Jul 4, 2012

Our Next Leg - Week 2

For those that have never been in a situation like this - one where you are supporting a loved one who is seriously ill - let me say that you spend most of the time riding a roller coaster.  It is a time in your life where your patience and faith are constantly and consistently tested.  You will have a day full of highs followed by one full of lows and the only way to survive all of this and be sure that you can be there for your loved one is to take each moment as its own.  We're all human so we'll live in each moment, but once it's past, you'll need to prepare yourself for the next one - clean the slate so to speak.  Now that's extremely hard in these situations regardless if it's a good or bad day; a high or low moment.

It's the worst time of your life, right? So why wouldn't you want to bask in the joy of the good moment?  Why wouldn't you want to relish the high?  But with something as serious as the brain injury that Dylan has suffered, you can't afford to spend that kind of time or energy on a moment that can prove to be fleeting. I learned that early during the first week when Dylan was in a coma.  When five, then seven days go by and you haven't seen your baby's eyes (she'd opened them for a moment on Day 3 during her MRI but only the doctors and nurses saw it), you start to question things.  When she doesn't seem to be doing anything because there is no movement from her, you fight to keep your hope.  Even though the doctors tell you, "she's working hard, you just can't see it", it does little to comfort you.  The first few weeks were spent with Dylan laying in a bed in Brookdale Hospital's pediatric ICU looking to me and any visitors as if nothing was going on.  But she was working extremely hard to mend her internal organs, especially her liver and heart, and fighting with all her might to come out of her fog of a coma.  So my daily updates from her doctor were strictly about how her internal organs were doing.  About her heart rate and blood pressure.  About her sugar level because of the preventative measures being taken to diminish the amount of brain swelling.  So I started to look forward to my daily updates from the doctor and celebrated her unseen accomplishments with as much enthusiasm as I could.  But I was reminded that my faith would be tested with every update given to me regarding the amount of damage to her brain.  I had to adjust and be mindful not to sink too low with the dire news and keep the faith that Dylan was strong, was a fighter and was as stubborn as I was so loved to prove people wrong.  It was tricky.  I'd hear that she'd beaten a fever and was showing signs that she was breathing nicely and then see the neurologist go through her standard tests with little or no response from Dylan.  I'd keep a brave face up for the doctors, staff and Dylan.  And then when I was alone, I'd break down.  It was a lonely time for me, as I'm sure it was for Dylan as well.


This past Friday was a tough day for me.  With my birthday and what would've been Dylan's graduation from kindergarten taking place last week, I was already emotionally raw.  I spent the first part of the week at home to give myself some time to try to enjoy my birthday.  By Friday, I was an emotional wreck even though I was still smiling and pleasant on the outside to every staff member I encountered.  I had to run an errand and on my way back to the hospital decided to stop at The Cabin Restaurant for lunch to unwind.  I'd been eating there just about everyday since we'd gotten to Blythedale so knew that I'd get good food and from what I'd noticed while picking up my dinner, the atmosphere reminded me of my favorite bar in NYC, The American Retro Bar & Grill: blue collar, casual, unpretentious and friendly.  My assumption was spot on and I ended up having lunch and dinner there, watching Wimbledon on ESPN and talking about everything under the sun to total strangers.  And other than mentioning it twice during the evening when asked if I lived in the area, the one thing that I did not have to talk about was Dylan and her condition and I was unashamedly happy about that.  What I realized then was that although Dylan has always been, continues to be and always will be my center and core, I needed to take a break.  I needed the break so that I could take care of myself to be sure I would be able to continue to support her and be her biggest cheerleader.

I had a catch up call with my sister when I left the hospital and then a business call and went back to our room to relax and expected to meet the parent of our new roommate who'd been scheduled to arrive earlier that day.  What I walked into instead were a few hiccups where on another day in another situation would've resulted in me having a discussion with the nurse and staff.  What ended up happening instead was me breaking down.  I didn't yell and scream, but I asked the staff to leave me alone and cried for about an hour and a half.  When I told my best friend, Carmen, the next day how long I'd cried, she said that she was happy that I'd done so because I probably hadn't done that since everything happened.  She was right.  I'd cried, but always in brief spurts.  There was always a phone call to take, a visitor to receive, a doctor to speak to, a nurse to ask a question of, a social worker to follow up with, etc.  Who had time to cry?  But everything happens for a reason and I was shown within that 24 hour span of time that I could - and most likely would continue to - have a great high and the lowest of lows within an hour of the other.  Both emotions were expected and normal with what I was facing.  What I needed to do was be sure that I consistently take the time I need to recharge because those moments, whether they are filled with highs, with running errands or with just resting, are much needed in order to sustain the lows and/or disappointments that I would encounter.

All the lessons that I've learned in the past few years since beginning this blog are all rushing back to me.  Remember who I am, never lose that.  Remember to believe in myself and my dreams, they will come true.  And, remember that in all the obstacles that I face, there is something there for me to learn.  In all the clouds, there is a silver lining.  And in my beautiful girl, Dylan, is the heart of a champion.  She will not give up and neither will I.  For as bad as I feel, she feels even worse so I am there to remind her of all the good there is in life and that this too shall pass.

I thank the Most High for giving me this gift to live through.  It has shown and reminded me of all the blessings I have in life and that life has to offer.  And I'll continue to share those with you here throughout this next leg of our journey.

One!

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