One Year

One year.  It's a miracle that we are still standing. It has been the longest, yet fastest year of my life.  It's been the most heartbreaking, yet joyful year of my life.  It's crazy how it could have been all those things at once. I've heard people say about parenting that the days are long but the years are short.  I cannot think of a more accurate description, particularly because of our circumstances this year.

It started with my unexpected early delivery of Megatron.  That seems like a lifetime ago.  I remember thinking at the time that those first 24 hours of his life were the most difficult thing I had been through because I wasn't allowed to see him.  Ha.  I can barely remember what it felt like.  Both because of the medications I had to be on but because we have been through SO much since then.

Ten days after he was born, my beloved grandma and whom Megatron was named after, passed away.  Then there was Megatron's diagnosis and prognosis.  Then The Pilot's uncle passed away after a very short illness.  Then Megatron's first surgery.  Then I found out my dad was living a lie and was making morally questionable choices.  Choices that made me feel it was important to shelter myself and Megatron from, so I had to distance myself from my relationship with him.  Like an ocean between us kind of distance. Then my brother's family lost a furry member of their family, one of their cats.  In our family, cats are family and when any member of the family hurts, we all hurt.  Then I had to walk away from a career I truly enjoyed because we saw the writing on the wall.  We wouldn't be able to balance my travel schedule with The Pilot's schedule while taking care of Megatron's complex medical needs.  Then my parents sold the house where I spent my formative years and ended their marriage after 41 years.  Again, when one member of our family hurts, we all hurt.  My heart was breaking not just for myself but for my mom too.  Then Megatron's liver started to fail.  I had to abandon my annual trip to Disney for the marathon because my sweet boy was in intensive care. He developed life threatening complications from his liver disease.  We came within days of losing him.  Then, in the greatest act of selflessness, The Cousin gave Megatron part of his liver.  Then my mom's cat passed.  He was a kitty that we got when I was still in high school so he was just as much my cat as he was her's.  Things slowly started to get better.  Megatron finally started to grow and thrive.  He didn't look sick anymore.  We got to come back home after 6 weeks in Pittsburgh.  We have still had a roller coaster since Megatron's transplant, from another hospitalization and three more trips to the emergency room, to nutrition setbacks and minor rejection of his "big boy" liver but overall, things really started to settle and we worked on finding a new normal.  Then, two weeks ago, we had to say goodbye to one of our cats.  It was very sudden and heartbreaking.  This was the kitty who we assumed would be Megatron's buddy.  Wherever the baby was, DC was nearby.  I think he sensed Megatron's special needs and was there to "protect" him.  It felt like once again, we had been punched in the gut.

It felt like with each heartbreaking event, the Universe was trying to knock me down a peg; Like the Universe was trying to break me.  While from the outside, it may have seemed like I was holding up well and keeping a positive attitude but in reality, it felt like the weight of the world was crushing me.  On multiple occasions this year, I questioned what I had done in this life or another, to deserve all this.  I questioned if I had somehow knocked my karma out of balance.

Some days I still feel that way and it's a challenge to realize that our family was given two incredible gifts.  Megatron and his new liver.  But each day I become more and more thankful.  I believe that Megatron was born early so he could meet my grandma.  I think my grandma held on long enough to meet him.  I think he came early so that he could be a joyful spot through all of the grief that our family was about to experience.  I think the heartache we experienced from his liver disease showed our family not to take one moment for granted.  We hug tighter.  We say I love you way more than we ever did before.  We are closer than ever.  We learned what it means to be selfless after seeing what The Cousin did for us.  After seeing that donor blood saves lives, some of us overcame fears and donated blood.  We do our best to pay it forward whenever we can now.

I see so much kindness in people around me now and that is my reminder that we survived this because of the kindness of others. Sure, at the end of a long day, even an incredibly fun day, I sometimes lay down in bed and sob.  How are we still standing?  How and why did all this happen? Sometimes I'm still angry that my one year old baby is on 8 medications.  That three times a day I have to give him medications and then wash the countless syringes.  That I have to argue with pharmacies and the insurance companies.  That I have to be "that" parent who sanitizes everything in arm's reach of the baby when we are in public places because his immune system is suppressed.  That my dad walked away from the life and family he created. That we lost so many amazing family members this year.  But then I hear Megatron breathing or sighing in his sleep over the baby monitor and I'm put back in my place.  We were given a second chance with him and I need to accept those challenges.  So I flip through a couple pictures of him and see his smile.  He's been through more challenges in one year than most people face in a lifetime.  Yet he's still smiling.  And I smile because he's here.  And he's thriving.  See why I think this baby was a gift to not just me and The Pilot but to our entire family?

So with each day I do my very best to focus on the amazing aspects of our days.  I try to focus on how far Megatron has come.  Six months ago, we nearly lost him and now he's crawling and will be walking soon.  Sometimes I fail miserably but others days I want to shout from the roof tops.  "LOOK at my baby!!!  He just climbed up the stairs!  He just learned to use a sippy cup!!  He's amazing!  He almost DIED and now look at him!"  While I brag endlessly on social media about him, I try to refrain from blurting out to strangers in the grocery store that he is a miracle and just let them comment on what a peanut he is.  I just smile and nod.  Of course he is special but I don't want him to grow up feeling different.  He will live in a medical world but I want him to feel "normal," whatever that is.

I'm so thankful we did monthly photos of Megatron this first year.  Even though one was taken in a hospital and one was taken 2 weeks late because we were in a hospital.  Even though he looks so sick in the 7 month picture (2 weeks pre-transplant) and so skinny in the 8 month picture (2 weeks post-transplant).  I'm glad we recorded our year even though it was traumatic. We won't ever get the first year back, so even though some of it looked so scary in pictures, I'm glad we documented it anyways.

It's been a hell of a year and if I could change it, I would.  While we have learned to appreciate life more, I would still take back Megatron's liver disease if I could.  But I can't, so I will try hard each day to focus on the good things in our world.  And I will focus on restoring some karma in my life!  Because I still think it must be out of whack!

Happy First Birthday my sweet boy!  You are one hell of a fighter, that's for sure!

Megatron at his birthday party...with his smiling, plush liver that my brother and his family found online.  He loves it!  And see that thing sticking out the top?  That's the hepatic vein and he loves to chew on it.