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The unseen- siblings of special needs kids

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Emily and I on a rare 1:1 lunch date


The unseen-siblings of special needs kids

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. None of us got a choice. image

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.

64 thoughts on “The unseen- siblings of special needs kids”

      1. I was unable to leave a comment without attaching to this one. I loved your post. I borrowed part of it to share on my timeline with my own Amazing Invisible Daughter.

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  2. Oh. My. God. The tears are coming. I hate it when my younger daughter is alone in the other room while I am in bed with her seizing sister. I hate it that my husband works 3rd shift and she has to sometimes get herself ready for school in the morning. I hate that my 22 year old son is going to graduate from college soon and move out after missing so much time with him. It’s awful to have people offer to take care of your own children when you can’t because you can’t put your fragile child in the car to bring them to school or to a practice. It SUCKS when your first born son hits a grand slam playing baseball and you get a call from another parent. To hear the crowd cheering for him and you can’t be there. But at the same time no one will ever be more compassionate than the siblings of children with special needs. No one.

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    1. Yes! Exactly! All those missed moments. They add up to the life and relationship that we thought we would have.

      But yes. They are learning so much about love and compassion and not just tolerance but true acceptance. It’s a priceless gift that they are paying for every day.

      Thank you for sharing your story as well. You ARE doing a great job Mama. Just in case no one told you today.

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  4. I can’t even express how this post affected me. We are leading parallel lives, apparently, and your eloquent expression of the additional challenges of ensuring that the ‘invisible
    sibling’ truly feels loved, cherished, and seen. . . well, you pretty much voiced what I have not been able to express for the past 6 years. From hopes pinned on the Ketogenic diet, to our daughter’s faithful service dog, to those surreal and heart- stopping moments when we feared we lost our child, I can truly relate and feel quite a bit less alone having read this post/blog. Thank you!

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    1. I’m so sorry that you are able to relate and so grateful that you shared. It’s easy to feel alone in those moments but in truth there are many of us living parallel ones. Maybe we can help each other by sharing them. Thanks for reading!

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  5. I have 3 boys. My middle son has a severe seizure disorder. Your words evoked such strong emotion in me. I feel like you took the words straight out of my heart. It’s nice, if only for a minute, not to feel so alone. So many days I feel like I’m missing watching them grow up because their brother needs me more. I do what I feel I must do, and somewhere inside me a voice reassures me I’m doing the right thing, but it still hurts. Every day. Thank you for your words.

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    1. Thank you so much for sharing a glimpse of your story. You are doing a great job, I can tell just by the way you worry. 🙂 I’m glad that you found this space and that it helped you today.

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  6. I’m an unseen, “invisible” sibling of someone with epilepsy. I’m an adult and moved out now, so I have a bit of a different perspective than Emily…

    Reading this made me cry. I had a very similar experience the day my sister had her first seizure. And I still get PTSD-like flashback sometimes of the sheer panic and terror I felt that day. Every seizure brings back a similar panic. Will THIS be the seizure that takes her from me?

    I am commenting because I want you (and all the other parents commenting on here) to know that WE see YOU. We, the other sibling(s) that often feel neglected and don’t get as much of your attention… we see the love and dedication that you pour into our siblings. We see the pain in your eyes during every seizure. We see your exhaustion. We see your sacrifice. And we want you to know that we appreciate everything you do for us, and for our sibling.

    You are setting an excellent example for us. Someday when you are gone and it is our responsibility to take care of our sibling, we will know exactly what to do from watching you. We will make sacrifices in our our lives, and perhaps someday we’ll have our own unseen children whom don’t get our undivided attention because of their aunt/uncle.

    WE see YOU. Thank you for showing us how to love unconditionally and unselfishly. Thank you for giving and giving and giving and giving, when you rarely get anything back and rarely get thanked. Thank you.

