When the boys were very little, maybe three and four years old, we tucked them into a side by side double stroller and set off with sippy cups and a diaper bag. As we walked along, Matthias saw someone staring at David, and he protectively put his arm around his brother. Steve and I exchanged a knowing glance. It was a small action with big meaning. Matthias was beginning to understand that his big brother needed looking after.
Months later, Matthias asked me, “Why do they stare?”, His green eyes full of innocence and righteous indignation. “They’ve never seen a child with only two fingers before. It’s unusual and they’re curious.” I tried to explain. My words sounded calm and rational, but inside their stares tore at my heart too. “He’s just David.” was Matthias’ perfect, childlike answer. “He’s my brother. He’s fine just the way he is.” In his unwavering acceptance of David, Matthias was beginning to grasp that his brother was different.
Sometimes I wish Matthias didn’t know so much about how hard life can be. Having a brother with a disability means simple outings sometimes turn into complicated situations. He’s heard my voice shaking as we debate taking David to the emergency room. He’s had to be flexible too many times when plans get changed because his brother is sick or in the hospital. And no one is as better at packing a bag with art supplies, books and snacks to wait out a long doctor visit.
And each time everything grinds to a halt to care for David, my heart hurts a little for Matthias. He assures me he’s fine. And I know Steve and I are intentional to make special time for him, too. But it’s hard. It’s imperfect. The stress that comes along with having a disabled brother affects Matthias, and it isn’t fair.
Thankfully he also sees the beautiful and amazing parts of this journey. Those long waits at the doctor’s office have given him time to nurture a passion for drawing and creativity. He has insights beyond his twelve years that will serve him well in life. He has compassion for others and cares for those who are hurting. Matthias adds stability to our family. We are better because of him. His life hasn’t been easy. Having a brother with a disability has shaped him and given him a bigger heart. As mothers, we want every good thing for our children.
When I see my child struggle, it breaks my heart. But as I see those struggles produce a kinder heart that loves more deeply, I’m flooded with gratefulness. This journey has it’s twists and turns but I’m finding, step by step it’s taking our little family to beautiful places. We are stronger together.
Have you walked through a hard time with your child?
Beautiful!!! When I was in college, for 8 years I worked with families and kids with special needs. I had the pleasure of working with, helping grow, and getting to know 2 kids with Cornelia de Lange. I am still close to them and many of the other families as well, even though I live in another state. Best ever!!! I now foster kids with special needs, and dogs too! There’s nothing sweeter than the bond between siblings, no matter their abilities!
Our family had a very similar lifestyle. My son is 32 and still home with his family. At times it was difficult for my daughter who was only 21 months older than her brother but she was always his advocate protecting him like a second mother. She has grown into a lovely and caring mom herself. Her career choice – a doctorate in physical therapy. Surely she was inspired by the many professionals who cared for her brother.
I hope you are still reading comments from this article. My husband is a big brother of three disabled siblings and I think he is the best husband and father because of his experience growing up. Certainly there are things he’s had to work through (like thinking he can’t have any problems because nothing was as hard as what his siblings went through). But he has been shaped into a strong, determined, helpful, reflective, compassionate, kind man who is my whole world. He keeps me together and I wouldn’t trade his childhood for anything. Love to your family.
I so understand. My younger daughter is praised by her teachers for her compassion and willingness to stand up for others. It’s hard to see them go without something or miss an event or to have me miss one due to sisters hospitalizations. Mine are now 12 & 20. Sometimes i see the frustration but that love and compassion always wins out. I find that at this age she needs to express those frustrations sometimes and i let her know it’s ok to have them.
The world would be a very boring place if we were all the same. We need to celebrate our differences and not ridicule them. Many blessing to your beautiful family.
Hi Lisa, find out if there are any SibShops in your area. Fun workshops for siblings of children with disabilities. Great support!
Does your son have Cornelia de Lange Syndrome? My great nephew does, and they look ever so much alike. His older brother has always been the same with him as your son. Very protective and perfectly happy with him just the way he is. If only more of us could be so accepting of others, the world would certainly be a much nicer place.
Yes he does!
