10 Things I Hate About You

10 things I hate about you, and by you, I mean biliary atresia. 

Or liver disease, 

Or any child being struck down with any kind of illness. 

1) Dru is 11 months old, and is frozen at a 3 month stage. We haven't experienced milestones like rolling, or crawling, or walking. 

2) My baby is getting thinner by the day. It is incredibly frustrating to see her arms so thin. Feeding her used to be the one thing I could control, and now I can't. 

3) No one is sleeping. She is up every hour at night. We are running on fumes most days. 

4) I can't enjoy it when she does happen to have a good nap. Because if she's not crying I'm questioning-Is she breathing? Did she throw up? Did she pull her tube out? ...(insert all neurotic mom thoughts here)

5) I feel tied up, or attached, all day long. During the day it's her feeding tube, at night it's the IV tube for her TPN. 

6) At a time when I feel I should be the most selfless, I am actually the most selfish. I'm missing my freedom. Not from being a mom--I love that. Freedom from being the mom of a sick kid. 

7) I have had to spend less time with my boys than I would like. My 13 year old is pretty self-sufficient and I have taken advantage of that. And my 5 year old has found a not-so-awesome babysitter in the form of an iPad. 

8) I hate that to get better, she has to get sicker. 

9) I hate that I am disappointed when her blood labs don't look worse so we can get more points. 

10) I absolutely hate that my perfect Gracie-Dru is sometimes labeled as a trial. She is an angel, her illness is the problem. 

I could list more. Like the poop and throw up. Sometimes both at the same time.

All the meds she has to take. 

Home health nurses coming here almost everyday. 

The Buddha belly that makes her so uncomfortable. 

The holding her still every time she needs a blood draw. 

Yikes!!!! I'm getting carried away. 

BUT...there are things we have gained from this adventure that I don't know would have come to me or my family other wise. 

1) Dru was adopted at 3 months old, and I worried that our bonding would be harder.

 Not true.

 It is bittersweet that she is so comforted by me...her momma. 

2) I can do hard things. At first, my biggest fear was taking care of Dru's hair. I wish that were biggest fear still. 

Then I worried about the feeding tube. No biggie. 

Now TPN. We're learning. 

What if no liver becomes available? My response to the hardest of all things will hopefully go unanswered. 

3) I have learned that attitude is everything. If I look for the bad, I'll find it, but we made the CHOICE to focus on the good. 

4) I have seen the good in people. Family, friends and strangers--all love my girl and our family. The amazing show of support we have gotten has humbled us in a way that we will never forget. 

5) Because our family is so loved, we feel a stronger desire to pay it forward. Even a word of encouragement to someone who is struggling can make such a difference. 

7) we have learned to make the little things big. Dru isn't reaching her typical milestones, but we sure find reason to celebrate other things. Friday night is a family movie night party. A Tennessee football game is a reason to dress up. A boating day means steak on the grill later. 

8)  it might not be date night, but I get to spend a lot of time with Bill. He hasn't missed a single doctor appointment or blood draw. We are blessed that his workplace is flexible with his schedule right now. 

9) I really hope my boys see the effort we make to keep their lives as normal as possible. We've rarely missed a baseball game, and if they go with us for a clinic visit we try and make it as fun as possible by taking the family to lunch and making a day of it. 

10) My faith has been strengthened beyond measure. I believe in miracles. When I am at my end, God is there to pick up my slack. What I can't handle, He does. 

11). I've also gained many friends that have had similar experiences and are a great source of support. 

12) I have found a cause to champion. I'm a huge advocate of organ donation. HEAVEN DOESNT NEED YOUR ORGANS, but angels here on earth do. Please consider being a donor. Go to organdonor.gov if you are interested or have more questions. 

Of course I would never wish for my girl to be sick. But I can't say that my life is not extremely blessed. I CANNOT wait for this adventure to be just a story we tell Dru someday. 

About how brave and strong she is. 

About how our family learned to rely on eachother. 

About how blessed we are to live in an age of modern medicine. 

About how miraculous it is that Dru and us were led to each other to be a family forever and to fight together no matter what.