(Re)Define Normal, Please

Three years ago, we redefined normal for our lives. Normal no longer included ten fingers, two hands, ten toes, or two feet. Normal became doctors and specialists and airplane flights with an infant. Normal included working hard to achieve milestones and big celebrations every time one was reached. Normal meant taking nothing for granted. Normal meant questions and comments and judgmental people. Normal meant physical, occupational, and speech therapy for my infant. Normal meant nights of anxiety and wondering what -if. Normal meant coordinating medical appointments at three different pediatric hospitals in two different states with travel arrangements. Normal meant preparing to hand my baby off for surgery. Normal meant re-working our budget... repeatedly. Normal meant organizing medical bills and dealing with an insurance company weekly.

Of course, normal also included laughter at things I previously never would have thought appropriate to laugh at (prosthetics can give occasion for some good laughs!). Normal meant meeting families and children I would otherwise never have encountered - and instantly forming great friendships. Normal meant my baby meeting celebrity athlete amputees. Normal includes Will being in an ESPN movie about Kyle Maynard - set to be aired in November. Normal meant opportunities I never would have dreamed of for my little boy - travels, diverse friends, walking on Fenway Park field aside the Yankees & Red Sox. Normal means the privilege of watching a miracle every time my little boy walks, runs, feeds himself, grabs a toy, colors, opens a jar, lives life so "normally" - without full hands or feet. Normal meant a heart so full sometimes I think it might explode with joy and gratitude.

I'm redefining normal again.

Doctors keep asking us how we are doing with dealing with having another child with a different disability and all that that entails.

R & I laugh as we don't really know how to respond. Most of the time, we think we are handling it okay - or at least we are handling it. Sometimes, I am emotional or overwhelmed at what life looks like and at all of the unknowns still out there for Ellie. Wouldn't it be concerning if we weren't feeling overwhelmed sometimes? If we had no emotions about all we are dealing with and that our children face, wouldn't that imply that we were somehow in denial? What is the "normal" behavior for new parents with two children with two different disabilities? How much anxiety would be considered standard? At what point am I too overwhelmed? These topics aren't exactly covered in my parenting books!

We're redefining normal again. Normal means a new group of specialists. Normal includes living far from home in a condo on the twenty-fourth floor for several months while our baby receives medical treatment. Normal includes more therapy - and now waiting on another for our baby. Normal means more what-ifs that haven't been addressed yet by her doctors. Normal means wondering how much her muscles are affected. Normal means taping and splinting and casts. Normal means research. Normal means difficulty dressing her. Normal means doing therapy at home and on a restricted bathing schedule. Normal means opportunities to explore a new, big city and all it has to offer. Normal means seeing R on the weekends. Normal means going to doctors or therapy four times a week. Normal means laughing when people in public are amazed to see me out with a newborn - they have no idea! Normal is becoming blown away by the generosity of total strangers that are offering food and help and prayers and support. Normal is spending time at a children's hospital. Normal is forgetting that this is not normal.

I don't really know what normal is anymore. I know what "normal" is for us. R & I were discussing it last night and we concluded that in some ways, we are handling things with Ellie better than we did with Will because parenting Will has given us such hope. We have seen a child without feet learn to walk. We have witnessed the miracle of him conquering his developmental milestones on time. Of course, there is no guarantee that Ellie will do the same - I have no idea what she may be able to do. Whether or not she walks or runs or feeds herself, however, I am confident that my blessings will be great. I have learned that my joy is so much greater and my blessings abundant - maybe because we face more challenges.

We are more comfortable with the world of children's hospitals, specialists, insurance companies, therapists, research,etc. this time around. I'm even slightly more comfortable with dealing with comments and stares and questions. I'm not as hypersensitive as I was when Will was a newborn. In most ways, we feel that we are so grateful for Ellie's life right now and we have such hope based on what we have known with Will that we are better able to accept Ellie's differences.

At the same time, I often feel so much more overwhelmed and more anxiety about the unknowns and about what our life looks like as our calendar fills up with so many more specialists and therapy appointments. And there's not really a manual for how to deal with this - for how to make a marriage work long distance and maintain friendships and family relationships and somehow be "normal" in the midst of so much extra.

But it's all my normal... and though it is a unique normal, it's ours and it is mostly a good normal - the blessings outweigh the challenges. And we are confident that our joy will be greater than we ever could have imagined.

But I might also be a bit more tired and overwhelmed that I imagined too.