DANIEL SAYS, "COME PLAY ALL NEWTOWN KIDS!!!"

Daisies, Murder, Therapy and scary bat

Lucky Penny

The lucky penny.  Whenever I see a penny on heads, I pick it up, say a prayer for financial protection and keep it.  If the penny is on tails, I turn it over and say a prayer for the next person to have the luck.

Life as me, is complicated.  It's a journey filled with twists and turns, details and management, and so much to do and work on.  In the midst of what I call "Daniel business" I often get so overwhelmed and have to sleep.  I do pretty well when I know that there is enough money to cover the household bills, groceries, clothes, insurance co pays, gas, that kind of stuff.  But every once in awhile there is a time when there just isn't quite enough.  It is in part due to the focus of my attention.  When I have some money and can relax I then get my head wrapped around the details and perplexities of Daniel's situation.  It truly is, without a doubt, quite complex.

When I run into crisis, like when I can't work due to work cutbacks, or lack of nurses, its a spiral effect.  And then Daniel needs wipes, supplies, etc.  Something happened to my cash flow.  I have to go back through 1000 transactions and bills to figure it out.  Life adds up so fast.  Especially here in this part of the state.  I am a full time caregiver first and foremost.  I do not get paid.  I get debited.  Its rocky now, because my fragile child is 16.  Raising money for his needs and the survival of our support structure was miraculous when he was little.  Today, I don't know what to do because there are very little responses.

This is one of those mornings where sleep is sounding better and better, and its 8am.  My husband and kids are sound asleep, snuggled in.  Daniel and I are awake.  Henry too.
Sunday morning should be a time of rest and family.  All I can think about is how can I get money back into my account.  Switching to a new health insurance coverage plan has required that I pay for every bit of mental health treatment up front due to a huge deductible.

Money is a stress that eats at your mind and heart.  It causes anxiety.  And when you have it, it provides relief.  Being a one income family so that I can care for Daniel is a choice we made.  Today, it would be incredibly to be able to concentrate on Daniel, but instead, I'm worried about not having enough money for my husband to do the things he wants to do.  I really do need help.  I don't feel invalidated, because I have this child who needs 100% of his mother.  But the people who could help, ignore me, because I've needed help before.  in the awkwardness of life, how do you let people understand that Daniel's condition is worsening not improving over time.  The need is there.

Have a tag sale? So much work.  Oh man.  I will just pray that things will come together.

Daniel is laughing right now.  Its a happy, belly laughing cheerfulness.  Priceless this kid.  I don't know how, but I am going to believe that somehow miracles will persist, even as time goes by and we all get older.  Miracles are for everyone, not just when they are babies.

Time to have more coffee and fight off my insidious depression with a dose of Daniels laughing.

Mr Incredible, my story and some dog fun

Shananigans and fireworks

BYE BYE FLORIDA

Naples day 4 trouble in paradise

The dynamics of a family on vacation are really a study in interpersonal relationships.  It is a process, you know what I mean right? The preparation time, so exciting! Getting on a plane and anticipating going far away for a nice long period of time.  Then you arrive.  This is where I have to stop for a second, and add in this paragraph.

Travel with a medically fragile child who just had a serious seizure two days before leaving, by the way.  Early preparation is key.  That includes making sure all prescriptions are filled, (like 12), all supplies are ordered in a quantity to suffice for vacation, shipping several large boxes of diapers, pads, wipes, formula, g tube feeding supplies, pulse ox monitor, nebulizer, swimming gear, and waterproof mattress covers.  When that is done in proper timing as to meet you upon arrival, you then proceed to the packing for the child.  That includes having rescue seizure medications in an accessible place and enough food to last a full day, just in case.  Travel necessities also include a thermometer, portable pulse ox, and blood pressure monitor (which sometimes I need also).  The bags are packed, the drive to the airport done.  Luggage checked. 5 boarding passes in hand.  And its security time!!!  With a 16 year old in a wheel chair, the process is almost comical but necessary.  The swabbing, scanning, poking and prodding all around the child and his chair is, of course, necessary.  The family of 5 completes the complex security screening, usually about an extra 10 minutes, puts the boy's equipment back together on his chair and proceed to the gate..  WHEW.  Almost there.  We have to change Daniel's diaper before the 3 hours flight, so finding a companion bathroom is done.  If Daniel has a BM in there, its a sweaty workout, on a floor, with pads and wipes.  Then we put TWO  diapers on him, so he doesn't leak, or GOD FORBID poop on the plane.  Make sure we don't forget the drooling towel either.   And its back to the gate we go, lots of people staring but I just smile through the sweat pouring down my face.    I go to the girl at the counter and check to see if there is any chance that our family can sit together?  Daniel, because of his condition, always sits in the front with me.  The remaining family goes to the back somewhere.  It makes my son Thomas sad, because we rarely travel and he wants us all together.  So, once we are turned down for family togetherness, we wait for the call to board.  We are always, I mean always, the very first people to get on the plane.  (And YES we touch the plane for good luck, even Daniel)  The wheelchair and the wheelchair tray must be gatechecked with a big lecture on how to be VERY careful with the chair because it doesnt fold up and costs more than a car.  Then a JetBlue employee wheels Daniel to the door of the plane.  Sarah and Thomas go in first to find their seats and get settled.  Then I go in to be ready to receive Daniel.  Dad carries him past the smiling flight attendants and plops him into his seat next to me.  I must then make sure he is positioned appropriately.  Thank you Dr. Smith for that spinal fusion, because Daniel sits MUCH better without scoliosis.  There is much shuffling and settling.  And then, we wait.  Upon take off Daniel starts to scream and bite.  The flight attendant leans over and asks if she can help.  I get his medicine bag, and give him some attavan just in case.  I also hear people around me buying headphones and I feel bad.  The screaming is quite loud.  I put my headphones on his ears, and plug into a TV show.  He calms down.  I order a coffee and breathe.

OK.  Where was I?  "then you arrive."  Everyone is excited, and they unpack and start thinking about what we are going to do.  We stay at a family member's condo in Naples, and its very accessible and convenient to properly care for Daniel.  It's also in one of the most beautiful places in Florida.



By about day 4, things start to get a bit snippity, and personalities start clashing.  As a Mom, I try to do the best I can to help each and everyone of my 4 family members with their concerns and complaints.  The reality is, however, that Daniel comes first.  His meds, his pump, his changing, watching for seizures, and keeping him engaged and entertained.  There are times when I just start ignoring the ridiculous rants and negative lectures and let my mind escape to the details of the beautiful plants and flowers that exist only way down south.



During this recent 10 day trip to Naples Florida, thanks to our wonderful cousin who generously helps us experience vacation with Daniel, we went through every stage of everyone's personality.  Mine too.  I turned into a pouting brat when my family opted for the pool one day over the beach.



Even under the worst of circumstances, ie. having a medically fragile child to bring around in a wheelchair, their personalities still emerge and it is a refreshing blast of "yes, we really are a normal human family."

Taking Daniel to Florida DAY 3