Thursday, December 31, 2015

Happy Holidays? Not All the Time

The holidays are a tough time for many people.  I'm becoming one of those people,  but not necessarily for the same reasons as many others.  The holidays are supposed to be about families spending time together, being thankful for our many blessings, and for celebrating.  Well, I do all those things and I do them joyously, but in the back of my mind I am remembering our holiday season five years ago.  You see, Eli was born in late October 2010.  We had a wonderful Thanksgiving together.  Our first Christmas as a family of four was so much fun!  Christmas with a baby is always special.  We rang in the new year with dear friends and were excited to start 2011.

Five days into the new year, Eli was diagnosed.  Our lives were forever changed.  Please don't get me wrong, I am and forever will be grateful that I can say he was diagnosed and not have to say he died. It's truly a miracle (not a phrase I have ever used lightly) that he lived as long as he did before finding out something was wrong.

However, I cannot look back at any pictures from the holiday season of 2010 without feeling some sadness.  I see his sweet little face with those beautiful dark brown eyes and chubby cheeks and I search.  I search for a bluish tint to his lips or fingers.  I search for signs of not growing appropriately.  I search for a listless, sleepy baby who was, unknown to us, fighting for his life.

It's not that I think I personally missed something or am looking to place blame on anyone else.  I just have a lot of conflicting feelings about that time.   Mostly I just remember how carefree we were.  Yes, we had two young children so that came with a lot of stress & worries, but they weren't life or death worries.  Looking at those pictures I remember being thankful for my little family, but these days I feel like I have even more insight about what it means to be thankful.  Every day is a gift.  Every hour, every breath, every single thing said or done, is a gift.  In those pictures, I see the innocence we once had.  The baby in my arms had a body without scars.  He was unblemished and perfect.  But looks can be deceiving.  He was fighting a fight none of us knew about.  Fortunately for us, he is stronger than we could ever imagine.  Fortunately for us, we were able to figure it out before it was too late.  Fortunately for us, we had access to the proper treatment so we could help him fight.

I wish Eli didn't have to fight so hard.  He's had to fight for so many things, and had to fight for many of them multiple times.  Nearly every child learns to walk, talk, & eat, but not every child has to learn to do so twice in their lifetime.  Both times were with the help of talented, caring therapists.  I vividly remember his first steps...both times.  Both first smiles brought tears to my eyes.  Seeing him struggle with simple tasks that so many of us take for granted was and is very hard.  As a parent I want to make things easy for him, but that's not what's going to help him the most.  He has to work through those struggles and really learn from them.  It's very difficult to sit in a surgical waiting room while our little boy is having his chest cracked open.  But it's almost just as difficult to properly help him recover from his strokes.  These are not the things taught in parenting classes.  They're not taught in nursing school and they're not taught when your little one is diagnosed with such awful things.  Live, learn, and pray for guidance.

So, the holidays bring a lot of conflicting emotions out for me.  I'm grateful for the time we had before he was diagnosed.  Ignorance is bliss?  But in hindsight I see how lucky we were.  I probably sound like a broken record, but it's amazing that he lived through those weeks.  Just how precious each of those moments were screams out at me in those pictures.

Today (December 30, 2015) marks another anniversary for Eli.  Two years ago today we were in Dr. Amy's office for an urgent visit.  Eli had woken up vomiting on Christmas Day 2013.  When he finally started walking that day we noticed he was limping. It got worse and we even went to the ER for xrays.  Nothing showed up so we thought it was possibly a hairline fracture and we watched him for another couple days.  The morning of the 30th he was running a fever.  By then, Bryan & I both knew it probably was more than a simple hairline fracture.  Once at Dr. Amy's, we had plans to get labs, blood cultures,  and other x-rays.  Also, an appointment with a pediatric orthopedic doctor was made.  It was in Indy and we had less than three hours to pack and get up there.  Eli & I took off and made it.  On the way I was calling Eli's other specialists and leaving messages updating them on his condition.  By the time the ortho doctor examined him, Eli was feeling pretty bad and looking like a very sick little boy.  He was admitted to Peyton Manning Children's Hospital that day.  He didn't leave there until March 6, 2014.  His staph infection was back and we had no choice but to send him to the OR again.  If you've followed his story at all, you know the rest.  Fourth open heart surgery, strokes, intensive inpatient rehab.  Once he left PMCH in early March, it was a transfer to St. Mary's in Evansville for more inpatient therapy.  On the 21st of March, exactly two months after his strokes, he WALKED out of the hospital.  He came home with a wheelchair, a walker, swallowing restrictions, countless stretches & exercises, and a whole lot of work ahead of him, but he was home.

So just another date that I don't try to remember, but it won't leave my head.  And just another memory tied to the holidays that leads to unpleasant thoughts and memories.  It's been a little harder this year because just yesterday was my grandmother's funeral.  At times during the service, Eli was on my lap.  It was his first funeral and he kept whispering questions to me.  "Where is Grandma Great?"  "She's not hurting anymore?"  "Her soul is in heaven with God now and her body is in there?"  Of course we'd talked before then, but naturally he still had questions.  As I held him and sat there, I was very emotional.  Toward the end, he looked up at me and whispered "I love you."  I was already crying and suddenly all I could do was hold on to him and pray.  I was praying thanks that I had him with me, praying that I would not be attending his funeral, and praying for strength to get through whatever is next on our journey.

So, now that I've shared all those yucky little thoughts, let me assure you I don't dwell on them.  I don't think about them all the time.   I enjoy the holidays with our family of five and our extended family & friends.  The good times and good memories heavily outweigh the bad ones.  We have to have those bad times to truly appreciate the good ones.  And now, at this late hour, I'm off to snuggle and feed one of my greatest blessings in life.  She's fussy because she's going through a tough time too....teething.  My other three blessings are snoozing together on the couch after watching a movie.  See how rough we have it???  ;)

I hope you all had a very Merry Christmas and that 2016 brings you health and happiness!    I will make a New Year's resolution to be more consistent updating this blog!  Do you make resolutions?  If so, what are you working on this year?