Monday, December 30, 2013

My World Sure Weighs A Lot

I think I'm at a point again where I just need to let it out.  Maybe by letting it out, I can try to let some of it go.  I did feel better the last time I spilled my guts on the blog back when I had a "confession."  There have a been a lot of days lately where I feel like the Universe is conspiring against me and my family but then something will slap me in the face and remind me that it can always be worse.  Something else that slaps me in the face daily?  The biggest bright spot I could possibly imagine.
So when then weight of the world seems to be crushing me, this little face is such a wonderful respite.  I don't think it is possible for a baby to be any cuter.  Yes, every parent says that.  :)

I have struggled tremendously since Megatron was born.  There hasn't been a shortage of drama in his 5 short months.  Death, divorce, illness and career stress have all reared their ugly head since his birth.  Through it all though, this kid just keeps growing and hitting milestones.  And I can't even begin to describe how thankful I am that he is so small and doesn't yet realize just how much we've been through since he was born.  That makes it all a little easier but there hasn't been a single day go by since he was born that I haven't cried. Sometimes I just let a few tears spill when I'm alone on my commute to work (pretty much the only time I'm alone these days).  Sometimes the crushing weight of the stress sends me to full-on sobs.

I try so so hard to not cry in front of this precious face because to him, there is no cruelty or sadness in this world.  His only anger comes from an empty belly or a full diaper.  And I want to keep it that way for as long as I possibly can.  He's going to have one hell of a rough road so I will do my best to protect him for as long as I can.

It's hard to put on a happy face around him though when the stress of the real world just won't let up.  There are big changes coming our way this week....

After a 12-week maternity leave, I was actually looking forward to returning to work.  I love what I do and after such a chaotic maternity leave between Megatron's diagnosis and surgery, I was ready to try to get back into something of a routine.  My job has always required travel but we were going to try to make it work.  Then my job situation changed and was going to require more travel.  If The Pilot was home every night, we would have still made it work.  But he isn't home every night.  There are 2, 3 and sometime 4 days at a time where I am on my own with Megatron.  If I was going to be traveling too, we would have had to ship Megatron off with family.  Again, we probably could have made it work if Megatron was a normal, healthy baby.  But he's not.  He doesn't travel light when you consider his 6 medications and that he needs more daily bottles and diapers than the average kid, at least from what we know (he doesn't absorb food well so he eats A LOT and thus also has a lot of diapers).

So where does that leave the work situation?  After an agonizing couple of weeks of trying to work with my employer to come up with an alternative, The Pilot and I made the decision for me to quit my job.  In early 2010, when I first met The Pilot I never imagined being a mom, period.  So the thought of being a stay-at-home mom is terrifying.  Yet, the Universe confirmed it was the right decision less than 24 hours after I gave notice to my employer.

The day after my employer accepted my resignation, I received a call from Megatron's GI doctor regarding the results of a recent ultrasound and dopler of his abdomen.  His spleen continues to enlarge.  While his lab work continues to look better, the enlarged spleen is a sign that his gimpy liver is still struggling.  The GI doctor ordered more labs for this week and will check out his spleen again at the end of January but suggested we start learning more about our options for a liver transplant.  Her theory is that if we learn the options before Megatron's health starts to decline, we will already be more informed and prepared for the next steps.  She had an excellent point that it is hard to retain any information when you are distraught over a critically ill child.  I already have enough trouble understanding some of the things she tells me and often end up calling the pediatrician to have her repeat everything in layman's terms.

My last day of work will be tomorrow.  We switch insurance carriers January 1 (thank goodness The Pilot held our insurance!).  Besides caring for Megatron, it will become my full-time job to work with the insurance company to start the process of meeting transplant teams.  Unfortunately they don't do liver transplants in Columbus so we will be headed to either Pittsburgh or Cincinnati.  I'm not sure yet how it will work but I am assuming we will meet with the transplant team at one, if not both centers and go from there.  When I say it is a full time job is not an exaggeration.  I have spent HOURS on the phone with insurance carriers regarding Megatron's care.  I can only imagine the transplant process will be even more time consuming.

