Self-Taught

My girl. Full of surprises always.

Yesterday, she was whistling. Wait, what? Whistling? I’ve never heard you whistle!

Exactly.

My girl taught herself to whistle. And I’m one proud mama.

We continue to fight against Chloe’s body regressing and getting tighter and weaker. It seems she loses more skill in walking and sitting and getting around each week. We feel like we’re fighting a losing battle, but we continue to fight it, determined not to give up until we’re completely defeated by it.

Yet, in the midst of what appears to be regression, my girl gains a skill. A coveted skill! A skill her brother very much wishes he had! In fact, last night each time Chloe would whistle, Zippy would yell at her to stop! because he was so jealous of her.

Yes. My girl gained a new skill — one that she taught herself to do.

Hahahaha! I love it!

And I’m encouraging her to show it off!!

Whistle a sweet tune, sweet girl! I love that you write your own music in this journey that we’re on together!

Happy New Year!

It’s minute one of a new year.

12:01AM

January 1

2014

No resolutions — it’s just groundwork for failure.

No word of the year — having to narrow down to just one word makes me shoot too high and miss the mark after a week or so.

But I do have a few thoughts as I enter this new year.

My mission in 2014:

  • Extend grace.
  • Do a little each day.
  • Recognize miracles.
  • Choose happiness.
  • Be someone’s light.

Sounds like the recipe for a good year of contentment. Bring it on.

 

2013

We are 12 hours away from beginning a new year. For those who have followed this blog for long know that I love love love new beginnings. A fresh start. A clean slate. A beautiful new canvas to add color to…to add life to…and to add purpose to.

2014 is fast approaching. But before jumping right into that new beginning, I’ve been thinking about what 2013 was for me.

12 months. One year. 365 days. That seems like such a loooong time when you think about it. But then again, it seems like a fleeting moment when you really think about it. Those moments. Those lessons. Those blessings. Now they’re all just a sweet memory that leaves a sweet, sweet taste in my mouth. …and then there are others that make my eyes water with the sourness and bitterness. Yes, a yearful of stuff to ponder.

In 2013, I grew in thankfulness for my children and in their uniquenesses. The love I feel for them sometimes feels like a punch in the gut and takes my breath away. The tears spill out as I consider my love for them. They each truly have my whole heart and being. Motherhood is not like anything I ever imagined. I have been so proud of each of them this year! They are so amazing! The best in the world, hands down!

I learned more of my weakness in 2013. There are times when I am so determined and so stubborn that it fools me into thinking I’m strong and capable. But I have really learned the deep truth that I am a weakling…a tiny little incapable weakling. Thankfully I serve a big God who makes me strong, but I am nothing at all without Him. Just a weak, nothing, little girl. And this year I realized that over and over and over as I realized I couldn’t do everything I wanted to do and had to step out of some commitments. I realized it as I have watched Chloe’s body regress and worked my tail off to make it stop — but I can’t. I’m nothing. I realized my weakness as I went back to work very part-time this fall and felt the extent of the toll that working just-that-little-bit takes on me and my high-maintenance family.

In 2013 I discovered that happiness is a choice and a deliberate decision. Happiness isn’t something that just happens naturally in certain circumstances. It’s a choice. It’s a choice that I can choose even when things are really stinky and depressing and hard. And happiness is something that can get you out of bed in the morning. It can help you laugh at things that could otherwise ruin your day in an instant. It can remind you to look on the bright side even though it’s the darkness that is so glaringly obvious. Happiness is a choice. And life is a whole lot more livable when I choose it.

In 2013, I learned that in order to have a friend, I have to be a friend. Friendship takes effort — deliberate effort. And while there are times when other important things in life must trump the efforts of friendship, the truth is friendship is very important and must be nurtured. Friendship is water for the soul. And I have become very thirsty.

And in 2013, I was shocked by the smallness of our world. Getting acquainted for the first time with my half brother and his sweet family who live across the globe forced this world I’m standing on to shrink up in an instant. Messaging, texting, calling, and chatting face-to-face on the computer screen with them made Earth tiny. (2013 = tiny Earth)

However, with the shrinking world, I also felt my heart nudged in the opposite direction, too, as 2 of my nephews and one of my brothers scattered from Texas to follow their dreams/journeys. To have nearly always lived within 15 minutes’ drive of everyone and then to be scattered across the world is such an odd thing. It leads me to desire more connection with my family while there’s still time. (Sound morbid? Don’t mean it for it to. It has just made my heart oddly tender.)

