Truth be Told

The truth be told, this biliary atresia biz blows. 

It's not always sunshine and butterflies around here. 

Honestly my girl's smiles are starting to be outnumbered by her tears. And that breaks my heart. 

My best friend is here visiting from out of state. Yesterday was the first time she has seen Dru since we first brought her home. The way our lives have changed in this short amount of time is crazy!!

Dru's limbs are skinnier as her belly gets bigger. 

She is not as content. 

She won't let anyone hold her for very long except me or Bill. 

She hates being put down. 

I thought I was doing okay until Jane asked me "how are you doing". I gave her my standard--"we are doing good".

 

Then she says "No really. How's your day to day?"

And I lost it. 

Sometimes I am very overwhelmed with the NG tube, the no sleep, the painful screams I can't fix, the lack of interest in eating, the diaper changes (whole wardrobe changes), the feeling like I'm neglecting my boys and husband, the yellow eyes, that PELD score that doesn't change fast enough!!!

So many people want to help, but they can't. She is so scared of people other than Bill and I. So the thought of leaving her ups my anxiety even more. 

What I'm most scared of is the fact that the worst is yet to come. If I can't handle this now, how am I going to be when the going gets really tough?

Well I have some answers for that thank goodness. 

1) Prayer. I'm a strong believer in prayer. I know I get strength from giving everything over to The Lord. It took me most of my life to really "get it", but who better to watch over my children when I don't feel good enough?

2) my Bill. This man is my rock. I can tell him anything. We don't have to agree but he lets me vent, and he is an amazing dad. My kids are so blessed. I am so blessed. 

3) My family. There is not a person in my family who wouldn't drop everything g to help. And even though there's not a lot for them to do right now physically, their love and support carry me through. 

4) My friends. What amazing friends I have. I can't imagine raising my kids without them. Elephant moms raise their kids together, and that's what we do. This is a shout out to my herd. You know who you are. 

5)Working out. Sometimes a good sweat is the best stress reliever. And usually when I run it's very spiritual for me so I get the added bonus of more prayer. 

All in all, I am so very thankful and blessed. Once in a while a bad day comes along and I let myself think of those damn what-ifs. But after a deep breath and a good talk , and a smile from Little Miss Magic, everything's ok again and we can take on the world. 

We are going to win this fight, just you wait and see.