print16_zps4f3d26e2

“That’s All I Need”: Down Syndrome and Sibling Relationships

Last month, I made a short list of topics to include on the blog for Down Syndrome Awareness Month, one of them being sibling relationships. As I was writing this, I noticed most of the things I write about are still pertinent if I crossed out the “Down Syndrome” and just titled this “Sibling Relationships,” and a lot of them still even true if I dropped the “Sibling” and left it “Relationships.”

I’ll begin with a memory of my grandma. Natalie Goldberg says simply writing the words “what I really want to say” will spark some good free writing that follows. Alongside that advice, I’ve found that “I’ll begin with a memory of my grandma” works too.

My grandma was a preacher’s wife who raised her kids in the 40’s and 50’s and measured life as pretty good if her kitchen was clean, her husband was happy and her four boys were out of trouble. Family was everything to her, and by the time I came to live with her while I was going to college, her legacy was clear. Along with a lot of other amazing things she did, her self-appointed job was to keep the family together–all four brothers, all 13 grandchildren, and all the greats that followed. Those four brothers though–Grandma didn’t mind so much what they did in life as far as accomplishments. Oh, she was proud alright–telling neighbors and friends all about their job promotions and writing gigs and teaching assignments. But nothing made her light up like the news that her sons had done something together.

“Your dad and Dale,” she’d tell me with a smirk, “they went to lunch last week. Dale drove up to the hospital to see him and met all your dad’s work friends.” And then her eyes would sparkle in a way that, as a mother of three kids, I now understand.

One of my favorite stories I love to retell of my grandma–because I can completely relate–is during an afternoon when a few of the uncles were visiting. They sat with my grandpa in the living room, their stories and laughter tuning out the afternoon news while my grandma busied herself in the kitchen making weak coffee and some fruit salad concoction with mayonnaise and sugar.

“Grandma, go be with your boys,” I told her, “I’ll finish this.”

She smiled, shooing me away while she continued her kitchen tasks. “No, no. I like it in here. I can hear them laughing and talking. That’s all I need.”

*********

I always knew I wanted to have three kids—not because I’m a planner, but because I’m a dreamer, and in my dreams there were three kids. Plus, every time I played MASH, it said I’d have three–and live in a mansion and drive a red corvette. Okay, I rigged the game. Point is, I had a lot of ideas about what my family life would look like. Dreams are motivating, inspiring little things but paired with imagination, dreams can get unrealistically specific about things that can’t be controlled. Like people. Throw in a perspective with a wandering eye and it gets even more dangerous. Like disappointment.

I had a lot of visions for what my kids’ relationships would be the moment I started planning a family. They’d be close. They’d tell secrets. They’d make forts. They’d rig up tin can telephones and giggle through sleepovers until we walked in and told them “I’m not kidding, not another word.” They’d fight and make up, switch chores, trade bedrooms, help with homework, hitch rides. They’d share clothes and advice and tearful wedding toasts for each other someday.

 photo print16_zps4f3d26e2.jpg

Most of these things are still true for my kids, regardless of the fact that Nella has Down syndrome. We have great perspective tools and gratitude challenges that keep us in check. The best way for me to find perspective and feel most grateful is first to call a spade a spade. Acknowledge the hard thing in life for what it is before running off to find balloons. Although my children’s sibling relationships are good and beautiful in their own way, there are some things about Down syndrome that make these relationships different and hard.

Another sibling recently pointed this out after seeing a photo on my Instagram feed of my three kids playing a made-up game–Lainey and Dash tucked under the crib with just their heads peeking out and Nella climbing the crib bars like a monkey. The caption: “Made-up game. Nella’s breaking made-up rules. Lainey’s pissed.” A relatable funny-ha-ha photo for any parent, several commented that this is the life of an older child. Nobody listens, nobody follows the rules, yada, yada. Pat, my friend Annie’s husband, has a sister who is developmentally disabled and grew up with all the blessings and challenges of that beautiful relationship. “You know what Pat said when he saw that picture?” Annie told me. “He turned the phone toward me and said, ‘That right there? That’s hard.'”

