What to Say?

To those of you who are visiting from Kelly's Korner, welcome!  I'm Julie, mom to 2 boys, and a little girl named Bella.  Bella is our medically complex, special needs child.  Bella is 4, and although she has an impressive list of diagnoses, still does not have a central diagnosis, (despite countless tests, and procedures).  She is non-mobile, nonverbal, suffers from epilepsy, low muscle tone, and the majority of her nutrition is through a G-tube.  She also suffers from an irresistible smile, contagious giggles, and crazy curls.  ;)  Bella recently was accepted into the National Institute of Health's undiagnosed disease program, and will be admitted for a week at the NIH clinical center in November.  Prayers for that week (and for this anxious mama's heart are so appreciated).  :)

I've been absent on this blog for a while, because to be honest, I'm not sure what to write.  Do I bore people by giving updates?  How much information do I share?  Do I write about yet another doctor visit, therapy appointment?  Do I write to much about Bella and not enough about the boys?

I miss writing.  I miss chatting with friends.  Sometimes, I feel as though people aren't really sure what to say to us, for fear of saying the wrong thing. 

You know what? 

I'm not sure most days what you should say either.

Some days, I want to talk about Bella and the challenges we are facing.  Other days, I really just want to get away from it all, and would love nothing more than meaningless conversation about TV shows and the latest fashions.  One hour I'm tired and grumpy from fighting yet another battle with the home care company (how hard is it to send the right box of feeding bags?),  yet in the next hour I'm giddy from a great physical therapy session. 

Confused?  Me too.  How can you know what to say, when I don't even know what I want to hear?  I have found there are some things though that should just be left unsaid (and yes, all of these have been said to me at one time or another).

1.  I don't know how you do it, because I could never do it.  You could.  I promise.  I never in a million years thought I would be the mom to a non-mobile, non-verbal child with significant medical issues.  But I am.  You do what you have to do for the people you love more than anything else in the world. 

2.  God only chooses special parents, and remember he never gives you more than you can handle.  Um, OK.  I promise you, I'm not that special.  I'm just a mom, who loves her little girl more than anything.  What you are not seeing is the sleepless nights, the tears I've cried in the shower, or the displaced anger that I've taken out on my husband and other kids by my snapping and nagging. I do think, that sometimes, God DOES give me more than I can handle. I'm so grateful though, that even when it feels like it's to much, he's never once left my side or left me all alone. 

3.  But she looks so normal!  I can't even begin to write about how much this comment irks me...

4.  She has such an easy life, being pushed around in that stroller all day!  Right.  She does.  I'm sure she would much rather be pushed around in a stroller all day rather than playing, running, and jumping like other little girls her age.

I'd much rather hear words like "I'm praying for you", "How can I help", or even just a simple, "Hi'.

That being said, the truth is, I really appreciate you taking the time to try to connect.  Thank you for including me in a conversation, and not turning your back because you don't know what to say.  Thank you for taking the time to ask me how things are going.  Thank you for not staring at my daughter, without saying a word.  Thank you for understanding that some days are hard, and that we aren't really that different, me and you. If you run into me at our kids school, or at Target, don't be afraid to say hi, or ask how things are going.  I promise I won't hold it against you if you say the wrong thing (even if you say a phrase I've listed here), if you promise to extend grace to me when I'm having a bad day.

 



Even better?  Don't forget about Bella.  The people who take the time to say hi to Bella, who give her a smile, and treat her like any other 4 year old, will always get HUGE brownie points from this mama.