Drool in my hair, leftovers from lunch on my shirt, and a full heart. Big hugs from my not-so-little brother are my absolute favourite. He is the only person I know who loves without limits, and never holds back. His life the past 21 years has been a rollercoaster filled with ups and downs, but one thing about Nigel remains the same: he is simple and he is pure.
Nigel was born June 3, 1993, a day that changed our family forever. Nigel has a very rare condition called “linear nevus sebeaceous syndrome.” I bet that 98 percent of the population has never even heard this term before, so I’ll explain Nigel the best way I know how.
He functions at about the age of 2. He is nonverbal and needs 24/7 care, including feeding and diaper changes. He also suffers from severe epilepsy, and after one brain surgery, countless medication combinations, and a vagus nerve stimulator implant, I am sad to report he still seizures on a daily basis.
Growing up with Nigel has been a journey, and our relationship has changed throughout the years.
As a little girl, I really didn’t see what made him different. I just assumed everyone had a team of nurses, therapists and doctors when they were little… it takes a village doesn’t it? I got to spend lots of time with my granny and my aunt when Mom and Dad had to travel to appointments, but I never understood the seriousness of it all; I just thought everyone wanted to hang out me.
When Nigel started at my school I remember being so excited. My little, adorable, brother was at MY school. I got hugs in the hallways and hugs at recess. He was my little security blanket that I knew I could go to when I needed some familiarity.
Not to mention, everyone else thought that Nigel was pretty cool. I can remember other kids playing with him on the school yard and singing songs to make him laugh. Most of the time this made me smile, although I will admit I would often remind the other kids that he was MY brother, so you know… back off a bit.
Our relationship got foggy when I entered into my teens. Things are so awkward during those years. I was rake thin, with braces and not-so nice skin. All I wanted to do was to fit in, and having a brother that was “different” didn’t help in that area. I hate to admit it, but I was embarrassed of my situation at home and I was scared of what other people would think. This went on for about four years.
I would only invite certain friends over who knew about my “situation” and I rarely talked about Nigel with anyone but family. I went on to high school as did Nigel two years later. My parents made the decision to send him to a different high school for two different reasons. One was that the other school was smaller with a better Special Ed program, and the other was to give me my own space. I will always be grateful that they let me have my high school years on my own. As much as I love Nigel, I needed that space to grow.
I can remember so clearly when everything changed. There were two separate events that completely dispelled all of that embarrassment stuff that haunted me during those puberty-infested years. I was probably about 16 when the first one occurred. I was in high school at the time in a family studies class. We were assigned a project where we were to address different issues that families faced. For some reason, I decided to do the project on my own family.
I don’t know why, but I was determined to break the silence I had kept for so long. I can remember doing the presentation (and holding back tears while I did it), and at the end having people come up to me and say that all this time they had thought I was an only child. People were kind of shocked, but no one treated me any different. Progress.
The second incident was not long after the ice-breaker moment. I was sitting with friends in the auditorium waiting for an assembly to start. A few students with special needs entered the gym with their EAs when I heard two students down from me say, “Here comes the retard parade.” I could literally feel my blood boiling and my hands shaking. I don’t think I had ever been that mad before.
Without hesitation I leaned right over and gave that girl a piece of my mind. It was like the words were just spilling out of my mouth. I ran up one side of her and down the other. I really can’t remember everything I said, but I do know that something along the lines of “If you said that about my brother I would kick your a**” came out. She replied with “Oh sorry, I didn’t know.” From that day forward… everyone knew. How could I be embarrassed of someone so cool and so gosh darn cute? It was like I did a complete 180.
Today I can describe my relationship with my brother as “unbreakable.” We have this bond that I don’t think anyone will ever understand. I love him more than anything in the world, and I would do anything for him. We spend lots of time together, laughing and singing and of course hugging.
I talk about him all the time. I share stories about him, I beam with pride when he does something totally amazing and fantastic like taking off his own shoe, and I am definitely not embarrassed. Although I do feel bad about my years of silence, I think that it was normal. I was pretty much embarrassed of everything back then (ask my mom!).
Today I am a very proud sister, blessed with a very special brother (struggles and all). He has made me strong, he has taught me what true love looks like, and he has reminded me every day that life does not have to be perfect be wonderful.
