Thursday, December 9, 2010

True Strength

What a week this has turned out to be.  Many times I had to remind myself of one of my favorite quotes:

“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.” Christopher Reeve

This time of year is a very busy one for us, with 3 of the Little Hams having  birthdays in November and 1 in December, getting ready for Christmas and of course the end of the year is the busiest time for me at work.  I also live in constant fear, fear of every little sniffle, sneeze or wheeze that comes out of Ethan.  Some nights he lays between Chris and I sleeping and I watch/listen to him for hours. Paralyzed with fear and my mind goes to places that I HATE. 

I woke up Monday excited and ready to take on the week.  Over the weekend we celebrated Ethan's 2nd Birthday and thanked God for what a blessing Ethan is to our family.  He inspires us all every minute of every day.  In lieu of gifts this year we asked that our friends and family make a donation to CJSTUF.ORG.  This is a local organization that provides funding to families who have children with life threatening or chronic illness.  This foundation was started after the death of a sweet Angel named Charlotte.  Charlotte died at the age of 4.5 after a brave battle with cancer.  It was such an honor to host a birthday party and raise money in her memory.  I know that I have readers from all over and if you would like info on how you can host a CJ Party just pop me an email at energy4ethan@yahoo.com.  Jake and Gracie even got in the spirit and donated their weekly allowance.  Just made my heart swell with pride!

I think a lot of my problem on Monday was that I was dreading Tuesday.  Tuesday we had to take Ethan over to the hospital for his 6 month renal testing.  So the roller coaster of having a special needs child started for me bright and early.  Shari (Ethan's daytime Nannie) met us at the hospital and the testing began.  I have seen enough ultrasounds and dye tests to know when something doesn't look normal.  The tech became very concerned and stopped and just stared at the screen.  I already knew just by looking at the ultrasound that we might be in a bit of trouble.  The Ultrasound Tech left and went in to talk to the radiologist....FOREVER...

After the test results disk was made I took it over to his Urologist who called me right away to discuss options, obviously one of his kidneys looked like it might be in trouble.  I'm pretty much an open book so I immediately asked for prayers from family and friends and the prayers started coming in.  The Urologist needed to get in touch with our Nephrologist to discuss.  Now, I already know what lies ahead for Sweet Ethan.  You see he has Grade 4-5 Kidney Reflux and has already had a Pyloplasty, a failed deflux surgery and creatnine levels that hover around 1.5 on a good day.  He is at risk of losing a kidney and because both are damaged we could be in real trouble if we don't keep an eye on it and pay very close attention.  We know that another surgery is in the future for Ethan (reconstruction/reimplantation) but we (docs and us) really want to wait until he is a little older and stronger. 

So after not much sleep on Tuesday night, I headed into work this morning scared and afraid.  Scared of the unknown and than the lovely "What ifs" creep up on me ... What if he has to have the surgery now and the skills that we worked so hard to achieve are lost, what if he doesn't make it and I have to be one of "those" Mom's.  I know "those" Moms the ones who have empty arms, the ones who struggle to answer the question "How many kids do you have" when one is no longer with you.  Yep, thats the crap that goes on in my head.  Nice stuff, huh? 

So I'm at work and my wonderful hubby starts sending me sweet little text messages reminding me that I'm not alone.  I get a facebook note from a friend that I had lost touch with after college and have recently reconnected with sending me love and hugs (thanks Belynda).  I get an email from one of the "Baby Mamas"  and I won't mention her name because I didn't ask her if I could share but I'm gonna anyway. Here is some of the email that she sent me today:

I really do hope everything goes as good as possible with this whole nephrology issue. You should know that I am frequently inspired by you. Not to be flattering or anything, but here lately, when I have been exhausted and I feel like phoning it in as a mom I think to myself, "I only have one kid and he's healthy. Laura has 4, with one who she frequently stays up all night worrying about, and still has the umph to decorate a fake mantle with stockings for her kids Christmas. I think I can wash the dishes! =)" For what its worth, I think you are a pretty BadAss person.

And that made my laugh out loud for sure!  I love how people think I have it all together and I'm a BadAss, cause the truth is I try, really, really hard but I have my moments, the ones where I cry on the phone when someone calls to check on things (thanks Jenn F for listening to that yesterday), the times when I yell at my husband for something really stupid like not starting the dishwasher, the moments where I stop in a parking lot on my way home to get the kids off of the bus and have a quick cry and than go into the bathroom at McDonalds and wash my face so they don't know.  The times when I just need to have lunch with my BBFF and rant about everything and nothing important at all and than stand in the freezing cold outside and feel the warmth of her arms around me and know that it's all gonna be ok (thanks Anne Marie for helping my heart today)

And than I get home and see his sweet face

and I am reminded by Angel Charlotte that "Everyday is a Bonus" and I keep going and I get a phone call from the Nephrologist saying that she reviewed the disk and thinks we dodged a bullet and we can buy a little time and I sigh and thank God and am reminded:

“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.” Christopher Reeve
So while I can't always hold it together I know that I have the most amazing friends and family to fall on when I can't stand any longer...and a God who will never forsake me.

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