Imagine unexpectedly giving birth to a child with Down syndrome (Ds) and feeling a sense of detachment towards your newborn baby. Would you be able to turn that experience around in a way that would help others?
My Hero for this week is Gretchen Mather, a mother who is changing perceptions and providing support for families who are touched by Ds and other types of special needs. She says it is a role she never expected to play but is very grateful to her son Julian for opening her eyes and changing her fundamentally for the better. Julian just so happens to have an extra copy of the 21st chromosome, more commonly known as Down syndrome.
Gretchen speaks of her son Julian like the proud parent she is, but through her blog, Julian’s Journey (blog.gretchenmather.com) she also shares an honest account of her son’s birth and the trouble she had accepting her son’s diagnosis. “This is a common occurrence for families who are facing a new diagnosis,” says Gretchen. “What I didn’t realize at first is that it is natural to go through a grieving process for the typically developing child I had expected.”
She doesn’t sugar-coat the details as she describes the detachment she felt towards her son and her postpartum depression. However, you also see how her feelings for Julian and his diagnosis dramatically changed over the last year and a half as she embraces her SON and all his abilities, not just his diagnosis.
“Writing the blog is cathartic; I don’t hold anything back. I feel strongly about helping others going through the same experiences and also educating people about what it is really like to raise a child with Down syndrome,” says Gretchen.
Gretchen does not like to be thought of as a Hero. In fact, she wants you to know that she is really just an average mom doing average things with her toddler. Julian is learning to walk with his push toy and says “ma,” “buh,” (bye) and knows 9 words in baby sign language. He is putting things “in” and “out” and stacking blocks. “Sounds pretty typical, right?” Gretchen says with a smile.
“Many people don’t know what causes Down syndrome and what life is really like raising a child with special needs. It is not a death sentence, which is what I thought when Julian was born and we had a surprise diagnosis. People have so many misperceptions of life with Down syndrome and through my story I want people to know that life is pretty typical around here.”
According to Gretchen, she had a “previous narrow view of the world” and was “a bit scared of people with disabilities” before Julian was born. Today, she has met and read about many individuals with Ds who are accomplished musicians, actors, public speakers, college graduates, and living life together as married couples. “These facts and stories of amazing people with Ds is what I want the world to know,” says Gretchen.
The integrity of what she’s written on her site, as well her own metamorphosis, will help change perceptions and continue to provide support for families going through their own journey with special needs. Simply look at the hundreds of comments underneath her posts and you’ll see that she’s already made a difference!
Below are a few of excerpts from her most popular posts that Gretchen has kindly agreed to share with RM. You can click on the link to the see the entire piece. If you’d like more information on Gretchen and her initiatives, please visit her at Julian’s Journey, Facebook: Stop Disability Slurs, Twitter: @Julian’s Journey, Twitter: @SDSmovement.
“The first second that I held him I knew. I looked into his eyes for the first time and I just knew. My baby has Down syndrome. I felt a gut wrenching pain and shock as I held him in all his glory as he came straight out of my womb. This is not my baby. This baby can not be mine.” – Gretchen Mather
“I struggled with not only the diagnosis but also had post-partum depression. I had to be hospitalized in a mental hospital a few days after Julian’s birth because of my mental condition. I had two psychotic breaks characterized by delusions and a complete disconnection from reality. My mind disassociated from my body to escape the emotional pain.” – Gretchen Mather