Miggy: Susan thank you so much for participating it today's spotlight! I can't wait to read more about your amazing family and specifically your son Noah. Can you take me back to the day Noah was diagnosed with Trisomy 8 and cerebral palsy? Was this while pregnant, at birth or shortly thereafter? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Susan: Noah wasn't diagnosed with Trisomy 8/CP until he was 15 months old, but I remember having the feeling that something wasn't quite right when I was pregnant with him. When Noah was diagnosed I remember feeling so alone and in shock. We were told that we should just put him in a home and walk away because he would be a vegetable for the rest of his life. Noah's Dad and I spoke not a word to each other on the 1 1/2 hour drive home. It was the hardest ride of our lives, it was like we were going home to a whole new world. One thing we did know, we were going to prove the doctor wrong and that we did. Yes, Noah can't walk or talk but he is far from a vegetable. I still at times feel lost and alone, but I'm so glad God blessed us with such an angel. He has taught us and everyone around him so much. If Noah can smile every day, what do we have to be sad about?
Miggy: Susan as you told me in your email March is Trisomy awareness month. Will you educate us a little about Trisomy 8--what are the typical hallmarks of this syndrome and how does it manifest in your son? Also, how does CP manifest in your son and overall how do your child’s needs affect your day-to-day life?
Susan: With March being Trisomy awareness month, we are so glad we can spread some awareness about Noah and his Trisomy 8. Having Trisomy 8 means Noah has an extra 8th chromosome. To give you a better idea, down syndrome is Trisomy 21. Hallmarks for Trisomy 8 are: no knee caps, full lips, prominent fore head, deep set eyes, deep creases on the hands and feet, web fingers and toes, scoliosis, kidney problems and heart issues. Noah is affected by his CP more than Trisomy 8. Noah looks like a typical boy but he has a g-tube, a cochlear implant and glasses. Noah is nonverbal and he can't walk.
Miggy: What are the biggest worries you face for Noah?
Susan: The biggest worry we had for Noah was that he wouldn't be accepted by his peers as one of them. But, about 4 years ago, we started going to our high schools' basketball games and the players started to accept Noah as part of the team. Another worry we have for him is that people look at him and think he doesn't understand. He might not be able to have a conversation, but you can tell by the smile on his face and the look in his eyes that he knows exactly what you're talking about. You just have to learn to listen in a different way.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Susan: One humorous thing we find ourselves saying to Noah is "Do you want the chokie?" Meaning that when he is in his wheelchair and does not have the harness over his chest, he tends to try and get out of his chair. So we reference the harness as the "chokie," hoping he will make the right choice of sitting up. A few more statements we have recently started to say are, "Where's your ear?" "Are you done hearing today?" "Did you put his ear in the case?" These are all in reference to his cochlear implant, he received in August 2014.
Miggy: How can people best approach or respond to your son? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Susan: A simple shake of the hand, high five or fist bump will make his day so when walking past take the time to acknowledge him. We would rather parents tell their children to go say hi to Noah instead of telling them not to stare. Even if he doesn't know you, he will smile to say hello.
Miggy: If you could say something to the mom who just starting on this journey of Trisomy 8 or CP, what would you say? What would you say to yourself if you could go back in time?
Susan: If I were speaking to new parents of a child with a disability, I would tell them to not sweat the small things and trust God. Yes, hardships may cross your path, but God will always see you through. If I could go back in time 16 years, I would tell my husband and I that we were given a child of God and that we will be the best parents that we can be. I would tell our daughters that life might not always be easy with a brother with special needs, but their experiences would transform them into incredibly caring young women.
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom? What do you want the world to know about being a Trisomy 8/CP mom?
Susan: As a mom of a son with special needs, I have learned that I am not alone, it has always been "we" and not "I." God doesn't give special kids to special families. He takes ordinary imperfect people and gifts them with his greatest treasures. And there in, creates special families. Feel free to read more about our family on our blog Our Journey With One of God's Miracles.
Susan thank you so much, that was wonderful. I loved your answer to the last question! Yes, we are all ordinary families simply being entrusted with God's treasures. Which relates to something else you said above that I love is when you said you worry that people assume Noah doesn't understand them just because he doesn't talk. "You just have to learn to listen a different way." The more I do these spotlights, the more I have a reverence and respect for all humanity. Those of us who don't have disabilities have made so many false presumptions about those who do have disabilities and it's time we learn to treat everyone with kindness, respect and love simply for the fact that they are our fellow human beings. We just can't know what lies in the hearts and minds of those around us--disabled or not--and treating people with love and respect regardless of whether or not we think they understand us is paramount. Humanity deserves respect, period. Susan, I was impressed with how you said so much with so few words. Thanks again for sharing your wonderful family with us. God bless!
You guys thank you so much for the emails and requests to participate in the spotlight. I still have so many people to email back, so if you didn't hear from me yet please know I'm doing my best to work my way down the inbox as quickly as possible. And while I had a good little flow of of emails, I still need more! So please, if you or someone you know would like to participate please email me at thislittlemiggy at gmail dot com.
Have a fantastic weekend!