Medically Complex and the Stories of Our Lives

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'

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 likely as the answer.  Al