Lessons learned – when you are waiting for a call that you know is bound to make you cry . . . use waterproof mascara and consider leaving the contact lenses at home for glasses. The lint on the Kleenex gets in your eyes and then it is just downhill from there as you try to wipe away the black streaks of mascara without losing your contacts. Ultimately, you will look like a pinterest fail for how to make a smoky eye.
13 long days after hearing that Genevieve would require her 2nd open heart surgery, I finally connected with the scheduler at Boston Children’s Hospital. We will move forward with her pre-op EKG, bloodwork, X-Ray and consultations on January 13 (there is that number again – let’s hope it is a lucky 13) and then her surgery will be on January 14th. Assuming that she stays healthy, no fever or cold in the week before. Did I mention it will be in January?
For the past week, I have repeatedly said that all I wanted was a date. To put a date on the calendar and then we would figure out the details. That I could not stand the waiting and limbo. So I should be relieved, right? I have the date and I put it on my calendar, I reached out to my work, family & friends and everyone is moving together to see that we are all supported. Except that I am not relieved – it all became too real very fast.
This is my blog and I will cry if I want to! So, let’s be transparent for a moment. Right now, I am angry. It is not fair that she needs to go through this again. She does not deserve this pain . . . January 14th will not be the last – it is just to hopefully get us to the teen years and then we get to do it again and maybe again as an adult. She will be a cardiac patient for her entire life. The ultimate mommy guilt? What the hell did I do wrong? I have told numerous parents who have asked this exact question, that it was not their fault, that they did nothing – that sometimes things just happen – 1 in 100 times a child is born with a congenital heart defect. Yet, I still find myself going through everything that I ate, everything that I touched, everything that was in my environment and I wonder, what I did to cause this to happen . . . I am sorry Genevieve.
Thank you to all my friends and family that have reached out to me today. Took me aside and just listened to me, gave me a hug, sent me text messages, reminded me to be good to myself, scheduled “Girly Day” out, and left posts filled with love & prayers on Facebook. Near and far, you all are a major part of what will get us through this. That being said, tonight I am angry and I am allowed to be pissed at the universe.
Tomorrow, I will be thankful that we will celebrate a Merry Christmas and Happy New Year before we hand her over to her surgeon. Tonight – I have no Christmas spirit, no peace and no “we’ve got this” strength. I’ve switched out the work clothes for a comfy hoodie and yoga pants and washed off the mascara so no more will run down my cheeks. Tonight I am feeling exhausted, ugly, mean and not anything like all the pretty pictures on Facebook. And I have decided, that it is ok.
PS – I can’t end this on a complete downer note . . . Genevieve & Harry have the Christmas spirit and I know that she still has got this!