Saturday, February 23, 2013

stopping the bus

Dearest Lily,

It's Saturday night and we just returned from a wonderful marriage retreat. I had no intentions of blogging tonight- I don't have any new pictures of you to share, except a few random cell phone ones from the past few days.

For the past two years blogging has been more of a way to advocate for Down syndrome, rather than process my emotions. When I began this blog, the latter was the norm...I wasn't writing for anybody but for me, and most of my posts were letters to you. Things changed over time, as I got past the processing stage. In fact just a few days ago I wrote about the gift of special needs, and how I am very much at home here in "Holland." And I meant it.

But tonight I'm writing to you again...

Because out of nowhere, it hit.

The comparison bus.

And I didn't see it coming, which is probably why it hurt so much.

I'll backtrack for a moment...we came home earlier this evening after being gone for a few days. After hugging all of the kids and spending some time with them, I brought you upstairs to our bathroom. I took your diaper off and sat you on the potty. I didn't devote much time to potty training yesterday and today (because of the marriage retreat) so I didn't anticipate success. But to my surprise, your diaper was completely dry - and you had been in it for five hours. Two of those hours were spent in the car, and you'd had quite a bit to drink. I told you what a big girl you were for staying dry, and you beamed up at me with your million watt smile- and promptly filled your little dinosaur potty up with five hours worth of pee. I could not believe you did that in less than a minute, and that you knew what you were doing- you clapped for yourself and pointed to the toilet paper and said "please" as clear as could be. I put brand new big girl chonies on you (with birds on them, for my Lilybird) and called Daddy in for a potty party. I was elated- my little girl was far exceeding what my original expectations were, and I was so high on that feeling.

I took you downstairs to help you show all the kids your new chonies and tell them about your big girl accomplishment. Everybody cheered for you and high-fived you, and all the while I was thinking- take that, Down syndrome. Our kids are more alike than different, and look what happens when you expect instead of accept - you kick the typical Ds expectations to the curb.

I left all of you in the living room and went into the kitchen to open the mail from the past few days. There were four envelopes from the Down syndrome clinic in Portland, where you spent half a day a few weeks ago being evaluated. I opened each envelope, fully knowing what each one would tell me...after all, much of the information they gathered came from my own description of what you can and can't do. We took you to be evaluated so that we can have a record of how you're developing over the years, and we get excellent feedback from the team there on how we can better help you to achieve our goals. So I knew what to expect....

But out of nowhere that hideous bus hit me full force.

Auditory Comprehension.. 

Standard Score - 64 
Percentile Rank - 1
Test Age Equivalent - 1 year 9 months

Expressive Communication..

Standard Score - 74
Percentile Rank - 4
Test Age Equivalent - 1 year, 11 months

Total Language Score...

Standard Score  - 66
Percentile Rank  - 1
Test Age - 1 year, 9 months

Based on formal and informal observations, medical record review, caregiver report, and clinical assessment, Lily presents with mixed receptive-expressive language disorder and a phonological disorder.

I already knew this. I already knew you were not talking like a typical three year old, that compared to typical children your age, you are severely delayed. We have children your age and younger at church who I see on a regular basis - who are talking in full sentences, communicating wonderfully, stringing words together...our own grandson is a year and a half old and has a vocabulary twenty times what you do.

I knew this.

So I have no idea why seeing that data on paper hit me like a ton of bricks, but it did. Daddy came in the room and asked what I was reading- suddenly I couldn't see the words on the paper, couldn't get the words out of my mouth to tell him what I was reading. "What is it?!" he asked, his voice tender and full of concern.

"I knew this," I choked out. "I don't know why it's affecting me like this. I know she has Down syndrome - I know she has these delays."  

My hands were shaking as I read the other reports, detailing your other delays...Visual Motor Integration, age equivalent 15 months....Grasping, age equivalent 7 months...

My three year old is grasping like a 7 month old.

My beautiful, bright, charming little girl is an infant.

You didn't somehow defy your diagnosis, you didn't prove all the statistics wrong and exceed everybody's wildest imaginations, you are doing exactly what any other child with Down syndrome your age is doing.... you have profound delays.

They didn't tell me anything I didn't know. I live with this every day, I know you better than anyone else.

So don't ask me why seeing that information printed out on a piece of paper hit me like it did, but it did.

I hope nobody tries to tell me to "accept Lily for who she is", because I have. Or to "celebrate what she is doing", because I am. Or to know that "God made her who she is", because I absolutely believe that with all my heart. I love you more than anybody else does, and I treasure you as one of my greatest gifts. You are everything to me- everything.

