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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Tuesday, April 22, 2014

What? When did this happen??

Yeah I've been asking myself this question for years... When did my little 4 lb miracle baby get so big?
He is growing up on me and I am so not prepared for this. Why why why can he just not stay little?

I can so easily remember finding out I was pregnant with you, after a year of fertility drugs, pills, shots and after a round of artificial insemination you were made.
But you made sure that your appearance was going to be just as dramatic as your conception.. trying to strangle yourself in the womb. Such a lucky day when the doctors found out. So lucky we found out in time. If not, you would not be here.
From rushing to the hospital after the doctors telling me you weren't moving to the ride down to the operating room for my emergency c - section. 
Life is a roller coaster and you made sure I was in the front row.
Emotions I hadn't prepared for as you came into this world eight weeks too soon. Seeing you with wires and tubes and lights and not being able to hold you.  To leaving you at the hospital in the care of nurses and doctors for 4 long weeks.
You are certainly a miracle baby.
And now my soon to be 7 year old. Your struggles are deep and I only wish I could see the world the way you do. I wish I could feel the things you do, how you do. To help you interpret and survive in this world.
The days I feel like giving up, I think of you. It would be easy for you to give up, the struggles you face everyday head on and keep going. You teach me so much.
You will always be my world. I will stop at nothing to make this world easier for you, to help you with your struggles. I will be your strength when you can't stand, your voice when you can't muster the words and your shadow when you get the confidence. 

Tuesday, April 15, 2014


Almost a month ago I was diagnosed with a painful auto immune disorder. I've actually been dealing with the effects of it for over a year and maybe longer but finally saw the right doctor and got diagnosed.
So I have Interstitial Cystitis, a painful bladder and pelvic disorder. But honestly it affects so much more than your bladder. It causes inflammation in your bladder walls and surrounding muscles, causing pelvic floor dysfunction. To say that is painful, is an understatement. It hurts everyday, all day, with no relief. I have to urinate almost every 30 minutes and can't empty my bladder so it always feel like I have to go even if I just went. And my bladder spasms causing me to not be able to go because my body fears the pain.
I have been through so many medications over the past month. I have tried bladder instillations, pain meds and now physical therapy. I am taking more meds than I have ever taken. I just turned 30 this past week and yet I feel like a 70 year old. It sucks to be quite honest. To try to function like a normal human being is unbearable some days, but I have to and it takes all I have to do it.
I am also coming to terms with having a chronic auto immune disorder that drastically changes my life. I have to follow a very strict IC diet, that restricts me from eating and drinking almost everything. And I constantly get asked how I am feeling..
I really don't want to talk about it, I hurt. It feels like I am being sat on by 400 lb person while they are stabbing a hot knife in my lower abdomen and twisting it over and over and over again. Do you get the picture?? If you have ever had an UTI, think about those symptoms 24/7 and 10 x worse. Don't tell me you understand cause you don't. And don't ask me if I am going to do something today other than lay on the couch with a heating pad on me. There is no way to explain to you the emotions and pain I am feeling.
I try not to whine and complain and honestly most days you will never know just how bad I feel. That's the mommy in me I suppose. I will put my needs aside because I have to. But everyday is tough, everyday sucks and hurts.
So now I'm living with IC, actually no, I am suffering with IC.