Yes, my daughter is Special, and I'm so proud she is.

Forever 17

I have a 17 year old daughter we call Sis, she has had to face many challenges from the very beginning. She was born with group B strep even though she was delivered by emergency C-section and I tested negative. I was 18 years old when she came into the world and unfortunately had a very bad experience during my labor. I had a nurse that decided she didn’t agree with teen pregnancy and she was going to let me know. She yelled at me for crying, ignored all my concerns, and actually called me pathetic at one point. I had been in labor for 12 hours but Sis was not making any progress getting into position, the pain was off the charts and I opted for an epidural. Well that didn’t work out because it only numbed my left foot, then this nurse comes back in and says,” I am going to put  some water inside you, so that you do not have a dry birth” What? Its perfectly normal she says. That changed all of our lives forever.

As time went by my doctor arrived and heard what she had done and was yelling at her in the hallway, he came right in and checked on me and that’s when he looked at my chart and made the fast decision to take me in to the O.R . and get the baby out. She was in distress and it appeared as if the nurse was just ignoring this. They had to completely sedate me so I wasn’t even awake when she entered the world, and I had a reaction to the anesthesia that made it difficult for me to come out of it. Two days passed before I finally held my sweet girl, and it had already all started happening. She was so sick, with that horrible pain cry and no one did anything, I yelled at a nurse and said something is wrong with my baby and she said “fine we will go and check her out, but your probably just overreacting” Less than an hour went by and they came back with news that would shock all of us. “your baby has spinal Meningitis, that was brought on from group B strep and is now NICU”  My husband wheeled me into the NICU where my tiny baby was now hooked up to a million little cords, I cried uncontrollably as I just asked how did this happen? The nurse explained to me that Group B strep can be fatal to infants and is transferred from Mom to baby thru vaginal delivery. So how did this make sense? I tested negative and she was born by C-section? “The water I thought” that Nurse that put the water back inside me. If the water had been contaminated , and my daughter swallowed  any of this while still inside me it would make her very ill and it did.

The next day she had a stroke which then made the doctors believe that she would not make it, they told me to prepare funeral arraignments. My heart hurt so badly,  my oldest daughter hadn’t even met this sweet baby, because she was not allowed in, only parents and grandparents. I got angry when they said this to me, and told them that” I would not give up and I didn’t appreciate the fact that they were“.  I was released from the Hospital that day and had to leave without my baby, the hardest thing I ever had to do. I was there around the clock, spending every moment I could with her, loving her back to health. Praying that God would just save my sweet girl.

31 days later she came home. She beat all of the odds and refused to give up, the side affects all started to come soon after. She started having Epileptic seizures right away and there was damage to her brain from the stroke, and her diagnosis was vague, They were always giving me some long list of things she wouldn’t do, but Sis and I worked hard to prove them wrong. She will never walk, or talk, or be potty trained, she may not use her left side or ever relate to her peers. She will need life long care. Well she does walk even runs and has 15 Gold,11 silver and 6 bronze  medals for track in the Special Olympics. She talks up everyone’s ear and loves to sing, and absolutely uses the bathroom on her own. She uses her left side as much as her right and can totally relate to her peers(help from having one older and one younger sister) and yes she will require life long care and my husband and I are more than happy to give it.

At 9 she was diagnosed with Type 1 diabetes which she also just took as a trooper, devastating to me but we always seem to get thru it. She has shown me perseverance on a whole new level, she doesn’t know how to give up and in turn helps me be stronger. This sweet girl handed such a hard road and she faces it all with courage that I truly admire. Her life has changed so many people and I feel that her tragedy’s have become the glue for our family. A long time ago I had so much anger because I felt as if she was robbed of a normal childhood and would never experience the things her sisters would. This was a hard reality that I had to face. I learned to grieve the loss of the life that I had hoped for her and learn to accept the life she would have.

Seventeen years later I wouldn’t change a thing. Sis has no idea she is different than you or I, and I like it that way. She is the most inspirational person in our lives and she is the epitome of living life to the fullest.  She is mentally handicapped with cerebral palsy, epilepsy and diabetes and the strongest little lady I know. My life is fuller because of her and I no longer grieve what I had hoped for her but relish in everything she is. She is beautiful and funny, witty and loving , strong and courageous ,she’s an amazing dancer and singer, runner and jumper, hugger and kisser , and she’s mine.

She has helped us all become better people and has helped guide us to who we want to be. Her world is happy and full of love. Laughter fills her heart and she has a peace inside her that is projected onto all those around her. So when I look back at mistakes made during her arrival I no longer feel anger and I know that this is who she was meant to be and I am forever grateful for everything she is.

 

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