And that's why this hurts so much.

I don't want my little girl to struggle. What mother would? I want the best for you, just like all of my children. I don't look at you any differently, and think "well that's okay that she can't tell me that she is afraid of the dark right now, or that her throat hurts right now- after all she has Down syndrome." I want so much more for you.

And this is where I go back to the beginning, back to that place where I sort through the mountain of emotions pressing in on me, threatening to overwhelm me...

...and I stop the bus.

Deliberately, immediately, stop the downward spiral of pain that will inevitably continue without a conscious effort to end it.

Because you know what I've found, dearest Lily? It's just an illusion. That dark phantom, barreling down the highway of my mind, ready to knock me off guard again, sending me careening wildly to the place of grief I thought I recovered from long ago? It's just a mirage. It has no more hold over me than I will let it, and with the flick of a little switch in my brain called will, combined with a sucker punch of faith - it's gone.

I wrote those words in June of 2011. And they're just as true today.

These emotions, this downward spiral, does not have to own me. Those envelopes, those honest and accurate assessments of what you are doing right now, did not change who you are. Maybe they spelled it out in black and white for me, and maybe they made things a little bit more real because they were someone else's observations and not just mine.

But you are still Lily, and Down syndrome doesn't define you. You have strengths that can't be measured by a set of standards in a book, you have value that is so far beyond what anyone could record by checks and percentages.

So what if you grasp like a 7 month old at age three? We observe that, we look for ways to teach you how to grasp things better, we find things to work on to increase your finger strength, and we roll with it. I'm not going to see these comparisons as anything other than a framework for how we can help you better, and at the end of the day you are loved, and you know you are loved, and if I have to hold your hand to draw a circle when you're fifty-five, what will it matter?

You're Lily.

You're not a "typical" three year old, may never be a "typical" anything.

You're my Lily.

And right now, my spunky little girl is chattering on your sissy's cell phone in the other room, laughing hysterically with that imaginary friend you just called, and you are loving life.

And in a year or two, or maybe even three or four, you'll tell me when you're afraid of the dark, or that your throat hurts, and I bet you'll even get that pincer grasp down too. But even if you don't, I'm going to stop that freaking bus every time it tries to hit me.

Because in the end, you are happy and you are loved and you are my Lily, and I don't want to miss one single beautiful moment of who you are today by grasping at who I hope you become.

Finally brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things. Philippians 4:8

Loving my perfect Lily,

Mama oxoxo


Danielle said...

So true. All of it. And I love her and see only the successes {{hugs}}

Shannon P. said...

Beautiful of my favorites. And congrats on her potty training success,what a big, smart, beautiful girl!

Naomi said...

Love this post. Grief hits at different moments even when you've accepted things and understand them. It's totally okay to feel them. I can relate in a different way.... Praying for you and lils:)) xoxoxo

mom of three said...

Where is the measurement for reading to her babies and holding her babies... too bad there is no measurement for love, the most beautiful gift we can give and receive. I watch her emulate you and those numbers melt into nothing. She is your perfect Lily for sure, Patti... and you are her perfect mommy. Thank you for sharing.

ckbrylliant said...

Agreed. All of It. For me it is not what the papers and documents say it is having to 'Let' these people into our lives to tell me what we already know as if any of it really matters anyway. It's letting so called experts in to evaluate when my other children have never had to jump through such hoops just to go to school or receive a service they need. Yes, it is different and part of the game but it is still hard.

lovemy3 said...

I truly hate what those evaluations do to us. Hailey has one next month and I'm already dreading the report! Thank you for sharing this!

Unknown said...

Perfect letter for a perfect girl. I'm newer here to your blog. I have a 2 1/2 year old with Ds. Beautiful. Thanks for sharing.

Sandryte said...

I know this bus. It has a regular route at my place either.. Unfortunately, we have many children who were born the same time my son was born, and I see them very often. But my lovie has some strong departments as well! He has never had feelings of jealousy (yet?), he lets play with his toys freely and happily, he is such a calm buddie with no hysteria. Best of all, is that I love him and on the scale of 0-100 that would be 574. There is no such a scale?? What are all these specialists doing then?!

Elisabeth said...

Oh how I can relate. The bus tends to hit me when I read reports or have IEP meetings (of which, Wesley's IEP meeting is coming up on 3 weeks). But you are doing a great job of stepping back and remembering that Lily is a blessing from The Lord.