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    1. Oh. I’m bawling now! Thank you. Thank you for giving me hope that my best will be good enough. That Emily will grow up and not only understand but be better because of it. And that we’ll always all know love. Thank you for sharing. Really. So much.

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    4. S – I made it through the blog post without crying, but YOUR comment has me sobbing. My daughter tries so hard to express this to me, but without the eloquence you have managed. Thank you.

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  8. Oh mama I echo every single sentiment. This made me cry and made my heart ache. The part about your healthy daughter during the first paramedic visit had me having to hold my chest, because my heart actually ached, for your daughter and for mine, to have gone through such things with their siblings. To read words that expressed my heart so well, made it a little bit more real what my older, healthy daughter is going through.

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  9. As everyone here has said ==these comments have rung true & hit home & brought tears of feeling for all who posted
    Being a Mom is so important and the siblings surely must feel the pain for their siblings and us as well as themselves=wondering why our family
    I can say that I have tried my very best to make special moments for both my daughters and we also make special moments together=the love/bond my daughters share is beyond words=we capture those special moments with pictures and make picture books and cherish those treasured moments/memories together
    The siblings do grow up being more caring/giving/tolerant of others and with a special love for the siblings and others=making them become the
    most wonderful adults sharing freely with those who cross their paths
    We should tell ourselves all happened as was meant to be and we
    are doing the best we can for all

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  10. Your Emily is my Gabriella, thank you for sharing this and I believe the siblings are just as unique as their special needs brother or sister if not more. Their little eyes have seen it all, their little ears have heard it all, their compassion and appreciation for life as they know it is not taken for granted, they are the unique and special ones and I sometimes forget she is just 12 years old… Amazing blog, thanks again!

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  11. I have 4 sons they are my lifeline. I have two with severely compromised immune systems. They require a ton of drs appointments and attention. Son my other 2 sweet boys seem to get let down. So this hits home for me I’d love to tell you all of a group that has changed my family. On Facebook there are two groups one is I run4 micheal: this group it very athletic people who dedicate work out to the ill children and honestly they have impacted our lives greatly every finished race they medal in the child also medals its a family penpal basically. Now there is also a group called Irun4 : unsung sibling Hero’s and this group is just for them but exactly the same things the other group does. You should check them out. They are tremendous hearted people. I love all our runners.

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  12. Dear Emily’s Mom,
    You’ve written a beautiful expression of your love for your children. All of them. And as a sibling to someone differently-abled and with medical challenges, I want to thank you for not only seeing the invisible ones, but for recognizing the unsung heroics that often are behind the scenes. Emily is truly a very special girl and a lucky one to have parents who take (because it is taking, not finding) the time to just be with her.

    Here below I’m posting a link to a letter I wrote: Dear Parents of Children With Special Needs — From a Sibling. Please know that she sees you, too. She sees how hard you work, how hard you try. There may be times she feels incredibly alone in her experience, but there are many, many other siblings who can relate, share, listen, and encourage her if she ever needs that support.

    http://themighty.com/2014/12/dear-parents-of-children-with-special-needs-from-a-sibling/

    Thank you. I know many parents feel deeply your sentiments, but you’ve shared them with your daughter. And that is worth absolutely everything.
    Cristina

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    1. Oh. My turn to bawl. Thank you. For your words and for sharing. I did share this with Emily and it was a beautiful moment I will treasure. And thank you for giving me a glimpse of the compassion and understanding that might come in the future for her the way it has for you.

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  13. I am a sibling and a child psychiatrist. What you write here is so important, and my guess is you are already doing this, but please please please – SAY all these things to your “other children”, out loud and many times over. And encourage open and difficult dialogue with them about the good, the bad and the ugly of having to work this way as a family. Create a safe place for all to acknowledge the sadnesses, the joys, the fears, the grief that we families with special needs members uniquely experience. And find support – there are many books written for and about siblings. Check out siblingsupportnetwork.org, or any work by Don Meyer. There are closed Facebook groups for adult and teen siblings of people with disabilities. They will help your other children not feel so alone as siblings. Thank you.

