True to Form

As you probably know, Chloe had a major surgery a week and a half ago. And as you also know, we were having some major second thoughts and cold feet in the days leading up to the surgery.

But there is something else to tell about the day before Chloe’s surgery that really helped me regain my focus and purpose for going ahead with surgery.

As I’ve already admitted, the day before surgery, as I was trying to pack and prepare for a week in the hospital, I was an emotional wreck. I had stopped to hide in my bathroom and cry my eyes out several times.

At one point, Zippy randomly pulled out a dvd from a photo shoot of the boys from years ago. In the background of the dvd is a beautiful instrumental song. And the dvd itself is fairly tear-jerking because of the beautiful quotes and sweet photos of my sweet little boys.

While Zippy and I were watching the dvd slideshow, unbeknownst to us, Chloe heard the beautiful music and began to make her way from her bedroom into the TV room to dance to the beautiful music.

I heard a bump in the hallway and turned to look. Chloe had stood up in the doorway of her bedroom and had WALKED, bent at the hips and bent at the knees, all the way down the hall, reaching straight out with both hands to help steady herself with the walls. She was STANDING in the doorway of the TV room and DANCING to the music.

All of this while I was having my is-this-the-right-decision doubts and cry fests! There my girl was on her feet! Working hard, walking in her crouched down position all the way down the hall, reminding me that THIS is why we are doing this surgery! Walking is important to my girl. She wants to walk; she wants to dance. And THIS is WHY this major surgery journey was the right decision.

Doubts? Goodbye.

Fears? Present, but understandable in the face of such a major surgery.

2nd thoughts? Nope. Knowing this surgery was the only way to keep Chloe on her feet made this decision a very clear cut one.

Chloe walking down the hall at just the perfect time? It was SO TRUE-to-FORM for her! Amazingly remarkable at just the right time.

Thank you, Chloe — Thank you, God — for making it very clear.

Forward march!

The Detective

Out of sorts.

Emotional.

Just not right.

Overly dramatic.

Controlling/ bossy.

Out of her groove.

Not herself.

In a mood.

Goofy. <smh>

These are all phrases that I and/or Chloe’s therapist and/or Chloe’s Mimi said about her during her therapy session yesterday afternoon. None of us were frustrated with her. None of us were angry or short-tempered.

But we missed it.

All 3 of us love her and know her well. All 3 of us knew something was up. Was she tired? Not feeling well? Just out of routine since this was the first time to therapy in nearly a month?

We knew it was something. And we all gave her time and we listened. We all comforted and validated.

But we missed it.

Later that night I realized that it was her tummy. Her tummy wasn’t feeling right. She asked for food and more food and more food — much like an infant with tummy trouble. You know… the baby’s tummy feels awful, and he assumes it is because he is starving. Or at least he thinks more milk will help soothe his belly ache. Well, that’s what Chloe was doing so I knew it was her belly.

I got her ready for bed and put her to bed so she could sleep it off.

Then I got a text from her aide at school that she was going to stay home the next day. She was sick with a nasty stomach virus. Her tummy was cramping, she felt miserable, and it hurt to move.

Interesting. I immediately knew that Chloe had the same virus. She was feeling the same way. She didn’t have an attitude at therapy; it just hurt to move. She wasn’t averse to putting her feet on the ground to walk as much as she just wanted to keep her knees tucked up into her tummy where it felt a little more bearable. She didn’t lay back and close her eyes right in the middle of therapy to show that she was in control or to make a statement; she was literally glad to be still and close her eyes for a minute. She wasn’t making up the pain in her shoulder that she was crying about. And she wasn’t forgetting which shoulder was “hurting;” they were both hurting — she was hurting all over.

Poor baby.

We are all 3 lucky she didn’t just smack us across the face for not leaving her alone and letting her go to bed.

Life with a mostly nonverbal child is challenging. It’s guess-work. Even when I think I know her so well and know what she’s saying even before she “says” it, it is still guess-work at best. I am a constant detective, looking for clues. And I think I’m a darn good one most days. But it’s still guess-work, putting clues together and trying to make them make sense.

I was so happy that Chloe’s school aide was able to put words to how Chloe was feeling. The next morning when I texted the aide to find out how she was feeling (and probably how Chloe, too, was feeling), her answer was, “Like death.” Chloe had told me she felt yucky, but I didn’t realize she was feeling like death. I guess I’ll up my sympathy and carry on. ❤

All in a Day’s Work

How do you prioritize when everything is ultimately important? when everything is #1?