Part of me is feeling that there will be some relief when I'm no longer working.  I'll be able to devote more time to not only Megatron but to my marriage, my house, my family, myself (things that have all been neglected at some point over the last 5 months).  The other part of me is terrified because I do love my job and still have career goals and I'm scared that I won't be as fulfilled.  I know I will cherish the time I get to spend with Megatron but I fear I'll miss my detail and deadline-driven career.  In fact, I know I will, but my hope is that I will adapt and learn new ways to fulfill that side of me.  Plus, I don't see this as a permanent solution.  I think once we get this sweet baby back on track and we get some of the other chaos in our lives under control, I will be able to look at other career options (even if it is part-time work).

Besides, if Megatron does end up needing a liver transplant sooner, rather than later, I don't know how I would manage to keep working.  We will most likely be in either Pittsburgh or Cincinnati for weeks.  The Pilot will need to keep working obviously so I will be living in Megatron's hospital room during that time.  He will need my full attention and I don't know how I would be able to keep working, even remotely.  It's one of those things that while the decision was scary and painful to make, it is already proving to be the right decision for right now.

Career aspirations aside though, I absolutely know I will never ever regret spending time with Megatron.  From the day I unexpectedly welcomed Megatron into this world, I have learned to do my best to not take anything for granted.  Life especially.  I try every single day to slow down and enjoy that sweet baby.  I don't want to rush these baby days because we won't ever get them back.  I don't want to wish away the middle of the night feedings and never ending diapers because he won't be small forever.   And no matter what happens with Megatron and his liver, I don't want to ever look back and regret not spending more time with him.  By quitting my job to care for him, I will just have that much extra time to enjoy these days.


  1. Jobs and careers and races and everything else you want to do in your life will be there. It's always there. You're little guy is a baby once. I'm like you where I feel like myself when there is a plan and things are going the way they are supposed to. You absolutely have to be an advocate and a manager when it comes to your babies health. For now you can give all of your energy to that! You don't have to do it all and it always works out the way it's supposed to! Even though you never imagined being a stay at home mom, I bet a year from now you'll say you couldn't have imagined it any other way. Hang in there! You do have a lot going on for sure!

  2. Hi - someone on Facebook pointed me to your blog because my daughter, Ana, had a liver transplant in February (she was 11 at the time). So, I can speak to you about that - definitely - but actually, I think my experience with my younger daughter, Emily, is more relevant to what you're going through right now. Emily was born with a cleft lip and palate and needed major surgery at six months old to repair her lip, then another major surgery at a year to repair her palate. I was a bundle of stress and worry - I also had to put my career on hold in order to care for Emily because she needed presurgical molding of her lip, nose and gums prior to surgery (every week for six months). First, take a deep breath. You are doing an amazing job and believe me when I say the choice to focus on your baby is absolutely the right choice right now. Please feel free to reach out to me if you want - my email address is My daughter is thriving after her transplant (by the way). You can read her story at Please consider this post a hug from a stranger (deep breaths!!)

  3. Amber, I don't really feel like I have the right words to say, but like Jackie, I want to give you a virtual hug. I'm so sorry you are going through all this. Megatron is lucky to have you and your husband as parents. I know you will continue to do a great job putting him first and being an awesome mom. I've been so lucky that Allie has been healthy, but I think back to the struggles I went through to have her, and the tears I shed, which is the closest thing I've experienced to the heart ache you are going through. I know how much that sucked and how hard it was to see the light at the end of the tunnel. I got through it, and hope that you will too. You have my email address if you ever want to "talk". Hang in there. I'm thinking of you.

  4. You are a very strong woman!!! Your little guy is one lucky little guy to have so much devotion from you.

  5. another pilot wife and new mom sending you a virtual hug and many prayers.

  6. In the words of the very wise Pearl Jam, "just breathe". I have no doubt that you will never regret this decision. You've shown those mama bear instincts from day one with your sweet little guy and those qualities are going to only help you as your family takes this journey into the transplant. I'm so sorry to hear you've all been through so much. Sending prayers and hugs to you and your family/friends.