Rubinstein-Taybi Syndrome Archives | Lynn H. Blackburn https://lynnhblackburn.com/tag/rubinstein-taybi-syndrome/ Best Selling Author Tue, 07 Mar 2023 06:06:07 +0000 en-US hourly 1 https://wordpress.org/?v=7.1.1 https://lynnhblackburn.com/wp-content/uploads/2023/03/cropped-LHB_favicon_0001_Orange-2-32x32.png Rubinstein-Taybi Syndrome Archives | Lynn H. Blackburn https://lynnhblackburn.com/tag/rubinstein-taybi-syndrome/ 32 32 He loves me? https://lynnhblackburn.com/blog/he-loves-me/ https://lynnhblackburn.com/blog/he-loves-me/#comments Thu, 30 Jul 2015 19:23:00 +0000 https://lynnhblackburn.com/blog/he-loves-me/

One of my greatest frustrations as a parent is wondering if Emma knows she is loved. Does she? Is she secure, certain, confident that her parents love her?  After years of therapy, Emma can articulate most words, but that doesn’t mean we have conversations. She gets her point across, but abstract feelings and emotions? No.... [ read more ]

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One of my greatest frustrations as a parent is wondering if Emma knows she is loved. Does she? Is she secure, certain, confident that her parents love her? 

After years of therapy, Emma can articulate most words, but that doesn’t mean we have conversations. She gets her point across, but abstract feelings and emotions? No. We are left to wonder.

While her brothers are experts at communicating their feelings about everything from the fairness of life to the tastiness of the food on their plates, Emma often resorts to wordless whines or grunts of frustration when she isn’t getting her way. The other day she stood at the bottom of the stairs for several minutes trying to formulate a word. When she yelled out, “Mad!” I had to force myself not to throw a party. I was thrilled that she’d been able to express what she was feeling. 

(Not that it changed anything — she was NOT taking those crayons up the stairs. The artist-in-residence lost those privileges a LONG time ago).

But back to my point. We tell her we love her. We show her love. We quite literally pour our lives into hers and make every effort to give her a joyful life. 

But the reality is that there are things about Emma’s life that are challenging. For her and for us.

One of our biggest challenges is food.

Emma is allergic to just about everything. It’s easier to list the foods she CAN have than it is to list the foods she can’t. On top of that, she has eosinophilic esophagitis. Basically that means certain foods irritate and damage the lining of her esophagus. The solution? Don’t eat those foods.

Because of this, Emma’s dietary landscape is quite small. 

But she knows there is more out there. And she wants it!

She’s her mother’s daughter and if she can get her hands on an Oreo, she’s going to eat it. She’s well acquainted with cake, and she knows that the pizza she eats and the pizza everyone else eats are NOT the same. If you leave her alone in a room with access to Goldfish or brownies, you can expect to find them missing when you return. 

I often wonder if she thinks we dislike her because we don’t allow her to have those things. Does she think we are unloving or uncaring?

When I see her grab a peanut butter and jelly sandwich and I take it out of her hand right before she eats a bite, does she think I’m MEAN?

After all, those foods are yummy. Her brothers can eat them. Why can’t she? And bless her heart, she does not understand how bad those things are for her. It’s so hard to communicate why they aren’t bad for everyone else, but they are for her. 

So when I have a chance to give her something that she enjoys, I try to take it. 

I had that chance this morning. When I dropped her brothers off for camp, I turned to her with a big smile and said, “Emma, let’s go to McDonalds. I’ll get you a hash brown. (And mommy will get a ginormous iced coffee).”

Her response? “Chick-fil-A.”

My response? “Baby, McDonald’s is closer. (And while I LOVE me some Chick-fil-A, I prefer McDonald’s iced coffee).”

She said okay and I pointed the van toward McDonald’s. But I felt like a mean mommy. We got a quarter of a mile down the road and her little voice piped up from the back of the van….”Chick-fil-A.”

I turned the van around. 

I drove a mile in the opposite direction all the while thinking that we were going to spend more money, I was going to get a so-so iced coffee, and she probably wouldn’t even eat the stupid hash rounds.

When we pulled into the drive-thru, Emma sang out, “Yeah! The right place!”

In that moment, the extra time, money, and not-so-awesome coffee no longer mattered. I’d made her happy and I was as thrilled as she was. It made my morning to be able to give her something she wanted. To bring her some joy. To say “yes” to her. And even though it meant jumping through a few extra hoops, her happiness filled me with delight.

As we pulled from the parking lot, I felt that nudge in my spirit.

“You know that’s how I feel about you.”

And I had to ask myself…do I?

When God takes something that I had in my hand? When He refuses to give me something, even as He lavishes it on someone else? When no matter how much I pray for something, He keeps saying, “NO?”

Do I believe that He loves me?

Do I?

I know I don’t act like I do. I get mad. I even tell Him I’m mad. Or sometimes I just pout and trust that He’s clued in to my frustration. 

Does that hurt Him? Does He look at me, the One who loved me enough to send His only Son to die for me, and does He wonder what it would take to convince me? He’s already given me everything.

