 Meet Miriam! She is a mighty 5 year old girl who always has a big smile on her face, and she loves to play with her 3 puppies and make new friends. Miriam has Cerebral Palsy, and she and her family strive to raise awareness and bring inclusion for it every day! This interview is a little different and is told from Miriam herself! She talks about her loving family, her adoption story, a day in her life, and more! 1. Hello! To start off, can you tell me a little bit about yourself? Hiya!!! I’m Miriam, I’m a strong and mighty little 5 year old girl who loves adventure! I was severely drug exposed while I was in the womb and spent 27 days in NICU detoxing. I’m adopted and mom and dad were there the day I was born and every day since. My birth mom did a beautiful thing when she made the decision to share me with mama and daddy. She has since passed away and our family will always love her and her family for the choice she made. The drug exposure caused Hypoxic Ischemic Encephalopathy (HIE) which subsequently has led to a Cerebral Palsy diagnosis (clinically dyskinetic CP) but mom thinks I have mixed CP. It took the start of seizures and diagnosis of epilepsy at 2.5 yrs old to actually have my MRI read correctly and receive my long awaited for diagnosis of CP. Medical stuff aside! I love to make new friends, I love music, eating, and being with family! I have 3 puppies that watch over me good and an endless amount of people who love me! I use a talker to talk and I’m working on graduating from a walker to canes to walk! If I’m going a distance I also have an adaptive stroller! I also have some really cool foot braces that help reset my feet in alignment! My CP affects my whole body but it doesn’t stop me! As a family we share my journey with all the world through my page to advocate, bring awareness, to make new friends, and to share the love and message of Jesus - how his perfect plan brought us together and how he fearfully and wonderfully made me just like I am. When medical standards say I shouldn’t have even been born, God created me just right! 2. What are some of your challenges? The biggest challenges I face every day are mostly around communication and trying to break through my physical limitations! I may be considered semi-nonverbal but I know everything I want to and try to say. I have a device for talking but I feel like it slows me down, even when mom tries to explain that it helps everyone understand me. I work hard every day to grow my strength physically so I can be my most independent self, whatever that looks like, which changes every day. 3. What is your day to day life like? My day to day life probably looks very similar to the routine of most children, its just a little slower and adapted to my needs. We incorporate some physical activity every day and often that includes some physical therapy. I'm homeschooling right now because of Covid so that is also a part of my daily routine. 4. What would surprise people the most about you? Often the able bodied community assumes that because I'm semi-nonverbal that I'm not intelligent or that I cannot hear. So it surprises people that I know what they are saying or I can hear them. 5. When someone meets you for the first time, what do you hope they think? When someone meets me for the first time, I hope that they think I'm a fun, smart and joyful girl to be around and that they would love to be friends with me. 6. What is the most important thing for someone to understand about yourself? The diagnosis of CP is very broad and often very vague. The most important thing I think anyone can consider about all people with disabilities is to assume nothing more than good things. Instead of making assumptions, spend time getting to know that person if you what to know what they are like! 7. Has your diagnosis affected your parents’ jobs? Mom stays at home with me because of the extent of help and care that I need! 8. What is a recent accomplishment/ milestone of yours? After my first intensive clinic ever I have learned to go from the floor to standing independently and then follow with taking some independent steps. This is a huge accomplishment for me! 9. Are there any resources which you recommend if anyone wants to learn more about Cerebral Palsy? Moms favorite resource are other parents and families that are walking through similar seasons as we are and the number one place she finds that is her Instagram community! 10. Has the COVID-19 pandemic affected your day to day life? The main way Covid has affected my life is the limit it has put on interacting with my friends and family! I miss seeing and playing with all of my friends! 11. If you could tell the world one thing, what would it be? Say Hi! Be Kind! Be a friend!
0 Comments
 Meet Leo! He is a 7 month old boy who has a condition called Goldenhar Syndrome, which typically involves one side of the lower half of the face being underdeveloped. Still, Leo is such a charming and lively little boy who loves to socialize with new people! I conducted an interview with Leo's mother, and we discussed about Leo's condition, his cheerful personality, and more.
1. To start off, can you tell me a little bit about Leo? Leo is 7 months old, and he was born with a condition called Goldenhar Syndrome. Goldenhar syndrome affects each individual differently, but it usually involves one side of the lower half of the face being underdeveloped. There has yet to be a discovery as to why this occurs. Leo’s Goldenhar Syndrome resulted in him not to have a right eye, a missing right side of the lower jaw, an abnormal right ear, a unilateral cleft lip, palate, and nostril(all on the right), an extra digit on his right hand, and skull abnormalities. Leo is also deaf and is showing delays in his physical development. 2. What are some major challenges with having the condition Leo has? Some of the major challenges with Leo’s condition is the fact that he needs 24 hour monitoring due to his trachy and having to tube feed him instead of orally. 3. What is Leo’s day to day life like and how has it been impacted by his diagnosis? Leo has a night nurse for 5 nights a week to make sure he is being monitored during the night and do his nightly cares. We are often busy with countless appointments and travelling to and from the hospital. We rarely go anywhere apart from his appointments as it’s quite time consuming and stressful to get Leo and all his gear packed and ready to leave the house. 4. What would surprise people the most about Leo? I think people are often surprised by how happy he is. Even after his surgeries and being poked with needles, he still manages to smile and laugh. 5. When someone meets Leo for the first time, what do you hope they think? I always hope they see him as a strong happy baby boy who loves to laugh and meet new people. 6. What are some of your child’s likings? What is his personality like? Leo is very cheeky and very charming. He loves to do things that get a reaction out of people like pull his feeding tube and laugh every time you pry the tube out of his hands. He will kick whoever is sitting closest to him, grin at you until you smile back and pile all his toys and blankets on his face. Leo is very sociable and is so excited to see new people. 7. What is the most important thing for someone to understand about Leo’s condition? Leo has no idea at the moment that he looks different or is slightly different and that is the way I’d love to keep it. Leo has such a big personality and his facial differences shouldn’t stop you from getting to know him. 8. Has Leo’s diagnosis affected your job? I was a mechanic before I had Leo and always thought I’d go back to work after a year. However, due to Leo having so many appointments and needing constant monitoring, I am unable to return to work. 9. Are there any resources which you recommend if anyone wants to learn more about Leo’s condition(s)? I honestly just used Google to find out about Goldenhar Syndrome. Since everyone is affected in varying degrees, it’s hard to learn about how it may or may not affect someone unless you ask. So I’m always happy for people to ask. 10. Has the COVID-19 pandemic affected Leo’s day to day life? Yes, when we were in lockdown, a lot of Leo’s appointments and surgeries were pushed back or on hold. Now, they all seem to be happening at once. 11. If you or Leo could tell the world one thing, what would it be? Learn how to ask questions. If you don’t know what or how then just ask and apologize if it’s considered rude. I love telling people about my special boy. |
RSS Feed
