I know that Down Syndrome Awareness Month is long behind us, but it’s never a bad time to raise awareness. The following was recently sent to me by a fellow mom of a child with Down syndrome. She first got in touch with me when her son was a little babe, and we’ve since become better acquainted via Facebook. The online community of parents of kids with Ds is amazing, and I am truly grateful to be a part of it.
In August of 2011, our son Jacob was born. We had the “surprise” diagnosis. We live in a rural area with very limited resources. That is why searching the Internet seemed to be my only option. We had so little knowledge of what Down syndrome was all about. Therapy for babies? I had never heard of such a thing. We do not have those resources in this immediate area. No doctor or specialist offered much information at all. As a matter of fact, a doctor told me to not read the internet at all for any information, because most of it was outdated and inaccurate. When they did try and share information it all seemed so impersonal and generic, since they had not been through it themselves. I figured that no one would be more help to our family than the up close and personal from another family. That is when we found Lisa and Finn.
SEARCH: “Down Syndrome”, “New mothers with babies with Down syndrome”, “Children with Down syndrome”, “Life with a child with Down syndrome”, etc, etc,…then I was introduced to “Life As I Know It” by Lisa Morguess. I immediately felt a connection when I saw that she was close to my age and I saw how many children she already had. I was wondering what is was like for the older children to have a sibling with Ds. I had never even read a blog before Jacob was born.
And so began my quest for information on what it was like to be a mother of a baby with Down syndrome. I knew no one at that time who had been down this path. I longed for that connection, for someone to tell me what this was going to be like.
I thought Finn was the most beautiful boy! I looked over all of Lisa’s pictures carefully and just cried like never before. Tears of joy that is! This is how Down syndrome really is! No institutions, no grim outlook at all, this really did not seem any different than raising any other typical child. I combed the blog pages looking for insight, and I got that. A very honest depiction of their life raising Finn. Also seeing another outlook on therapy was quite reassuring after feeling so much urgency and pressure from other parents in the Ds community. Another thing most people do not know is the raw grief and emotion involved when things are not quite as expected with your new born baby. I also learned this is part of the process and that it is okay. I saw how much Finn’s brothers and sisters adored him and looked after him. I loved to see how his sisters took care of him and let him play dress up with them. I soon developed an excitement about the future in days to come. I knew my daughter was also simply loving her brother for being Jacob. That is the beauty of children, they love completely and don’t even care about Down syndrome. A lesson all adults could really learn from.
I quickly learned how politically incorrect medical professionals are as a whole. Through the pages of the blog I was introduced to a more progressive way of thinking, as well as a more articulate way of speaking in a language that showed respect for all individuals living with a condition called “Down syndrome”. I have started encountering a lot of individuals who still have so many of the same old tired images of people with Down syndrome. The ” I am sorry’s”, the long face they reveal after showing them a picture of my son. I just had an elderly man tell me that he used to know “some of those”. It broke my heart, but it was then that I realized how important it is that we continue to educate the public and get rid of these old outdated images and feelings some people still have.
I no longer felt like the only woman in the world with this new path before me. I emailed Lisa with countless questions and she would always get right back to me. I soon had my friends and family read her blog so they could better understand. I became inspired, motivated and confident that we would be “okay”. I can always count on well researched topics from Lisa and value her opinions, whether I agree or not.
I have made many more connections since our journey began. However, I will never forget the day that young Finn popped up on my laptop screen and showed us all how beautiful life is.
Thank you Lisa and family for taking the time to advocate, research and educate our public on the truth and facts regarding Down syndrome. You have a strong voice and I hope you continue to be a presence in our community.