In the Beginning – Part Five
There was a lot going on behind the scenes that I found out much later. My aunt, who has had plenty of experience in the medical world as a patient and parent, sent my sister this email with some wise advise:
Heather and Garreth must be perceived as strong, capable decision makers at all times. Every single time anything is discussed with them about Aidan, they must ask about all possibilities associated with saying yes or no.
Keep a notebook with dates, times, decisions, and who said what. (Totally did that and it was so helpful with the amount of people and chaos involved in his care.)
Hold the doctors responsible for explaining everything they know and what the potential next steps might be. (I maybe left a few notes in Aidan’s crib reminding them of what test results we were waiting for, in case they rounded when I wasn’t there).
Don’t let anyone refer to Aidan as a case – it de-personalized the situation for the doctors and allows them to think more freely in terms of experimentation. (Great advice and it never happened. The docs were awesome).
Obviously all of this must be done with a great deal of care and appreciation of the medical team’s efforts. In the end, they will respect them and KNOW that they can’t mess with this young couple.
I also received this email from a dear friend who experienced a medical crisis with her son:
I really feel for you because I remember what it was like when K was sick. R (husband) and I were all each other had and we were the only ones who really understood what the other was feeling. Each day feels like a year and a week feels like forever. There is no concept of time – night or day. The adrenaline is going for so long, you just are exhausted. I had moments of being so strong, I didn’t recognize myself and then later I would totally fall apart. I didn’t care about showering, eating, sleeping, only that my baby would get better. And here was this little baby that we didn’t even know yet, working so hard just to exist.
I just wanted to tell you this because I wan to let you know that you’re not alone. You will get through this, and you will be stronger after it – although I know that seems hard to think of now.
*This is the story of Aidan’s first few months. It starts here. My present thoughts are in bold.