Well hello hope, nice to see you here!

There it is!! There is that glimmer of hope I have been so eagerly waiting to feel throughout this past year.  It's amazing the strength and love you gain after reaching a milestone so huge such as a 1st Birthday.  I spent the entire month of December leading up to Carsen's birthday struggling with the decision on whether or not I was going to host a party.  There is just something about inviting 40 of your closest friends and family into your home to see how truly disabled your child really is.  I just kept thinking, how am I going to feel when everyone will be expecting to see a one year old act as a one year old would on her first birthday.  Tearing wrapping paper, and shoveling her first birthday cake in her mouth was just not going to happen.  I guess I just didn't want to see the disappointment on the faces of those I love so much. I truly thought everyone would be wondering why I decided to torture them all, and make them awkwardly sing "Happy Birthday" to a sleeping child who had no clue they were there and no clue it was even her birthday.  I had this conversation with my mother two weeks before I was deciding to cancel the party.  My mother is always amazing at giving advice, and analyzing my feelings appropriately.  Her words to me made everything so clear. She said, "I think everyone invited will be honored to be there."  Hmm, I though, "Honored." What a bold word to use, and yet I knew exactly what she meant.  She asked me to put myself in their shoes, and imagine what it would feel like to be trusted enough to share such a special occasion with such a special child.  I thought hard about my decision all the way leading up to the week before her party and decided that no matter how I was feeling about the upcoming event, this is Carsen's day, and considering everything she has overcome, she should be celebrated.   I couldn't sleep all week.  I tossed and turned trying to plot how I might handle the momentous occasion if she decided to sleep through the entire thing.  I rehearsed in my head, the tiny events that would take place; the Birthday song, the candle blowing, and the present opening, praying that my sweet daughter would partake in just one of those.  After all my rehearsing, the day finally came.  I spent the entire day cleaning, and making sure Carsen was well rested.  I cried and laughed and cried more throughout the entire day while I snuggled my soon to be one year old daughter.  And then it was party time.  I was nervous, I planned the party to be in the evening, as I know that is Carsen's best time of the day after a full day of rest.  She was still sleeping soundly on the couch as people began to arrive.  One by one, I greeted our guests and lead them to the living room where they could view a sleeping one year old.  Quietly my friends and family mingled as she slept, and after about a half hour I finally I heard the best news.  "Amanda,", someone called, "She's awake!"  I swiftly crossed the kitchen into the living room to see my sweet angel just laying there looking around bright eyed, and obviously curious.  I was so excited! I quickly sat her up, and began talking to her.  In true Carsen form she had an audience within seconds.  The most incredible sound I remember from that moment was all the cooing and oohs and awws from my friends and family as they gathered around Carsen and watched her chew on her two favorite fingers.  I had never seen so many smiles and heard so much laughter surrounding my baby girl.  This is it I thought.  This was the moment where I realized we will be okay.  She will be loved.  She IS loved.  I felt as though I had been lifted out of my body and as I hovered above the excitement, I could feel Carsen come out of the shell she had been locked into for so long.  She knew that all those people were there for her, and she could feel the love just as I could.  For the next hour, all I heard throughout the house were compliments on how adorable and sweet she is.  Everyone took their turn to sit next to her, and tell her happy birthday, and as they did that, I sashayed or (waddled) around the house with a smile on my face that made my cheeks hurt.  We continued on with the party, and Carsen continued to effortlessly entertain.  We sang "Happy Birthday." I blew out the candle and then we watched her gag on the ketogenic cake I made her earlier that day.  Everyone laughed at each bite of frosting she made a funny face with, and it was perfect!  As everyone watched, I opened her gifts, and let her feel each one.  Every gift touched my heart in such a special way knowing the thought that was put into picking out the perfect gift for such a special little girl.

So finally I realized the answer was NO. At the end of the day, Carsen, did not act as a one year old would on a first birthday.  She did not tear open wrapping paper, or throw her first birthday cake on the floor or shovel it into her mouth, but she did however, act as CARSEN would on a first birthday. Which is just perfect in her own special perfect little way! She charmed those who love her, and made lovers out of those who didn't yet.


As most people would say, "Wow this year flew by so fast," I think the opposite.  This year, this one single year of mine, and Carsen's life has felt like an eternity.  With all the hospital stays and praying with all my might that she would survive, I have to say I am so glad this year is over.  Now, I thank God for the future, and that finally, I have hope.  I can see just a little bit clearer.  We have made it.  My sweet baby girl is still here, still fighting, still showing the world how truly incredibly strong she is.  She has made believers at of those who doubted her, and touched the hearts of those who now know her.  I can see great things in her future.  Carsen's neurologist has told me not to expect much from her.  But who's to say what MUCH is?? As I hugged and said good-bye too all of our friends and family, last night, I saw how truly touched they all were to have been given the opportunity to spend just a couple short hours with my little miracle.  The way Carsen makes others feel in her presence is proof that she was put here on this earth for a reason.  My sweet baby gives others hope, and the strength to press on.  She helps others see how truly beautiful life is, and that it should not be take for granted.  She has fought with all of her might to be here and I know she will continue fighting. I guess that's how MUCH I should expect from her, and I'd say that's pretty darn good. Not many people can say they have made others see the beauty in life, but Carsen can, and  Carsen does. What an amazing gift she has been given.