Anonymous said...

This is just perfect... we see our girl doing so, so well and then a test like that will come along and knock us back down. But, like you, we read it and move on because she is doing so well, regardless of what the tests say. xo

Sarah said...

tears. you are such a beautiful person.

Anna Theurer said...

Beautiful post, Patti. Those evaluations always hit me hard too. There is something about seeing those numbers on a piece of paper in black and white. The comparison bus seems to hit when I least expect it. Anyway, congrats on Lily's bit potty moment!!!!

Unknown said...

Perfect post! I'm going to read this again in 2 weeks when I go for my son's IEP meeting. I am drawing strength from it already. Lily is perfect just as she is. Congrats on the potty success!

Kathy McElhaney said...

I wonder how I would measure up if there was scale for nearly 49 year old women? How would each of us be measured? Thankfully we are all loved by God, so much that He came and gave His all.

I think Theodore Roosevelt said it best, "Comparison is the thief of joy."

Chasing Hazel said...

"But you are still Lily, and DS doesn't define you." AND "You have strengths that can't be measured by a set a standards..."


As a teacher, I am consciously aware that all children are constantly being compared to a standard. I always find it such an inaccurate reflection of the child's personality and potential. Some of my favorite little humans are those that aren't necessarily the "smartest" (whatever that means) but the ones that exude the most joy and love.

I LOVE Lily, all she has to offer and all she will accomplish. I LOVE that I am on my own journey with my own little, Hazel.

I too try to "stop the bus" and will continue to throw up road blocks for myself and others in the future. All children are unique individuals with future's that are uncharted territory for us all. That is what I find the most exciting part of being a parent.

Thanks for sharing this with us all!!! I love this post!!!

Nina said...
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Nina said...
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Nina said...

Patti, all of your emotions and reactions are totally understandable. I've had them myself regarding my granddaughter but I've made a point to remind myself that children will do what they're supposed to, when they're supposed to, in God's timing, according to His plan; for that reason none of it really matters! May you also gain comfort in this awareness...

Ann Ehlert said...

Thank you for expressing my thoughts so perfectly!

Katrina said...

Hello from your new Instagram friend :)
I just read Lily's birth made me cry quite a few times. I love your honesty. I love the humor you and Denise shared over the phone that one night about the blessing of being "SPECIAL" -- that really did make me laugh, because I can SO relate to those kinds of comments. I cried at your children's reactions during those "ten minutes" . So honest and so sweet and loving. Beautiful sibling love. Melts my heart.

I'm looking forward to getting to know you and your beautiful family.
another mama of many
Katrina (aka Mamakat9)

Deborah said...

Oh, thank you for writing this. I'm so grateful for your words and your heart and your daughter and my son.

cara said...

When we had our therapy evaluations a few months ago, Benji's speech therapist told me that she had to fill it out but not to read it. She said she hated having to do them, and I should not even look at it. I do not like those things!

It is strange how this will hit me as well. I will think that I do not care about where he is compared to other children, etc. The other day it hit me hard. Benji does not talk very much. I think I thought he would be saying so much to us by now. He does talk in his language all day long. But I cannot have a conversation with him. And the other day, I just wanted to be able to talk to him and know what was on his mind. And then I began wondering if he would ever talk, etc. He says a few words and is able to communicate his basic needs with us, but I just wanted to talk to him. Thank you for your encouragement and bringing it back to the Lord and where our thoughts should remain as we trust in God and His Word.

The love we have for this boy is just beyond words. And the joy he brings to our home; well, there is NO comparison. He would not be our Benji if he was not made with that special extra chromosome. So, I know how blessed we are. And I choose to stay focused on the good! :)

Congratulations on Lily's potty training. That is amazing how long she stayed dry. xoxo

Runningmama said...

I've always hated those printed test results, they do have a way of really sucker punching you. But, I am just like you...I can choose what I think about and how I let the information affect me. Thank you so much for your words today, it's a great reminder to me of how God wants me to think :-) Way to go Lilly on your potty training! We finally have Emily in big girl panties too!

Erica said...

This might be my favorite post. Thank you Patti.

eliz said...

My sweet mamma smiles lovingly at my boys with DS. She hugs and pats MA our group home gal, with love. But she never "expects" much from them in return. Not that she thinks they can't, she just generalizes their challenges. And thinks they won't!!
So imagine her shopping at Target and needing help. And a young woman with DS, a Target employee comes over and helps her find what she is looking for!!!! Right then my momma found a whole new way to look at my boys and MA. :o)
Take that DS!!

