Unexpected Motherhood

As I approach my first Mother's Day NOT spent in a hospital room, there is some time for reflection.  I don't think motherhood is ever what we EXPECT it to be.  After all, first-time mothers have NO IDEA what to expect.  We all watch other people parent.  We may even have taken care of other people's children or younger siblings, but when a child is actually yours, it changes everything.  In addition, each child is different - so even if you have had previous children, you aren't quite sure what is going to happen.  But, I think parenting a chronically ill child or a special needs child (or both, as the case may be), is really something for which no one can be prepared.  And when you combine the two - first-time parenting with chronically ill child - the unexpected aspects of motherhood really start to pile up.  Bean is doing wonderfully this Mother's Day eve...she is starting to do so much that a baby her age should be doing - chattering, cruising around our rooms both walking and crawling (walking still requires some furniture aids), clapping, entertaining herself with toys and household objects, and smiling a ton.  She is still wearing some 0-3 month clothes at almost 15 months old, but she is eating regular food, drinking formula like a champ and has no extraneous tubes to be cared for.  Amongst heart moms, I consider myself to be incredibly lucky...many have so much more to deal with then we do.  It seems strange to some to call myself "lucky" - but, I realize that I am just that - lucky.  But, I also realize there are things that are "typical" for me that other moms will never have to deal with.  Giving multiple medicines at 8 a.m. and 8 p.m. each day (with a few in between as well).  Getting blood drawn on a regular basis.  Visiting cardiologists and gastrointestinal specialists and being visited by physical therapists and developmental therapists.  Its all part of our lives now.  And that is why I loved the post, "a Mother's Day reflection" over at Our Transplant Journey.  It captures so much in just a few simple statements.  My favorites include:

I never thought I'd be in an emergency room watching a doctor and a group of med students smell my daughter's diaper.

I never knew how terrifying a simple stomach bug could be.

I never thought I'd know what an IEP is.

Those never knows become empowering "now I know"s soon enough.  And someone else out there who needs to know will seek out information and help from us and those unexpected nuggets of knowledge become small gifts of comfort and understanding that we can give to others.  Life may have been easier with a more typical child, but it would have been a life unaware - unaware of the gift a child is - whether she be well or not, the gift that knowledge is - whether it be sought out or forced upon us, and the gift that appreciation is - appreciation of milestones reached very late, of a birthday (or Mother's Day) spent outside of a hospital, of the amazing gift of life given to us by a total stranger who suffered a much worse fate than us.  I am truly thankful and appreciative this Mother's Day! 

Happy Mother's Day to ALL moms - may your motherhood journey, whether it was what you expected or not, be one of joy and love.  And to all those moms out there who have lost their children - to illness or to accident - including our donor's mom - my heart and thoughts and prayers are with you.  This must be a terribly difficult day, but your children are celebrating you somewhere and their love is still in your heart.  May you feel that love today and all your days.