Special Needs Parents Are Not Rockstars

My husband and I hear this a lot.

Moreso the last couple of weeks as we’ve dealt with back to back trips to the emergency room.

And we’re always completely perplexed.

I mean, I get it.  I get what people are trying to say.  I appreciate the sweet intentions behind the comments.  I understand that it’s a form of support.  So, please hear my heart as I continue to type.

Yesterday, Andy came home and told me all about how some of his friends insisted that “I don’t know how you do it”…”I don’t know if I could deal with what you guys deal with”…”You guys are amazing”…and my new favorite: “You guys are rockstars”.

“I don’t get why people always say that, Jeannett.  I mean, what else are we supposed to do???”

Similarly, blog comments, instagram comments, and sweet tweets all echo the same sentiments.  “You are amazing!”  “You are so strong!”  and the like.

But I want you to know something:

I am not amazing.  I am not strong.  I have no super powers.  And no, I’m not even a rockstar.

I’m just a mom.

And my husband is a dad.  And together, we do the same. exact. thing. that any of you would do if it were your child.

We don’t love our children more than anyone else loves their child.  We weren’t born with extra powers or more patience or chutzpah any other such thing.

And you know what?  I don’t think God gave us a child with extra needs because we are somehow better equipped than the average person.

We are simply parents.  Parents who parent the children we’ve been given.

That’s it.

I am a mom…and with that comes a responsibility to mother, and care for, and nurture. Each child has different needs, personalities, and soft spots.  It’s really no different.

I wipe snotty noses, I make sandwiches, I read bedtime stories, I detangle tresses, I yell, I give time outs, I hide in the bathroom to have quiet time, and I chauffer.

I also happen to administer rescue meds.  I call 911.  I ride shotgun in an ambulance.  I have a whole different vocabulary stored in my brain.  I know where to serve myself iced water in the emergency room.  I have a list of doctors in my cell phone contacts.

But really…what else can I do?  Would it be comprehensible for me to refuse to dial for help?  To say I’m too squeamish to administer Valium rectally?  To sit in a corner and sob instead of advocate for my child and give doctors answers to their questions about her history?

I don’t have a choice.  Because I am a mother.  Simply.  Wholly.  Fully.  Just a mom.

There is nothing special about me.  I am not amazing.  I am not anything more.  Just like you are.  Just like your mom is to you.

Because what is my other option?  My only other option is to refuse to mother my sweet girl…and if I refused she would die.  Yes.  I just typed that.  Because that’s the alternative.

So really, it’s no alternative at all.

So in the same way I try to make sure my kids eat their veggies before their cheetos…I mother my children in whichever way they happen to need it.

I know it sounds crazy to you, and likely overwhelming…but I promise you with all of my heart: You would do the same.  And you would do it beautifully.  You would do it expertly.  You would do it seamlessly.  You would do it gracefully.

Because that’s just what moms do.

Not special needs moms.  Not epilepsy moms.

JUST MOMS. 

It’s how we’re wired.  We do.  We love.  Even when it’s unexpected.  Especially when it’s unexpected.

I suppose I could be bitter about it all.

I will admit to wondering sometimes what it would be like to only go to the doctor for well baby checks.  It would certainly be nice to only go to the ER because someone fell out of a tree and broke a leg.

But bitter?

No.

Because bitterness implies an unthankful heart.

Bitterness suggests not seeing the beauty of what you have been given.

Bitterness means ignoring God’s grace and God’s strength.

Not mine.  Not my husband’s.  But His and His alone.

And maybe this is just what I needed.  To be at a point where I cannot rely on my own strength.  To be at a place where relying on myself would be foolish and catastrophic.

Bitterness would leave my girl believing she was a burden rather than the sweetest little blonde blessing in our lives.  I never, ever, ever want her to feel guilt or that I ever wished she was different.  I love her just the way she is.  She is perfect.  Perfect.

But hear me when I say this: You would do it too.  You’d find a way to make it work.  You’d have to.  And it’d be okay.

It’d be more than okay.

Because life isn’t always pretty…but it sure is beautiful.

Pinky swear it.

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jeannett
I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.
jeannett
jeannett

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Comments

  1. 1
    hopefulmother says:

    I totally get what you are saying! While Alex’s needs are different from Jilly’s, I can completely relate to what you say. No, we are not “chosen,” we are just moms like everyone else. Of course there is no choice than to just mother and love your children!