Please bless my baby girl on this special day as she turns one whole year old.  Thank you God for giving me such a special gift.  I promise to love and cherish her for the the rest of my life.
Happy Birthday angel, mommy loves you to the stars and back.

Hope for peace.

I am the mother of a handicapped child.  It's very odd when you come to that realization.  When people stop asking if she can crawl, sit up, or walk yet.  They are tired of hearing my disappointing responses.  Instead they ask, how is she handling her new special diet, has she had anymore seizures, and when is her next doctors appointment?  I hardly recognize myself anymore.  I have seen tired, run down parents, throughout my life, but nothing compares to the first time you look in the mirror yourself.  You haven't showered in two days, the bags under your eyes say "I'm tired, I'm sad, I'm hurt, I'm angry, and Whats the point?"  You look at your makeup bag sitting on the bathroom counter which hasn't been touched in weeks and wonder when you will feel enthusiastic enough to put on a little mascara.  Day after day, hour after hour of pill crushing, food weighing, and watching your eleven month old child lay on the couch as though she is only a day old gets tedious, and mind numbing.  You can hardly hold a conversation with another adult because the only thing your mind will let you think about is when the next medicine dose is, and how you will afford to get your child to her doctors appointment that is two hours away four or five times this month.  Still though you find the courage, and the strength to push on.  Your husband gets up for the 5:30am medicine shift while you try to catch a good two hours of un-interrupted sleep before he goes to work, but your mind somehow won't let you.  You worry, "Did she have a seizure this morning when daddy woke her up?; Did she finish her bottle this time?; Did she get the correct amount of pills this morning?" and when your dear husband puts her back to bed so that he can shower and make himself presentable for a long work day, you lay there wondering, "Is she awake?; Does she need me?; Is she afraid laying there in complete silence and darkness wondering where her parents are because she cannot see that she is in her crib safe in her room." And then its 8:00am, you get up because your tired of fighting the covers that have somehow wrapped so tightly around you in your tossing and turning, only to find that she has been asleep all this time and there was nothing to worry about.  The day presses on, you weigh out her butter, oatmeal and applesauce, crush a few pills and wake her up for breakfast, and when she does not help while being lifted you pull a muscle nearly every morning lifting 28lbs of dead weight out of her crib. At breakfast she gags through the entire meal but still you encourage her to eat by shoveling in the food and letting her chase it down with tiny amounts of water.  After breakfast it's play time, although she does not want to play, you sit her up on the floor surrounding by pillows and try to catch her interest in anything possible.  She cries the entire time, not giving a damn about the zillions of toys and bells and balls spread around her and after 30 minutes of torture you sit there wondering again, "Whats the point?" Wishing for some kind of glimpse into the future so that you could see if all this pushing for her to learn is worth it.  You ask yourself, "What if she never sits up on her own?"  How would I feel looking back on these moments that could have been spent cuddling and making her happy, but instead were spent forcing her to learn new things which she absolutely does not want to do all to find out in the end that she will never learn them and all of that precious time was wasted.  Everyday is a step forward and then two steps back.  You remember last week that you were taking pictures of your sweet 11 month old and gloating to friends and family that she is finally holding a sippy cup for the first time but now when you try to give it to her and show her the handles she cries, chokes on the milk and her hands go limp as if she cannot remember that she learned this only a few days ago.  So, you start over, slowly introducing the new nipple, slowly putting her hands on the handles, and then sitting next to her supporting the end of the bottle while pulling it in and out of her mouth until she remembers not to suck too hard or she will drown.  The rest of the day is spent crushing pills, weighing food, watching her sleep and dreaming of the day when she might wake up and call MAMA! Or simply smile at the sound of my voice.  That day will come.  I only let myself believe that because it is the only thing that gets me through the day.  Only time will tell, until then I will put a smile on my face so that others do not worry,  I will make dinner for my husband because that is what good wives do, I will go to church, give compliments, take interest in other peoples lives, and I will love my child, because no matter how hard the day is or how distant my child feels to me, or how empty her eyes are, I know that she loves me too.  Our bond is strong, I feel her pain when she hurts, I weep when she is sad, and I dream when she is sleeping.  I will use my strength to carry her now and always.  I am the mother of a handicapped child, I am proud, wise, strong, and forever grateful for she is my angel, my soul, my life.

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.