What a Week....

It’s finally the end of the week and I can truly say this was the hardest week at Hopkins we’ve had since Max’s aortic repair in the summer of 2007. Everywhere we turned the news we received was not what we hoped for, appointment after appointment I could feel the life being sucked out of me. We came hoping to meet with the doctors, both old and new, have our check-ups, and be done for the next year. Instead we have learned that we need to come back to Baltimore in March for eye surgery and May for open-heart surgery. How does this happen? How do we go from our “once a year” visit to this? Logically, we are well aware of Max’s medical issues, we’ve always known what was on the horizon but when the horizon is closer than you think, when the future becomes now, logic flies out the window.

After talking to Max’s cardiac surgeon today we realize that his valve repair is necessary sooner rather than later. Max’s aortic valve insufficiency has worsened at a rate of about five percent in the last few months, now I’m not great at math but at this rate of increase even I know we have less time than we hoped for. As the doctor spoke I simultaneously held back tears and thanked God for Girl Scout cookies because it was the box of cookies that Dr. Vricella gave to Max as we sat down on his sofa that kept him happily occupied and unaware of the fact that his mother was falling apart. This was especially important because Max has been commenting all week that every time we go to see this doctor my face gets red and I cry. Thankfully the one time he craned his neck around to look at me I was still composed so he returned blissfully to eating his cookies. All that’s left at this point is for Max’s case to be presented at Cardiac Conference for review as to the how, what, and when. We are hoping to make it to May to give Max the most time possible to recover without missing school but at the end of the day if they tell us “now” than “now” it shall be.

I don’t even know what to think about everything that has happened this week. I know I’m exhausted which means a rational thought process is difficult at best. I’m feeling overwhelmed but I realize that what I think, what I feel is just not important. What’s important is Max. Every time I look at him I choke up thinking about what he’ll have to endure. He’s a baby, he’s only nine years old and none of this is fair. Tonight my heart is broken for him and I am praying for the strength to get him (and all of us) through the next six months.

Tomorrow we go home and with a little luck the miles that separate Arizona from Maryland will give us the ability to see all of this for what it is, a painful but necessary part of Max’s journey.