  2. 2

    Speak for yourself honey. I’m TOTALLY a rockstar. But I would be with or without a special needs child. :)

  3. 4

    Wow. Fantastic post! I think people say that because they are impressed by your strength… we all have it, but yours shows more often!

  4. 6
    hopefulmother says:

    p.s. but I still think you’re a rockstar. :-)

  5. 7

    Nice post, Jeanette. I feel the same way. As a mom of eight (no special needs), I often get the same type of comments. And yet, the truth is that God gave my just what I needed to conform me to the image of His Son. Most moms can probably learn it with 2 or 3 children, but for the hard-headed ones like me, He took extraordinary measures!
    Enjoy your journey…. and yes, you are a channel of supernatural power!
    candydawn´s last blog post ..Calling All Contributors: Community Summit 2012

  6. 9

    well, I though it was strange that my comment didn’t link to the blog, but I found my mistake!
    candydawn´s last blog post ..Book Review: The Last Plea Bargain

  7. 10

    AMEN. AMEN. AMEN.

  8. 12

    I think all special needs parents hear this at some point. My mom said it best when she said, “If you dropped a plate and it shattered all over your kitchen floor, you would pick it up. You wouldn’t just sit there and whine about it.” Having a kiddo with extra needs is just like that. Thank you for so eloquently saying what has been in my heart for 7+ years!

  9. 13

    Seriously AMEN. Im not a special needs mom but we did a couple months in the NICU when our son was born preterm. At the time I got a lot of the I dont know how you do it’s and I felt the same way. I just did it.

  10. 14

    This is really beautiful. I know for me I appreciate your hope, honesty, and optimism, and your ability to share exactly the way you have here. BTW the pics you chose… OH MAN…Your lils are so super cute!
    Noel´s last blog post ..Dolly Parton

  11. 15
    Jennifer says:

    I remember telling my sister that she was superwoman for being a single mom to 5 young kids during during the months and years her husband was deployed in the army. She said “I just did what I had to do.” Maybe we are all a lot stronger and capable of a lot more than we think.
    Anyway, I still think you are a superhero because you face these challenges with so much hope, love and faith. I am sure there are a lot of the hard parts you maybe don’t share with us but the beauty you find no matter what means you will always be a superhero to me.

  12. 16

    Jeannett – you are totally a rockstar momma – to all of your little ones. I don’t know how you do it {it’s probably your rockstar powers} but your words always seem to hit the nail on the head. As always thank you for your honesty and your encouraging words – they were just what this momma needed to hear tonight. Hugs to you and your sweet little family!
    Libby´s last blog post ..Because pictures like these deserve a post of their own.

  13. 17

    …..I still think you’re a rockstar!
    Heather @ Glitter and Gloss´s last blog post ..Life in Phone Pictures

  14. 18

    I teared up towards the end of this looking at the pictures not only because I get & understand whaat you’re saying, but the BEAUTY. Good golly…so rich…you just SEE goodness & love in your (absolutely precious) family. And honestly, whether people realize it or not, I think the amazement and the attraction & awe they comment to yall about is actually just seeing Jesus pour through. You can experience His faithful faithful faithfulness to your family & the way he LAVISHES HIS love for your children through the two amazing parents He gifted them to. I think thats the root of the comments…. they see His POWER equipping the parents He gave the blessings to. Its hard to take compliments and not just say “No, its not me…its Jesus.” And thats TRUE….but you can make choices with your gifts and you and Andy steward your gifts (little lovies) WELL.
    Jordan´s last blog post ..Marked

    • 19
      Vanessa @ Brock Rocks says:

      Yes. This.

      Unfortunately I’ve seen LOTS of parents have to deal with really hard things with their kids….I’ve seen dozens of parents lose their children (to cancer). I can TELL when the families know Him and have a hope for the future…and I can tell when they don’t. I’ve seen parents suffer…and I’ve seen parents suffer well. The ones that hear “I don’t know how you…” are the ones that suffer well.

      You suffer well, J. You know that He holds Jilly in His hands…that her future is secure in Him…that she is fearfully and wonderfully made.

