Many times I "forget" Mighty Z is a medially fragile child. Not to say that I forget that I have to "plug" her in at night, or sometimes have rough nights due to something stupid like a bad pulse/ox probe. There are even times when Mighty Z will need supplemental oxygen for no reason at all. All these things I view as my families "normal" life.
I get wrapped up in getting up and getting Mighty Z and La la ready for school, volunteering, cleaning house, mowing the lawn, homework, piano, tumbling,cheer, ect. I blow things off if I hadn't slept in a couple of days saying oh well it is just the nature of our life.
Every once in awhile our world gives us a reality check. When CCHS rears it's ugly head and we are forced to face once again that the only reason Mighty Z is alive is because of technology, hard work, and above all GOD.
Not to say when this happens My man and I go bananas and freak out when we need to go to take Mighty Z to the ER. No we calmly get our stuff together making sure we bring everything we think we would need for a extended stay at the BIG house.
But still sitting in the ER and then being transported to the PICU, brings back all the feelings one tries to push back into the dark resses of one's mind.
Every time Mighty Z is admitted to any area of the hospital. I have to give an account of everything that has happened to her medically for the past 11 years. The fact that nobody knows anything about her disease or her machines,I really don't mind that. It is just that it reminds me of how hard this road has been for Mighty Z.
I get that she doesn't know any different her life has always evolved around doctors and hospitals. I just wish that the hardest thing she would ever go through was a boy dumping her.
I do forget about this disease a lot simply because it doesn't define who or what Mighty Z is. It doesn't make it less painful for me to watch Mighty Z be scared and in pain because we have been doing this for 11 years. It also never gets easier watch your baby go into respiratory arrest,because of stupid nurses.
The only thing that does get easier is reaching out to other parents in the PICU who feel as I once did. That there is no hope, there is always hope