Hi. I would love to speak to you ! This has been so hard for us ! My kids dad was struck and killed with a car in July ! Lisa this is so difficult and the hardest thing I have ever done. Could we speak soon please ? 908-227-9226
Thank you for sharing… My son has fragile X syndrome. His spirit affects us all so deeply and our children who aren’t affected are better because of him… But… It’s hard. Thank you
Such beautiful insight. Thanks for your vulnerability and sharing your precious family so the rest of us can learn and grow.
It sure sounds like you and Steve are doing a great job raising your boys!
When my son Wyatt was a baby we had him in and out of the hospital, he has a rare genetic disorder, and we never knew when we’d have to drop everything and run to the emergency room. And that was hard on him and his older sister. She has seen him go through so many struggles and would cry when he was sick. But she has also learned how strong he is and how strong she is, she always tells him how he’s doing such a good job. It is sweet seeing the kids support each other.
Take care 🙂
When my daughter was young she would question why she needed to take so many meds and do so many treatments the other kids didn’t have to do.( she has Cystic Fibrosis). I would explain to her that everyone has something, that sometimes you could see it but sometimes you couldn’t, but that we all had something we needed to deal with.
When she was five we went on vacation and met a mom and her young baby who had a large mark on his face. My daughter went over to visit with them and after a little while the mom came over to us and wanted to tell us what my daughter had said to her. I was a little nervous but the mom told me, what I had told my daughter above, and I realized she had understood. She also helped to make the mom of the other child feel better, Too.
Such a beautiful story. Right now my son was recently diagnosed with Sensory Processing Disorder, and has stomach issues and there are just so many times in the last 2 years since my son has been born that I feel like my 14 yr old daughter has been “pushed” to the side bc of her brother not feeling well or having an off day. But she is so amazing & swears she doesn’t feel that way and she is an amazing big sister to her brother. She is very protective & loves him so much.
This is so very true. I have watched our older daughter learn and grow as she has had to provide special care and attention to our younger daughter. I have noticed that she is more compationate, kind and patient than many of her peers. I know that this is due to the experiences she has had with her sister. One day out if blue she said to me, ” when I grow up, if Boo needs to live with me, that will be fine. I’ll take care of her.” It brought me to tears. Special kids deserve special siblings : )
Beautiful story! Thanks for sharing it! <3
Lisa, I also have a son with Cornelia de Lange Syndrome. He has and older brother and sister, and a baby brother who was a surprise. The love and compassion that are built within these siblings is amazing. Just tonight Blake couldn’t find one of his special toys. His 10 year old brother begins singing a Barney song and Blake just laughed and laughed. He forgot why he was upset to begin with. Just awesome! A memory stowed in my heart forever. The time that gets lost to these wonderful siblings is a guilt I think we feel only. I truly believe in my heart they are fine and happy with the way things are. They’re happy and no signs of resentment. Keep being the supermom we both know you are. So much love!!
SHAWNA
Oh, and I wanted to tell you my friend sent me this article…she thought she was looking at a photo of Blake and wanted to know who was with him. Love our CDLS babies!!!
Hi Lisa,
This is the second time I’ve read this post- You have managed to articulate some very real feelings that hit very close to home in our family. I also have two children- one is disabled and one is ‘typically developing’. Lucy is 3.5 and has Williams Syndrome- she has several congenital heart defects and has had 10 surgeries and counting. Our hospital is about four hours away from home so we have become extremely familiar with our ‘home away from home’. My other kiddo, Lainey, is 5, and has knowledge, compassion and kindness well beyond her years. We spent her second and fourth birthdays at the Ronald McDonald house in Palo Alto. When we first learned of Lucy’s condition, we met with her geneticist and he talked to us about siblings. He said that siblings tend to be more compassionate, understanding and accepting- and they usually go on to make a difference in the world. It sounds like your Matthias is well on his way to doing just that. I am so thankful that Lucy has a sibling like Laine, and visa-versa. Our family, too, is perfectly imperfect. And I wouldn’t change it for the world. Thank you for sharing your family with us. It is wonderful to see your family in “Holland” (are you familiar with that story?). We think the tulips and windmills are simply lovely.