So as those who know me can maybe sense, 2013 was strangely emotional for me. Since I don’t do well with emotion, it has been an odd one. One in which I am having to re-evaluate and figure things out. I don’t know…maybe I’m finally growing up and having grown up thoughts and feelings….

2013 was not the year I expected. But 2013 has grown me hugely (in more than one sense of the word, unfortunately!!! hahaha). Seriously, it really has. Maybe I have more questions than answers for the first time in my life. I’m waaaaay more thoughtful/introspective than ever — and it really sorta weirds me out.

2013, thanks for all you taught me and brought me. I think we did okay together. See ya. Putting ya in the books.

Image credit: http://www.backgroundsy.com

Thankful, yes.

So, I know yesterday was Thanksgiving, and everyone wrote their thankfulness posts yesterday and have moved onto Christmas. But I’m a day late. Please let me indulge in a thankfulness post a few hours tardy.

I like Thanksgiving. It is a very important holiday for us to gather with our family and love on them and say a few things that we probably should say more often during the year: I love you. I’m thankful for you. I’m glad you are in my life. I’m grateful for our relationship and for your friendship. Etc.

Besides hanging with some of our favorite people, eating some of our favorite foods that are reserved only for that Thursday celebration in November, we just sit around and watch TV or play games. (I mean besides the slaving in the kitchen before and after the meal.) And besides, the food is fantastic!

And Thanksgiving is just a great time to count our blessings and name them one by one!

While I won’t be able to name them one by one because I think it would make my blog explode from the length of the post, I will tell a few things that I listed this year — in no particular order.

thankful

I am thankful for my children. Each one of them are incredibly hard workers, persistent and determined in their own areas. They have all 3 accomplished great things — unexpected things. All 3 of my children have a heart for God and love to worship Him; they love to listen for His voice and believe the things He says to them. And each of my kids have completely, 100% stolen my heart forever and always — they cause me happy tears and a full heart nearly everyday. They are truly my gifts!

I am thankful for Paul. He goes to work everyday to support his family. His family causes more stress and difficult decisions than most families do, and he keeps on keeping on. He recognizes and deals with each of our quirks and loves us anyway. He enjoys life and has passions in life that he follows and makes a priority. He is the smartest person I know and nearly always has his nose in a book.

I am thankful for Paul’s family. His parents, still married after more than 50 years, enjoy their children and their grandchildren. They have a big house and love to have it filled with their family and friends. Paul’s family likes to have fun, and laugh, and play games.

I am thankful for my family. My parents love their children and grandchildren and are filled with pride and thankfulness for our relationships and successes. My parents have been married for 50 years and have passed down quite a legacy of faithfulness and commitment and purpose to me and my brothers. I love to gather with them and my sis-in-law and my nephews and niece. Our family who gets along and enjoys each other is so unusual this day and age, and I’m thankful for it.

I’m thankful for my house and my neighborhood. I love to be in the 4 walls of my house. It’s warm in the winter and cool in the summer. There’s space for everyone and love in every room. It’s a place of making memories for my family. Our neighborhood is racially diverse and is a great mix of ages. We even have a little lake and walking trail that is a lovely place to be. It’s a great place to live.

I’m thankful for my church. My kids have great friends there and have learned to have a personal relationship with Jesus. My boys have had mentors who have helped grow them up in the things of God. They have learned to worship God passionately and to use their gifts for the Lord.

I am thankful for my kids’ teachers and schools. Elliot has opportunities that he excels at, Zippy has some teachers who he has bonded with, and Chloe’s team of teachers have been amazing. When you entrust your children to a group of people for 7 hours everyday, it’s so important to know that good things are happening for those 7 hours! It is NOT something that our family takes for granted since we have experienced it both ways.

I am thankful for the sounds my children make when they practice their instruments! I LOVE IT! I wish they practiced for hours everyday so I could listen more and more! Elliot on the marimba, snare, and bells; Zippy on the violin; and Chloe on the cello. Keep on making music!