I knew immediately what that meant. He gets it. He gets that even though this is a funny common occurrence with siblings, there’s a little more to it with Down syndrome. He gets that sisters not being able to play with you at the same level when you want that more than anything isn’t a really big deal in the grand scheme of sibling love, but it is a little deal. And saying “that’s hard” is okay.

 photo print22_zps550ac240.jpg

Acknowledging what’s hard right now means that Lainey sometimes says she wishes Nella could talk more so that they could play dolls “like me and Aleena.” Acknowledging what’s beautiful though is seeing that that wish hasn’t changed the way they make each other happy.

Acknowledging what’s hard right now means that we know Dash will eventually move ahead of Nella in communication and abilities. Acknowledging what’s beautiful though is that right now, they play together so compatibly, are the very best of pals, and we know that won’t change a bit with time.

 photo print6_zpsca2e4b80.jpg

We educate our kids about Down syndrome in a way that is factual and celebratory (never pity), but our kids learn more about each other through living together, recognizing that every one of us has areas that call for our sibling’s help and support.  Lainey understands that Down syndrome is something Nella has, but knows that Down syndrome isn’t something Nella is. She understands that it takes Nella longer to learn things and express herself, that she might need extra help and time, but that she wants the same things in life that Lainey wants. We extend this to the big world when we can, talking about all the ways people are different and the ways we can celebrate and support friends around us. Sometimes I wonder if she really gets it, if she even notices the differences. Recently, I watched her interact with a young man with Down syndrome. He asked Lainey a few questions, she answered, smiling, and they shared a high five at the end. Wanting to always keep an open bridge for communication and her questions, I nonchalantly told her later that evening that Jack had Down syndrome. “I know, Mom. I already knew that.” I realized that it wasn’t a big deal to her, did my quick mom scan of her reaction to see if she wanted to talk more about it and concluded that those were my feelings, not hers. Kids are sponges, and she’s been soaking up. I just want to make sure that what I pour into my kids is always good so that when the world wrings them out, they trickle compassion and understanding.

 photo print13_zps2c2bd6d1.jpg

I’ve heard a lot of special needs sibling stories–most of them inspiring and grateful but yes, disheartening ones too. When thinking about the future and what these three will share, I try not to focus on specific dreams but on the big picture. What do I want for them? What do I love most about my relationships with my brother and sister?

I want them to learn from each other, lean on each other and celebrate each other. And maybe most important, I want them to know that they share something that connects them in a way that’s different from anyone they’ll ever meet. All the memories of childhood, all the heartaches and celebrations and stories, all the experiences that helped shape their characters. When things get hard in life, that means something–that connection. It’s a sense of belonging, a feeling of home.

And my job as mom is to spin a web of love so sticky that it covers all three of them with a million pathways to each other and back home.

 photo print30_zps9d424f45.jpg

 photo print27_zps5f14122e.jpg

What’s really important for sibling relationships isn’t affected by Down syndrome. When it comes down to what I really want for my kids’ relationships with each other–well, someday I’d like to sit in a kitchen and hear my kids talking and laughing in the distance–to know that they feel loved, to know that they show up for each other. That’s all I need.

 photo print24_zpsd80d18c2.jpg

And anyone who’s ever had a brother or sister will tell you the truest test of a good sibling relationship, a test my kids passed long ago. You laugh when someone toots.

Comments

Leave a Comment
  1. You always have such wonderful posts! You are raising such a beautiful family and if my future kids turn out even 25% like your kids I will consider myself very lucky.

  2. “And my job as mom is to spin a web of love so sticky that it covers all three of them with a million pathways to each other and back home.” Kelle, wow. I think I’ll have to copy this out and revisit it a few times before I fully absorb the beauty of what you’ve just written. Thank you.

