Posts Tagged ‘children with special needs’

Nearly Cancelled… Seriously

 


As Chloe’s surgery drew closer and closer, we all became more and more anxious about the process and the results. Chloe was feeling the stress. I was feeling the stress. Paul was feeling the stress. The boys were feeling the stress — but showing it and feeling it in completely unique ways.

Would the pain be too much?

Have we made the right decision?

Should we really be opting for this surgery for our girl?

Would there be complications?

A few days before surgery, Chloe came down with a cold or allergies or something. I thought maybe that was going to be our ticket off this scary train we were on. But the doctors still okayed her to have the surgery.

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Anxiety became stress. Stress became fear. Fear became panic. This was a really big deal, and it was scary.

A few days before the surgery, at the doctor’s recommendation, I talked to a local mom whose son had a very similar surgery by the same surgeon. Hearing her talk about their experiences scared me to death. She was as nice as can be, and she was glad they had done the surgery. But her son’s story was filled with some complications and difficulties that just about scared me off.

I found a couple of blogs of parents of kids who had similar surgeries. The talk was the same: the first 3 days are absolutely terrible, unbearable. The rehab time is brutal.

This mama wanted to turn around and run. And run fast and far. I was filled with doubts and fears and began to panic.

Then, 2 days before surgery, Zippy’s asthma flared up. It was the worst his asthma has been in about 10 years. As the ambulance transported him downtown, I told myself that if he was admitted then I was calling the surgery off. It would be my sign. It would be my sign that the surgery wasn’t supposed to happen.

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He was admitted for his asthma.  The ER doctors gave him tons of medicine, but his asthma was not responding to treatment. They put him on oxygen and even mentioned intubating him. And then they admitted him. Two days before surgery. In the same hospital where Chloe would have her surgery.

Was this it, then? Should I call and cancel the surgery?

Paul was shocked that I was even considering canceling. (But he hadn’t talked to that mama I had talked to! He hadn’t heard the stories!) He didn’t agree that Zippy’s being admitted should be my sign. He argued we should continue with surgery as planned because it would be a nightmare to re-think the timing of a different date. (And he was right. But it was hard to separate my fears at this point.)

So I reluctantly agreed to pack for the hospital after Zippy was discharged from the hospital….

The day before surgery, Mother’s Day, I was an emotional wreck. I cried hard several times. And I’m not a cryer. It hurt down deep thinking about what my girl was about to endure. It hurt my heart knowing that while Chloe understood the process pretty well and wanted to do it, the reality was she probably had no idea of the level of pain she was going to experience. I cried big and hard several times. I was terrified.

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I kept going into Chloe’s room and looking at her beautiful legs. Her perfectly imperfect legs. I rubbed them and photographed them and kissed them and stared at them. After tomorrow, they would be forever different. This was the last day I would ever see those legs…. I was seriously a wreck.

But the day of surgery, I was back in my brave mama mode. I was up and ready and set for what was before us…for what was before my girl. My emotions were definitely right on the surface and could’ve burst forth at any moment for most of the day, but for the most part I was set and ready. Once while waiting for the doctor to come for surgery, I caught a glimpse  of her little skinny knees and nearly lost it. But I quickly pulled it together.

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Then the doctor came, we said, “See ya later,” and “I love you,” to Chloe, and they wheeled that precious gift with those skinny little stuck knees right out of the room and down the hall to surgery.

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Yeah. It was a biggie. And we felt it.

All in a Day’s Work

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

black #1Her 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?

 

The Secret

Recently found this post. I wrote it when I was in the thick of it. But now that I’m presently not right in the middle of it, I thought I’d share it. It’s real….

It is lonely and dark. It is scary and unknown.

It isn’t talked about. It can’t be shared with people. Because no one understands.

It totally controls your life and your world. It’s unpredictable and always, always present…just waiting to flare.

It makes you scream and shake your fists. It makes you cry and fight back violent tears.

It makes you feel desperate and crushes your breath.

It makes you want to stay in the safety of your own home. Except it’s always there, too, in your home with you. Staring you down. Threatening to attack.

The time bomb. The dreadfully thin ice.

Mental illness is a beast. It rears its ugly, evil head and makes victims of the whole family.

The hardest thing is the loneliness. And the silence. And the pretending it’s all okay. And pretending it’s not there.

Hating the power of the illness but fervently, passionately loving its victim.

It’s dark. It’s scary. It’s lonely.

And it’s so powerful and cruel.

Praying for it to be broken and for my family to be set free.

Going to Camp

I went to church camp this year. Kids camp. I went to support Chloe so she could experience church camp for the first time.

the whole camp crew

It was no simple undertaking. It had to have the approval, blessing, and commitment of our children’s pastor. (She was gung-ho and actually encouraged/talked me into taking Chloe this year.) It meant Chloe and me having our own motel-type room to make caring for her possible and to protect her privacy/dignity. It meant packing lots of food and supplies – including her bed. It meant putting Chloe on a team with the right mix of kids and leaders who would do a good job at including her. It meant being prepared with knowing which games she could participate in and want to participate in.

Camp is a lot of work. (and I don’t mean for just me)

I went to church camp to support Chloe. That was my role for the whole week of camp – just to be Chloe’s support person. Our children’s pastor instructed me to go rest in our room any time Chloe needed it, to participate as much as we wanted to/were able to, to just enjoy and experience camp.

But if our children’s pastor was so excited about our going to camp, why in the world was I dreading it as much as I was? Why was I nearly hoping that something would happen to make us not be able to attend camp? Why was I nearing total shut-down as the day approached to leave for camp?

I was dreading it because I was afraid that I knew the feeling. And I wanted to avoid it. I had supported Chloe very similarly at Vacation Bible School for several years so I thought I knew the pain that was ahead for me – pain physically, spiritually, and emotionally.