Hello I LOVE the bar necklace.. I really want one and add my grand babies birth stones im trying to understand how to do it I have 3 babies and do you think i can add to it if needed 🙂 Is there any specials for first time people Thanks so much Kelly
I have a special child He is 39 now and has been in a wheelchair since 1985. He had friends through school that took care of him. When anyone gave him trouble they were there to take up for him. Never had a brother or sister but others took up for him. Just give him all the love you can for tomorrow he might not be there
I was attacked by my fiance of 6 yrs and almost killed in my home. He went into a drunken rage one night and beat me in front of my 10 yr old son. He had never done anything like this. We didn’t even cuss in our home. My son stabbed him one time and he later died. To say this has been hard to process is an understatement. I know that God doesn’t make mistakes and no matter what anyone thinks, God has our backs. My father gave me this necklace a couple of years ago and he had no idea the meaning behind it. ##BUTGOD
My brother and sister both have ectrodactyly syndactyly syndrome and I understand where your oldest is coming from he just wants to protect him from a world of judgement
I have a beautiful adult niece with Down Syndrome. She has taught our entire family many things: lessons about acceptance, living in the moment, and loving unconditionally. Many blessings to you and your family, Lisa.
I understand my older brother is hydrocephlic and myself being the youngest I knew he was different at a young age and have always been overprotective of him. Especially when others state or make rude comments. I don’t mind little kids staring cause I know they are curious. I wouldn’t change a thing. Kids with handicap/disabled siblings grow up differently and have a special bond with their siblings. Me and my brother have a unique way of communicating that our mom and other family don’t understand.
What amazing parents you both are. By the pictures you have posted David looks loved in everyway, as does Matthias, whom also has great compassion for others. BRAVO! I have 4 beautiful children of the 4 I have two who have had to endure difficulties. My daughter Kellie has a heart issue that. Doctors have tried to control with medication and surgery, only time will tell. And then there is my daughter Katie, who was anorexic, what a very hard battle that disease is. We are coming out on the other side! I personally couldn’t have gotten through any of this if I didn’t have faith in Jesus! Thank you for always sharing and for your beautiful jewelry and for raising two very special sweet young men.
You are doing an amazing job with both boys! It will awesome to see what God does through Mathias’ life because of what his life has been with his brother. Don’t underestimate his strength, passion and giftedness…God’s got big plans! And you’ve done a great job because he doesn’t feel left out or impatient or less than important in your family. Beautiful jewelry, too! 😉
Lisa,
You are someone who reaches out to people and befriends them w/o even knowing it! I love to read your “blog” and almost feel that I know you and what each featured piece of your jewelry stands for. Your jewelry is so inspiring, and I love every piece from you that I have. You, my friend, are so genuine……I’m proud to call you my “friend’!
Empathy and compassion are personified in your sweet Matthias. What an awesome human being he is already, at 12 years of age, he has the heart of a 75 year old with a lifetime of memories to root through.
Congratulations on doing such an awesome job raising these 2 beautiful souls.
❤️
God bless your boys! Thank you for sharing your life with us and allowing us to see all the love within it.
We have four disabled children, two of them are now with Jesus. My favorite part of this beautiful and so truthful post is when your son says “he’s just David”. I think that God must look at us that way. Thank you so much for this post. And you are right – outings are usually a three-ring-circus!
All of my kids have something and it isn’t exactly special needs. One has cleft lip and palate with hearing issues from time to time, another has Apraxia, another has Klippel Trenaunay Weber Syndrome and the last is half blind in his left eye. But they all will go to the mat for one another. They know how to really be there for each other. They know we scramble to go to all their appointments and each pitch in. And sometimes I have to say God Bless technology for the help but I feel so blessed that I was chosen to be their Mom. We all, as humans, have our own idiosyncrasies, needs, etc. and sometimes some of us show it on the outside while more of us have it on the inside. It makes all of us special and perfect, just the way we were meant to be.
When our son was born our daughter was a little over 3 years old. When our son stopped breathing for the second time it was in the middle of the night. As I was running up the stairs with him she must have woken up. I did not realize until weeks later that she had heard me. Then one one day she repeated. ” that’s when Nicky was purple mom!” I felt so bad that I could not shelter her from the things that were going on. Well today she is 21 and is doing missions work over seas. I guess God knew all along what she could handle. Outing may not always work out and Dr visits may be long but our kids are strong and their insight is amazing. Keep up the good work moms and dads. God gives kids with special needs to very SPECIAL parents!! God Bless you all.
