Medically Complex and the Stories of Our Lives

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 ...

With postpartum hormones flailing about wildly I couldn't contain my emotions.  I was a weepy mess.   I planted myself in Rhyse's room. I told the nurses I wasn't leaving.  I would spend the first night with Rhyse--no matter what.  How could I not?  Although time with baby is highly encouraged in the NICU, sleepovers not so much.  I could tell the nurses were not happy with my decision: "moms need their sleep, too" they said.  And I said, "I just had my son yesterday, I cannot abandon him. "    Strangers.  That is how I saw the multitudes of nurses that came and went and poked and prodded and crammed ng tubes into his nose and IV's into his small, frail body. The first couple of days are marked on my mind forever.  My little 5 pound, 4 ounce baby was instantly coined, "Mystery Man" by the specialists and other doctors.  At first the doctors administered a couple bolus's of IVIGs, thinking his blood type w...

Within a very short amount of time my husband, Jon, arrived.  We clung to each other for support.  We  have been through a few other intense circumstances in life together, and we were rooted deeper because of it. But this was every parents nightmare: something was wrong with our baby and we had no idea what the future held.  This was more traumatic than anything we had ever encountered.  At less than 12 hours old Rhyse had already been moved to the "special babies" part of the nursery and hooked up to those soon to be all--too--familiar monitors.  I could no longer hold him freely.   By 8 am Rhyse was transported by EMS to Devos Children's Hospital, and I was discharged.  I could barely walk without intense pain, and I couldn't stand  up straight at all.   Jon and I drove in silence to Devos:my mind didn't know what to focus on.  I had already cried my eyes dry, how much more could I cry.   ...

By late afternoon it was obvious Rhyse wasn't going to feed.  Not terribly concerned the nurses informed me that babies are born with all the extra fluid in their cells to keep them hydrated in the first few days of life.  If he went 24 hours without feeding, he would be ok.  But that wasn't OK with me. I knew that a baby's natural inclination to feed was immediate.  Not 24 hours later, unless something was amiss. Exhausted and whirling from the birth and the high of delivering another baby (one of those, "over 40 surprise babies") I was so incredibly excited to add a boy to my petite passel of two girls, Leah who was 8 and adopted from Kenya and Maggey who had just turned 5.   By evening a few family members had come and gone, husband went home to be with our girls, and I was left alone with Rhyse, ready to sleep--or at least make a valiant attempt.  My husband and I had filled out our, "celebration lunch" form for the next day courte...

Last night I laid in bed unable to sleep--so many thoughts on my mind. Not one thought, not one particular anxiety, just thoughts.  Frustrated I decided to see if Netflix is Android enabled on my new itty, bitty Galaxy 3.6 Note. If Netflix was possible I would bring up my account and find something to watch in bed.  Really, the idea seemed incredulous.  In my 70s childhood I never even dreamed that someday I might be able to lay in bed and hold a three inch "TV" in my hand, minus any cords or antennae, and watch a movie!   But I did.  I watched a movie that I had recently added to my instant queue--knowing it would be my "kind of movie." The clean, girly, sappy kind of movie. BBC makes the best! Within the first couple of minutes I was in tears.  Not just tears, but rolling, strolling down the cheeks kind of tears.  This movie hit me on all kinds of levels, and eked open a lid allowing months and months, not to mention yea...

I recently read a shared post called, " How to Survive being friends with a Special Needs Parent " by Fiona Russo.  And though I agree with one of the feedback responses who said using the word, "survive" seemed a bit patronizing, once you get past the title the rest of the article rings quite true--at least for most of us! Friendships are so hard: I have written about this in a previous blog. But this is still a topic of which I cannot really wrap my mind around for more reasons than, "being a special needs parent."  Being social, apparently, comes easy for some personalities and not so easy for others. And you know of whom i'm talking about: introverts.  The "strong" (or so I have read), silent type who have a myriad of words floating around in their brains, but rarely get let out of the gate for self expression. And yes, I am a self-confessed introvert. If I could have chosen my personality I would not have chosen introvert!  But, qu...

In a recent trip to the ER for what I KNEW was an unusual infection I experienced--yet again--SOP. Standard Operating Procedure.  I don't make ER runs for nothing.  After four years I know when Rhyse is experiencing symptoms beyond typical .  I recognize the changes in his behavior, skin color, urine output, formula tolerance, energy level, breathing pattern and oddly enough the smell of his vomit.  There's "just a virus" and then there is "an infection has taken over and he needs medical help now!" After check in and vitals we were escorted to a room at the end of the hallway, in fact the room at the furthest end of the ward.  The isolation room. Upon discharge from the NICU four years earlier, as a matter of procedure, Rhyse's arm was swabbed for MRSA.  To no surprise he tested positive. No wounds. Just a smattering of MRSA inconsequential to his health at that time, or any time really.  But the rule books say, "once diagnosed always diagnos...