Well, except for those things that He knows are bad for me.

They aren’t necessarily bad things. And they aren’t even bad for everyone. But they are bad for me. Maybe they would lead me to sin. Maybe they would ruin my life in a way I can’t fathom. Maybe they would cause me to chase after things other than to chase after Him. Maybe they would, quite literally, kill me. 

So to those things, He says no.

Not because He’s mean.

But because He loves me.

I’m sitting here with tears in my eyes and a barely sipped on iced coffee, listening to Emma play in her room, and I’m amazed at the lengths my Father goes to to remind me of His love.

I’m not sure what’s going on in your world. I’m not sure why He’s told you “no” or why He’s not giving you something you want—maybe even something you really believe you need.

I am sure of this. He loves you. He loves me. 

Someday, I believe I will be able to talk to Emma about this stuff. I don’t know what she will be like in heaven, but I have a peace that there will come a time when she will understand. That some of the things we’ve missed out on here will be ours there.

I wonder… does He feel that way about us? Does He look forward to the day when once and for all we will be eternally certain of His love for us?


And I wonder how different life here would be if we lived each day like the beloved children we are?

For those of you who are new here and may not already know, our daughter Emma was born with Rubinstein-Taybi Syndrome, a syndrome some people say is caused by a “misspelling” of a specific chromosome. We say God is an excellent speller and He makes no mistakes. We believe that Emma is EXACTLY who God intended and created her to be. 
Grace and peace,
Lynn

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Twelve Years Ago, I Was Afraid https://lynnhblackburn.com/blog/twelve-years-ago-i-was-afraid/ https://lynnhblackburn.com/blog/twelve-years-ago-i-was-afraid/#comments Mon, 23 Feb 2015 07:32:00 +0000 https://lynnhblackburn.com/blog/twelve-years-ago-i-was-afraid/

Twelve Years Ago, I Was Afraid I’d given birth to our daughter at 5:22 p.m. The NICU team had gone to work immediately and rushed her away from me. I didn’t even get to hold her. A night that should have been filled with joy was tinged with fear. Knowing what I know now, I... [ read more ]

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Twelve Years Ago, I Was Afraid

I’d given birth to our daughter at 5:22 p.m. The NICU team had gone to work immediately and rushed her away from me.
I didn’t even get to hold her.
A night that should have been filled with joy was tinged with fear.
Knowing what I know now, I could make an argument that I wasn’t nearly as afraid as I should have been.
If I’d known how long it would be before I got to hold my baby girl…
If I’d known how long it would be before we got to take her home…
If I’d known how my hands would tremble on the keys when I searched for Rubinstein-Taybi Syndrome…
If I’d known how my motherhood experience wouldn’t come anywhere close to what I’d thought it would be…
If I’d known how my faith would shatter into a million pieces as everything I thought I knew about God got lost in the long days of specialists and therapies and one missed developmental milestone after another…
If I’d known how hard it would be to be Emma’s mom…
If I’d known what this journey would cost me…
I wasn’t nearly as afraid as I should have been.
BUT
From this place, 12 years in and knowing what I know now, I have to say that I shouldn’t have been as afraid as I was.
Because
God held her when I couldn’t.
God held me while I waited.
God sat with me as I read the description of a diagnosis I never wanted.
God caught the tears that hit the living room floor when the invitations for the playdates didn’t come and all the other kids were walking and talking and saying Mommy while we spent hours in therapy for her to learn how to touch her nose.
God watched as my faith crumbled and He didn’t get mad. Instead, He put my faith back together.
No longer the faith of a good girl who believed her good behavior would get her in good with a good God. 
No longer a faith in a God I had figured out.
No longer a faith that made sense.
Because God doesn’t do things the way I think He should. He transcends my understanding of logic and common sense. His scales don’t tip in my favor when I’m good, but always tip in the direction of my eternal good and the eternal good purposes of His Kingdom.
I don’t know what the future holds. Goodness knows there is plenty to fear.
Middle school.
Puberty (shoot.me.now).
Teenage years.
High school.
Adulthood.
The days when the little brothers are off to college and it’s just me and her again, like it was for the first five years before they came along.
Yeah, looking at that list, I’m afraid.
But I’m not nearly as afraid as I could be.
Because God is already there and there is nothing lurking over the horizon that will not first pass through His loving hands.
I know this not because a preacher told me. Not even because the Bible tells me so.
I know because I live it. Because every day, He is there. No matter what comes, He is already there. Even, especially, when what comes is something I would have preferred to avoid.
I know because God cares more about making me more like Him than He cares about whether or not I like Him. 
Because He cares more about my sanctification than my satisfaction.
Because He’s big enough to handle my fear, my doubt, my anger, my frustration, and understands me even when I throw a temper tantrum about His plans.
Because God uses scared people all the time.
Because twelve years ago, I was afraid.
Tonight, I’ll close my laptop, and sing a happy birthday goodnight to my Emma. The little girl who rocked my world. The little girl who made me into a much better mommy than I would have been if she hadn’t permanently altered my definition of motherhood. The little girl who drives me insane and brings me indescribable joy. The little girl God designed before the creation of the world to be exactly as she is. The little girl God has big plans for.
The little girl God entrusted to me twelve years ago, even though I was afraid.

