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Dear Rylie,

It appears you will be getting that pony after all. Sneaky little devil, you. As you sit in your crib throwing the mother of all I’m-Almost-Two tantrums, I love you more than ever. The nice ladies from Early On came out yesterday and tested you (us?) for almost 2 hours… and this is what they found:

You have “fluctuating muscle tone.” You don’t have great control over your muscles, which is affecting your walking and your speech. You tend to make sounds with your mouth closed, implying your voice muscles are not up to speed yet. These are both things we can work on with exercises and the program they offer through Early On. An occupational therapist is going to come visit us next week to do a more in-depth test on some of your skills. Basically, you’re doing half the stuff an 18-month kid would do… and the rest, you’re not even close on. Like, if I tell you to get me a spoon you head over to the wall and start dancing. I, personally, think this is great… but on paper, not so much.

I know, right?! I was surprised, too. The thing is, Ry… chances are really good you’ll simply outgrow this in time. Every kid is so different. But, what if we waited and you didn’t and it could have been helped? Well, that’s just unacceptable. Even for this laid-back mom. Let’s deal with this now, preventatively. You are remarkably social and interactive. This is a good indication that your “special needs” are simply physical and not emotional. Goodness knows, coming from your particular parents, you will have enough emotional needs. We’ll deal with those in junior high. Oh man, will we deal.

My favorite part of yesterday was when Ms. C asked you to stack tiny blocks on top of one another. She was looking for 5-6 blocks. You watched her example intently. You picked up two blocks and pressed them together within an inch of their wooden lives. And, then you chucked them bridal-bouquet-style over your head backwards… never taking your eyes off Ms. C. I repeat: You are absolutely the best thing ever.

It’s hard to hear you are behind… even just a little bit. I cried during the debrief… and, honestly, on and off throughout the day. I am struggling with the label of “special needs” and the fear of you not being ok. I keep picturing the children I worked with for many years that truly struggled to function. Kids who went to special schools. Kids who were lost inside themselves and couldn’t find their way out. In reality, the term “special needs” covers everything (from a national funding standpoint) from pigeon-toes and speech delays to Down Syndrome and beyond. It’s a ridiculously broad term… but it gives us access to good people with good intentions and good training, so bring it. I’m over the stigma. I’m back to life, back to reality. I’m fine. Seriously. I just needed a minute (day?) to flip out and now I’m back to the supernatural calm that is me. Apple pie, anyone?

My heart keeps coming back to Samson’s parents, Ry (the guy in the Bible with all the beautiful hair). An angel came to Samson’s mom and told her she would have a special child. When she told her husband this, he went to the angel alone and asked, “How should I care for this special child?” [Judges 13]. What a beautiful question. I pray that I will be a mom to continuously ask God that question: “How should I care for Rylie?”

My promises to you:
I will put aside my pride and hesitations and ask every question I can think of.
I will dance and walk and repeat vowel sounds with you incessantly.
I will neither take credit for your wonderfulness nor carry blame for your struggles. You are not wholly mine. This is a big one, Ry… and I admittedly have a long way to go here.

I will continue, every day, to ask God “How should I care for Rylie?”… and I will listen. Because I love you. And because you are so dadgum funny. And because you are, obviously, special.

Now, where to find a pony…

Love,
Mom

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About texasnorth

TexasNorth is a little farm in Western Michigan. It's home to 5 chickens, 25 longhorn cattle, a coonhound (Banjo), 1 barn cat, a husband, and 3 ridiculously funny children. The mom of this zoo has been known to mow the lawn in a skirt and roast marshmallows after dark. View all posts by texasnorth

37 responses to “results

  • diane

    I am crying.
    I thought about you All Day.

    This is beautiful.
    And incredible and I’m so glad to hear This News.