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    1. I so agree! I did share this post with Emily and I have encouraged her to write her own response which I hope to publish in the next few weeks. It was a lovely moment. And I hope it truly helped her to understand that we recognize things are difficult for her and that we are a safe space to talk about her feelings. Or we can help her find one if she needs.
      Thank you.

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  14. As the adult sibling of a severely affected individual, I am completely full of resentment towards my parents and the sibling. Not trying to bring everyone down but just being honest unfortunately. Life is 100% about him. Always was, always will be. Unlike parents who had at least a couple decades before the affected child was born, this is all I know, we are so close in age. If your child brings these feelings towards you,t he worst thing you can do is say ‘be grateful you aren’t like them’

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    1. I hope that I gave an accurate glimpse of life as a SN mom who is trying my best. I don’t want to minimize or romanticize what Emily endures. It is no more or less painful for her than it is for her sister. It’s just different. I am so sorry that you feel the way that you do. While life is never all rainbows and sunshine everyone deserves a balance. It’s important to acknowledge that no one in the family chose this life. And we are all just doing our best.

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  15. Thank you for writing this…I’m feel the same way and feel so bad sometimes of missed outings and times with my older daughter. She is an amazing person and the love for her sister is undeniable but the sacrifices that had to be made. But at the time you are doing your best.I read posts of new parents complaining about a normal baby and I just want to scream and say you don’t know what you have…

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  17. I just had to echo the other siblings to say WE SEE YOU TOO! My sister Kim has cerebral palsy. I remember the fear when she had surgery at 7 an 14 and again at 27. I won’t pretend that sometimes I wasn’t mad that I felt like she was getting attention that I wanted from my mom and dad, but as a 43 year old I can say I would have been bratty about something else , it is the nature of being a teenager. But now, one of my best friends is the parent of a child with special needs and she gave me the greatest shock when she said that she hoped her typically abled soon grew up to be like me with my sister. I learned everything about love from my big sister and I wouldn’t trade her for the world, especially not a little more attention 30 years ago. I have the best family. You are giving both of your girls what they need, an example of what it means to care for those you love . It won’t look the same for anyone, but knowing you love her and that you are working to give her sister the best life will mean so much to her as she grows . You are and will be there for her as she goes through life in a variety of ways. I won’t tell you not to worry because you love her and part of being the parent you are is to worry because you want to give them both the best and you feel like you can’t . But you are. And she sees it and it will only become clearer as she grows.

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  19. Both of my children have Gaucher disease Type 1, and we were on protocol at NIH in the 80s and 90s before receiving enzyme replacement therapy. I have heard my children say to each other that they were glad they were both sick so they shared the same experiences. I know that is weird in some ways, but we were all in it together, and no one was left out. Of course, we would have NEVER wanted either of them to be sick or suffer not one second, but it is an interesting thought …

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  20. I want thank you for sharing this heartfelt story. I’m 22 years old in college , and I know its hard for my mother to juggle taking care and tending to my personal need. The truth is I would not have it any other way. Yes, sometimes I do feel lonely, but I pray to God for strength and guidance.Having a little sister with special needs has open my eyes to the definition of true love. Children with special needs are little angels. My sister is my motivation to be a better person in a world of hate.

    God Bless you!!!

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  21. We have a beautiful son with a rare disease and are struggling with the decision of whether to have a second child or not … after weighing all the practical problems it all boils down to …is it fair for the second child to have such a responsibility?

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  22. Reblogged this on Trail To A Texas Trial and commented:
    Boy, dors this cut to the quick. Katie’s sister has sacrificed so much. I once had to leave her at the hospital ER,at 15 because there was noone to watch Katie. She had to go through bloodwork and a cat scan without me. I will never forget the agony of that in my soul. Every word in this article is a dagger to my heart because that’s how it is, and it is the ultimate rotten thing about trying to be a family when there’s a child with special needs. No matter what you do, there just isn’t enough of you to do enough for all. I miss memories I never had a chance of making with my daughter and son. I can only hope they forgive me.

