Why am I different?

The girls are finally tucked in bed with a later bedtime than usual, but Mommy didn't get home from work until 8:30 tonight. We needed an hour together...and that's about how long it takes for the night time routine.

Thankfully, Daddy did a great job holding down the fort for a long day and he even helped with taking care of Adria's cath and flush before I got home. But he shared with me a difficult conversation he and Adria had while he was caring for her; one he said would have likely left me in a puddle.

Adria told him that she didn't like the flush and asked if she would have to use it when she grows up. The "flush" is a saline fluid mixed with a small amount of iodine, and every night we use a syringe to insert 10ml into her bladder. As you can imagine, this is not a pleasant experience for her, but it's used to cleanse her bladder and prevent urinary tract infections that are much more likely from regular catheterizing.

She asked Daddy if he and I had to use a flush. When he told her no, it started the conversation that led to questions like:
- Why do I have to wear (leg) braces? Why don't the other kids in my class wear them?
- Will I always have to wear them?
- Why do I have to use catheters? Why can't I go potty?
- Why do I have a big scar (on her back)?
- Why am I different?

Then she sobbed, he said. It was very difficult to talk with her through this. Our little 5 1/2 year old cried for a time as her heart and mind pondered these things. She has asked some questions before, but not so many at one time and never followed by tears. It surprised Adrian and left him hurting for his precious daughter.

She did not bring it up to me when I got home from work, but instead sat on my lap and showered me with kisses. I guess she's worked through it for now.

Adria dressed for pre-school with her braces and Minnie shoes on...and fabulous bow and necklace

At one point, doctors told us that the "age of awareness" for children with 'disabilities' is often around 6 or 7. It's a this point when they are cognitive enough and often in school and more social environments to be made aware of their differences. Yet, this time of inquiry crept up on us. She is quite intelligent and very observant, so we should not be surprised that she is noticing and asking questions. It's difficult to know the best thing to say, but we try to reassure her that she is beautiful, uniquely created, and deeply loved.

We often talk about her spina bifida because I think an awareness of herself is important. She knows that she was born with a "bubble" and that doctors help fix her back, but beyond that there's not too many details we get into. It may be time to tell her more in a way she can try to understand.

It may also be time to watch that PBS show that I was so impressed with several months ago called  "Different and Same" to help her see that we all have differences and they make us all uniquely special.