Monday, April 9, 2012

A Mother's View: Amy

On two separate occasions, a small child has come up to play with my daughter and asked me what was wrong with her eyes. I look at my daughter, and I see nothing but perfection. I think surely this child is just confused.
Hannah already has a pretty long list of diagnoses for a 12 month old baby. She was born with laryngomalacia. She developed torticollis and plagiocephaly at 3 months of age, but that has mostly resolved after 6 months of physical therapy. She is splay footed and needs braces to keep her feet aligned properly, and we are still going to physical therapy to help correct that. She still can't walk and probably won't be able to for a long time. Isn't that enough things wrong with just ONE little baby? Does she really need to have something else for me to worry about?
We went to the pediatric optometrist this afternoon, because I just couldn't get over all these small children and their innocent comments. I thought, "Surely they will tell me that Hannah is fine or that whatever they are seeing is something she will simply grow out of".
Within a few minutes of assessing her, they told me that those children were right. There is something wrong with my daughter's eyes.
Superior Oblique Palsy of the 4th cranial nerve.
Yet another genetic abnomality to add on Hannah's list of things that shouldn't have happened to such a sweet and loving little baby.
We go back for an evaluation in 3 months. If it doesn't resolve in 6 months to a year, she will most likely need surgery.
If this doesn't get fixed, she might have a hard time learning to walk, have double vision, have to wear prism glasses (which I am sure the other kids wouldn't give her a hard time about..) or a patch over one of her eyes.
She might have to grow up with strangers constantly asking her "What's wrong with your eyes?"
I know I am being vain, it's not life threatening.
"It's not that bad, it could be worse..."
Well. It could be a lot better too.

I could have given birth to a healthy baby girl, who didn't have to struggle to breathe.

Who didn't have to struggle to reach her milestones.
Who could effortless begin walking and didn't have to wear braces.
Who had perfectly symmetrical eyes and never was approached because she looked "weird".
I am just so tired of her always having to have something "wrong" with her.
When it seems like we have fixed one thing, something else pops up and she is broken again.
When does Hannah get to know what it feels like to just be a normal little girl?
Not the baby with LM.
Not the baby having to do strenous physical therapy that exhausts her because her head tilts to one side or she is behind on every milestone.
Not the baby that has to have surgery.
Just Hannah.
The happy little girl who loves to smile and gives hugs to all of her stuffed animals.
Who is brilliant, knows sign language and says 6 words.
Who loves to play outside and eat the clovers despite mommy's protests.
When does this poor little baby get to stop fighting to acheive what other kids are just born with?

Wednesday, April 4, 2012

Looking Back: Life's Plan

We all have our life plan planned out. When we are going to get married, when we are going to have babies and so on. It's all there and even though some people plan more than others...we all have somewhat of a plan...some idea of where we are headed in life.

So what do you do when your life doesn't planned?

I am an extremely planned out kind of person. I love a plan... I love a "to-do" list... I love always knowing what comes next because I am to impatient to wait and see.

With that said I can not stand surprises!

Surprise! Your baby has Laryngomalacia! That is kind of how it went when S was first diagnosed...and I stood there fumbling through the pages of my life trying to find Laryngomalacia in my plan for having a second's 8 1/2 months into it and I am still looking, just so you know.

I fought Laryngomalacia everyday
...I fought even harder when S would start to struggle. I desperately tried to change life's plan into my plan.

I can sit here and tell you my life was turned upside down, my heart has never ached so painfully before, my life has never been the same...I will never be the same. While all of that is true I truly believe life has a plan and we can either dwell on the bad or learn the lesson it is trying to teach us.

Laryngomalacia has taught me a lot about life.
S has taught me a lot about life,love and faith...more than she will probably ever know.
Life has taught me a lot about myself...and that I can throw my plan out the window :)