Bonnie
Your family’s journey is so special and it is inspiring to see how you can see it from so many angles. I’m sure your older son has his difficult moments but his experiences are shaping him to be a wonderful kind hearted individual. Thank you for sharing!
This is beautiful. I’m the disabled sibling in my family. When I was 6 months old, my family was in a car accident that left me with a spinal cord injury and paralyzed from the waist down. I’ve been in a wheelchair my entire life. As long as I can remember, I’ve always felt a certain measure of guilt at being the “burden” of the family. Not that any of my family ever would have called me a burden, but I knew that medical bills added up and that I needed more help and attention than the average child. But my brothers never once complained. My being in a wheelchair was always a non-issue to them. They were, and still are, fiercely protective of me. Someone once called me crippled, and my brother punched him. I also learned, years later, that my one brother gave a presentation about me for a class project that required him to talk about someone he admired. They used to fight over who got to push me around when I needed help, and I used to spend hours pulling them around on skateboards while they held on to the back of my chair. We sat on the floor and used my wheelchair to make blanket forts, or pretended that the wheels were steering wheels for a huge ship. I am sure there are times that they were sad about the circumstances, about the fact that sometimes my parents were required to give me more attention, but they never once showed it. My brothers are good people, but I believe that my disability made them even more patient and compassionate towards others. Now we are all in our 20s, except for the youngest brother who is 16, and we are all closer than ever. I am extremely lucky.
I keep telling my husband I want one of these necklaces because I really like them but now that I know the story I want one even more because of the background because we are adopting 2 special needs 9 year old children from China. These kids mean the world to me already. I think Special children will always create a special spot in my heart.
Beautifully said. Your sons are blessed to have you as their mom. You and your husband are fantastic parents 🙂
As the sister of a low functioning woman with autism, these stories always tug at my heart. It’s nobody’s fault, but so hard growing up with this. We are adults in a kid’s body. Please make time for your typical son and realize he needs you even more. I know it’s overwhelming but I speak from the sibling experience. Support groups with other kids in a similar situation would be invaluable. Take care on your journey.
I have a sister with cp and microcephaly. She is 2.5 years older than me. I remember people always starring, especially at her leg brace. I would be so upset because like your Matthias, she was just Suzi. She was my sister. I was protective. I would stand by her so they couldn’t stare and then I would glare at them, lol. She was a difficult child and often times I was jealous of the attention she got and what special things she could do, but I was never angry at her or my parents. I don’t regret the situation. I became the person that I am because of God placing her in my life. I learned about compassion. I learned to never let anything stop you from pursuing what you do. I learned to keep going. I learned to have faith and enjoy every minute I’m given. I learned to appreciate the ability to learn. And I learned to love so much deeper. Having a special needs sister changed my life…for the better. God’s design is beautiful-no matter what! You’re doing a great job. Your boys will accomplish marvelous things!
Lisa,
Thank you for opening your mom’s heart to us! It is so hard to see your child struggle!! My son was born with Spina Bifida and has had multiple surgeries, month long hospital stays , as well as endless doctors visits. But I can tell you that he has grown to be a man of compassion and acceptance and I believe it is because of that struggle. As we have encountered other families that have experienced SB, we have always observed that the siblings of the special needs child are these amazing humans that exude all the character that we admire…kindness, gentleness, and patience. May God richly bless them all!!
My situation is not quite the same, but I feel like I understand the message. My 20 year old has been in and out of the hospital 5 times over the course of the last 8 months with a myriad of health issues and 7 surgeries. My 16yo and 12yo have been absolute champs about supporting their sister and being strong for me, but that never lessens the guilt I feel because I drop everything to be by her side and they have to fend for themselves.
I know I don’t live the day to day battles as you do, but your message is beautiful and spoke to me as a mother.
Thank you for your honesty. It is enlightening and helpful for those that read your story and can relate.
God bless.
This was written so beautifully!