1. This piano that can be played with your eyes:
Eye Play the Piano is a system that allows a person to play the piano without the use of the hands or arms. An eye-tracking device mounts on the player’s head and allows them to select keys to play using eyesight, blinking and head movements. Watch high school student Kota Numajiri using the system to participate in a school Christmas concert in the video below.
2. This anti-tremor spoon that helps people with Parkinson’s disease eat on their own:
The Liftware Base Stabilizer spoon was recently acquired by Google, according to The Associated Press. The utensil allows people who live with essential tremors or Parkinson’s disease to feed themselves and more comfortably eat on their own.
3. This app that’s helping kids with autism learn to make eye contact:
Some people with autism struggle to initiate and maintain eye-contact, so reading emotions of the people around them is more difficult. To help combat this problem, Samsung and a team of scientists developed an interactive camera app called Look At Me. The app encourages children to make eye contact with a parent or guardian through the use of the smart phone camera and helps keep them motivated through a points system, themed missions and various sound and visual effects.
4. This car that wheelchair users can roll right into:
Having spent her whole life in a wheelchair, Stacy Zoern, a former intellectual property lawyer in Texas, understood the need for increased mobility and independence. So she quit her job to start the Kenguru car company, which sells electric, lightweight cars that wheelchair users can easily wheel into. The small electric car is designed to go around 25 miles per hour, making it ideal for getting around town but not for busy highway travel.
Original article HERE
For my husband and I to get away on a little vacation, we had to arrange care for our 28-year-old son. Born with a diaphragmatic hernia discovered after a complicated birth, he suffered brain damage, leaving him with severe cerebral palsy. He’s our fourth son and our sixth and last child. His older siblings ranged in ages from 2 to 9 when he was born the beginning of the Christmas season, 1985. This new baby was just another brother in their eyes. My daughters still babied him and dressed him up in funny costumes. My sons wrestled and teased him, as he rightly deserved being the baby of the family. He was included in all family outings. We’ve had angel caregivers who have assisted us over the past 28 years — mostly people we knew from our church and my parents. We had a few young men who gladly took him to a basketball game or came off the bus with him from school and treated him like one of the gang. We had women I met who loved him as much as we did and wanted a little of his heaven to rub off in their arms. Mostly though, while growing up, his brothers and sisters took care of him if my husband and I wanted a date night.
When we moved from the town he grew up in, we said goodbye to his peers and our friends. His buddies and our children graduated and went on to live their compassed lives. We found ourselves in a new city. He’d aged out of the school system, and we were all set to begin a new season of our life. We found caregivers hard to come by, and they didn’t stick around long even when they were great. It’s tougher for me to get away now, and his care is more difficult only because he’s matured into a young man, and we’ve matured into old people! Some have asked me about our plans for his care in the future. When I quickly and assuredly respond that his siblings will care for him, some have queried, “Is that really fair?” “Do you really think that should be their responsibility?” The questions are delivered in a learned tone, in a redundant fashion; mostly it’s a statement, not a true question. Trying to explain to others what his presence has added to our existence is impossible.
By a stroke of luck, most of our children ended up living near us, and we’re blessed once again with their presence but even more by their babies. When we escaped this weekend, we dropped him off at our daughter’s home. Her 2-year-old rushed to the door, “Hi, TJ!” she said with as much excitement as if he were Santa. She asks where he is if she doesn’t see him for a few days. She wants gauze taped to her stomach like he has, and the other grandkids fight over who gets to push his chair and feed him. His loud startling laugh doesn’t bother them, and when it upsets another child at a store, they can’t figure out what the big deal is.
My daughter, with her four children, gladly welcomed him to their home to continue the lesson on loving one another, serving one another, helping those who can’t help themselves and not fearing others who look different, sound different, and yes, slobber. My son and his wife stepped in to help on one of the days. Their 17-month-old loves to climb on his chair and grab his bent and spastic hands. She loves his soft hair and wants to kiss him.
Is it fair? No, it’s not fair that others can’t have a built in angel like we do. Is it their responsibility? Yes, I think it is; just as we taught them to help the guy with the flat tire along the side of the road and the new family who just pulled up with a U-Haul that needs unloading and the widow who needs her lawn mowed and her gutters cleaned out. I’m blessed with a spouse and six souls, given to me for a short time to learn lessons here on earth such as how to love unconditionally, how to love others more than myself, and how to serve others to feel the love that we believe Christ has for all of us.
