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
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