We were bumbling our way through Target last week.
Owen standing up in the seat of the cart. Laughing in the face of the strap restraint. Wrestling his tiny limbs back into place, a mess of baby toes and thighs.
Lucy’s wild curls bouncing on her head. Little hands begging for every toy, candy, food item, and brightly colored package of band aids we passed.
Jilly in her walker. Casually strolling. Taking her oh-so-sweet time. Wandering and gawking. Suddenly quite hard of hearing when I called for her to hurry along. This way Jilly. No, not that aisle. Over here. No Lucy. You have plenty of dollies. Owen, you are going to crack your head open in the middle of Target. Jill, seriously…
I was flustered. Sweating. That moment when you HAVE TO GET OUT OF TARGET RIGHT NOW…like, so Right Now, you are considering leaving your cart full in the middle of the aisle and not even taking the time to wait in line and pay?
Yeah, that moment was like 20 minutes ago.
But, Jill is getting bigger. Her lanky legs harder and harder to pull in and out of a shopping cart without some acrobatics, knees painfully jammed, and oftentimes, tears. So Andy and I, deep breath, resigned ourselves to the fact that we are the Next Step in this journey. The Step where we must allocate more time to activities so that Jill can walk alongside us. No more carts. She’s a big girl now. Every task is going to take longer. But training is what we Parents do, isn’t it? And training takes time. Lots of it. Precisely when time is the last thing you have lots of.
On paper, this sounds all exciting and adventurous. In reality it is…notsomuch. Any mama, special needs or not, who graduates from the cart to Stand Next To Mama and Walk Slowly, knows. Knows exactly this exercise.
Girlfriend is darling, but she isn’t always the best listener. Especially when we get anywhere near the candy aisle.
So I’m forcing a squirming baby back into his seat, cursing that silly seatbelt strap, which, for the record, I have never used with any of my kids, and apparently it’s just a ruse anyway because clearly I am raising the next Baby Houdini…telling Lucy No for the 4,075th time…and begging Jill to “Come On”, you know that syrupy sweet “Come on Honey” you do when you’re in public, but your teeth are clenched and you are about TO LOSE IT…when a woman blurts out:
“What happened to her?”
“Excuse me?”
“What happened to her?”
I eyed the woman. My words more than a little short. Curt. Annoyed. I could feel the hairs on the back of my neck standing. Mama Bear.
“Nothing happened to her. She was born that way.” My tone venomous.
“Oh. Then what’s wrong with her?”
“There is nothing wrong with her.”
“Well, why does she need that thing?”
“Excuse me?” Come on lady, I’m giving you a chance to fix this…
Words of hurt are stinging the end of my tongue. I hold them back. Barely.
“That silver thing. Why does she need it?”
“She needs it to help her walk. She has Cerebral Palsy. Come on Jill, let’s go…”
“Oh. Well, she’s beautiful! She’s doing really well! I bet she runs like crazy around home! What a sweet little girl! She’s doing great!”
Softening.
“Yes, yes she does.”
We walked away, tears brimming.
What is hard to convey is that this woman’s tone changed completely between the first few questions and her final sweet cooing about my girl. It was like two completely different conversations.
But that doesn’t really matter. Mostly.
What frustrated me, was not that this woman had no tact (albeit was obviously well meaning even if it took me a while to figure it out), was…
SHE IS STANDING RIGHT HERE. Do you not see my girl? Do you not see her little blonde head standing three feet away from you? Do you think she is also deaf? Because she is not. She is not deaf, maybe a little disobedient, but not deaf. She hears every word you say. In fact, you have no idea that she is non-verbal…but regardless she UNDERSTANDS. So much. So much more than any of us realize. And I hate that well meaning or not, you referred to her as being imperfect and somehow defective.
Right. in. front. of. her.
Moments later, my heart still in my throat, I happened upon a friend. I recounted the entire exchange. I told my friend every word.
With Jill standing right there.
I believe the saying is something about a pot calling a kettle black.
Self Righteous thy name is Jeannett.
I forget. And that makes me so sad. I do not want my little charge to ever believe that her mama was anything but head over heels in love with her. That her mama was real and human and cried sometimes…but that she was loved fiercely and without condition.
I must remember that the rules I wish the lady in Target followed, are the same rules I must follow.
I do not want to leave marks and bruises on the spirit of my little girl. Even if unintentional.
That children’s book on Helen Keller affecting me months later.
Getting a glimpse into Helen’s mind was like getting a glimpse into my own daughter’s mind.
If Helen, both deaf and blind, could write so eloquently about apples, it seems that Jill might think about apples in the same way, even if she can’t articulate it to us.
If Helen, both deaf and blind, could learn about astronomy, seems to me that Jill might too. Even if we may never really know for sure.
I read and read and re-read that picture book like it held a map to a buried treasure. Although, I suppose it kinda did. For me, anyway.