  • CortneyTree

    Uncertainty is the WORST, and I am so relieved that you now have a path to take, to walk with Rylie, together. Big HOORAY for professionals, huh? SO now, while you (and I) can enjoy the wonderful quirky-ness that is your beautiful daughter (the block throwing incident is priceless, really), you also know what and how and when to do the things that will help her get right up to speed with the rest of the toddler set. And she will, and she’ll maintain the sass to keep throwing those blocks, too.

    Congratulations on being the kind of momma who can make those tough promises to your daughter, and follow through on every one. Now get movin’ on that pony…

  • Kristen

    tears.
    oh man.
    you and curt are the parents God chose for Rylie (a billion trillion years ago) for a reason and I think your letter proves it. you are a great mom, kate.
    those promises are the best.

  • Rachel

    I’m crying, too. Katie, you are such a wonderful mom and God has entrusted this beautiful child to you and Curt for a reason. You are right, she’ll probably out grow all these things in time, but better to be safe than sorry. I’m so impressed with how you are handling things and trusting God.

    I absolutely adore the picture of her in the fridge- how cute is she?! I love her little grin!

  • Jimmy

    And we are all with you, step by step.
    Jim

  • thekooiet

    Yup, tears.

    Sometimes it feels good to just cry, doesn’t it?

    Rylie we love you dearly…you are loved…dearly, sweetly loved.

    It’s going to be wonderful looking back at these letters down the road…God is good, and he reveals himself in mysterious ways.

    Kate, thank you for being a testimony to us. God is speaking through you…this too shall be redeemed.

  • gail

    i found you thru sew mama sew, but i know God sent me to read your story. thank you for sharing the story about samson’s parents. what a great question. i have a 10 yr old son who has angelman syndrome and i will ponder this for days!

    can i link your post on my blog? right now i’m writing about how we found out about our son’s dx. it would fit in perfect.

    looking forward to reading the rest of your blog and following up on rylie.

    blessings on you! gail

  • Anonymous

    Katie, you’ve got me in tears. God is with you no doubt. It will take some time but Rylie will be ok with all the love from her Mom and Dad.

    Cathy

  • KatieKate

    Thanks, Friends. You are truly absolutely the best.

    Gail, nice to meet you and link away! I emailed you, too…

  • Anonymous

    Hi Kate,
    I read (creepily stalk?) your blog all the time. But never comment. Until now. I am so trained for the Sunday/Thursday postings that I didn’t check your post today until KMoore told me I should. Thanks for sharing the news.

    I am proof that there are lots of people out there who are thinking about you and your family (and loving your cute Rylie stories!), even if you don’t know it! But your recent post prompted me to “go public” and let you know that I am out here stalking you….and wishing you the best!

    Julie Thompson (Armstrong)

  • Anonymous

    I too was a creepy stalker – but after today’s post I’m not one anymore.
    I have a daughter that was born one week after Rylie was and even though I’m not going through what you are going through right now, I wanted to let you know that I’m thinking about you and Rylie.
    You have a great blog and you’re so talented and I’m glad I finally told you that!
    Carley

  • KatieKate

    No more talk of creepy stalkers! It’s perfectly fine to read and be on your way…

    but I am so glad you both said hello. Julie, darling, Nat keeps me posted on you and your adventures. And Carley… well, thank you for such kind words.

  • Anonymous

    Well I’m glad to know that you don’t think I was a creepy stalker! I guess I never commented before because I felt bad that I don’t have a blog and I don’t put myself out there for anyone to read about like you do. But your post today is so touching and I knew I had to make myself known. So for what it’s worth coming from a complete stranger, Rylie is so lucky to have you as her mom.
    Carley

  • Miss Laura

    1. Bless Your Heart for linking to those lyrics. I was singing them as I read them. You are a brilliant jewel, friend.

    2. So good to have a direction to take…this all sounds very good, though at the same time hard to hear. Just remember that they are experts on treating fluctuating muscle tone and you are an expert on Rylie, and between the two of you, your sweet girl has a lot of expertise working in her favor.

