Zachary James

Zachary James

Wednesday, September 25, 2013

My Happy Bubble

Well, we made it into our 5th round of tissue expansion and I have to say I am beyond blessed to be this kid's mother.  I have been a nervous wreck with just the thought of this round so I decided that I was going to stay in my special Happy Bubble.  If I stay happy, he will stay happy...well...that is after we shook out our grouchies before getting on the plan to Chicago.   As Zac strutted onto the plane pulling behind him his brand new Lightning McQueen suitcase, I was noticing all of the smiling glances that came his way...then, out of nowhere...
Lady in second row of plane: "Does he have the measles?!!?"
Me:  "Huh... Uh...what?...Uh, no...they're just birthmarks..." 
And then...because she could not possibly end on that note...
Lady:  "BIRTH marks??" (as if I was lying to her)
Me:  "Uh huh...just birthmarks." (shuffling past her aisle to find our seat)
Really lady?  Yes, I am taking my kid onto an airplane FULL of people with an active communicable disease!  And REALLY...have you even SEEN what measles look like??  POP!! - what was that??  Oh, I was the sound of my magical Happy Bubble being pierced by ignorance.  I don't know why people seem to think they NEED to vocalize every thought in their head.  Not to's definitely not what you say...but HOW you say it.  I want to say that I absolutely welcome people asking about Zac's condition however, it was clear, given the situation, this woman had no interest.  Let this lady ruin my place of peace & tranquility...nope...but it did take time to blow my Happy Bubble back up.

Zac handled this round like a true champion.  The day before surgery, we walked from the Ronald McDonald House to Navy stroller just a beautiful stroll.  Zac's eyes lit up when we rode the enormous 'steering wheel' (Navy Pier's famous ferris wheel)...twice.  We took a ride on Thomas the Train, ate ice cream and had so much fun.  We had a great day and I hated to see it end.  We got our call for a 2 p.m. surgery.  Sigh...

Pre-surgery day at  Navy Pier
I was really dreading a 2 p.m. surgery...I mean...that's a long time to keep a hungry kid occupied!  Luckily, our time difference is 2 hours so we slept as late as we could and just took our time.  Enterprise rent-a-car picked us up from RMH.  If you ever stay at RMH - it is such a waste to rent a car as it will most likely end up parked in the garage at Lurie's Children's Hospital to the tune of $15/day.  Our rental car process went very smooth and we were on our way.  A quick stop at Starbucks and then onward to my favorite place to waste time...Target!!  Specifically, the toy aisle of Target.  We walked into the store and not five minutes after picking out a six pack of Hot Wheels, I received a call that Dr. Bauer was running early and they wanted us to come right in.  This day was moving fast.

My little hero amazed me.  I was very honest with him right from the start.  I told him that we were going to the hospital and we were going to get bubbles.  I am not sure if he fully understood what the 'bubbles' were as he made a reference to blowing bubbles later, but I know that when I acted excited...he did too.  I had been saving a special Matchbox Disney Bus and once we got into the pre-op room, I told  him to close his eyes - when he opened them, he exclaimed, "Oh wow Mommy!!  Thank you SO much!  I LOVE it!"   After being given the sedative they always give before the surgery, Dr. Bauer came in to check on Zac and to explain to me that we would have THREE expanders this time.  (mental note...get IN the Happy Bubble...)  As Dr. B was talking, he rested his arms on the rail and Zac looked up and him and took him by the hand.  It was honestly the sweetest moment. 

I love that little face - and his new signature double thumbs-up.

The surgery seemed to pass by so quickly.  I even got to meet up with some friends I met at last year's Nevus Outreach Conference.  In no time at all I was in recovery with my little guy.  We were able to leave the hospital that night so that we didn't have to deal with multiple nocturnal interruptions and headed to a nearby hotel.  As we got out of the car and I put him in the stroller my sweet boy said, "Mama, do you got my cars?"  I laughed and said that I did.  He said, "Are you sure you got ALL my cars?"  This kid was already turning a corner - amazing.  He slept pretty soundly surrounded by his cars, waking only to keep up on our Mortrin and Tylenol.  The next day we got a full dressing change at Dr. Bauer's office and headed back to RMH. 