The Graham Family said...

I know the bus too Patti. :( It hits out of nowhere!!!! Argh. But you are sooo right. Love overshadows everything else. Love is true. And right. And worthy. The tests and comparisons and delays will be there, but Lily (and Beatrice) are our daughters first and foremost. And they are LOVED beyond any measure. That's what is most important.

Nancy Malone Waynick, M.O.M. said...

This is my first time reading your blog. My 19 year old daughter shared it with me. I have 4 kids, none of which are labeled "special needs". But, you know what? They all have special needs! We have more issues than old magazines at my house. Those evaluations may be a marker of sorts, but you see & write the real evaluations. You know the progress and you hold each one in your heart. Your Lily is one beautiful child! I'd love to have her in my life. I have a friend at church that is a young man with DS. He blesses me and makes my day special every single time I see him. Thanks for sharing Lily with all of us. I can't wait to go back and read from her beginning. Bless you and your sweet family!

Becca said...

Okay, so it always bugs the heck out of me when people say that the numbers don't mean anything, they're not the measure of who my daughter is, yada yada yada. But you know what? They're *absolutely right.* That jolt that you get when you see them never gets any easier (although I will tell you you won't have to see them too often anymore), but seriously, kids don't "perform" for other people, especially ones they don't know. Those evaluations really don't capture our kids as we know they are. But I feel for you, having just been there again recently. It's jarring. Makes us worry even more about their future. But I have every confidence that our kids will show us the way, *their* way. (((hugs)))

EN said...

I have to admit, I've had those moments, too. Mostly because I feel like they've underestimated Josie and I KNOW that she can perform better than that. Anyway, I highly recommend you check out this article:

It hits home when the author, a father of a young man with DS, says, "The eldest of four siblings, he has seen two brothers and a sister surpass him in size, and acquire cars and college educations. He, however, with an underdeveloped entitlement mentality, has been equable about life’s sometimes careless allocation of equity. Perhaps this is partly because, given the nature of Down syndrome, neither he nor his parents have any tormenting sense of what might have been. Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on."

I've read that article so many times and I absolutely love it!

Justine said...

Thank you for writing this post. I just got the IEP that says that my 12 year old son with DS and autism was functioning at age 2 1/2 on some scale. Hit me like a ton of bricks. Most of the time I can celebrate his accomplishments and just appreciate him, but those IEP reports are terrible. I recently adopted a 2 1/2 year old with DS but no autism and she seems BRILLIANT to me, but I know the reality is that she is very delayed, just not as profoundly as my son. He would be classified as "low functioning" and she appears to be "high functioning" (just to put things in relative terms) but they both still have DS. Hurts my heart sometimes even though they are the hugest blessings that God has brought into my life.

My name is Sarah said...

This is Joyce. I have not been here in awhile Patti. Beautiful post! I so remember those punches to the gut. No matter how prepared you think you are, they still hurt.

So just how close to Portland do you live? We land at the airport, Portland that is, on May 14th for the week. Would it be possbible to have a Lily + Sarah encounter?

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Erin said...

I was referred to this post by a friend after I found out what my boy scored on his speech eval. Even though everything you said is true, I can't seem to get the what ifs of the future out of my head. The gap between my son and his peers is getting wider every year and it scares me. I don't want Down syndrome to define my son either and it certainly doesn't in my eyes, it's what everyone else sees that makes me sad. Beautiful post and reminder, thank you.

Sonya said...

I just came to your blog by way of Suzanna and The Blessing of Verity. Reading through some of your most recent posts, I came to this one and I'm in tears. My daughter doesn't have DS but ADHD. We homeschool and I know she has difficulties with her lessons but what wonderful progress she has made, too! Then we got the results from testing she was given. Learning Delays, scores that are below average (by a lot in some areas), blah blah blah. This can't be right, I mean, she's very bright other than having some struggles that would show up in school work. And like you wrote, what the paper and doctor said was not a surprise exactly, but did not define my precious girl. Sure hurt my heart though to read it. Every now and then it pops back into my mind and I have to fight it off again. I know she was created to bring glory to God and He knows her, planned for her. And we have the gift of this amazing little girl.
Your post and so many of the comments reassure me that my feelings were not crazy. Thanks!

Patti said...

Sonya and Erin,
It's always so reassuring to connect with other moms who are going through similar experiences with their little ones. Thank you for taking the time to comment, and sharing your hearts here.
Lots of love,
Patti oxxo