How do you choose to spend your time when the whole list consists of urgent items?

Do you choose to breathe first or to make your heart beat first? They’re both critical.

That’s how I feel with trying to prioritize what to focus on with Chloe. How do I spend my time and energy when the needs are all so great? Where do I start? Where do I begin? Where do I focus?

Communication is #1 because everything else depends on it. If Chloe doesn’t have a way to communicate her wants and needs…if she can’t relate and give her opinion then what??

But her legs working enough to walk across the room is #1. Remaining functional enough to be on her feet when she wants to be is vital. It’s a skill and ability that we are fighting to keep. The battle against her tightening, weakening legs is one we have to fight with gusto.

Her performing and succeeding in school is also #1. If she’s not successful in school, then her teachers won’t take her seriously. If we don’t work to find ways for Chloe to express what she knows…if we don’t empower her with the ability to express her knowledge, then how…how…? So this ever-growing pile of homework is top priority.

But what about practicing and exceeding in cello? It’s imperative that she grow her talent. It will allow her to be part of a “team” in orchestra in junior and high school. She loves it; she’s good at it. Her playing music speaks to people …speaks to her.

Independence and growing in work/chores/responsibility has to be #1. Self-feeding, personal hygiene skills — It’s those huge skills that will lead her to independence in life. Those skills will pave the way for self-care later in life. It’s ultra important for Chloe’s success.

Encouraging and growing her friendships should be a high priority. She has friends who love and enjoy her; inviting friends over and helping those relationships grow are key. Friendships will deter loneliness.

I. Can’t. Do It. All. There are 24 hours in the day.

What do you do when they’re all a #1 priority?

 

Beautiful New Body

Recently, conversations about heaven, about loss, about death have been more common than before around our house. With the loss of my dad, my kids’ Papa, have come conversations and thoughts that before were unfamiliar to us. And, frankly, didn’t matter as much to us.

When Zippy recently talked about heaven and the new bodies we will receive when we leave these tired, for-earth bodies behind, he made me smile at his confidence and self-love.

“I hope the new body God gives me will still have brown skin.”

And with that one comment, I smiled knowing that we have succeeded (for now) in making him proud of himself and of his race and of his body. Maybe gone are the days of his wishing away his dark complexion so he could look more like his family.

While I know transracial adoption will continue to throw difficult issues at us and at him, I was encouraged with his confidence. And, yes, I smiled. And I agreed that I hoped for the same thing – I hoped for him a new body with beautiful deep dark skin when that day comes.

Sweet family moments. Sweet moments with my son for whom I’m forever, forever grateful. A quick peek into his soul — his beautiful, innocent soul.

First Signs

I remember it happening with Elliot…those first signs.

They started suddenly and on their own. Nothing I asked for. And they increased over time, until they just became a way of life. The new norm.

It was welcomed when it happened with Elliot. Surprising, but pleasantly surprising.

Just one day he started helping me with stuff. Stuff that needed to be done. Without being asked. He started stepping up and being a young man helping his mom. Helping his mom take care of his brother and sister. Seeing something that needed doing and just doing it.

And this week, it happened with Zippy for the first time. Yep. I was moving our stuff from one vehicle to the other since my van was going to the shop. I made multiple trips back and forth carrying stuff. And then it happened.

Zippy opened the back of the van and lifted Chloe’s wheelchair out of the back, moving it to the other vehicle for me. Without being asked.

He had seen his mama working hard and realized there was more to be done. And then he took it on himself to do a big job for me. Amazing.

(I won’t mention here the amazing crashing and banging that came from the back of the van as the wheelchair banged in to the back of the van and then crashed onto the driveway and onto his big toe…)

He had seen something that needed to be done, and he did it. Without being asked.

So now it is happening with Zippy, too. He is growing up.

It sure makes a mama proud!

Fight

Chloe and I had our first screaming fight today.

Well, she was screaming. I was watching.

And, ok, it wasn’t the first, but it was the loudest to date.

She’s not feeling well. She had a cold this weekend and stayed home from school today to recover. She sorta went back and forth from feeling good and trying to dance to just feeling crummy and lying down.

Towards the end of the day when we were returning from picking up the boys from school, she was tired. And grumpy. (I’m not talking about her behind her back or saying anything she’s unaware of — she admitted to being grumpy. I mean, who could’ve denied it after the way she acted….)

