New Realizations

Madilyn is a champ.  She is always positive, always trying to help others with whatever she can, always trying to be better, always being the best sister she can, and always working hard.  You would never know on meeting her the issues with which she lives.  She feels like she has so many things wrong, but hardly ever complains.

This little one has to give herself a shot every night.  She has Turner's syndrome, which stunts her growth.  This growth hormone will hopefully help her hit 5 ft tall some day.  She does not enjoy the shot, but will dutifully shoot herself in the leg before bed each night.

She has glasses, which she hates to wear. We struggle ever having them on her face, yet she has them and wears them (just not as often as she should). 

Recently, we have found her teeth are in a traffic jam.  We assumed this would be the case--way too many teeth trying to come in an extremely small mouth.  She really has no hope as Turner syndrome girls have smaller mouths and our family has small mouths already.  Double whammy! She has a spacer in right now that we have to crank each night to help spread her palate and make room for her teeth.  Again, she dutifully brings us the crank each night before bed. She never gets to just "go to bed."  She has a few steps prior.

When she was three she had to have her tonsils and adenoids out.  The doctor told us he had never seen such huge tonsils in so tiny a body.  

When she was four she was diagnosed with Turner's Syndrome and I cried.  I cried because she will be short.  Does that matter that she will be short?  No.  I cried because she won't be able to have her own babies.  She can carry one, but cannot have her own.  I realize now she knows there are many ways to create a family.  I also know she thinks freezing eggs is gross!

I do realize all of these things are not big things and am very grateful I have this beautiful daughter that could not be more positive.  She has an amazing soul.

However, yesterday I was saddened again.  A day later I realize still there is no need to be sad.  I need to be grateful we live in a world with such amazing technology that can help her.  She has struggled with her hearing as she has had cholesteotomas over and over.  She has had five ear surgeries.  Her hearing has gone down each time.  Over the last month the doctor has done two hearing tests.  Both times I have been asked what her grades were.  I explained she has straight A's.  The doctor looked at me yesterday and said, "The only way your daughter has straight A's is she is extremely intelligent, making her own accommodations and working ten times harder than anyone else in the room.  We don't see hearing loss like this with grades like those."  I threw out my educator status claiming I really didn't feel she needed accommodations at which point the doctor let me know I was doing my daughter a disservice.  

I watched Madilyn with a hearing aid on for about 20 minutes.  I was amazed with her amazement.  She had a grin a mile wide.  She was dropping things on the ground and saying, "Mom, listen that is so cool.  It makes a sound."  She did this one too many times. I could hardly hold back my tears (except I was determined not to cry in front of her).  I don't want Madilyn to think any of her issues are sad.  We can do hard things.  She can do hard things.  

We are now left to decide what type of hearing aid. Implant?  Hearing aid?  What is best for her?  How much does it cost?  Poor little thing.  Her words with trying to make this decision last night were, "I don't want a hearing aid.  I just want my hearing."  

We are so blessed she can hear.  We are blessed there are aids out there.  It is just tough as a parent watching her go through so many things!  I feel like we can't keep up.  If it isn't one thing for her, it's another.  Yet, she continues to amaze me with her strong spirit.  She will do whatever she has to.  She will make a difference in this world.  I can tell.