  3. Hi Kelle! Your blog is such a happy corner of the internet. I hardly ever read the comments on any blogs or articles so this might have been brought up before but I wanted to check and see if you have considered AAC for Nella. I’m a speech-language pathologist and my area of expertise is in AAC and there has been a lot of success using AAC with children and adults with Down syndrome. As a parent of a child with Down syndrome I’m sure you are aware of it but I would be remiss if I didn’t bring it up. I’d be happy to talk with you about it some more if you are interested. All the best!

  4. This post brought tears to my eyes!! My sons are 25 and 23, so different but the best of friends. I have always told them their relationship is the most important thing, this understanding has transferred over to them also being extremely close to their cousins even though they are all in different areas. When I found out they had each stayed in constant touch with their homesick cousin while she got used to being away at college, I thought yes, I have done a good job. My nephew lives with autism, he is 3rd in his class and actually has his drivers license but communication can be a struggle. His older sister is his soft place to fall, his younger sister pushes him outside his comfort zone and challenges him, it somehow works perfectly. That is the beauty of siblings!!

  5. wow Kelle, every time I read one of your posts I end up speachless!
    I have a friend with Down syndrom: we grew up together and he’s one the first person I refer to whenever I have news to share. A couple of months ago I emailed him your blog’s link, because I wanted him to read your story. He doesn’t have a great relationship with his parents, especially his mother who blames him for being different. He replied three days later. “I read Bloom and the blog: I wish I could be Kelle’s fourth child” :)

  6. My siblings are my people. I desperately hope to give that to my son some day. This is beautiful.

  7. I don’t know why this made me cry so hard. What a wonderful post.

  8. “I just want to make sure that what I pour into my kids is always good so that when the world wrings them out, they trickle compassion and understanding.”

    Awesome.

    “And my job as mom is to spin a web of love so sticky that it covers all three of them with a million pathways to each other and back home.”

    Aaaaand awesome.

    LOVED this post!!

  9. I guess I’m not 100% sure, but I’m assuming that you’ve read Patti Rice’s birth story. When she talks about calling Denise (the lady she called at 2am and talked to while trying not to have a panic attacK) and how her relationship with Denise began once when she admired the way that Denise’s daughter with Cerebral Palsy had impacted their family for the good… (Wow. Seriously the worst sentence structure EVER but I’m too tired to go back and fix it). Denise is my mom. And Jennifer, her daughter with CP, is my sister. And the relationship between Jennifer and me was a fierce one. And not fierce in a bad way. In a strong, positive way. I was fierce (in my head) toward the whole world and the way the world responded to Jen. I dared anyone to look at her wrong…. and I mentally punched them when they (in my imagination) did look at her wrong (: I loved the compassion and tender heart that was birthed through a relationship with my sister. And it was and is a beautiful thing. Now I watch my kids and their hearts toward people with disabilities… because of their Auntie Jen. And I love it. And I love seeing a little bit of ME in them. I can imagine some day Dash will be Nellas protector and of course Lainey (as she probably could be even now!) The sibling relationship is big and beautiful and good. No matter how different they may be.. they are more ALIKE than different.

    Love this post… and all your thoughts on DS. Thanks for sharing from your heart!

  10. What a beautiful post. Thank you for sharing.

  11. You do spell out things so beautifully! I have the same family as yours, no Down syndrome though. I get the differences, I get way more the resemblance. I get this ‘all I need’, I feel that in my kitchen too, when I hear my kids laughing togetehr. When things unfold that way, I am just, really ok…And I am a spider mama like you, trying to mak that huge, stigky loving web around my kids, so that they always find a path back home, to where family is, to where comfort will always be. It takes that to explore the world a little more every day. Take care, you’re such a lovely mama! xo

  12. I loved the sticky web quote too!!!

  13. Hi Kelle! I love your blog and I especially love this post. My brother is two years younger than me and he has Autism. It’s made our relationship different, for sure, but no less special. He sometimes has trouble empathizing, communicating, and relating but it has become something he and I, and our other siblings, work on together. And we marvel and celebrate his progress. Our mom did a fantastic job spinning that “web of love so sticky,” just like you are doing. :) When we are with each other, we are home. Keep on rocking, Kelle. You’re doing an awesome job.