 

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Rite of Passage https://lynnhblackburn.com/blog/rite-of-passage/ https://lynnhblackburn.com/blog/rite-of-passage/#comments Thu, 31 Jul 2014 06:00:00 +0000 https://lynnhblackburn.com/blog/rite-of-passage/

The rising 3rd-5th grade kids in our church left for camp today. Look Up Lodge is a rite of passage and my Facebook feed is full of pictures of happy campers. I’m excited for all of them. I truly am. But a little part of me is crying. The little part that every now and... [ read more ]

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The rising 3rd-5th grade kids in our
church left for camp today. Look Up Lodge is a rite of passage and my Facebook feed is full of pictures of happy
campers. I’m excited for all of them. I truly am.
But a little part of me is crying.
The little part that every now and then rebels against the
reality that is my life. Because I didn’t take my rising 5th grader
to Look Up Lodge this morning.
I spent the morning researching GPS tracking devices for
her.

I don’t often write about Emma or about being a “special
needs” parent. Mainly because most of the time, I don’t think of myself that
way.
I don’t dwell on the allergy-free meals, the medications,
the pullups, the therapies, the doctor visits, the IEP meetings, the underlying
but ever-present frustration of having a child who cannot tell you about her
day, or the uncertainty of her future.
Just reading that list is depressing. If I thought about it
all the time, I’d need to be sedated.
Instead, I think about the way she yells, “Mommy!” every
single time she sees me. The way she is fearless in her style. The way she
insists on an upside down piggy back ride up the stairs before she goes to bed.
The way she refuses to leave the house without a bow in her hair. 
The way she
swings with abandon and spins with joy. The way she’s obsessed with
toothbrushes and Goldilocks and sign language. The way she has wrapped pretty
much everyone who has ever come into contact with her around her little finger.
But last week, when she wandered from our yard and
disappeared for over an hour…when I had to explain to the police that they
could call for her but she might not answer…when I ran up and down the streets
and barged through my neighbors’ back yards…when I watched the officer put her
pillowcase in a plastic bag so the bloodhound could get her scent…
In that hour, I felt every second of the last 11½ years of
special needs parenting.
And all I wanted was the privilege of doing it for the rest
of my life.
There are many more rites of passage to come. Some will
sting. Some will throb. Some will leave me sobbing in the shower.
But then she will come down the stairs in her footed pajamas
and she’ll yell, “Mommy!”
And it will be okay.
*Emma was safe and sound the entire time. She’d wandered
into our neighbors’ home and was playing in their playroom. They were not at
home, but found her when they returned to a cul-de-sac full of police cars.
We cannot ever fully express our gratitude to the family,
friends, neighbors, lawn care workers, mail carriers, and police officers who
joined in the search. We are so blessed.

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First Day Fears https://lynnhblackburn.com/blog/first-day-fears/ https://lynnhblackburn.com/blog/first-day-fears/#comments Tue, 21 Aug 2012 14:00:00 +0000 https://lynnhblackburn.com/blog/first-day-fears/

First day of 1st grade Tomorrow is the first day of third grade for my sweet Emma, so I decided to revisit something I wrote two years ago—on the first day of first grade (isn’t there a Veggie Tales song in there?). **For those of you who might not know, Emma was born with Rubinstein-Taybi Syndrome .... [ read more ]

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First day of 1st grade

Tomorrow is the first day of third grade for my sweet Emma, so I decided to revisit something I wrote two years ago—on the first day of first grade (isn’t there a Veggie Tales song in there?).

**For those of you who might not know, Emma was born with Rubinstein-Taybi Syndrome. As is typical of our RTS-sweeties, her speech is significantly delayed.**
From August 2010…
I was doing OK until it was time for me to leave her. Emma gave me this look that, to me, said “I’m trying to be brave . . . but I don’t know about this, Mommy.”
I almost lost it.
These are the days when having a child who can’t—not just is reluctant to—not just that it’s like pulling teeth to get the info—but that cannot tell me about her day could drive me insane. Or maybe to order a peppermint mocha.
I would give anything to know what she is thinking, feeling, and wondering.
Does she understand that school is back in for the year? Does she know that she’s going back tomorrow and the next day and the next? Does she wonder where her teachers from the last two years are and why the classroom is different? Did she enjoy her day? Was everyone nice to her? What was her favorite part of the day? Her least favorite?
These are the questions that I never get answers to.


Emma – 2nd Grade Awards Day

So I take them to One who knows the answers. And I beg Him to communicate with her little heart and ease any anxiety she may be feeling. And to give me wisdom to know things I couldn’t otherwise know. To show me when to intervene and to give me the good sense to stay out of the way when she’s got it under control (as she usually does!).

It helps me to remember that He loves her more than I do.
And that He is holding her safely in His arms.

(As you can see…she not only survived, she thrived!)

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