She had asked me if she could have a turn with my phone. On the way to the boys’ school, I told her she had to wait until we got the boys just in case one of them called me for some reason. I needed to keep my phone.

Well, as sometimes happens, I forgot to let her have her turn with my phone after we got the boys.

So as we pulled in the driveway back home, she quite nastily demanded the use of my phone. I turned around and gave her the look. But the look didn’t have an effect on her. She just screamed again, “Phone! Phone! Phone! Phone! Phone!” signing phone as she swung her head back and forth.

I just watched in amazement, which was not the response she was looking for. So she took it up a notch. She slapped her arms to her sides and let out a holler.

My eyes just got bigger as I watched her from the front seat while the two of us sat in the van in the garage.

You have to understand that this girl went a big chunk of years showing no emotion; and even more years than that feeling the emotion but not knowing how to express it. But this screaming fit I was witnessing was an example of very well-expressed emotion. And it actually thrills me inside. When you have a child who is stuck in their body, unable to express themselves, and then they learn to emerge and express some emotion and communicate their feelings, it is truly amazing to watch.

That’s what was happening.

“Wow!” I said. “Are you being silly or are you grumpy?” I asked her, pretty surprised at her little show.

“No!!!” she screamed.

I asked again, “No, seriously. Are you grumpy?”

She growled and signed grumpy.

I strongly agreed with her that she was, indeed, grumpy and told her she could have a turn with my phone when we got in the house. But the promise of pleasure deferred wasn’t good enough for Little Miss Grumpy. Sitting in her carseat, she slapped her arms, threw her head all about, and screamed in a mocking way all sorts of nasty words, I’m sure. I just stood out of arms’ reach and watched her.

Knowing it usually helps to put words to her emotion, I explained the situation. “Ok! You’ve made your point! You’re frustrated that you had to wait, and I made it worse by talking to you about it, and now you’re really mad. Will you stop already??”

When she assured me that she was done with her fit, I moved in to help her get out of the car. But she wasn’t done with me. Her arms went to flapping, and her words went to flying, and I went to dodging and stifling laughter. She was really in a tizzy.

When I finally thought I was safe from the fit, I succeeded in helping her from the car and back into the house where she got a turn with the phone after a heart-felt apology.

What??!! Giving into her after throwing such a nasty fit?? Really. I mean, seriously, how could anyone turn down her request after that 5-star performance!?

photo credit: www.empoweringparents.com

There is Grace

I am not a yeller. It’s just not who I am.

I don’t yell at my husband. I don’t yell at my kids. I don’t yell at my friends. I’m not saying I’m a better person than those who yell, I’m just saying that I don’t happen to be a yeller.

But every now and then, a yell creeps in and comes barreling out of my mouth, surprising me and everyone around me. It’s not pretty. I’m nearly always instantly ashamed.

It happened just a few weeks ago. Zippy was having one of his typical mornings while I was frantically trying to finish packing for church camp.

And there you have the key ingredients of the moment: a child whose meds haven’t kicked in yet, that same child whose feelings of excitement and anxiety about leaving real soon for camp perhaps added to his overall mess of a morning, and a stressed out mama who had procrastinated getting her stuff done who was pretty stressed at this point.

For the uninitiated, the above ingredients rarely end up pretty.

I had tried to be patient with 12-year-old Zippy. I had already asked him several times to chill out. I was really working to finish up. He had been pretty constantly causing me to get off task and requiring me to have conversations that I just didn’t feel like having at the moment. Neither one of us were aware that my fuse had grown ever so short in the hectic moments of the morning.

And then the proverbial straw that broke the camels back. Both unaware of the disaster approaching, we both continued on with our separate agendas. And he swirled and twirled by me and flicked my wet head of hair.

And BOOM! Mom, the ticking time bomb exploded!

Mom jumped to her feet, let out a bit of a growl if I remember correctly, and yelled at Zippy. I believe I told him to LEAVE ME ALONE!!

Yeah. Not my best moment. The mom – the adult—telling the happens-to-really-be-needing-his-mom child to LEAVE HER ALONE. Yikes.

I think I sent Zippy to his room, and I went quickly to mine. I took some deep breaths, actually said, “Wow…”outloud, and then returned to the living room, admitted to anyone who was watching that that was really ugly and surprising, and attempted to finish up my work.

Hours later when we were almost at church to load up and drive to camp, Zippy apologized for the morning. I turned off the radio, accepted his apology, and gave him mine. I apologized for yelling at him and admitted that it’s never okay for me to talk to him like that.

