Friday, June 17, 2011

Not normal

Today I was so happy to go to Bailey's class party to celebrate the end of her first grade year.  I love being in her classroom  - I love the way her face lights up when she sees me, she is so happy and proud.  I love seeing her participate with her classmates and I love feeling happy with her school experience.  Her teachers every single year, since she started preschool, have been perfect for her.  Last year we had an issue with a boy who was quite unkind to her, but that has been the only real negative in her public school time so far.   That same boy was in her class this year - I even scheduled a meeting with the teacher to let her know what had happened so she could keep her eyes and ears out.  Thankfully, he must have matured somewhat because besides a few comments over the year, he and Bailey got along well.

Anyway, today for the party, the kids made a craft, had a special snack and then played a game.  Us room moms were chatting a bit and watching the kids.  I thought to myself what a good looking class it was...and I thought back to when Bailey was diagnosed with CF.  I remembered one of my nights researching CF online (I did this for many, many nights...once in awhile I still do) I came across a blog of a young girl with CF.  She looked pretty good in her healthy pictures, albeit quite thin, but in her hospital pics she looked very sickly.  Also, a friend of the family, when hearing Bailey had CF, had said they knew a family with a few CF kids and those kids all looked sick, with a blue-ish tint to their skin.  She said it to say that Bailey looked so healthy, she didn't "look like she has CF."  But instead of making me feel better, or lucky, I felt like she didn't look like that...yet.  It scared me.  The pictures of the young girl in the hospital scared me.  I was already very, very scared of her dying prematurely but then I also started being scared of not just of her dying, but what her living was going to look like.   Would she be a sick kid?  Spend weeks a year at a hospital, like so many CFers?  When she was healthy enough to be in school, would she look different, and kids would be nervous to be her friend?  How much school would she miss being sick?

During Bailey's first several months of life, I had a million thoughts race through my head, how she would look didn't occupy many thoughts, but it was there.  I wanted her to be NORMAL and have friends.  I didn't want her to stick out, I wanted her to look like any other kid.  I wanted her to grow up in a happy home, having a happy childhood, stay out of trouble as a teen, go to a good college, marry a sweet, kind boy who loved the Lord and adored my daughter, have a job she loves, have a healthy, happy family -- down the street from me.  That's it.  Her diagnosis threw so many questions into that equation.  I didn't know what any of that would look like.

But what I have learned, is that none of us moms know what that will look like!!!  What I DO know, is she is a daugher of the King, Father God.  He made her, and knows her future.  The Bible tells me that He only wants good for her, to give her hope and a future.  And get this - I have realized something else.  Bailey's diagnosis is not something that is welcome to us.  It is a disease, nothing to be wanted.  BUT we have already seen how God has used that to be a blessing in our lives, and others lives.  I have written before - and if you know Bailey you have seen - she is a sweet, sweet girl.  She is empathetic beyond her years.  Just today during that class party, one of her classmates fell out of his chair.  He bumped his head a bit and was crying - I think mostly because he was embarrassed.  The teacher went to him quickly, and guess who else.  Bailey.  "Are you ok?  Are you hurt?"  My heart almost burst with pride.

Why would I EVER want her to be "normal" as I said before...when I can have BAILEY.  She is not normal.  And I am SO, SO thankful for that.  To a bystander she certainly looks normal and healthy - and I am very thankful for that, too.  She is the picture of health actually.  But I have come to understand that being normal isn't all it's cracked up to be.  Now I have a different "equation" that I want for my girls, both of them.  Sure, I want all of those same things for them...marriage, family, career.  But more than that, so much more, I want them to have character - love, strength, joy, compassion.  A fire for the Lord that is contagious.

Both of my girls deal with a challenge that some do not.  For Bailey it's the CF, for Taylor it's her sensory and anxiety issues.  Upon first learning of their diagnoses, I was devastated.  I did not know what that would mean for their future.  I still don't know, really.  But today, not only was I so thankful that Bailey "looks" so beautiful and healthy - "normal" - but I was also so thankful she is not normal. Not because of her disease, but because of the amazing little girl she is.

Thank you God, for being all-knowing, all-seeing, all-loving.  Thank you for making Bailey as You saw fit.  Please forgive me for doubting you, for doubting your hand on her life.  I know your hand is there, God, I know you are holding her.  Thank you for that Lord, thank you.  Thank you for creating in her a heart of joy, compassion, love.  Please help me foster those characteristics in her God, help me to teach her and guide her towards what YOU want for her life, and what You want her to give to others.  Thank you God, that Bailey is not normal...and thank you for showing me You don't want her to be.  Amen.

1 comment:

  1. This is beautiful, Brynn. You're right; Bailey is not "normal," and that's what makes her special. I've always admired how sensitive she is. You're doing such an amazing job with her, and Taylor both! Keep up the good job!