    -Madelyn

  14. “Dreams are motivating, inspiring little things but paired with imagination, dreams can get unrealistically specific about things that can’t be controlled. Like people. Throw in a perspective with a wandering eye and it gets even more dangerous. Like disappointment.”

    This is what scares me the most. Just when you dream and are about to do, things turn out to another different way.
    But I still believe that if we have faith and let our hearts be filled with love, so many good things can happen and surprise us.
    Very nice text, Kelle. It spreads love and caring. Thank you.

  15. Beautiful post. Your writing is brilliant, but the story and intent for your family are even better. Keep sharing!

  16. Definitely brought tears to my eyes, too. <3 How lucky your children are to have each other — and you!

  17. Beautiful post, Kelle. Sitting here crying, my 16 month old napping in his crib, and a little 10 week old bean making a home in my tummy. Hoping that my children – be they special needs or not – are as loving and compassionate as your sweet kids. Love.

  18. “And my job as mom is to spin a web of love so sticky that it covers all three of them with a million pathways to each other and back home.”

    GREAT line. Wow. That hit me like a punch in the gut. In the best way.

  19. Love it. Beautiful. What I really want to say…I hope I’m a great mom like you!

  20. “…a million pathways to each other and back home.”
    Ah, I get that!!!

  21. Sibling relationships are so interesting. For me, I’m not super close with either of my siblings, I love them, but we are very different people. My husband, though, he’s really close with his two siblings now that they are all adults, but they weren’t that close as children. I now have a daughter, but she will be our only child so hopefully we can make sure she has good friendships as she grows to help replace that sibling interaction. Oh, and I myself am struggling with knowing that my perfect images of how parenting will be probably won’t live up to reality, but hopefully reality will actually be better than my imagination. http://www.oneeggnest.wordpress.com

  22. Thank you for this post.

  23. And my job as mom is to spin a web of love so sticky that it covers all three of them with a million pathways to each other and back home.

    That right there is beautiful. I love that metaphor it sings from my heart although I didn’t know those lyrics.

  24. This could be my favorite post, ever. Although, I say that after almost everything you write!!! You are such an inspiration. Hugs!!

  25. I love this post so much. As the only girl, with 3 brothers, I find even now at nearly 33 years old – they are a constant safe place in my life. We have had rough roads to travel as a family, but as you said, that connection brings us back together over and over again. I love all 3 of my brothers fiercely even if they have been huge pains in the ass at times. When we are together, I always feel at home.

  26. Wonderful, Kelle. Beautiful writing and sentiments. Love.

  27. A beautiful post. Thank you!

  28. kelle, that maternal spider web analogy? BAM!

    brilliant and beautiful, you are ~

  29. I always learn something or realize something new while I’m here!

    I think a “normal” relationship between siblings doesn’t ever exist. My siblings and I are all seemingly “normal”, but some of us are 6 or 11 years apart, and those years have created walls that block us from each other. I’ve always wished that my sisters were closer in age to me, that I could share more words with them instead of fixing them lunch. But with time, I think all four of us have learned to saw through the walls and make doors. Our relationships have obstacles and shit in the way, but we learn to jump over them in order to get to each other, and that’s what relationships are all about right?

    Thank you for opening up my heart and eyes once again!

  30. First of all, forgive my English Kelle, for it is not my mother language. Feel free to correct any mistake that I make. I am the youngest of two sisters and , to tell you the truth, I think you just mentioned challenges that all sisters are facing [regardless of DS ]. Either because one sister has DS or a health problem, or she is not as good at school, or she is weaker, or not as popular, or not as good in academics/sports/arts or simply because family members have the stupid tendency to compare the two: it is going to be deam hard. Because no relationship is easy and no relationship is given. But me and Big Sister always kept in mind something daddy told us when we were little. It is the definition of “Harmony of Celestial Universes” by Pythegorean philosopher and scientist called Filolaos. «Εστί γαρ αρμονία πολυμιγέων Ένωσις και δίχα φρονεόντων συμφρόνησις» [Harmony is the union of complexes and the combination of opposites]. So we decided we will continue to be different, but make an effort to work marvellously together. That is our motto [plus “if you are mad at me, just tell me, ok?” haha]. They will work it out themselves, they love each other…they can do it.