Our oldest of 5 sons has cerebral palsy and now walks with a cane…it wasn’t always easy, but what an awesome journey. Our second and third sons learned to walk with Rob’s walker and they all were happy to take turns pushing Rob’s wheelchair when we were on vacations. And when he was bullied in high school they were ready to take their middle school bodies up against the entire football team. Rob is an incredible 20 year old man and his brothers love him and are probably more compassionate than they ever would have been without such an extraordinary brother!
I am the older sister to a brother with moderate Cri du Chat, a rare genetic disorder. When I was in middle school, I struggled with my brother getting all of the attention and extra care during outings, holidays, and special events. When he would get excited during a band or theater performance and call out in a quiet moment, I would be mortified and hope no one knew. Time went on, and I grew out of my painfully awkward middle school years. I began to see my situation differently. Tommy taught me things that other people my age didn’t understand: the benefits of selflessness, the importance of protecting those who cannot protect themselves, the joy of wheelchair ramps instead of stairs.
As an adult, I can see the ways that my special needs brother influenced me to be a more caring person. I chose to become a middle school science teacher. I am a stronger person who is more mature than many of my typical same-aged coworkers. I’m not going to say that I loved every moment of being a sibling of a special needs child, but I most definitely learned valuable lessons and love who I have become because of the trials.
Take heart “Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.” – Helen Keller
We proper know what are you talking about. We are a family with two lovely boys, 15 years and 4 years. Our Big Boy (his really tall, I have to look up to say hello) has ADHS, so we have some hart times behind us. But it put us more together as family, and it made him stronger. His life was and still is like waves in the big sea, we had some stormy high ones of it, and now more of small, and calmer moves, but still waves…
He’s way was often not directly form A to B, but hey, he is still going hes way, and recently pass the probation of gymnasium (CH), we are so proud of him, what he has reach till today. But it was never the situation to give up, no, but rather to look for solutions.
and my heart melt when I see how my BIG and small boys love (and fight sometime..) each other.
I can relate to this on many levels. My older son has autism, epilepsy and intellectual disabilities. My younger son has had to grow up so quickly in the past two years.
Even more challenging for my younger son is that within a week of my older son’s seizures starting I was diagnosed with a rare pediatric sarcoma. It’s been a very rough road for all of us, but for a 5yo it’s incredibly difficult.
I can so very much relate to this. To be honest, the hardest part of my journey as the mom of our youngest daughter with special needs might be watching her older sister learn to cope, understand and thrive despite the challenges. I wish every day that life was a little more “normal” for her and that so much of my thoughts and energy weren’t focused on the needs of my younger daughter. I pray that in the long run, God will produce in her the abundant harvest of compassion and empathy that can only come through suffering.
I am the oldest of a family that adopted kids with hidden special needs. They aren’t visible but they impacted every part of our lives that others couldn’t see. I wrote a blog post a few months ago about the fact that adoption will break a bio kid’s heart and that I’m so glad.
I don’t enjoy the hard times and the difficult moments, but as the sibling, I’d like to encourage you. The sibling that bears his brother or sister’s weakness, through disability or trauma or whatever it is, knows and sees how much his parents work to include him.
There will be meltdowns and hurts. But there is such a precious gift wrought in suffering, of compassion and empathy and selflessness, that makes us “other” siblings better humans and more tender to Christ for the rest of our lives. I would not trade my siblings for anything and I appreciate now as an adult the things I’ve learned from them just by being their sister.
Thanks for sharing this. I’m going to link this to our new Facebook page. My wife and I just launched our mentoring/coaching center here in Houston. Our goal is mentoring/coaching/counseling siblings of autism and other special needs.
Would love your feedback on how we can better serve these kids. We are on Facebook or the website ProjectRestoringFamilies.org
I can relate so much to this post! We have 4 children and 2 of them have special needs. I often am concerned about how the unique needs of our two girls affect our two boys who are typical kids. I agree that we want to protect our kids from any hurt or discomfort, and yet I also believe that there is something so amazing about all of our kids having each other to learn and grow in ways they would not without each other. I could go on and on about this … in the end, I am so glad that my boys will learn valuable lessons in our home and become such compassionate and patient people because of their sisters. We already are seeing that in our little 20 month old … he is so patient and content when we have to deal with a meltdown or other demanding behavior from his sister with autism. It is so heartwarming and amazing! There are definitely days when I yearn for a “typical” family … and yet I also know that God has given ME these amazing kids who teach me more and more each day about what life is really about! Loving and learning every step of the way …
I have walked a path that is not for the faint of heart as you have Lisa. Adoption has been that path for me and as the days become years you realize how the decision has changed our lives forever. In so many ways for the beauty of life redeemed. And then in some ways also so very heart breaking. As a mother you do all you can do and you ask God to help you with the rest. And then I have to rest in that. Today I am in the God taking care of some stuff for me phase. I am so thankful for His never-ending LOVE. Bless you in your journey. Thank you for being willing to share it with us. Your words are beautiful.