Recovery was not as bad as it was in my mind.  He could not walk for days, but did insist on continuing to use the potty himself.  Being newly potty trained, I was worried we may regress a little in that area...  We made the stroller extra comfy with his special quilt and he was happy to ride around which meant lots of walking in the city.  We got to meet two Nevus families while staying at RMH and it was wonderful to spend time with new friends.  Good things happen to those who do not stray from their Happy Bubble.

Sunday, September 1, 2013

Back in the Saddle

If you follow this blog, you have definitely noticed we have been on hiatus.  Zac’s last round of expansion left us all a little gun-shy as it would any family.  I remember when Dr. Bauer told me after Zac’s last removal that it might be good to take a longer break….longer than the 4 month separation between surgeries.  I remember tearing up.  My first thought was, ‘I can’t take a break…I NEED to get this DONE!!”  When I asked Dr. B about it the next day, he assured me that he mentioned the break mainly for my benefit.  WOW – I must’ve looked like a real basket case. 

I thought six months would be a good break.  I thought it would give Zac’s skin ample time to heal and it would let us all enjoy some time to be ‘normal’ and it was FABULOUS!!!  Zac started pre-school a few weeks ago and loves it, what a big little man he is getting to be.  Still an absolute flirt and joyful spirit.  I scheduled the surgery for late July, and then come June, I pushed the surgery back to September, not because of Zac…because of me (ok, and partly because the humidity in Chicago in July is disgusting – I am a dry heat girl).  I am blessed to know so many families who travel this journey with me.  They have ALL had at least one round of expansion that did not go the way it was planned to.  So, I began to feel a little disappointed in myself that I couldn’t quite get over my fear of getting back in the saddle on this thing.
Zac's First Day of Preschool
Most everyone knows that Zac and I typically travel to Chicago solo.  This is not only because it is more affordable, but because it allows my daughter to stay in school and my husband to continue working so at least one of us is earning a paycheck.  I have become an AMAZING TRAVEL MOM!  (Travel Tips to follow ;)  I really don’t mind it.  Sure I could use at least one extra limb at times or someone to simply sit in the car with Zac while I run in to get some food or grab something out of the room, etc.  Which reminds me…did I tell you about the time I was checking out of Ronald McDonald House and  I was trying to get all my luggage and Zac (who was in a stroller at the time) into the elevator—let’s just say, I am glad it was not Zac who was in the elevator all by himself until my luggage returned to my floor a very long three minutes later!!!  And for those of you staying at RMH – those elevators doors are quick!
Anyway…enough travel down memory lane…to get to the point, I had such high anxiety about this trip that I was literally going down a list in my head. Zac is older, how will he react, how am I going to keep it together, how this, how that…how, how, how??  I am completely aware of the fact that how Zac reacts to this surgery will be a direct result of how I react.  Some may disagree, but I know this to be true.  The more anxiety you have about surgeries and filling the expanders – the more your child will react to your emotions.

When I explained my anxiety to my fellow moms (you know who you are and I love you to the moon and back!) they calmly (kicked me in the you know what and) reminded me that 1.  I have done this before - - lots of times.  I CAN do this and that I WOULD just do this – because this is what we do.  2.  “No one said it would be easy, they just promised it would be worth it.”  3.  Baby steps…one step, one day at a time.  There is no sense worrying about things that haven’t happened.    
So, I am going to get back on the horse and ride this one out…please pray that the trail is slow and easy and the conditions are mild – and that there’s time to stop and smell the cactus blooms – (okay well, those don’t really smell but there just aren’t that many roses in Arizona – I am sure you get the picture).