I was driving home from church deep in thought.  All of a sudden I heard sirens so I immediately started looking around to make sure I didn't need to pull over.  Coming toward me was a fire truck on the other side of the divider from me.  As it passed me, I noticed that there were kids on top of the firetruck. 

And then I remembered.

It was Open House Day at the local Fire Department featuring ambulance and fire engine tours, fire truck rides, shooting the hose, dog demonstrations, face painting and more.  For some kids, that would be so awesome.  For others, not so much.   I can imagine our  little girl on top of the fire truck having a great time until they turned the siren on.  It would be all over at that very second.  She would lunge toward me, clinging to my neck and shaking from head to toe.   Yup, really awesome.

I allowed myself to feel sorry for me for a little while.  I even went a little further- because sometimes one thing leads to another in my little mind.  Like feeling that little pang when Lila was lying on the floor at ballet class last week instead of participating .   So were some of the other kids, but it's not the same.  Those kids were lying on the floor because that's what kids do sometimes.   In other people's minds, Lila was lying on the floor because she has Down Syndrome.

 I started thinking about the little girl that asked me why Lila talks so weird.  An innocent question that made me want to cry.  I held back the tears and responded, "She does talk differently, doesn't she?  We are all different in one way or another."   That answer seemed to satisfy her and she walked away, leaving me with my thoughts and tears.

I could sit and dwell on things like this all day long.   I don't want to do that.    Does it all bother me sometimes?  Yes.  I would be lying if I said no.  But then I think of our sweet and feisty little girl who works her butt off to do things that come naturally to other kids.   She never gives up, she just keeps trying.  I love that about her.

Does she have it harder than some kids?  Yes.  Does she have it a lot easier than some  kids?  Absolutely.  

Lila will probably require IVIG treatments for the remainder of her life.  We might be able to spread them out a bit more as time goes on but right now she goes monthly for a 3 hour treatment.  After they place her  IV she watches movies and has a variety of things to play with.  Is it great?  No.  Is it horrible?  Absolutely not.   Especially when you look around and see little kids getting chemo.   Mothers nursing babies who are getting chemo.  Teenagers who would love to be at school but they have to be home-schooled because of their chemo schedule.   A precious two year old girl getting chemo.  And I couldn't  help but overhear the conversation taking place between her parents and the oncologist.  Which chemo will give her the best chance at survival?  No matter what the side effects are, that is the one we want. 

In my mind- that is horrible.  

As we were leaving the oncology center last month there was a woman walking out with a baby on her hip and a little boy walking beside her.  The little boy was bald, had a large scar on the side of his head and his skin had the gray tint that is often associated with chemotherapy.  He was vision-impaired, but was doing an amazing job of navigating his way through the hallways with his walking stick.   As we walked up behind them and he heard Lila talking, he asked his mom, "Who is that?".  His mom answered that it was a beautiful little girl.  He said, "What's her name?".  His mom said, "I'm not sure".   I told them her name was Lila.   His mom said, "Oh, she's beautiful and she has a beautiful name.  She has the prettiest little flower in her hair too.  I wish you could see her."    By this time we were outside and I put my sunglasses on to hide my tears.

Our little girl has Down Syndrome.   Our little girl has a health issue which requires regular treatment.   Some days are hard.  But believe me,  this ain't nothin'. 



  1. I have been feeling down about DS lately too. Thanks for the perspective!

  2. this ain't nothin! great mantra...and so true..what we watch our kiddos endure is simply put amazing...inspiring...and when in the hospital to look over at the next child...and see them and there love ones..this ain't nothin rings so true...the little boy you met..is a boy not to forget...I bet he saw sweet Lila in his head and saw her perfectly...smiles

  3. Dad and I were talking about this last night. No matter what our struggles there are so many others who are so much worse.

    Praying for you. I love you.