Surprisingly, he said he hadn’t even noticed that I had yelled at him. Odd, actually. Or maybe it was just the sudden movement and combustion of my jumping to my feet and growling just before the yell. Not sure. But he said he didn’t notice. And he forgave me.

But the words that broke my heart: “I didn’t mean to annoy you. I just wanted to touch your hair.”

And then he repeated it to make sure it was heard: “I didn’t mean to annoy you, Mom. I just wanted to touch your hair.”

Since he was an infant, he has played with my hair at times. I’ve (nearly) always loved it and cherished those touches, knowing that someday he isn’t going to want to play with Mom’s hair. And here, at a time when he was anxious about going to camp and needed to touch Mama’s hair, Mom freaked out on him and told him to go away. Ugh.

As I fought tears (since tears which blur the vision aren’t ideal for driving), I wondered how in the world his touching my hair could have been so bad that I felt compelled to jump up, growl, and yell at him.

Another moment out of many that I’m reminded that I’m far from perfect. I pray that I’m the mom that my kids need. I pray that I’m not screwing them up for good. I pray that when they think of their childhood they don’t remember an impatient, busy mom.

And I’m reminded how much I’m in need of God’s grace. There is forgiveness. There is a fresh start every morning … or a fresh start right in the middle of the morning if that’s what I need.

And I’m so grateful that Zippy forgives me and loves me all the way to infinity and beyond.

Not Knowing …

Chloe, my 11-year-old daughter does not have a diagnosis. Since her birth, she’s been tested for everything under the sun. But all tests come back “Normal.” But my Chloe is not normal.

She has a normal MRI of the brain and spine. Her chromosomes all come back as normal also. Her blood work usually comes back normal and shows nothing. She has the doctors baffled, really.

For years her neurologist and her geneticist passed her back and forth, unwilling to “own” her. The neurologist would swear it must be genetic. The geneticist would declare it must be neurological. Finally they agreed that what she has is genetic — a syndrome of some sort — but they don’t have a clue what.

It used to really bother me that she didn’t have a diagnosis. I would spend hours and hours and hours researching on the internet, trying to find the answer. Somehow, putting a label on my child would give me peace or finality, I guess.

But the Lord ended up giving me a peace about it, and I was set free from having to figure out the mystery of Chloe’s diagnosis. At times it would be great to know the diagnosis so I could more closely relate to folks in the disability community who can list off their child’s labels. Other times, it would surely help as we make decisions for treatment. Some rare times, the thought of life-expectancy comes into my mind … does Chloe’s syndrome include a shortened lifespan?

But really for the most part, her lack of diagnosis doesn’t bother me. She’s Chloe. She’s perfect. And she’s mine.

But lately (as has sometimes happened in the past) a fear of the unknown has crept back up into my mind. I think I’ve mentioned here that Chloe’s ability to walk has greatly diminished in the last year. It has gotten so bad that she crawls around the house now since walking is so difficult. With the regression of her walking has also come the regression of her feeding. She prefers to only drink her Pediasure milk every meal. I’ve been successful most days to get her to eat something, whether it’s pudding, baby cereal, or a squeeze fruit packet. But if it were up to her every time, she’d just drink milk.

Doctors aren’t sure why she’s lost so much of her skill for walking. No one is sure why she has regressed in her eating. Their best guess for walking is that she’s grown so much that her muscles haven’t been able to catch up. If that’s the case, then there is hope for her regaining that skill. However, the doctors also mention apologetically that the truth is we don’t know what we’re dealing with. They always wonder if perhaps this is the next step in the progression of her unknown syndrome. While she’s never given us or doctors any reason to think her syndrome is progressive, the truth is we just don’t know. So when we go through times like we’re in right now, there is some fear.

While I have complete peace in who Chloe is and that God’s purposes for her are and will be fulfilled, I also have to admit that I just don’t know. I don’t know what the future holds for her. But you know what? I don’t know what the future holds for Elliot or Zippy either. In fact, none of us are promised tomorrow, are we?

I am a big believer in not owning anything until you’re sure it’s yours. You know what I mean? You find a lump in your breast and you’re sure it’s cancer and you’re filled with all kinds of fear …. No. That’s not how I do things. I don’t get worried about cancer until I know it’s mine. And I don’t worry about Chloe’s syndrome progression until I know it’s hers to deal with.