Written by Rene' Steelman
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Invisibility. That’s the superpower that siblings of special needs kids cultivate. Even if they wanted a different one like being able to fly they would be stuck with invisible. It’s not a choice.
It’s not that I don’t actually see my other children. And it’s not that I don’t try. It’s just that no matter how much effort and attention I give them Haley, by virtue of her diagnosis, needs more. We all sacrifice things for her. Whether it’s a family vacation because the medical bills are too much, or a trip to an amusement park because Haley can’t do the rides, or not participating in an after school activity because Haley has a Dr appointment. But one of the things that we don’t really acknowledge is sacrificed is our family dynamic. Our relationships with each other.
In order to keep my older daughter’s life as normal as possible my husband and I do a lot of divide and conquer. The problem there is in the word divide. Because we can’t unite and conquer, it’s not really possible to plan for all of us to spend 6 hours at a swim meet. So we are left feeling like we are split shift parenting and just passing by one another most days. But it’s the only way to keep any semblance of normalcy for our children. And so we sacrifice the typical in favor of the workable. I have sacrificed the relationship that I thought I would have with my older daughter. Because of our divide and conquer approach I am typically taking care of Haley while my husband is running Emily around. They have a standing Father daughter dinner date on Friday nights after swim practice. There have been many moments that I regret missing, far too few of my own one on one moments with Emily. But it’s a sacrifice we are forced to make in order to make our family work.
Haley’s older sister Emily is a compassionate, sensitive girl. She sees, really sees, people. She is the kind of girl who would never watch someone sit alone in the lunch room without going over and inviting them to join her. She’s the kind of girl who talks openly with me about the things that teens struggle with- body image, sexual orientation, dating- and has no shame about who she is, embracing her quirks and individuality with vigor. She is accepting of everyone as she tries to navigate the bumpy waters of being a teen with dignity and maturity and confidence. She is comfortable with herself in a way that some people never are. But I know that our moments together are too few. And I recognize that she is all of those things in part because of what she’s watched her sister endure.
She’s also the same girl who once said that she wished she had an incurable illness so that we would pay as much attention to her as we do to Haley. And she’s the one who every time I say no will ask “because of Haley’s seizures?” Not knowing that it cuts a scar in my heart each time I let her down. She’s the one who has learned to ask before she eats the last of anything- is this for Haley? Because she knows that Haley can only have certain foods due to her diet therapy. She’s the one who has watched me prepare precise meals and treats for her sister every day while she has to settle for whatever Mom isn’t too tired to make.
She’s also the one who will drop whatever teen thing she’s doing to read her sister a bed time story. She’s the one who lets her sister hang out with her and her friends more than most kids her age. She’s the one who when she hears us go rushing through the house will drop what she’s doing and rush to her sister too. She’s the one who will hold Haley’s hand as the seizure grips her body and she will echo my own words “It’s ok Haley bug. I’m here for you”.
On the night of Haley’s first seizure, as Artie ran outside to help the ambulance find us, and I was on the phone with the 911 operator sobbing “please don’t let my daughter die, she’s not breathing”, Emily was the 8 year old girl left on her own to cry in the living room with no one to comfort her as I breathed air into her sisters mouth. She is the one who had no one to dry her tears as I was too busy putting my ear to Haley’s nose to see if she had resumed breathing. Emily is the one who went outside with the first policeman on the scene to see his car as he distracted her while the paramedics loaded her sister on a stretcher. She’s the girl I left behind that night to go with her sister. She’s the one who needed my care and comfort but went without because Haley needed me more.
That was the night that Emily became one of the unseen- the sacrifices, the casualties- of special needs families that don’t get talked about often enough. The sibling. The girl who feels invisible. What I want to say most is I SEE you. Not just Emily, all of you. I see you. Even if you feel invisible, even if your sibling needs more, I hope to give you enough so that you know that you are seen. And loved. And I hope you know that I would give anything to take this from you, not just from your sister, but this burden of yours as well. You are not unseen, you are just unsung. The unsung hero sacrificing pieces of your own childhood and life to save your sister. I see that. I wish I could protect you from it, but since I can’t I hope you know I’m here and I see you. I see your fear and your love and all of you. Even when you think I’m not looking, I AM.
You are not invisible to me.
Original Article Here!
Rebecca is an independent publisher working to help siblings of children with emotional challenges.