      That’s what makes you a rockstar. Not that you can tell the EMTs how much valium she’s had or that you know what a status seizure looks like or that you know the ER attending by name.

      It’s that Christ’s love and God’s power shows through in how you parent. That makes any parent a rockstar – special needs or not.

  15. 20

    woooooord.
    i love this post.
    and i love you. thanks for encouraging me. xo
    hannah singer´s last blog post ..a few things

  16. 21

    This is so where I am today. Thanks for putting it into words as my darling dear is not feeling well and we are traveling back to visit family that we’ve not seen in a few years. .
    “I will admit to wondering sometimes what it would be like to only go to the doctor for well baby checks. It would certainly be nice to only go to the ER because someone fell out of a tree and broke a leg.
    But bitter?
    No.”
    Because bitterness implies an unthankful heart.”
    MaDonna Maurer´s last blog post ..Saying Good-bye Stinks…

  17. 22

    That was a beautiful post, and you are a beautiful momma – inside and out! Have a great day!
    Suzanne´s last blog post ..Embrace the Camera: 5/17/2012

  18. 23

    Wonderfully and beautifully said. You are right…parents just do what they have to do to take care of their children, regardless of what they are handed. I have twins also and we heard that a lot when they were babies. “I don’t know how you do it”…well…we didn’t really have a choice! :) Hugs to you…your children are beautiful!
    mandy @ this girl’s life´s last blog post ..{instagram friday}

  19. 24

    Jeannett -great post. It was like you looked right into my heart. I know people mean well but it bothers me when people say those things to me. I don’t know how many times I’ve explained that you do it because it has to be done.

    “I hide in the bathroom to have quiet time”– I have to confess- I have a book stashed in the bathroom so when it gets too much, I take a 5 minute time-out. My husband thinks I’m crazy. He’ll come to the door and ask if I’m busy or just hiding.

    I also have to agree- you are a rockstar.

  20. 25

    Thank you for beautifully explaining that, I don’t think I would of ever seen it that way if you didn’t put it into words. But it’s so true, I get what you mean and it’s encouraging to think about how I would do the same if that was the situation I was in, instead of being fearful of the unknown.
    Linda´s last blog post ..Insta-Friday {Link up}

  21. 26
    Denissa says:

    First I’m sorry that you guys had another ER visit :( Second I feel just a bit dumb because I know that I left one of those kind of comments after Jill’s last visit.
    You are right that as moms we will do just that, be a mom. I think that when we look at how other people handle something that we haven’t, its hard to imagine being in that situation.
    I still think that you’re pretty awesome ;)

  22. 27

    Jeannett, you may think you are just a normal mom doing what anyone else would because your daughter having epilepsy has become normal to you. What you do seems like a no brainer. For the rest of the world, we marvel at your strength and courage. Why? Because there are parents out there who couldn’t handle the situation. There are parents who could never imagine in a million years how they would do what you do. I understand where you are coming from. I have been helping to take care of my dad for the last 11 yrs. He is severely disabled due to a stroke and is basically trapped inside a non functioning body (his mind works fine). People say all the time, I don’t know how you do it. I could never do that. Or you are so special, etc. The truth is I do it because what is the alternative? You find the strength to do what you have to do because it needs to be done. People don’t get that, and some people don’t ever have that strength even when it is needed. So the impossible becomes normal and possible, and you look like superwoman. And to your 4 kids you are superwoman!

  23. 28

    Rockstar mommas do what you just did. Treat their kids the same no matter what. And be thankful for them no matter what. And love them with God’s love no matter what. Thank you so much for this inspiring post. Your daughter is beautiful-love all the pics:)
    Bloom in the Details´s last blog post ..I must confess….

  24. 29

    Beautiful post.
    courtney´s last blog post ..What I Love Wednesdays: Fancy Schmancy Hole Puncher

  25. 30
    D Money says:

    Thanks for writing about this. I am a parent and I am not one to tell a special needs parent these things. I tend to treat every parent the same. I often wondered if I was being/appeared insensitive. I just believe each parent can and will step up to the plate, as needed, and knock it out of the park when it comes to their children. And will be Mom enough (Take that Time Magazine!)

    However, you shared your Berry Crisp, Salsa Roja and Tortilla soup recipes on your blog….so you are a rockstar in my book!