Annie took Helen walking in the forest, jumping in the salty ocean, tobogganing down snowy hills, bicycling in tandem, and sailing in a boat. And she spelled out each new experience.”
So we take Jill with us. We do our best to never leave her out. Family activities are always tempered with her needs and abilities. We take special note of her favorites. Ariel. Singing. Dancing. Books. Always, always books. Books about The Little Mermaid while humming Part of Your World are like hitting the Jilly Jackpot.
From trips to Disneyland to boating to swim lessons to walking through Target like a big girl.
I couldn’t download The Story My Life onto my Kindle fast enough. Yet, I haven’t begun reading it. I think I’m afraid. A little overwhelmed at the possibilities. A little scared of the work.
But mostly terrified of what Helen will say about her mother. I’m so imperfect. I’m not afraid for my children to see my failures…just that I desire them to see my heart. The good parts and the bad parts. Side by side.
I hope the good parts win. Even if just by a little bit.
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Your Target story reminds me of one I had when my son was young – about 5. I told him we were going to Target. When we got to the parking lot (and before opening our doors to get out), I told him exactly what we were shopping for and NOTHING else. I told him to not ask for this or that or anything. I was adamant we weren’t buying him anything. If he asked for ANYTHING, we were going to leave the store immediately. Naturally, we left the store. BUT… next time I had that same conversation, it worked. Worked for YEARS.
Please please tell me that the picture of your kiddos tubing is a christmas picture! So cute!!!
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I feel like the worst mother in the world all the time. After having one child with developmental delays, I feel like I have not learned my lesson at all. Because now that I have a 2nd one I can’t keep the fear and anxiety at bay even though everything came out rosy the first time. I feel like my kids deserve a stronger, better, more stoic mother. But God gave them me, and I just have to trust that he will equip me, as I know he has you. The bonus that our kids get, is that they have mothers who are teachable. Who learn from their mistakes and want so badly to love them the right way. Some moms don’t even try. I’ve seen that and I am sure you have to. I think Jilly hit the jackpot when it comes to moms!
This so resonates with me. My 15 month old is severely delayed (more like a 6 month old) and most likely has some SPD issues. She is nonverbal (only makes a winey noise, doesn’t babble yet) and it is SO true that even though they cannot talk back to us, they really do understand and take in more than we realize. Such smart babies we have! :) I love reading your blog for these types of reminders. While I don’t know you in person, I can tell, without a doubt, that you are a stellar mother.
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I think our kids see the real us, all the flaws and misshapen parts, and love us anyway.
XO
Caryl
Having the perspective of a parent with a teenager with disabilities, your narratives take me back 13-14 years. And being the only living parent of these 4 kids of mine makes it tough sometimes. We can’t be perfect. Then we set them up for failure because, then, they cannot be perfect like us. They scream or think “I hate you”. And then they tell you that you were right about wearing sunscreen to the baseball game because they got burned like I told them they would. And they say they hate it when you’re right. But I get bits of I’m doing the right thing still, when the audiologist said to my daughter today, “I was really impressed with the way you talked to my little patient today. It was her first day of wearing hearing aides and you just sat on the floor with her and showed her yours and you just talked to her like it was no big deal.” Wow. Where was I? Oh yeah. Getting the crap out of the car that she conveniently didn’t “hear” me tell her to get for her appointment as she ran ahead of me up the stairs inside. Like I told your mother-in-law…it’s just your normal. Your kids don’t know any different. This IS normal for them.
Love your blog and am continually amazed at the grace God has given you to cope with the challenges you face. Jilly is BEAUTIFUL! Every time I see a picture of her I want to scoop her up in my arms and never let go. To quote one of my favorite lines from The Help – ” You (she) is kind. You (she) is smart. You (she) is important.”
This post is really beautiful. Though we’ve never met and I’m a new reader, if what you write is true (and I have no doubt) than you are the most perfect mother that could ever be for your sweet Jilly. My daughter Quinn was diagnosed with Epilepsy. Severe crying can trigger seizures. Bad ones. Sometimes I lay awake at night and wonder why God chose me to be her mom. I’m impatient, shirt tempered, unrealistic, easily annoyed…that should be more than enough for you to see why I struggle with it sometimes. But I do know this, no one could love her more fiercely than I do. Neither of my boys have stretched me the way she has, and we are BOTH alive to tell about it. Well she will be able to tell about it later. Just want you to know, your heart and words are beautiful filled with vulnerability that touches me and encourages me. Thank you
Vicki
Beautiful post. Beautiful Jilly. Beautiful You.
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I love your heart and words.
Thank you for sharing and helping us mothers formulate the achy patches of our mothering hearts. Never perfect. Always loving and learning.
Blessings,
Susan
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Thanks for sharing your heart. Beautiful post. xo
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