I loved that you shared this. My daughter is 13 and her brother 15. She has the same kind and protective heart. She is so proud of her brother who has special needs (blindness, developmental delays, etc). She has adored him since she was born and has never been embarrassed of having a sibling with special needs. I always tell her she was meant to be his sister and he her brother. This type of love is the best kind.
Please understand we siblings don’t know any different as kids. We do acquire all the positive characteristics mentioned in these posts but later on as adults is when it hits us. I am facing caring for my sister in the future and it’s difficult. I only wish I had more support as a child. It really makes an impact when you have kids of your own and look back on our childhood. I am still as an adult envious of the attention my sister gets.
Your words are so tender & take us to your soul. Have you ever considered writing a book? It could bring healing to so many living this journey..
Aw, thank you for your kind words Kelley. I have thought about it. Maybe someday? xo
I love this. I see how the Lord has given you two – not one – treasure in your boys. They were given to you to grasp in love and understanding. I am in awe of our Lord as you write into our hearts the little treasure you carry with you. Thank you
Thank you Christine. They are teaching me how to love. xo
We struggle with this everyday as well. My daughter will be 12 tomorrow and she is truly an angel. She is a simply amazing big sister to her little brother and I love how you noted Matthias is so protective of David…it made me smile thinking of how my daughter is with my son. Friday I am going to watch her deliver a presentation on why children with Autism should be in general education. This is something she volunteered to do. She is going to use her knowledge and wisdom gained through having a sibling with a disability and turn it into her passion one day. Disabilities are truly a family cause, and finding some sort of balance is always a challenge. God Bless❤
Wow! What an amazing girl she is–so brave and vocal. She is a world changer. xx
Your son has learned at an early age that life can be hard and unfair, but that it can be met with grace. Children like that grow into adults who are compassionate and empathetic. Which is what our world needs.
So true Carol! xo
Lisa, I had a father and worked with children with “disabilities”. I prefer to see them all as angels with special abilities. They give us the opportunity to grow into a kinder more loving human being…if we choose that path! I grew to consider all of the time I spent with my father as a new special memory. To this day, I cherish them all! God bless you and your family!
So beautiful Lisa.
Thank you sissy. I love you!
Lisa, you said this so well. It is so hard to not to let the care of a special needs child take too much away from the other children in the family. On the other side, those children learn lessons about life that their peers will never know.
You’re exactly right. It’s hard to find balance–and in the imperfection, there is so much grace. xx
You are a wonderful mom. You have touch my heart. I work with kids at my school who have disabilites. Those kids are so precious and so sweet!
That was so humbling what a way to make every situation positive!!! I applaud you and your family xoxo
Lisa, I don’t know you, but you have touched my heart so deeply. As an ER nurse, I have been blessed to encounter children with disabilities, and each time have been left with the feeling of having been touched by an angel. However, to hear the often untold story of the healthy sibling of a special needs child, you have opened my eyes to yet another beautiful facet of unconditional love. May God set all of his blessings upon you & your family! Thank you for sharing a piece of yourself with the rest of us….
That was perfectly said and beautiful. I agree as a RN I also have in countered disable children who in my eyes are perfect just the way God made them! I use to watch mongalod children with severe disabilities besides that and my heart soared being around them they are so loving and will remember them with great fondness. Unfortunately their parents didn’t want them and gave them up the beautiful woman who took care of them didn’t have much,a small house, unless done projects because of not enough time in day to do but the children were clean, we’ll fed, and most of all loved! She was a blessed woman, she thought because she had their unconditional Love♡