Some assembly required

When you learn you are pregnant, in particular with your first, you get the books that tell you all about the upcoming pregnancy and the first few months of motherhood. You plan, work, scrap, save and nest all in an effort to create some semblance of order in eager anticipation of the impeding chaos of "new parent." While all of the the uncertainty of being a new parent can be unsettling, there is some sense of comfort in knowing that others have done this same thing. In fact, often turning to those we deemed "more knowledge" for guidance when feelings of inadequacy sneak in to cloud one's confidence.

So after several years as a small family of three we decided to expand. We knew we wanted to have one of each. Seems easy enough right? So, we became a family of four, expecting our experiences to be the same as all those other parents that had also decided to make their families larger. We did all the things we were supposed to. We had extra blood work and a noninvasive prenatal screening done to tell us our risks for congenital defects. We knew that I had a negative blood type so we took the rhogam shot when I began spotting early in the second trimester. I took prenatal vitamins and iron supplements. We thought that everything had an answer. 

Quickly our lives were changing catapulting us into the "sandwich" generation. The indicators had begun several years prior as Sandy began to fall into poor health. Yet with that said, we didn't recognize the severity of the situation. We continued to fight and find treatments that had been pursued by others with success. So Rich took on the role of managing his mother's health and I stayed with Charlie in the hospital. While Charlie's case of septicemia and hypothermia at six days old was challenging, difficult for our entire family, even that had a set protocol in place for the doctors and nurses follow. These scenarios all with prescriptive, predictable treatments that contained mantras of "moving forward." It was as if everyone was following some intangible assembly manual that contained instructions on what to do next.

What isn't written is how to recover, how to "move forward" when you are missing parts of your family. Or how to raise a child with global developmental delay, hypotonia, a variant of uncertain significance, oral motor dysphasia and mixed expressive receptive language disorder. There is no set therapeutic regimen to follow, no guide manual or picture instructions on how to take care of your parents while caring for your child. It is some assembly required with this atypical sandwich generation family.

As we "move forward" it is impossible not to look back with regret. Impossible not to compare our child to others.  Or wonder what the future holds for the family we have that remains. I am just winging it, making it up as I go. Trying to put together a plan for my family with huge pieces of the puzzle missing and no box with a picture at which to look. My efforts are drawn out. They are disparate, scattered because there are so many irons in the fire, so many therapies to do, always someone needing help.

My family isn't typical, nor are our experiences. My son is disabled, so is my mother. Each day we move forward with a plan in mind only to change direction, bending and flexing because a location isn't accessible, or lacks an adult sized changing space. So I change my son on dirty bathroom floors, on the ground in public spaces or my car because I have no other option. I pack a cooler for mashed and pureed food carrying it everywhere because Charlie can't eat off a menu like other kids do.

No, my family, our life, it isn't typical.  We are a "some assembly required" family. Yet, while we don't have any instruction manual, our diffused efforts are paying off. While sandwiched, caring for multiple generations both Charlie and mom are learning to walk. And when I am curled up next to my daughter in her bed, I know we are doing something right as she shares her deepest fears so we can role play helping control her anxiety. It is as Charlie bunny hops over to me, pulling to stand independently that I realize my sandwiched family is writing our own assembly manual and it is okay if it takes a little extra time because there isn't a guidebook on how to do this.