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  23. I am an Emily. I grew up, just as you are describing in your beautiful article. My brother had a rare disease and my family was always anxiously waiting for the next crisis; this environment has hugely shaped who I am today – in wonderful and not so wonderful ways. Your Emily will grow up to be incredibly strong, compassionate, and brave – undoubtedly she already is that and so so much more. She will learn incredible things from her sister.
    However, there is a lot of pain in watching a sibling suffer so much and the isolation and feelings of neglect that come along with that, unintentionally of course.
    I’m really interested in hearing your thoughts on how stronger support networks can be built for siblings. I’d really like to be part of developing this part of medical/therapeutic care and would love to get in touch. Emily’s mom, please feel free to message me at s.jones.martin[at]gmail[dot]com

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  24. I am an Emily. I grew up, just as you are describing in your beautiful article. My brother had a rare disease and my family was always anxiously waiting for the next crisis; this environment has hugely shaped who I am today – in wonderful and not so wonderful ways. Your Emily will grow up to be incredibly strong, compassionate, and brave – undoubtedly she already is that and so so much more. She will learn incredible things from her sister.
    However, there is a lot of pain in watching a sibling suffer so much and the isolation and feelings of neglect that come along with that, unintentionally of course.
    I’m really interested in hearing your thoughts on how stronger support networks can be built for siblings. I’d really like to be part of developing this part of medical/therapeutic care and would love to get in touch. Emily’s mom, please feel free to message me at s.jones.martin[at]gmail[dot]com

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  25. Beautifully written and so close to home. My little sister was diagnosed with infantile Batten disease, a fatal neurodegenerative disease, one month after my wedding day in 2006. She was 7 years old. As a much older sibling, my story is different from your daughter’s-and yet it’s the same. Because while I’ve held my sister during a seizure or pushed her wheelchair or fought alongside my mother as advocates in the battle to build a better future for millions with a rare disease, I’ve also wished for more time for just us-time for walks on a warm summer night, shopping on the weekends or sipping coffee on the porch after dark. More time together in a world without Batten disease.

    I admire you, my mother and rare parents everywhere for your bravery and love in the face of unspeakable tragedy. Please know that regardless of the pain and loss we invisible siblings feel, we’re proud of you for how you fight, and we wouldn’t have it any other way.

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  26. This post hits my momma heart so hard. I’m sitting here in tears identifying with so much with the heart of this post. My oldest has become my invisible child. We have three boys in all, two with special needs. One has aspergers/adhd and the other has juvenile arthritis. My heart breaks so often for my oldest especially this year because I can see how this is all wearing on his poor sweet spirit. I have thought often the past few months of taking him to a therapist. He’s not the same ‘happy’ kiddo he used to be and that makes me so sad. 😦

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  29. Thank you for sharing this. My youngest son is his brothers keeper. He has and will sacrifice so much for his brother who has Aspergers.
    God bless all these siblings and special needs kids. Unless you live with a special needs child you don’t truly have any idea of he sacrafice made.

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  31. I’m an “invisible sibling” too, though the feeling of invisibility comes and goes. I was so young when my sibling with special needs was born that I assumed that it was perfectly normal for all families to be like this.

    My parents made lots of time for me, but there were also lots of times when we couldn’t go somewhere or do something because of another surgery, another doctor’s appointment, another two hour drive to wait 5 hours to see the specialist. But I figured that was how all families were, being so young, and accepted it. Looking back as an adult, I can see how much we all sacrificed for each other.

    And yeah, there are probably going to be really bad days. Like the night I had to run and wake up my parents to take my sibling to the hospital, leaving the rest of us home with our grandmother and a visiting uncle. I still remember the nightmares that gave me. But there are many other good things that can come from this.

