Phlebotomists are egotistical.

Well this week has proved to be quite trying for my little angel and myself.  We had our first occupational and physical therapy session. Two ladies came to our house on Tuesday for about an hour and tried to work with Carsen.  Key word there is "tried".  I wish I could have walked away from that hour with hope and excitement for Carsens future, but instead my heart was filled with complete dread.  I can't tell you how painful it is to watch two strangers hands all over your daughter, forcing her to stretch and move in ways that is unnatural to her.  These two ladies came into our house with the best intentions, but as they worked with Carsen I just had this overwhelming urge to pull my daughter out of their hands and say stop! Leave her alone!  I had an incredible internal battle throughout that hour.  On one hand yes, she needs the therapy, she needs to learn to sit up, roll over, crawl, and eventually walk, but I argued with myself saying she will learn, I will teach her, we don't need these strangers, she will do it when she is ready.  As these two ladies poked, and pulled and stretched and babbled to her, Carsen cried and cried and cried.  All I kept thinking is how terrified she must be, to have four hands all over her, and two brand new voices of people she cannot see.  I kept trying to get my voice into the mix and let her know everything is okay, that they wont hurt her, and mommy is here, but nothing would calm her down but my arms.  After that hour I made a list. A list of everything that went wrong during that hour. From the moment those two women walked through the door, the atmosphere was wrong.  They came in loud and abruptly,  immediately touching her and babbling at the same time.  I could tell from Carsens reaction the moment they walked in that this was going to be hard on her. I should have stopped them and spoke to them about how to intereact with a blind baby.  Next time though this will not happen.  I will stop them before they reach my baby and remind them that she cannot see.  Every movement needs to be slow, calm, and announced before it happens so that Carsen is prepared.  This is a learning process for all of us, even for those who are meeting my angel for the first time, and I am prepared to teach.  That is my job, I am her mother.

That evening was hard, I was tired, and overwhelmed and just feeling so sorry for my sweet baby.  I was laying on Coles shoulder sobbing and thinking how unfair her life will always be.  It's been eight and a half months and still I struggle with the question, Why her?  Why my baby?  Other kids, just get to go about their happy lives, playing and learning as they go.  Carsen's life will always be a struggle for her, with the lab draws every few months, medications, and therapies.  In this scenerio, there is no light at the end of the tunnel.  This is it.  This is her life.  I pray to God that someday I will come to terms with that, because my heart has never been heavier. 

Today I called her endocrine doctor, Dr. Corley.  Even after Carsen's medicine dose was raised two weeks ago, she is still soaking through her diapers.  We went in to get her at 6:00am this morning and could have seriously thought she had decided to take a swim in the tub during the night.  She was completely drenched from her head to her toes with urine.  Poor baby.  We changed her clothes and bedding and of course she was still happy as pie.  Her doctor upped the dosage again today and would like her to get blood work in three days to check her levels.  Hopefully this will help, if not then we may need to switch medications.  Fingers crossed her labs are good on Thursday, until then, I will be sick to my stomach dreading the lab draw and the impending fight with the phlebotomist.  I have one word for most phlebotomists, EGOTISTICAL!  Every one I meet swears they are the best blood drawer in the state. I continue to prove them wrong EVERYTIME.  Now don't me wrong, I'm sure they are plenty good, they know what they are doing, and I have no business telling them how to do their job, blah blah blah, but when I say you will not be able to get a vein from my daughter, I mean it!  I'm sure they think I'm just some crazy over protective mother who doesn't want them to hurt her baby, but that couldn't be farther from the truth.  Honestly, if they could get a vein, I would be one happy mother, and gladly let them draw blood from Carsen anytime, but it just doesn't work that way with my sweet baby.  God bless her, but I have cursed her with horrible veins, and the phlebotomists always end up poking her too many times, which ends up with a finger prick and ten minutes of milking the right amount of blood they need from her finger while she screams.  Now how is this for a heartache, my little baby has to go through this process every three months and sometimes once in between.  The process is so stressful, that I have to give her a stress dose of her hydrocortizone so that her little body can handle the stress so she does not "crash" after the torture.  Needless to say, after the event, she is out for the day, barely waking to eat.  What kind of life is this for a such a beautiful soul?

It will get better though, I know this.  I know because of the moments that are good.  The moments where Cole and I go for long walks in the neighborhood while Carsen sleeps calmly in the stroller breathing in the fresh air. Or the moments when her daddy picks her up and she immediately reaches to run her fingers through his prickly red beard.  Or when she makes that funny face when I shovel a spoon full of grean beans in her mouth and begins to gag.  Or when I am playing with her toes and kissing her feet and notice she has one very smelly foot that is so ticklish she squeals and laughs when mommy touches it.  These are the moments that I look forward to the most, and these are the moments that will make us all remember that life is beautiful, and always worth living for.

To my baby girl. The first of many....

I have been wanting to start something like this for a while now.  Eight months, and  fourteen days later I have finally found the words that my heart has been keeping wrapped up so tightly.

I want my beautiful baby girl to know what an incredible gift she has given me. I want to say thank you sweet baby for showing me what a beautiful gift life is. For showing me the world through your touch and smile. For giving me strength in moments of pure weakness and for giving me hope when I have lost it. You have so much to teach the world baby girl and I thank God every day for the opportunity to be able to love you.

I promise you baby girl that this life will be hard, there will be many hurdles and you will fall, but I also promise you baby girl that I will pick you back up. We will jump those hurdles together, and when times are hard, I will do everything in my power to help ease the pain. I promise love, to remind you every single day that you are smart, you are strong, you are beautiful.

You have been given a gift angel. A gift that makes you unique and so incredibly special. You have been given a gift that helps you see the world in ways many will never get a chance to see. Use that gift sweet baby and teach others the things you have taught me in just eight short months. This life is a blessing and we are indeed blessed. You came into this world fighting, never give up that fight.

 I live my life in fear baby girl and I pray to God that I do not pass this on to you.  My job is to protect you. What if I miss something?  A simple fuss or whine could mean terrible things.  Are you crying because your sodium is high?  Did your Grandma wash her hands before she touched yours? Did you take in enough liquid today?  Are you cold because your cortisol is low?  Are your lips dry because your thyroid is acting up?  How will we get through our next physical therapy appointment without upsetting you?  How will I teach you to sit up, crawl or walk?  How can I make you smile?  Some days all I want to do is fall to my knees and ask God why.  My brain is on full speed 24 hours a day, thinking about medications, doctors appointments, and symptoms. 
Some days I cry.  I cry because when I come into your room in the morning  you are smiling but soaked in urine up to your head because your medicine failed.  I cry because you are jumping in your jumper using only one leg.  I cry because I have to decide if your symptoms are odd enough to take you to get blood work, only to find out your levels are fine and I just put you through hell for nothing.  I cry because I have flash backs of those weeks in the hospital when you were fighting for your life and all I could do was watch and pray.  I cry because I want answers, but there are none.  And as I sit here typing, I cry tears of joy because you are snuggled warm in your bed and you know none of this. Tomorrow (or in 15 minutes) you will wake up wanting me, I will pick you up, you will run your fingers through my hair, flash me a sugary grin because you know its mommy, and  I will take a deep breath and be thankful.  Thankful because I know that I have been chosen.  Our paths choose us, we do not choose them.  You needed me angel, and I needed you, and I thank God we were so lucky to have found eachother.  I love you sweet girl.