Deck the Halls with Bleach Spray, a special needs Mom has a wake up call

On Tuesday, December 2, 2014 Daniel was happy, smiling, and enjoying a day at the mall with me.  Everything was normal.  On Wednesday he went to school, and didn't seem right. He was having unusually frequent bowel movements. By the time 6pm rolled around he was going every 10 minutes and he was extremely dehydrated.  I called the GI service at Yale, and they recommended that I take him to the ER for hydration via IV.  Which I did.  By the time we got to Danbury, his bottom was red and painful.  The waiting room was literally PACKED.  While we were waiting Daniel had a bowel movement and it was so painful that he briefly passed out, which bought us a ride to the top of the waiting list.

Fast forward to 1:00am and the doctor basically told me I could take him home and give him fluids through the g tube.  So I did that.  I was extremely exhausted, and stayed up all night on Wednesday. On Thursday morning the stools were worse, and he had fever.  I called GI again and they told me to take him to the "pediatrician" to have her "assess" him for dehydration, if she felt he needed to be seen at the hospital they would have him admitted.  She didn't think he needed to go to the ER so she gave me anti fungal ointment for the rash and said to "wait it out", she said, "it will pass in another day or so".   Friday morning, it was far far worse.  The pediatrician had told me to call her by 8 am so I called over there.  They asked me to come get a bunch of things to take a stool culture.  It was really gross, but we got the nasty poop into the vials and I rushed it back over to the doctors office.

The GI service at Yale had also told me to restart Daniel's regular feeds at 75% strength.  Which we did.  After a few hours, he was in distress from stomach pain and the rash was horrific.  The stools were literally non stop.  I called again.  The GI service started to suggest I take him to Danbury again and I said no, I am bringing him to Yale.  They agreed, and I packed up some bags and got Daniel and myself to Yale New Haven Children's hospital.  We went in through the emergency department, but got quickly admitted.  Daniel was severely dehydrated.

Friday night into Saturday he was in tremendous pain from the rash, and was on complete belly rest, having only IV fluids.   Saturday afternoon I got a call that he tested positive for C Dif.

I think we could have bi passed all of this back and forth, see the pediatrician, go to Danbury, go home, bullshit, and just gone straight to Yale and had a culture right away.  Instead, he is 4 days deep into the worst rash I have ever seen.

In the midst of Daniel being sick so many things were affecting me.  My house stopped having heat and hot water on Thursday, I was unable to go to work and I now I have lost income with Christmas around the corner, my van went dead on me twice while driving to New Haven, and I am away from Thomas, John, Henry and Theo.

Sitting alone in the room with Daniel asleep, Friday night, I felt the urge to cry.  A wave of depression rushed over my head and I had never felt more alone that I did sitting in that room.  The holidays used to be a time of friends, food, dancing, music, laughter, sharing, loving, caring.  Now I can't even go to the one little Christmas function we were invited to, Breakfast with Santa for Dream come true.  That was this weekend, on Sunday.  I feel like the "normal" world passed me by like a big cruise ship full of smiling people, leaving me alone on the "island of special needs Moms".  We don't get to be free spirited and joyful, and crafty and creative...  especially when we have sick disabled children.  Or worse, when we are in the midst of writing a eulogy for a deceased child, or grieving the loss of a child.  We live in a clinical world, where managing meds, appointments, schedules, doctors, therapies etc. takes hold of our free spirit and nails it down so it can't move.    So in our state of being captive to this life, we learn to love and adapt as best we can.  We want to put blinders on to the people who were luckier than we were when they were blessed with a healthy family.  We don't want to feel envious at the families with plenty of money and time to have social functions, vacations, and plain old jolly old lives.    We want to scream and shout when people are gawking at us in public, because its hard enough to find a place to park, and let the wheelchair down, let alone have our wheelchair bound son gawked at by a woman in a Christmas sweater coming out of the Michael Kors store. And we want our child to be accepted and loved, not stared at like a freak show.

The hospital is a place where health care workers and doctors actually speak a language we completely understand and we can reiterate our child's medical history down to every little detail and date.   And yet, as I sit here I can not remember the last time I did anything socially, or freely without worry.  I worry all of the time.  I have for 17 years.   I see lights going up, and Christmas decorations, and trees on top of cars.  I feel sad.  I miss badly needed work, and my income goes down the toilet, and then I have to pay for parking, and food, and my furnace repair, and my van needs work now.
Christmas what???

Back to Daniel, Saturday afternoon the doctor on call for the pediatrician called me to tell me that Daniel tested positive for C Dificile. A very nasty and contagious bacterial infection of the intestines.  So now they have some answer as to why he is so sick.  I don't know how he caught it, but the main thing is I am right now, sitting here, writing, in a chair, next to a bed, in a hospital room while my child is sick and moaning.

Even when things settle, I was just reminded again, that I will continually get knocked off of the complacency pedestal.  I am living on the island of misfit toys.  Wondering if Santa will remember us.   I don't own a cocktail dress anymore.  I don't own high heel shoes, or sparkly jewelry.  I change diapers and do laundry.  We work and struggle to keep the roof over our head.  We love, we laugh, we smile, we joke, we live as best we can, watching as the lights of the ship of "normal life" sails off with its joyful holiday music playing and scents of gourmet dinners.

Daniel is smiling watching Despicable Me 2, and somewhere a baby is crying.  I can hear the sound of life star helicopter landing on the roof right now.  I know that I am not alone.  I accept my world, and I love my children more than my own life.  I don't know if I will ever attend a holiday function again, or if I ever want to, because I have been jolted, jarred, emotionally scarred, traumatized, and given the most infinite and incredible love at the same time.   I'm different than you.  You know who you are.  And I am happy for you that don't have to live on the island of misfits, because you wouldn't fit in here.

So I will keep doing the best that I can.  Managing this life and this family as best as a mother knows how.  I will try my best not think back on what I "thought" life should be like as a Mommy, because that is definitely NOT helpful.  This is a way of life.  This is a way of love.  This is a way of being.  This is a way of adapting.  This is my way.  This is what being Daniel's Mom is all about.  This is who I am and my typical children, and my husband are all equally living a life adapted and affected by this guy name Daniel.  The one most affected though, is Mom.  My world stood still on the day Daniel was diagnosed, and then it exploded into millions of shards of life. Then they reformed themselves into an altered reality.  And God spoke to me somehow, and said, "here, this is for you. you are going to have to live here.  Don't worry, you will figure it out."

So it goes.  C Dif.  thanks for the holiday hospital wake up call.  Deck the halls with bleach spray.