Ooooh October, my favorite month of the year! It is not only my favorite because of the changing leaves and the crisp air, but also because it is Down Syndrome Awareness Month! Down Syndrome Awareness Month provides an opportunity for spreading awareness about what Down syndrome is and how people with Down syndrome bring such beauty to this world. My son Logan, was born with Trisomy 21 ( a form of Down syndrome) and I would not trade him for anything. He has given me such a wonderful outlook on my own life, and he has taught me so much. I celebrate being a mom to him and my other son, Clark, every single day.
This year, for Down Syndrome Awareness Month, I thought it would be neat to hear stories and experiences from families in our community who have a family member or family members with Down syndrome. I will be sharing 1-2 stories per week all month featuring these families and individuals. I hope you enjoy their stories as much as I do! Taking this project on has absolutely been one of the highlights of my year.
And now, without further ado, I present to you Kaaren's story about her son, Dane.
My name is Kaaren. I am going to share a snippet of my life with my miracle child whose name is Jackson "Dane." I had fertility problems, and I had gone through treatment. I was told by the fertility specialist that I had a 5% chance of getting pregnant with my own eggs. Well, a year after stopping fertility treatment, I got pregnant. Dane fell into that 5% chance, hence him being my miracle child.
I chose not to have amniocentesis because I knew my risk for my age for having a child with Down syndrome, and I absolutely didn't want to chance a miscarriage. I had an easy pregnancy, and I loved being pregnant. It wasn't until about 28 weeks, when the perinatologist picked up two anomalies on the 3D ultrasound that I knew something would be different. I am a medical provider, so I knew then that my child most likely would have Down syndrome. Again, amniocentesis was suggested and I declined.
Dane entered the world when I was 35 weeks along. He spent the first 3 weeks of his life in the NICU. He had surgery on his intestines for duodenal atresia. He also had a seizure disorder. We were blessed that he did not have any heart problems.
Fasting forward. Dane received physical therapy and occupational therapy from about 2-3 months on with an early intervention program. I am grateful for Lucy, Dane's PT, who was honest about how long it might take for Dane to go through the typical milestones of rolling, sitting, crawling, to walking. Dane didn't walk until after his sixth birthday. Lots of patience, practice, and serious perseverance. He was born with really low muscle tone, and his muscles just weren't ready until age 6 for him to be physically ready to walk on his own. I remember crying tears of joy the first time he took his first few steps on his own.
Getting Dane to transition from a bottle to a sippy, and potty trained have been our biggest hurdles. And yes, it can be frustrating. I can be honest and tell you that I am sick of changing diapers. But, in a moment of frustration, I can stop and reflect and remember thinking he might not ever walk. Dane will accomplish these hurdles, but when he is physically ready to do so. Repetition is all we can do.
Dane has been treated like any other baby and child in our family. Lots of bonding and love. I have had people say to me that I should have another child so that I would have a "normal" kid. Completely offensive, implying Dane is less than. Down syndrome, let alone any other diagnosis of special needs doesn't equate to less than as a human. Look at my child first and his diagnosis second. Dane has taught me how to slow down, and enjoy life. I wouldn't change a thing about my child. He is a ray of sunshine with a sassy personality.
Many thanks to Kaaren, for sharing her story. She is an amazing mom, and Dane is incredible. This world is a better place with Dane in it! <3