    3. I want apple pie, and also to ride Rylie’s pony.

  • Miss Laura

    P.S. I think all these stalkers are testament to my theory that you should Go Dooce with this website one of these days. Oh, I haven’t told you about that theory? Well, there – now you know.

    P.P.S. We both have functioning, lovely bikes now…ice cream?

  • Amanda

    Hey Katie:

    So good to see your face, too. I have loved reading your blog these past few months. Riley is just beautiful, beautiful! I’m with Rachel…the fridge pic is the best. If Stella could stand, I’d go stick her in the fridge right now and take a pic. Maybe she would look good snuggled in one of the vegetable drawers πŸ™‚

    Katie, we are praying for you and Riley. Lots.

    Much Love,

    Amanda

  • Becky Swann

    Love this honesty you are continually bringing to the blog world.
    I find you to be…wonderful, I think a unicorn sounds much better than a pony, I’m ordering one for Ellen, I will just go ahead and change the order to two whole unicorns!

  • Julie

    sweetest post ever. You are wonderful and Riley is so blessed that you are her Moma.

  • Mandi

    What a beautiful heart you have–and a beautiful daughter, too! We will continue to pray for you guys as you take the next steps on this journey.

    And shouldn’t we all be asking God this question every day no matter what the situation with our kids? Because aren’t they all special and aren’t they really His anyway? Thanks for the reminder.

  • Lisa and Gary...

    Kate, if I may share a story about a good friend: her son, then about 2 1/2, was diagnosed with apraxia (my layman’s understanding is a breakdown in the communication between his brain…which wanted very much to talk, and the muscles in the mouth and throat which actually make it happen). She was terrified of the stigma of a label and had all the same fears in which you are now awash. But some beautiful, wonderful, devoted, and loving professionals came into his life and worked with him. He is now speaking and singing and communicating at or above his age level. Non-stop. Incessantly. Until his mom and dad are sometimes rolling their eyes in laughter.

    I know they prayed a lot during that time. I know you and Curt will talk to The Big Guy a lot, as well. You’ll care for Rylie the way God and your heart know are right. She is a beautiful and, indeed, special little girl. In many more ways than one.

    Our prayers are with you.

    Lisa

  • KatieKate

    Mandi, you are exactly right… it is a question every parent should ask for every child, regardless of need. Yes.

    And Lisa, what a wonderful, hopeful story! I need those! Bring them on!

    I had to turn off the computer yesterday because I started ‘researching’ and basically scared myself to death with all the conditions I found out there. I am not a doctor. I am a mom. And I’m going to leave the heavy lifting to the specialists (for now).

  • sunday

    i know where to get ponies!!! i can teach her how to ride. i will come up there with a pony. how is that. there is the cutest little black and white pony at camp right now who needs just the cutest little girl to be his rider! but no western, only engligh, i know you are from texas but i have my priorities! i love you and your precious family!

  • Chelsey Meek

    We are all special needs.

  • The Bruces (but most likely the Mrs.)

    Dear Riley (and Kate),
    You will love your OT, they are the best thing since sliced bread. Am I prejudice…well maybe. But let me tell you (and your mama), your OT will l.o.v.e. you (almost) as much as your sweet mama does. It’s a requirement for graduation. I know. Next time, you should try throwing the blocks at her, it will make a great impression πŸ™‚
    Love,
    Ellen
    I sure do wish I lived there to come play with you! Kate, maybe you could have her stack those packing peanuts in your yard to practice the blocks skill! πŸ™‚

  • Grace

    “You are not wholly mine.” How hard is this for parents, to hold onto our children with open hands, knowing that they are God’s. Yet it’s the best thing we as parents can do.

    I’m praying for you guys. And even though I don’t “know” you, I feel like I do. Your a friend I’ve never met!