And this year for the first time, I have someone else to be thankful for. A couple of months ago I connected with my long-lost half brother. He is 9 years older than me. I’ve always known about him but never met him. His daughter reached out to our family on facebook, and we’ve been chatting and getting to know each other for the last six weeks or so. My brother has been married to a lovely woman for 25 years and has 2 wonderful daughters, age 23 and 10. So just like that, I gained a brother, a sister-in-law, and 2 nieces! What fun! And what an amazing gift to receive right before the holidays!

Yes, my heart is full of thankfulness. Can’t you see why?? That is quite the list!

And now we enter into Christmastime! So joyful! Bring it on!

Photo credit: http://www.abortioneers.blogspot.com

Fi.Na.Lly.

Finally.

First, please refresh your memory on this post before you read this one. And while you’re reading that one, please notice the date on which I wrote it. And please notice how long I had been working on getting Chloe’s wheelchair already at that time.

Would you believe that we Just Yesterday got Chloe’s new wheelchair!? Seriously. I started this process in May — possibly even April. Never not once did I receive a phone call or update from the DME company without my calling them first. And just yesterday finally received Chloe’s chair! Ugh. It kills me.

And not only did it take over 6 months to receive the chair, but it is not even right. Nope. First, the pretty little decorative wheel covers haven’t come in yet so it’s incomplete. But also, the seat is skinnier (narrower) than her old one is! She barely fits her bottom into the new “bigger” chair! Her balance and strength are poor so her actually moving in and out of the chair independently and getting herself into that tiny, tight, little seat is impossible. Ugh.

So the DME guy assures me that this chair has plenty of growth in it for Chloe even though it looks smaller than her current one. And he had to turn around and order a larger (wider) seat for it, already having to grow it even before she uses it. UGH.

I can’t stand it.

And for the first time, I had Chloe’s name monogrammed into the back of the seat so that when people ask her what her name is, she can independently communicate to them what her name is simply by pointing to her name. But the letters of her name are ridiculously small and hard to read — I’m not sure I could read it if I didn’t already know what it said.

What a huge disappointment. Especially after having waited for as long as we’ve waited.

But Chloe loves her new chair. That should help my attitude and disappointment, I suppose. She loves that it’s purple and that it has her name on it. She loves that the wheel locks are different and the lap buckle is different. She loves to mess with stuff and figure out how it all works. So she’s thrilled.

But mama’s just not so sure.

I’ll post a photo of the new chair once we get the cute new wheel covers. That way you can get the true picture.

Tell All

SAM_1127

I happen to be a mom who believes it is important to talk to your child about his/her disability very early. I think it’s important for them to understand why life is “hard” and why they’re “different” and what to call what they’re experiencing.

And I think the earlier, the better. I think earlier is better because if you wait until your child is older, then you are faced with a sit down and spill the beans conversation. You have to have The Talk. Your child has a time when he/she remembers finding out the news and facts of his/her disability.

If you tell all and tell it early, then there is never a time your child didn’t know. It is very natural, it is not shocking, it is not surprising, it is not confusing … it is just something that has always been and something that he/she has always known about.

I think I walked into this whole disability discussion thing and lucked out, actually.

You see, I didn’t research disability before I was thrust into it. But I did research adoption before I was thrust into it.

I read books and articles about adoption. Some of those articles and books addressed the issue of telling your chid he/she is adopted. I read and agreed with the articles explaining that it makes more sense and is less harmful and confusing for the child if you talk about it very early so that it is something they have always known. You talk about your child being adopted even before the child understands what adoption is… before they even know that it takes a mama and a daddy … before the words even mean anything to them. If you tell their adoption story from the time they are very young, then they will always know it, and there isn’t a need to have a sit down and spill the beans conversation.

Granted, a wise parent will  give details and use words that are appropriate for the child’s age and maturity. For example, I didn’t tell Zach details about the trauma of his birth nor his birth mother’s poor choices during pregnancy until he was old enough to hear that part of the story. But from a very early age, he knew he was adopted. And usually before he could completely understand the meaning and implication of his birth details, I would begin to talk about those details so that when he was old enough to understand it, it wasn’t the shock that it would have been otherwise….

So that was my approach to talking about adoption. And I applied the same process and theory to talking to my children about their disabilities. They’ve always known about their disabilities. They’ve always known that they have to work harder than most people to accomplish things and to reach milestones. They always have had the words to answer questions when they’re asked why they do things differently. And it’s worked for us.

