Today you are Seven!

Cameron I must tell you 7 sounds old, like really old!  As I think back to this day 7 years ago...what a day it was...all those Dr's they told us to expect the worst...  But you arrived crying and breathing and while I didn't get to hold you the 20 other people in the room all told me you were good.

Dr. Nana Matoba, the neonatologist who helped deliver you, she knew you Cameron, before I even knew what a fighter you would turn out to be, she looked me right in the eye just before you arrived and said "He will be fine" I trusted her with your life and quite frankly mine at that moment.  She proved to be a key player in your care, to this day when we see her at Children's she remembers you Cameron - you, of the thousands of fragile babies she has cared for, she remembers you!

It's because you are a fighter.  You have paved some serious ways in your 7 short years, my dear boy.

You like to throw a curve ball, you never fit into the neat little box and we wouldn't have it any other way.  Other little babies will have a brighter future because of what you have taught the Dr's. I truly believe that is one of your callings in life.  To show many of us, Dr's included... there is another way. One day I'll tell you all about your history makings, if you wish...some of them are pretty remarkable.

You are the most kind soul I've ever met, truly, wise beyond your years.  Your tolerance for pain and frustration is that of a hero...

All this serious stuff aside Cameron, most of all you are a JOY, you bring us such happiness.  You delight in the funniest little things - light up neon signs, playing store outside our house, opening and closing a restaurant/bar (really Cameron a "bar"?!?!?)  on a daily basis in our basement, you love music, have near perfect pitch and you love that very stinky, headless dog "neigh neigh" ...these are just some of your favorite now 7 year old past times.

I could write a whole novel on all of your accomplishments, but let's be honest Cameron mom needs to stop crying! You are 7 today, really 7?

You've come a long way and had to fight harder than most 7 year olds to be the smiling, happy, bouncing boy you are today.    I am pretty sure there are many people whose lives you touched and they are all wishing you a very Happy Birthday buddy right along side Mom, Dad and Connor.

The infamous phone!!!!

The joy on your face today when we finally
 found the mini phone from Pottery Barn Kids in BLUE,  not pink, you have been coveting this for literally two years - priceless. What a great present!

xoxo

Exhaling

We have big news in our house, and I hesitate to really make a big deal of this news of course out of fear that this really good news is going to just rush out and say..."oh never mind" or play a big April Fools joke on us.

 I know it's not even April but this is how my mind works, and apparently Connor's too, as he reminds me daily that I failed my motherly obligations when I did NOT play any April Fools Jokes on him!

 I am sending it out into the Universe (as a dear friend of mine says) do not let this be any sort of delayed April Fools Joke and do not take this good away... for at least a year? Is this asking too much?  If so, please just give us this summer!

The news which I have successfully plastered all over Facebook:  Cameron is doing great for the first time in 3 years! Some of you will say what do you mean, I just saw him last week, month or just yesterday and he looks great???

This would be a very true statement, but here's the deal - We have not had two consecutive "good" MRI's in seriously 3 years.  We have been in limbo, holding our breath,  as we seemingly hit a good patch and then his ventricles would change, the headaches would return and all the other symptoms... and with it, shove that breath we were about to take right back into the depths of our lungs.

Today I let that breath ago, it feel so good, better than I could have ever imagined.  You don't realize you've been holding it in for so long until it's gone.  The pit, the breath the nagging --whatever you want to call it -- is gone.  While I'd like it to last forever I know this is unlikely.  But for as long as I possibly can you can bet I am exhaling...

Tuesday was a full day at Children's to check all systems - urology, orthopaedics, neurosurgery -- it was a long 5 hour day.  We have gotten so much better at handling these days as Cameron has aged for certain, but the one thing remains - I am so utterly drained at the end, the very life is sucked out of me.

Due to scheduling we would not get the results on the MRI till Thursday, normally I can't wait that long, but I was expecting good news as Cameron has truly been on a great run lately with very few hiccups or red flags, so I didn't lose much sleep between Tue-Thur.  

Of course this would have been a recorder breaker week if we had gotten all good news.... it's always a gamble if that one kidney will give us a good report or a worrisome report.  Tuesday we got a "mildly swollen kidney" report.  Dr. said he's not too worried, just bring us back earlier than usual for repeat test.  I'm not going to go into detail on what it "could" mean because today we are choosing to focus on how fantastically awesome Cameron's BRAIN is, today!

Dr. Bowman, god love her, said the picture is just exactly what she wants to see.  What I loved hearing most was "How about we plan to see you in a YEAR" - this is amazing news. Cameron seemed of course fine with this, I wanted to jump for joy, hug him, hug Dr. Bowman and cry all at the same time.

It had been nearly a year since we had been to Lurie Hospital, as our fall follow up appointments were in clinic...I realize after having been gone from there for so long, as beautiful as it all is -- it nearly made me sick to my stomach just setting foot in the elevator.  When you are in the thick of critical care you just don't pay attention to these things, you just go on auto pilot.

Well this auto pilot is gone...thankfully.  As Mother's Day nears and I think to back to my very first Mother's day a few weeks before Cameron was born, I could not even acknowledge the day, being holed up in the hospital waiting for my very sick child to be born.   How I would have loved to been able to tell the 30 year old crushed me that it will be ok, it will not be without real challenges, but there will be real reasons to celebrate.  

Today is one of those celebrations.  Truly etching this day in my head to pull it out and get me through the next challenge...may it be far away.

Sunday please remember all those Mother's who have lost a child or are caring for a critically ill child, I saw many of them this week...I can pick out their faces in an instant, it hits way too close to home for me not to mention.  I'm a lucky mom to have these guys by my side...xoxox