Medically Complex and the Stories of Our Lives

Photo by  Blake Cheek  on  Unsplash In a shout out to those who like to write one author asked anyone who felt they could write about grief, to do so.  She gave ticklers like, "What have you learned about grieving?" And, "What do you want others to know about grief?" Putting this question into the context of our families' seven years with a medically complex child I explored my own thoughts on the subject. Grief is a wicked, yet constant companion in our lives.  In retrospect, I am wondering if all marriage vows should include the line, "Amidst grief and joy, from this day on."  Instead of, "In sickness and in health."  The latter connotes we either live "in sickness" or "in health".  When really, we live in a continuum of sickness and health and grief and joy and pain and fear and love, and on and on.  I wonder if more marriages would succeed if two people understood from the beginning that life isn't just hap

I have never wanted to be a superhero. Superman wears a cape and red underwear to perform his civic duties. Batman wears a mask and special gloves to save the world. Wonder Woman wears a silk bikini and magic bracelets to ward off the bad guys.  Spiderman wears pajamas for his strength, and on and on and on it goes.  Superheroes. Beings that always win the battle, no matter what.  I've never been a fan of superheroes, and now in my forties, even less. Why don't I like superheroes? I do not like superheroes because there are no battle wounds, no life long scars, no emotional responses.  No brokenness.  I cannot relate to such a superficial, one dimensional reality. I would love to wake up one day and be "over it.'  To put the years of pain, fear, and trauma as it relates to my little son with Noonan Syndrome completely to rest--to find that reset button, or magic wand.  Instead the twists and turns of my journey keep dragging my toes into deep, deep sand that I

Do the surprises ever stop? That's my burning question of the day!  Not just the medical jack in the box in the form of a little boy, but my own emotions and fears.  I know that I know that I KNOW I can't live in fear. The problem is I don't always know what form that fear will come in and when it will reach up out of a perfectly beautiful day and grab me by the neck! We are currently enjoying spectacular, temperate days because of the approaching Fall season. Usually us Michiganders highly anticipate the harvesting of the myriad of fruits and veggies grown all around us.  Just today my kids and I rambled down the street a few miles in our teen-age Buick Terazza and purchased yet another ten pounds of fresh picked blueberries.  I washed them-- and washed them again-- and weighed them and bagged them for my morning protein shake. I say usually because because, well, usually that is true.  But this year the transitional beauty  that comes out of the progression from Summe

Photo Credit RacingAwareness.com We don't know what to say, or how to say it.  I hope our faces-at least in part--spoke of our  gratitude  for your organization RacingAwareness.com , and for your kindness towards total strangers. The past four years have been the hardest years of our lives.  Fraught with constant illnesses, accumulating diagnoses, cancer scares, debilitating malnutrition, and health care split between two different health systems our lives have been forever changed. We have learned to live differently, love differently, and hold on a little tighter to each moment. In the first three and a half years there were no outings, no mom and dad dates, no trips to the beach, just living in the moment--from crisis to crisis and hospitalization to hospitalization.  The past 12 months have not been easy either, with winter virus's constantly beating his little body down, and fighting a never ending battle against weight loss, malnutrition and dehydration, despite

As I was standing in line at the gift shop at Motts Children's Hospital, I couldn't help but overhear the content of a phone call: the lady was a mere two steps behind me.  In a firm, reassuring voice she expressed, "he's been confirmed trisomy 21 but we're just fine with that.  We've talked about it and we are going to love him no matter what. He's ours and we just can't wait to meet him tomorrow." Her posture, her tone of voice--everything--spoke of joy.  She was not the mom-to-be, but likely the grandma-to-be.  And that grandma's heart is bottomless.  As if that joy was catchy my heart was filled joy too.  In the next moment a line from one of my all time favorite PBS shows, Call the Midwife , came to mind. In season 2, episode 4, Jenny a nurse and Jane an orderly visit St. Gideon's--a home for kids with various birth defects, and located next to a biscuit factory.  One of Jenny's patients, Ruby, recently gave birth to a baby wit

I have spent the past few months either care giving for my sick four year old, or being sick myself, and thus living in a continuum of burn out.  A multitude of house projects still left unchecked on my mental list of, "things a good housewife would do."  An overwhelming amount of money owed to doctors, thanks to drastic changes in health care that no longer directly support the medically complex children, leading to constant dreams where I'm drowning over and over and there's no one on the planet to rescue me.  Living in a constant fear of what medicines or treatments or hospitalizations we will have to discontinue because of exorbitant medical costs.  These are real issues with real emotions and no real answers for us parents of medically complex children. I have melded myself to several different facebook groups; Mommies of Special Needs Kids and the Noonan Syndrome Family and Mom's of Tubies type of groups.  But these lovely people behind keyboards are j

My biggest fear in the NICU was that Rhyse would not be able to properly bond with me as his mom.  Many of the spilled tears were because of this anxiety that wouldn't go away.  I had heard and read of so many children who were permanently defunct in some ways because of the loss of bonding time with a mother.  I am also an adoptive mother: I know first-hand what happens to a child who has never been able to bond to their biological, God-given parent and have to transfer that powerful need to another. Though I will always advocate for adoption, there are intrinsic issues with bonding that plague both adoptees and adoptive parents for life.  And I didn't want my son to deal with those pains because of NICU time.  Maybe this was irrational, but it was an emormous burden at the time.  And one more anxiety that threatened to overtake me. If it were not for the Lord and the constant reminding through his Word that he must cast our cares on Him and receive his Peace, I don'