Feelings

I think that feelings are a lot of times underrated.  We all feel things at certain times yet it is hard to put those emotions on to paper.  This post is going to be me trying to put them all out there and let you all know my honest emotions about how I have felt.  I hope one day Lily can read this blog, when she is old enough to understand, and see that although it hasn't always been easy, I wouldn't trade one ounce of it for anything in the entire world.

"God will give never you more than you can handle."  This is honestly my motto for life.  I keep trying to think and remember that I can get through anything.  I repeated this to myself over and over and over, and told myself that I would make it. 

When she first had her seizure I remember the world spinning.  I couldn't form a coherent thought.  I remember the feeling of drowning without water.  I was looking at faces; everyones faces, trying to read their emotions.. trying to see what they thought was happening to my Lily.    I remember touching her, her skin, her hair, her tiny fingers and toes, and just trying to feel her to make sure she was still there.  The feeling of helplessness was overwhelming.  There were 15 people in the room and I couldn't fix it.  I couldn't hold her close and whisper sweet lullabies in her ear because the blood had to be drawn, the wires had to be hooked up, and she had to be watched.  When I could finally hold her I just couldn't put her down.  I didn't want to, I couldn't part with feeling her soft breath on my chest.  

I remember when the thought of Turner Syndrome finally set in.  At first it was relief.  She could live with Turner Syndrome, she could walk, talk, breathe, and just be on this Earth, something she couldn't had it been CDG.  When the feelings of what TS fully meant set in I felt a sadness that I couldn't express.  Whenever a mothers little baby girl is born, dreams are born with her.  I thought of her playing with dolls, and then the lunch dates we would have followed by mani/pedis as she got older.  I thought about how I would stress she get A's in school and get into a prestigious college because no girl of mine would EVER be dependent on a man!  I remember thinking about what her husband would be like and how beautiful her children would be some day.    It never once occured to be that she could be sick or have trouble with these things.  The only time I cried when TS was being fully described to me was when they told me that she would not be able to have children.  It felt like someone had punched me in the gut.  For as long as I can remember I wanted to be a Mommy.  I felt like it was what I was meant to do in life and I come from a long line of FANTASTIC Moms.  I remember sitting around with my neighborhood friends and playing dolls and picking out my future children's names (never got my Michelle! haha). I still wonder how one day I will tell her the having her own children is not going to be an option for her.  She may one day find a fertility doctor to try in vitro with her, but it is risky and the chances are not great for her to conceive and even less to have a healthy baby.  I feel sad about it.  Heartbroken.  

Sometimes I worry about her being picked on for being so small.  I see it at preschool already because lately the children have been calling her a "baby."  I don't know if I am doing the right thing by not letting the teacher know what is going on, but I really really want Lily to learn to deal with these things.  This is something she will forever be encountering.  Children can be mean (not as mean as teenaged girls, but still mean).  They have no filters for what they say and don't understand empathy yet.  She will have to learn her own ways to deal with ridicule.  Obviously if it got to the point where she was coming home crying I would intervene, but we aren't there.  She usually has some sort of witty comeback, and I am all the more proud of her for it.  Her personality and sass is what will attract people to her.  Her Auntie describes her as "magnet" as someone who are you are immediately attracted to, and who wouldn't want to be described that way?  Her personality makes up for what she lacks in height.  

When she was diagnosed with Celiacs my first thoughts were, "The poor thing, another thing that makes her 'different'." But honestly, that is the least of my worries these days!

Yesterday a very wise woman who I really respect told me that if I am sad about it, Lily will be sad about it because she will think she is different.  I never let her see my sadness, and that is ok for now, but soon enough she will be able to feel and sense when I am having one of my days.  I am a constant worry wort and if I wasn't worried about this, it would for sure be something else.  I get asked a lot what it was like to find out she did have TS and how I felt.  So there it is! My emotions for today! 

I saw this poem the other day and smiled, because I feel like God gave me Lily for a special reason because I would not change a single thing about her.  She is my life.  She saved me from myself and has brought me more smiles, laughter, sleepless nights, and tears than she will know.  But they aren't the sad tears, more like the happy ones because I am the lucky one to be chosen for her and I count my blessings every day.

This poem is to remind all the mommies of kids with special needs how amazing they are!

The Special Mother

by Erma Bombeck 

Did you ever wonder how mothers of disabled children were chosen? 

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation.   As He observes, He instructs His angels to make notes in a giant ledger. 

"This one gets a daughter.   The Patron saint will be Cecelia" 

"This one gets twins.   The Patron saint will be Matthew" 

"This one gets a son.   The Patron saint.....give her Gerard.   He's used to profanity" 

Finally He passes a name to an angel and smiles.  "Give her a disabled child". 

The angel is curious.  "Why this one God? She's so happy" 

"Exactly," smiles God.  "Could I give a disabled child to a mother who does not know laughter?  That would be cruel!" 

"But has she patience?" asks the angel. 

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair.   Once the shock and resentment wears off, she'll handle it.   I watched her today, she has that feeling of self and independence that is so necessary in a mother.   You see, the child I'm going to give her has his own world.   She has to make him live in her world and that's not going to be easy." 

"But Lord, I don't think she even believes in you" 

God smiles, "No matter, I can fix that.   This one is perfect - she has just enough selfishness" 

The angel gasps - "Selfishness? is that a virtue?" 

God nods.  "If she can't separate herself from the child occasionally she won't survive.   Yes here is a woman whom I will bless with a child less than perfect.   She doesn't realize it yet, but she is to be envied.   She will never take for granted a 'spoken word'.   She will never consider any 'step' ordinary.   When her child says "Momma" for the first time she will be present at a miracle and will know it.   I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them.   She will never be alone.  I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side" 

"And what about her Patron saint?" asks the angel, his pen poised in mid air.   

God smiles "A mirror will suffice"