  31. This is just so beautifully written. Seems like you learnt from the very best the true value of family.

    On a side note, I’m shall attempt to make you Call Your Mum Cherry Pie, tomorrow with my four year old!

  32. Kelle Hampton you are one of my heroes. That is all.

  33. This post made me cry! Thanks a lot. 😉 Every word. Every sentence struck a chord deep within my soul. I can relate on EVERY. SINGLE. LEVEL. We are on a very similar journey in life. So I get it. All off it. xo

  34. Thank you. I grew up with a sister who had special needs and no one allowed me to acknowledge that it was hard. Everyone made me feel bad for being frustrated with the loss of a dream sibling relationship.To this day we still struggle and I think it has to do a lot with our childhood and the pressures put on us to be best friends, and act as if she is perfectly normal when she wasn’t. I appreciate your honesty and what you are trying to do with your kids. Good job mama.

  35. Hi Kelle! I’m a frequent reader, not so frequent comment-er, but I was wondering if you could point me in the direction of an old blog post. I’ve tried searching for it to no avail, but I remember it being about loving your kids on their terms, loving them how they want to be loved. Help?
    Thanks!

  36. I always read (and never comment) but as a single, child-free woman who dreams of her own family one day these two lines really hit home:

    I just want to make sure that what I pour into my kids is always good so that when the world wrings them out, they trickle compassion and understanding.

    And my job as mom is to spin a web of love so sticky that it covers all three of them with a million pathways to each other and back home.

    You have such a way with words – thanks for sharing so openly and so often. It is much appreciated.:)

  37. “I just want to make sure that what I pour into my kids is always good so that when the world wrings them out, they trickle compassion and understanding.”

    This, this is it. Thank you, Kelle, as always.

  38. I hear you. I wouldn’t take any of it back- not for one second- but occasionally there is that small realization that different is still…different. My firstborn (Lainey’s age) said to me recently that he would like a 5 year old brother. (His younger brother, Elijah, who has Down syndrome is 4). He continued, “Elijah can still stay, but I’d also like a 5 year old brother.” I said, “Well, Buddy, that would be pretty impossible considering that I would have to have already given birth to this brother before I even had Elijah.” He said, “I know. But, I can still have my wish brother in my mind and he could play little legos with me- Elijah can’t play little legos with me…” Cue stab to heart. He has a very special and awesome relationship with his real brother (not the wish one) but it’s true that his brother can’t always play the way a typically developing brother would. It doesn’t often get to me, but every once in awhile…yeah….

  39. So beautiful. Every word!

  40. What if you couldn’t give your first child a sibling?

    I’m not asking this in a flip way — I completely recognize the challenges you’ve so honestly put forth about raising siblings, one of whom has special needs. I’m honestly looking for your advice. Because you’re good with the glitter.

    I lost a baby at 18 weeks this year, and then I had a friend offer to carry one of our frozen embryos for us, which felt like a miracle. And then the doctors said no, because of her history. More heartbreak. And now it’s looking like my son may never have the sibling we so wanted to give him.

    I’m having a hard time finding the silver lining in this. I’m beyond grateful that we have one healthy boy. But I’m devastated that we can’t give him the kind of love your kids give each other, no matter how challenging it might be at times.

    I have a feeling you’d find some way to rock the above situation. And I’d love to hear how, because I’m struggling to find a way to embrace this unexpected twist in our family’s story.

  41. I always watch your photos, but not always take time to read. Tonight I did.
    So true.
    Down syndrome is a little more to it…
    My 5 year old is her big sister’s best friend, the 7 year old with DS.
    The 5 year old keeps repeating; “I’m taller than her, but she’s older. I understand more than her, and I wonder if she ever will…” It’s tough love, but so far so good.
    We make the best out of every day. What more can we do?

Leave a Comment

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>