Tuesday, April 29, 2014

I sure do love her

This is an amazing story and tribute to the most beautiful little girl I know and love. Even though I have never met her, my feelings of love and hope grow stronger the more I learn about her. This amazing little girl is a blessing to all that she meets and is so special. Through a very special group called I Run 4, I got to be matched with her and from that moment, she has given me strength and courage through all that I do.

Her mom did an amazing job sharing her story with us

Our daughter Arianna Ferrari was born on 8/9/2013. She was diagnosed with Down
Syndrome in utero at 20 weeks. I had declined any elective testing early in my pregnancy. When my husband and I decided to try for a baby we made a decision that we both believed was so important and special that no matter what happened (and realizing typical baby is never ever a guarantee) having an abortion was not an option.  I had decided to have our anatomy ultrasound so we could find out the gender
. At this exam our specialist found Arianna had an echogenic foci (white spot which is a calcium deposit) on her heart. This causes no issues and goes away in utero on its own but it is a market for Down Syndrome. The doctor was not concerned as everything else looked great. We decided to take the MaterniT21 test just to rule out Down Syndrome. We had advised our parents and were trying to stay positive and hopeful.
When the test results came back positive we were all floored, even the doctor. I found out while and work, my co-workers were very supportive and understanding and let me go home for the day. I was scared to tell my husband, I did not want to upset him. I was dealing with the news all on my own, making phone call after phone call to our family and friends and with each phone call my emotions got better as everyone was so supportive. We have amazing family and friends, in the end we were happy to be given the chance to bring a baby into this world (as so many people these days can not). Breaking the news to my husband was the hardest. By the time I told him I had already accepted the situation and was able to be there for him. It was hard to say the least. After going through a lot of emotions and questions the pregnancy went on an all was well. The day we had Arianna the first thing we did was check her palm for the simian crease which she did have and confirmed to us at the moment that it was really true.

From that day on our lives changed forever. Arianna was healthy and was such an active little newborn. Most days I hardly thought about Down Syndrome as I was consumed with being a first time mom. She loved tummy time and was holding her up very early as well as rolling over from tummy to back at 6 weeks old! Although as the months passed and she reached 5 months old her progress started slowing down.
People with Down Syndrome have decreased muscle tone which makes it harder for them to roll, crawl, walk, talk, ect. Arianna now goes to Physical Therapy once a week and has an Early Start teacher come to our home once a week as well as extra doctor appointments and check ups. I am responsible for practicing Arianna's physical therapy for approximately 2 hours a day, everyday. Arianna works extremely hard and there are days I wish we could just cuddle and not "have" to do certain activities. I try to make sure we relax on weekends and just enjoy being a family! She has already taught us patience and persistence. We recently just got her drinking from a straw cup which took 1.5 months. Just when I want to give up I know I can't because she will get it and just needs me to keep pushing and be patient.
Our lives have so much more meaning with Arianna in it. I am excited for our future, scared for issues we will face and shitty people who will comment, but in the end we just want to make Arianna happy and give her everything she could possibly want in this life. Arianna has the ability to defy expectations and we know she will actually enjoy life and the little things us adults are too consumed with work & stress to even notice.
I am so jealous & proud she gets to have this amazing life.
written by Karin Ferrari

Arianna is a precious, beautiful, perfect little girl and she teaches us that Down Syndrome does not define who she is, she is a blessing and she teaches us love <3 p="">
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