  • ecky

    don’t – i repeat – DON’T look medical type things up online. you will drive yourself simply batty!
    go with your gut and go with what the Early On folks are saying. the internet tends to be full of worst case scenarios. i have scared myself about so many crazy baby things. search for fun patterns. search for vintage fabric. search for great recipes. search for pictures of chickens. but leave the medical stuff to people who actually see and touch and know Rylie.

  • KatieKate

    I know, I know. I knew it was time to turn off the internet when I was considering whether or not she was showing signs of an enlarged prostate…

  • Elizabeth

    Hi Kate,
    I am a friend of Sunday’s (though we always called her Domenica in high school :), and I found your blog through hers a while ago. I have continued to read it because I love the way you write, especially to Rylie. She is one blessed little girl to have a mom like you. Just wanted to let you know a friend of a friend in NC is thinking of y’all and so admires the kind of parent you are to your daughter. I don’t have any children of my own yet, but I hope to be the kind of parent you are one day!
    Take care,

    Elizabeth

  • The Cox Family

    Kate,
    I am thinking of you. No matter how BIG or Little the need they are all special. Every child has quirts…like probably needing Growth Hormones (Paxton) a blind eye (may need surgery someday, Mackey) they are all great to the mother. You are so great with words…I know that you will kick this thing. I absolutely love the part about them not being wholly “ours”, that is a REALLY big thing to realize. I think that this concept with be harder to accept as they get older and they make decisions and the NEEDs become greater (emothional/physical). I will keep you guys in my thoughts/prayers. I have all the confidence that you will be victories no matter the outcome…she will be exactly as the Lord planned Miss Ry…beauty!!! Whitney Cox

  • Miss Laura

    You see, Kate?

    Dooce.

  • sunday

    what is dooce?

  • Miss Laura

    It’s a blog that a sassy lady writes and actually earns her livelihood from.

    http://www.dooce.com

    You must give it a read!

  • Zoe

    Hey Katie,
    Its me Zoe Morris Speer πŸ™‚
    I started reading your blog through Rachel and I love it. You are such a writer. I remember when I was in California and you wrote me letters they were always so entertaining. Anyhow, I just wanted to say I am sorry you are going through this difficult time with Rylie. She is SO beautiful and it sounds like you are doing a great job of handling it all in the best way possible. I think it is so true what you said and we should all remember to ask how to best care for our kiddos.
    We will keep your sweet family in our prayers.
    Love
    Zoe

  • KatieKate

    Hi ZOE!!! What a great surprise. I’ve often wondered how you and Mister Speer were doing. I am sure you are both as beautiful as ever.

    Thanks so much for your sweet comment. Stop by anytime.

  • Bev Vanderwell

    Kate,
    I am coming over soon to talk in person again, to watch your chikens roam, to pet your kittens, and to enjoy wonderful words with you like the other week. Until then, know that I am praying for you all.
    Your words about Samson and his parents were beautiful. thank you. Ben uses speech services through school and I remember when we filled out the paper work it too talked about special needs…etc. It was hard, thinking about what the word “special needs” means and your words about Samson and special were so encouraging and helpful and I wish I had them when I was working through that.
    What you promise Rylie is something that each of us should promise our children and I want to memorize and take to heart.
    much love
    Bev

  • Dan, Annie, Will and Mocha

    Katie, I’m so sorry I missed this whole thing. Camp has me way too busy.
    I’m crying. Your words moved me so much, thank you for sharing this with us all, thank you for putting your words to your sweet girl down and letting us eavesdrop on your heart a little. The story of Samson, wow, what an amazing thing to find wisdom in, I love that God led you to that. We must all ask Him, how should I care for …., thank you for reminding me of that. You and rylie and your sweet husband will be n our prayers, while you learn in new ways to trust in your the Savior.
    Thank you again for sharing.

  • Anonymous

    Hi Mulder Loved Ones, We are proud of you. You are doing great at life. We love you all. Go get that pony. Love the witters 3.

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