Just a Thought

My Hope Baby no longer wants to be my ‘Hope Baby.’ I’ve always called her Hope Baby, but now she wants to be called ‘Hope Big Girl.’ Because, you know, at 2 ½ years old, she is so not a baby.

I don’t want her to grow up. Wah!

I told Hope that I wouldn’t mind changing diapers for the rest of my life if she would just stay my cuddly baby forever.  I’m sure many parents know this sentiment ( – maybe not the changing diapers part, but you know what I mean). We want to hold onto to their adorable baby-cuteness and innocence and exuberance for as long as we can.  (My favorite is Pixiemama begging her son Finn on the eve of his birthday “not to turn two tomorrow.”)

It occurred to me that I never felt this with Rhema.  I never wanted to hold onto her babyhood.  Before her diagnosis, I spent most of the time worrying about how different she was from other children. After the diagnosis, I was busy racing the clock, trying to play catch up, willing her to reach those elusive milestones.  And yes, in many ways I was just trying to survive… to keep my head through endless meltdowns and sleeping problems and poop art and feeding disorders and sensory issues and oodles of therapy hours. Like Adam Sandler in the movie Click, I often wanted a universal remote to fast forward to the day when she was “fixed.”

She’s only five now. But she is my big girl, tall, lovely and mysterious. So not a baby anymore. And I realize that I did not enjoy her as much as I could. Looking back I wish I had cherished her more.

Would I still do all the therapy?  Would I still send my then 3 year old – with a backpack bigger than she was – to a special school an hour away?  Would I still read all those books and articles, attend all those meetings?  Would I still fret over special diets and supplements?  Yes, yes, and yes. I believe she/we needed and benefited from all of it.

But I would have taken more moments to just be enamored with my baby girl.

So I say, if you have a young one on the spectrum, delight in her/him now. Be purposeful about it.


Today I’m choosing to be thankful for today, and trusting that God will bless me with time to thoroughly treasure both my girls.

14 thoughts on “Just a Thought

  1. My Littlest One is 2 1/2 too and is in that struggle to be a “Big Kid.” (Until bed time 😉 )

    This is such a great reminder to all of us to be purposeful. I too missed so much of my middle child’s baby years because of my husband’s health. I just couldn’t wait until he could sleep through the night, and then when he could feed himself, etc. Anything to make my life and stress levels somehow better or easier.

    It wasn’t until I was filling in his baby book that it hit me that I had truly missed such special moments in my busyness and rush for him to grow. It was a heartbreaking moment.

    Praise God that we have today. That His redemptive love and grace covers what we miss and that we can be more purposeful with our loved ones.

    God has blessed you with such great insight; thank you for sharing it so eloquently with all of us!

  2. last july i read this ..

    ‘It happened in the blink of an eye. Listen to me, I know. All I’m saying is, please, please, just try, try to enjoy them. Just as they are. JUST AS THEY ARE, you hear me? Try not to live their childhood in a blur of therapies, strategies, school placements, meetings, vaccine-hating, hand-wringing, neuron-mourning, diets, chores, appointments, grudges, and cursing fate. Try to just be, in their presence, in the present, with God’s present.’

    on susan senator’s blog (the whole post is here .. http://susansenator.com/blog/2008/07/just-as-they-are.html)

    i nearly stood up and shouted ‘amen!’

    instead i wrote this ..


    and today, it all comes full circle.

    thank you, thank you, thank you for the incredibly important reminder.

  3. What a beautiful post. My little guy is almost 19 months. He just got a dx a few weeks. I am so focused on helping him, and all our interations are so purposeful, contrived, and therapy-based, that sometimes I forget to just enjoy him for who his is at this moment in the present and not worry so much about the future.

    I will absolutely delight in him NOW!

  4. You are right. But I believe when our children are disabled we are spending so much time trying to help them that we over look these things, AND really Daniel stays “little” in so many ways. A Dr. once said to me “you can keep kids like him babies forever if you want to, it’s up to you to help them grow, mature and achieve independence” While that made me mad at the time, he is correct. I have always told Zachary he is allowed to grow up but he MUST hug and kiss and snuggle with me every day!! He’s 9 and he still does.

  5. thanks for the permission and bringing the double standard to consciousness. just last night I told Reid i thought we should have a pillow fight before school–maybe that qualifies for pure childish enjoyment? i do miss his little pudgy hands and cherubic face now that it is marked by acne and darkening peach fuzz. My mother in law still refers to my husband as her “little guy”

  6. You know, with Kayla, we were so wrapped up in Early Intervention back then, worried about her development, wondering if she’d ever grow up. And now that she’s five, well, I still WANT her to be the baby that I was afraid she’d always be back when she was really a baby, if that makes any sense. She still has her binky and plays with her musical flashing toys. But since I had to carry her to the bus this morning, well, I tried to carry her down the hall lengthwise, and she didn’t fit across, so I had to put her over my shoulder. Wow, she really is growing up.

  7. This is so sweet… and so true. To me one of the blessings of autism is that our kids do “grow up” slower than other children. Not just the milestones, which I too have fretted over and strived to help them meet, but just the innocence of childhood that they seem to hold onto for longer than others their age. None of our boys have been in a hurry to grow up, which is nice although it can be frustrating when it comes to things like potty training, hehe. The whole “big boy” thing wasn’t really motivating for them at all… oh well. Even so the time goes by too fast, this is a great reminder to cherish every moment along the way.

  8. My favorite word here “mysterious”. So accurate to apply to our fetish for knowing and being certain.

    Lots of excellent agreement here, but I want to reinforce Danette’s “grow-up slower” – is to be enjoyed.

    Then again, I’m starting to form a thought-pattern that children with autism actually become teenagers early – oooh! Not meaning to scare you all – just teasing. Not funny?

    I think of our Younger Teen at 2.5 and her “I am not wittle!” I thank God for the blessing of videotaping!

  9. Funny you should mention it – Finn doesn’t want to be called “baby” anymore either. Anytime we say it, he says “I Finnegan!” still cute. Cuter than cute.

    Savor friend. These are the memories we choose to keep.


  10. Yes! Too often I get caught up with the schedules and checklists and therapies…the other day I played outside in the yard with my little ones and I realized how long it had been since I’d done something so simple…

  11. Such good words. Sometimes I can get so wrapped up in all the managing of autism that I forget to embrace more moments of unadulterated joy with my boy who is growing so tall these days.

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