Tuesday, February 3, 2015

Life after Down syndrome..Who are you now?

 Life before Down syndrome was pretty typical. I worked full time,took care of 3 older kids. I was a mom,nana,girlfriend and friend. I enjoyed music,concerts,dinner dates and dancing. I loved getting my nails and hair done and chatting about silly things. I laughted, I cried and loved to read. You know, just a simple life.

                                                       FAST FORWARD..

   On June 14th 2014 Skyler was born! With much surprise we received a diagnosis of Down syndrome in the delivery room. They held him over my head and said, "we think your son has markers for down syndrome" I looked up at him and I seen those little eyes and I just knew those words were true. What does that mean was going through my head faster than ever. I don't know what Down syndrome is, heck I didn't even know a person with Down syndrome. I am a huge Glee fan so I knew the little "sassy" girl on there had Down syndrome, did that count?  What did this mean for my baby? Is he going to be o.k?. They whisk him away to make sure he was o.k. (they say) Seem like forever before I seen him again. It was only about and hour if that.

   They hand me my sweet 4lb baby boy with those precious little eyes. His dad and I were just happy he was breathing. We didn't know any complications that kids with Down syndrome could have, no one explained anything. Where was a book, a doctor, social worker, another mom who has a child with Down syndrome? I had great nurses don't get me wrong, but no one explained anything to us. Maybe they didn't know what to even say. Some said, "I'm sorry" I remember one nurse who was a past co-worker of mine she congratulated us and said how cute he was also told me everything will be o.k.

   The next day our pediatrician came in she told us everything that could "go wrong" the test he needed done, how he may have a bad heart, and that he needed to go o our local NICU she did ease our mind by at least explaining things to us. She even told us about other patients of hers who also have Down syndrome. He was transferred to the nicu on my discharge date. We stayed there several days while testing was being done.(I could hardly move after a c-section)
   Fast Forward....He has Down syndrome but he's healthy otherwise.....       
Praise GOD!!!!!

    Life after a diagnosis......

   The first few weeks home the visitors came (some did) they wanted to see the cute little baby,hold him and take pictures. They offered support and said all the things you say to new moms, You know "call if you need me" he's cute, Ill see ya soon, try to rest etc.....

   Weeks go by the visitors fade, the calls and text disappear your social media becomes filled with all the other babies and parents who "get it" other parents who you now learn from, get advice from and give/receive moral support. Your life now becomes a new one. your friends fade (wasn't friends to begin with) they start to tag you in all things "Down syndrome" I love seeing it but did you forget I'm still the same person before a diagnosis? I have that same sense of humor, the same laugh, the same feelings. I didn't die over here. I enjoy the same things, the music still plays the same country station. I still enjoy doing my nails and hair, I still laugh at the craziest things and cry over the smallest things. I am the same person I was before the 'Diagnosis" Yes, I have more doctors appointments than you could imagine but I'm still ME!

   I don't want to be labeled as the 'Down syndrome" mom. Yes I have a son with Down syndrome but it doesn't define our family, as a matter of fact we don't even see Down syndrome we see SKYLER ,OUR SON  He has enriched our lives more than we could imagine, hes opened our eyes to the beauty in every second of life with him. He has taught us to learn about all children and their families. He has inspired us to create Skyler's smile baskets to welcome other new babies and parents. He gave me life again he has filled our hearts with so much joy.

   Life after a Down syndrome diagnosis is o.k.!! I ask if you have a friend or family member who just received a Ds diagnosis, Don't forget about them, include them, congratulate them, call or text them. They are the same person they was before the diagnosis and when you disappear it can make them feel more lonely than a diagnosis ever could. (my opinion)  
Who am I now? I am the same person, take the time to talk or ask questions, you will see I'm still me.

                                                                   Skyler's proud momma  

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