    We learn self-sacrifice, and compassion, and resilience. I learned how to deal with minor medical issues with friends because I’d been taught how to handle them at home. I think if you keep going the way you’ve been going, Emily will be just fine.

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  32. This really hit home for me, very powerfully. Unfortunately, my husband couldn’t handle having a disabled child, so I was the only parent and there were 3 invisible siblings and I landed in the hospital with a breakdown in 1995 where I was told it was noble to try and give 100% in 4 different directions but if I didn’t take care of myself I would be of no use to any of them. My heart has ached for all 3 of them at what they have missed but I also marvel at the incredibly kind, insightful, compassionate, and accepting adults they have become because of their childhoods. My younger son, the only sibling younger than his disabled sister is truly the most astounding person I’ve ever known, even though he’s only 24 and his devotion to his sister – and me – is remarkable. But he’s also wise enough to know he has to take care of himself as well and pursue his own life – but caring for his sister when I’m gone is a solid and indisputable part of his future.

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  33. Thank you for sharing this. I cried the whole way through. I am a mum to 2 boys aged 3yrs n 20months. My oldest Eli has spastic cp n is quadriplegic. He is fully dependant n extremely attached to me. From day one of returning home after birthing my 2nd son Perez i had to get right back to caring for Eli. I feel my 20month old has become everyone else’s child because he didn’t get to bond with me. He is an amazing little boy though and has picked up on the way we handle n care for his brother. He actually helps in the sense he will bring about Eli’s playmat n lay it in the floor n say mum Eli lay. He massages his brother n just showers him with hugs n kisses daily. I am amazed at his ability to understand at his little age. My biggest fear though is that as he grows he might resent me because I just cant give him the time and attention he needs. My husband and I try our best to make him feel our love and give him that little bit of exclusive mum n dad time. He is so independent way more than a baby of 20months should be. I love my boys unconditionally n i hope that im doing a good job. I never ever want my son Perez to feel he was put aside….

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  34. I feel it, too. We also divide and conquer. I’ve been using some of my one-on-one time with my younger child to teach him first aid, especially seizure first aid. I showed him that as a cub scout he can earn a very high award for applying first aid in an actual emergency, and we have plenty of medical emergencies here. But mostly the first aid skills help him to make sense of things. He understands a lot more about life than most other 3rd graders. Do not assume that your 8 year is too young to learn about first aid – I was certified in CPR at age 10 when I was a girl scout. It’s a good step toward personal empowerment. Make the guilt work for you, not against you.

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  36. Wow, this made me cry. It brought out some feelings in me that I didn’t even know I had. I grew up as the middle child with a younger brother with Down Syndrome and an older brother with ADHD and problems with school and later, drugs.

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  38. This is an excellent post. I have two unsung daughters. Even though my son survived leukemia, thank God, my girls went way too long with life revolving around him. And that split parenting? Absolutely spot on. It’s what you do to survive and it’s shocking when you realize your kids have come to expect it and it surprises them to learn we WANT to be together. Open and honest communication is the thing that got us through – that and doing as you’ve done, letting them know we SEE them and APPRECIATE them. I love what you wrote here!

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  40. This survivors game is so odd and it often reminds me of this article Jill. My kids suddenly have me — so much so, I wonder when they will be sick of me. I know for all of us there is some kind of guilt as we get to know this new world. Suddenly they who were the invisible siblings, are now my world in a whole new way, and maybe in a way that I am afraid to let them out of my sight. It’s all a new world. We miss our Mae Mae. ♡

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  41. My heart goes out to each and every sibling and parent of a special needs loved one. I have 2 families in my life that are in the same situation as described, and I am always in awe at how they are able to keep themselves together and how they make their circumstances work. God bless each and every one of you, and may you always know that if you’re the sibling of a special needs child, you are just as special as they are. God bless…

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