SAM_1149

I’m always shocked when I hear about kids or even adults with disabilities who don’t know they even have a disability. I know people just do things different ways, and it’s certainly the right of a parent to choose when to talk to their child about their disability. But it seems so much easier to have that conversation nonchalantly and casually and a little at a time over the course of time. And it truly seems like a disservice to not inform the child about their disability label.

But that’s just me.

I recently read an article written by an adult with autism about the importance of parents talking to their child about disability. I posted it on my facebook wall. A friend private messaged me with an interesting observation.

She has a teen son with autism. She said they had always told him that he had autism, but he was never able to really understand what they were telling him. Finally when he was old enough to grasp the diagnosis and the words, he was angry and wondered why his parents didn’t tell him about his autism earlier. Of course, they had been trying to tell him for years! He is currently in a stage where he blames his disability for bad choices and challenges, but his mom, my friend, is longing for the day that he embraces his autism and can move on and accept that autism is one of his characteristics that affect his life. This mom longs for the final step of her son’s embracing his disability. I thought it was interesting — it revealed a possible stages of understanding and accepting one’s disability, with the final goal of embrace. Interesting, right?

I know everyone is different. Parents. Individuals with disabilities. Everyone is different and will handle things differently.

Even though Chloe has always known she has a disability and that that is the reason she has so many doctor appointments and therapies… and it’s the reason that she has to work harder than others to accomplish a task, etc., lately when I actually have a conversation with her about disability, she says she doesn’t have a disability. When she says this, I just point out the fact that things are harder for her than for others and that she has to do things differently than others sometimes because her body works differently. And I tell her that, yes, she has a disability, but that she is a hard worker and doesn’t let her disability stop her.

Some may argue that I shouldn’t keep telling her that she does, indeed, have a disability. But I feel strongly that she needs to understand it and have the words to talk about it when she’s faced with challenges. If she is unaware of her disability, then it will be impossible for her to advocate for herself. Knowledge is power, even when you’re talking about disability — perhaps especially when you’re talking about disability.

My point? Talk about it! Keep talking about it! It’s important for our children to know what everyone else knows!! And to notice what everyone else notices.

Update

I just wanted to give you a quick update on Chloe.
As you may have been aware, Chloe has continued to regress in her walking over the last 6 months and longer. It continues to get harder and harder for her. Doctors have no clue why. Their best guess (and the best case scenario) is that her muscles have not been able to keep up with her growth spurts. Acting on that assumption, we have been doing some pretty intensive physical therapy and stretching/strengthening exercises. She also received some botox injections last week to help loosen those muscles for a few months. Her walking may very well get worse before it gets better– it’s all part of the process.
Truthfully, the onset of puberty may also be playing a role in this whole thing. We just don’t know.
Also, yesterday she failed her swallow function study, meaning she can no longer drink thin liquids. She aspirates thin liquids (water, juice, skim milk)– they go down into her lungs instead of her stomach. So we will need to go back to thickening any of those liquids that she drinks.
We haven’t had to thicken liquids in several years. It makes me mad, actually, that we have to go back to doing that. It irks me that something Chloe had overcome and beat has come back to cause problems. I threw a couple of emotion-spewing temper tantrums yesterday after the news, very much like a child would throw a tantrum. I hate it.
The good news from the swallow function study is that she coughed when she aspirated. That is an improvement from when she was younger — she was a silent aspirator; thus, we never knew when she aspirated or not. So at least she has a better cough reflex.
In all honesty, it is troubling that she has regressed in both of these areas at the same time. We are just praying that whatever is going on in her body can be stopped and can be reversed. Feel free to join us in praying for her if you want.
Just another example of life without a diagnosis… Is this the next step in the progression of her unknown syndrome? Or is this simply a reaction to puberty that she will be able to overcome? Or what is it exactly? and what’s the best way to treat it?
Since I’m a big don’t-own-it-til-it’s-yours person, we will just continue to work hard to combat all this stuff. Hopefully she’ll beat it. She is an amazing kid and the hardest worker I know — she definitely endures through the pain. Although she’s never said the words, I think one of her mantras that she knows is truth is “No pain, no gain.”
Keep it up, kid!
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