mom. She keeps me grounded and makes me feel “normal”.
I love that I have hundreds of CFer’s and CF parents in my life that I can reach through my social networks. The other day on instagram I did a 5 things about me post, then after tagging a few others, found my clone of a CF mom right down to the severe anxiety.
Doing anything in our life takes so much planning, kinda like the planning that comes with a newborn, the many things that must accompany you on any trip out of the house plus the rigid schedule. I much rather just stay home than have to deal with all of that. ”What time did we feed him? What time do we need to feed him again? Did he have this medication? What did he poop look like? What did it smell like? Was it super greasy? Do we have all the food we need for his next meal? His spoon and chair? Oh and don’t forget the ipad otherwise we won’t have anything to reward his bites with? Oh, and Teagan.”
No plan can be set in stone because surprises always arise. Like frosty. I’ve been planning on building a snowman since the first snow storm of the winter. It never happened, until today. I was determined to make it happen. God help me if that snow melted before I had a snowman standing outside my door.
I had no time to search for the appropriate attire because if I waited too long, I would miss my opportunity, it would be time for the next meal. So Miss Teagan had to wear her brother’s old snowpants, and my gloves. And Nathan just got sweatpants, my gloves, and a hood. But one thing that went right, is the fun my kids had, the smiles, the laughter, the eating of snow, the multiple carrots stuck into various places of our frosty, all of which made me happy inside.
We experienced so many normal winter activities in one day that I almost felt like we were living normal lives. We came inside, I forgot about the fact that we should have done breathing treatments already and said for this hour we are going to drink warm cocoa with our pinkies up, of course.
And even if we did breathing treatments late, we still did them. And now if the snow continues to melt quickly, I will feel satisfied knowing frosty is standing by our front door, wearing one of my favorite scarves.