Medically Complex and the Stories of Our Lives

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, ma...

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...

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 ...

When I walked into my house I always went straight into my room, dropped to the floor and sobbed and sobbed.  My daughter Maggey would always  come in and ask, "are you going cry again tonight?"  I would always say, "yes."  I love Rhyse just as much as I love you and I miss him.  She would tell me she would "be there" for me, whatever I needed. Rhyse's crib is in my room.  I think that made my heart bleed all the more.  I got to the point I could not look at the empty crib at the end of my bed anymore.  It just tore me up inside. While Rhyse was in the NICU he had two bone aspirations and two heart ultrasounds.  The heart ultrasounds did show two ASDs and cardiomyopathy.  But the heart defects were minor and merely needed to be monitored.  It was the bone aspirations that were critical in their findings.  By the second bone aspiration the doctors determined Leukemia was looking less likely and Noonans more ...