I know that her regression in walking is frustrating and limiting for her. Therefore, I have her in physical therapy 2 times a week. I know that if she regresses much more on her eating, she will lose the ability to eat orally, and I don’t want that to happen so we are doing tests and encouraging her to eat foods. I know we have to own those things so I’m dealing with them as they come.

I tell you all of this not to worry you (remember: don’t own it until you know it’s yours to own!) but so that you can pray for Chloe. And so that you can know what’s in our minds and hearts. I try to be fair and share the goods and the bads here on my blog. So here is some fear and some unknowns and some vulnerability.

It’s all in the unknowing…

And for the rest of the unknown … I give it to God. It’s His anyway, isn’t it? He loves Chloe way more than I do so His hands are good ones to place her in everyday. I truly believe that.

Look at Her!

I couldn’t stop looking at her. Her beautiful facial features were dainty and feminine. Her thin face and mature eyes revealed a girl transforming into a lovely young lady. Her sideways glance was that of a pre-teen girl annoyed at being studied and stared at.

Her body was transforming, too. Curves and developments also gave away the secret of a girl growing up.

She was beautiful. She was changing. She was growing up.

And she was my baby.

My 11-and-a-half-year-old baby. My baby girl changing before my eyes into a young woman. It was beautiful.

And it was terrifying!!

How in the world could this be happening? When did it happen? And what in the world am I going to do about it??

I think all parents have that realization — that shocking moment when it hits them full in the face … their child turning into a grown up. I think for all parents, it causes a bit of pride at the good-looking person their child is becoming. I think for all parents, there is some surprise and some fear of what the future holds. Surely for all parents, it evokes a measure of panic — have I done enough? am I ready? is he/she ready?

But for the parent of a child with disabilities? The fear and panic is certainly magnified.

Have I explained her body’s upcoming changes in a way that she understands it? Does she have any questions or concerns? Is she excited about these changes, or is she frightened? What in the world will I do as the changes progress? I mean practically … really … what will we do to handle those things? Is she happy with the “fashion” and “style” that I’m offering her, or is she wishing she could dress in a different way? Have we talked about boys enough?

Look at her. She’s changing. And she’s beautiful. I’ve got to be ready.

These and more (lots more!!!!) are the thoughts of a mom who has a girl-becoming-woman-creature-thing living in her house. A girl-becoming-woman whom she loves incredibly deeply. A girl-becoming-woman whom she doesn’t want to disappoint or embarrass. A girl-becoming-woman who will need way more support than she knows how to give. A girl-becoming-woman whose dignity she very much wants to protect.

And the mom is terrified. And begging for tips and pointers.

Look at her. She’s absolutely beautiful ….

Summertime!

Those who know me know that I LOVE SUMMER!! I love my kids being on summer vacation from school. It is a wonderful time of long, fun, relaxed hours and days together that are really mostly stress-free. I love it! I count down the days til summer finally arrives, and then I laze around and play hard with my kids!

We just finished our first week of summer. It was actually an oddly busy week for me as I had a couple of trainings and meetings. Elliot had a Tech Ed Camp Monday through Thursday so he, too, was busy. Chloe started summer school reading class last week, too, so I was running back and forth taking her to class, taking Elliot to camp, picking Chloe up from class, picking Elliot up from camp … repeat. It was fairly crazy.

But this next week won’t be quite as crazy. Chloe still has reading class for a couple of hours everyday, and I do have a couple of more meetings, but it will be a little more summerish and normal.

Also, next week, we will start our summer limits on screen time and start our summer goals for the summer. This past week, Zippy had unlimited hours on the TV and with the PS3 and wii; he literally could be found in front of one of those screens at all hours of the day. But it was all part of the first week of summer celebration. Hopefully the reality and cruelty of this next week won’t be too much for him to handle. 😉

Our goals for the summer (dare I share them here for all to keep me accountable??) include the following:

• Weekly library visits (getting cards for the kids, too)
• Reading daily
• Keeping rooms tidy (I can hardly type that with a straight face!!)
• Chores (more on that later)
• Math/Reading practice for Chloe and Zippy
• Inviting friends over to play (hopefully every week to keep us from being hermits!)
• Exercising
• Getting outside
• Practicing instruments

We’re starting tomorrow so wish us luck!

Would love to hear how you organize and challenge your children during the summer. I always am looking for ideas and inspiration and encouragement!

Happy Summer! 🙂 Here’s hoping for many laughs and memory making with my kids!!