  26. 31

    Brace yo’self. I can feel a long comment coming on. First- I am so sorry that Jilly has been having a rough time. Breaks my heart. For her and for you. Second- I loved this post. Your writing is beautiful. As always. Third- with the risk of sounding like a complete and utter fool….while I absolutely and completely agree with every word you wrote, I’m going to be honest. Sometimes I appreciate when people say “you’re a rockstar” (or insert something similar here). Because while 100% I do what I do with J because I’m a mom and I love him and and and and ….days can be tough. And sometimes the “you’re a rockstar” comments come on a day when I really need to hear it. Not because it’s true necessarily. But because those comments push me along when I want to crumble in a corner. And I get “Eye of the Tiger” playing (not really- just sounded good) and gear up to tackle the damn school district (yes, damn was needed, sorry for the swears), the obnoxious parents, the aggressive behaviors, all the extras that come with being a special needs mom. Could (or would) my best friends do the same if it was their kid instead of mine? Yes. And they would probably do it with more patience and grace. It’s been a journey and will continue to be as we navigate new paths. Just when we start feeling comfortable, there is change. Change at the moment is junior high transition. (ARE YOU KIDDING ME? I have a junior higher on my hands??? HELP!? Scary)
    Anyway- just playing devil’s advocate. And I know I’m not really a rockstar. Far from it. But it sure gets me through the crappity crap days.
    Love you!!! And freaking miss you. xoxoxo
    Miq´s last blog post ..Pity Party 88, Linky Party

    • 32

      I actually totally get what you are saying. ESPECIALLY when it comes to the whole fighting with the school district, or Regional Center, or CCS or whatever. Because I am learning, slowly but surely, that being the nice guy and biting my tongue isn’t doing my girl any favors. It isn’t until I am a complete B that anything gets done. I hate that. HATE. I don’t want to have to be pushed to that!!! Ugh. Anyway, yes. I guess there is a balance…of some sense of acknowledgement that…you know what? this road is TOUGH. It affects every. single. bitty aspect of your life. Big things, little things, things you didn’t even think of are affected. The types of vacations you can take as a family. The ways you spend time together. “Family friendly” takes on a whole new meaning and sometimes it’s nice that you get the acknowledgment that no, your life isn’t the same as the family with all “typical” kids. So I TOTALLY hear that. And I agree 100%.

      Perhaps the comments that I should have stuck to are the ones that sound more like “I don’t think I could do what you do” types. Because that’s when I want to ask “Do you suggest I give her away? Send her to the local adoption agency?” I mean, not only is that not an option (obviously), but yes, yes you could. And you would. And you would rock it. The way that all of my other special needs mamas rock it.

      MISS YOU too!!!

  27. 34

    Great post, so encouraging for me to read, thank you. I love you’re blog, I am excited to join in your insta-Fridays, love the idea behind it. I am glad I found this place. Your family is beautiful.
    April@M3RH´s last blog post ..Insta-Friday

  28. 36

    i miss you.
    :)
    meg duerksen´s last blog post ..are you kidding me?

  29. 37

    What a great post.

  30. 38

    I love how you worded this.
    I’ve heard it all and cringe when someone says these types of things to me.
    You have a way of putting the truth out there. It’s much appreciated.
    Kimberlee Jost´s last blog post ..Typical Germany.

  31. 39

    Love this post for many reasons. Thanks for sharing.

  32. 40

    I love this post. I am not a special needs mom but there was a chance that I might be back when I was pregnant and my daughter was at risk. I have often thought that I wouldn’t be able to cope. Thank you for reminding that I would have coped because I love her. Awesome reminder. Thank you.

  33. 41

    Perfectly said. The sad thing is, there are some parents that don’t rise to the occasion. What people are impressed with it that you and your husband DO the things that God built you to do. Not everyone does! Not everyone takes the chance to see the beauty in the hard things.
    And I can see from her photos that Jill is totally perfect, just like her sibs!
    xo
    Jenny from Mommin’ It Up´s last blog post ..Cars & Clothes

  34. 42

    Hello my name is Daiki i relate to every word in this poem
    Im a mother to a 2 year old little boy with a tracheostomy.
    Could i post it in my Facebook and change the words for my little boy?

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