“Hope is a good thing, maybe the best thing, and no good thing ever dies.”
-Andy Dufrane, Shawshank Redemption
Hope is a theme that has come up a lot over our medical journey of the past 7 weeks. We started with all the hope in the world, and then had to face some harsh realities. I felt guilty at times after I lost my hope and explained the finality of our situation to family and friends, but hearing the “what ifs” from people who didn’t have all the information was frustrating and painful. It felt more reassuring to prepare for what we did know and accept it. We purchased a grave site, we designed a headstone, and we took time to think about all the ways that we could honor our soon to be lost baby with memories that we could collect in our short time with her. As horrible as that is, it gave us a little view of the future. I have always been someone who squirms a little bit when I cannot imagine the future, although I have taken many leaps in my life that showed no visions of the future. I’m proud of all those moments that I leaped, and even prouder of where I landed.
I never could imagine my children before they were born, and I always said when asked if we were finding out the sex of the baby, “yes, there are enough surprises for me.” Our first child was born with a full head of beautiful copper colored hair. He looked like he had gone to L.A., and gotten it highlighted and styled for his birthday arrival. He had a fiery little attitude to go with that gorgeous head of hair. His birth was also not what I expected; it was a lot more arduous, long and medical than I expected for an uncomplicated pregnancy.
Our second child came to be in a more happy- go-lucky manner. The first pregnancy was a more focused and calculated effort, while the second was not. We had just moved from Northern California to Boston practically on a whim for my husband’s work, when we found out that she was going to be joining our family. My head was still spinning from landing in a brand new city and living in a sea of boxes. I never had time to imagine what she would be like, I was simply trying to get my bearings. We lived in a 2 bedroom loft-like condo in “Southie”, and I was a little nervous about the logistics of making room for one more. I set up for her by putting a bassinet attachment on my side of the bed and a place in every corner that I could put her down, so I would be able to handle a newborn and a 19.5 month old wild toddler. As fate would have it, she was like her brother as a newborn in that she never let me put her down, so she lived in a pouch strapped to my chest for 2+ months. I had a great little moms group that I met with frequently at local playgrounds and houses that were my lifeline during these times. I accepted every offer of help from neighbors and friends that I got, and we survived those first couple of months as a family of four.
For some reason, I decided to throw my husband a surprise party 1 month after our daughter was born, and I lured an unsuspecting (but very capable) babysitter over that we had used a several months ago. I hadn’t even even told her that we had a new baby!! When she arrived, I said, “our situation has changed…. we have 2 now!” My instructions for the new refluxy infant were kind of vague, along the lines of, “we just met her and are still figuring her out, but you may just want to hold her most of the time we are gone.” In my defense, I will say that I’m pretty sure we had already bathed and put our toddler to bed. I guess we just needed a break so bad (laughing).
I have strayed pretty far from where I started out, thinking about hope…..Hope and perhaps control over your fate. Many new parents feel frustrated by their lack of ability to control their new way of life and soon learn that everyday is a little bit about “letting go”. (Please don’t break into song). How do you learn to live with what you cannot control? I guess you must just live it, and enjoy the parts that are enjoyable in the present…and make memories maybe. I definitely don’t have all the answers to this one. Sometimes it feels hard to keep on living, especially when there is no end in sight to the pain that you feel in your heart or body. I think the little things become really important during these times, and are worth treasuring every time you encounter them. I hope that didn’t sound too depressing…it’s hard to know what to hope for these days.