Sounds so weird to say that supporting my child at VBS would be so painful. But it was. At VBS, there is much crazy dancing to loud music. My child who uses a wheelchair and has limited strength in her body needed help with the dance moves and to stay upright. When the motions to the song required jumping, it was me with my hands under her arms, grabbing her trunk and lifting her up in the air. The schedule is fast-moving from one room to the next to the next to the next, and the able-bodied kids always beat us to the next station since Chloe and I had to take the way-out-of-the-way accessible route every time. We were always the last ones to the next room. The night always includes a snack bar that served food Chloe couldn’t eat most nights. VBS was also notorious for bringing in visitors to our church – kids who didn’t know/understand Chloe, which meant my having to intervene and explain and answer questions and educate kids constantly for a week. And the whole activity of the night was just a glaring reminder of the things my girl couldn’t do. And then at the end of the evening, I was left with 2 kids (because Zippy was attending, too) who had had an overload of sensory input, and it was beyond their ability to handle it in the most peaceful way — 2 kids who were up way past their bedtimes and who were exhausted beyond reason. THAT’s what supporting Chloe at VBS was like. It was brutal.

Being Chloe’s support person at VBS, I wasn’t a counselor…but I wasn’t a kid either…I was just Chloe’s support person, and it was weird. I felt alone and weird. VBS week has annually been probably the hardest, most isolating week of my life.

(As is sometimes the case, I feel like I need to add something here. My church has been amazing. The people have always included and valued Chloe – it has been a work in progress. But I need to say here that it wasn’t anyone’s doing or wrong doing that made the week hard for me; in fact, I’m guessing my church friends who read this will be shocked that I felt that way. I tried to hide my hurt and suck it up so my kid could enjoy VBS, and quite honestly it wasn’t until recently that I was able to put into words some of the reasons why VBS is such a difficult experience for me. And a side note: Over the years, Chloe has progressed to the point that she was able to enjoy the snack 3 of the 5 nights this year! And also this year I requested that someone else support Chloe so I could volunteer elsewhere. It wasn’t as painful a week for me this time….)

And that’s why I was dreading camp. I figured it was like VBS –only worse since camp is 24 hours a day!

But I was pleasantly surprised.

We ended up having a really good time, and it was much easier physically and emotionally than I was expecting.

the orange team!

First, camp has some downtime built into it. While VBS is nonstop fun and activity for 3 hours a day, the week of camp has some downtime, making it way more doable physically than 24 hour VBS would. Second, I was recognized and treated more as a leader at camp. (I think because there was time to do it!) When leaders were sitting around talking, I was one of them. When the leaders went first at one of the meals, someone grabbed me and included me. Third, Chloe could do as much of the camp activity as she wanted to. Free time was exactly that – she got to choose what we did. And fourth, it was very obvious to me that Chloe’s participation at camp had been thought out – from lining up the golf cart to take her back and forth … to her small group leader having their meeting over on the couches which made it easier for Chloe when she was tired at that time of the day … and many others.

Chloe had a ball. She loved the dancing and worship. She loved the mud pit and the giant slip n slide. She loved the water balloons and the swimming pool.

Chloe inching into the mud pit

The two of us having a motel-style room worked out perfectly for us. She had her bed, her privacy, a place to relax when she needed it, a private shower/bath, a little fridge to store her food and drinks, etc.

She made new friends and hung out with old ones. She had kids praying for her, greeting her, and hugging her. People were genuinely glad she was there. And I think she was, too. And, again, I think part of it was that there was time for that to happen.

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The camp itself was glad to have Chloe there, I think. The camp director was a paramedic and was interested in Chloe and welcomed her. Most of the campus of this particular church camp was accessible for Chloe’s wheelchair. (Although they could certainly stand to do some work on their thresholds as most of them were difficult to maneuver over – one time I even sent Chloe flying out of her chair when she forgot to buckle up. Oops!!)

Overall, camp was a great experience for Chloe, and I’m glad that both Chloe and I got to experience it. I think we would both be open to going to church camp again in the future!

Encouragement through friendship

We just finished a week of VBS at church. Vacation Bible School. It’s a highly energetic, very entertaining, potentially life-changing week for kids.

This year Chloe was the only one who participated. Elliot, Zippy, and I were volunteers. This particular type of volunteering proves to be extremely exhausting! But oh so worthwhile an endeavor!

On the last night of VBS, the leaders were instructed to give encouraging words to each of the kids in our group. As we spoke the words, we gave each child a glow stick as a symbol of the encouragement spoken. It was a very special experience for leaders and kids!

It was during this activity that I was surprised by a fellow adult leader on my team. She grabbed me as I went by. And with tears in her eyes she spoke an amazing encouragement to me.

She didn’t say the usual: “I don’t know how you do it.”   She didn’t say the overused and sometimes painful: “You are a saint,”  or the eye-roll-inducing: “God will only give you what you can handle.”

She simply said that she knows my life is at times a difficult one. But she also said that my life is a blessed one. And she said that I was a blessing to people watching me live my life. And as she handed me my glow stick, she told me that I was a shining star … or light … or whatever it was that she said.

The truth is I don’t remember her exact words. But I remember the sentiment. And I remember how loved and encouraged and appreciated and noticed I felt. I felt validated and worthy. I felt a deep-heart emotion that I don’t usually let myself feel. I felt like I had a friend and that that friend understood and appreciated me.

My eyes brimmed with tears as we hugged, and I let myself receive those words. I breathed in a deep breath and accepted those words as truth.

I sometimes have a difficult time accepting close-to-the-heart, intimate, emotional words from people — especially from a new(ish) friend like this one. But I purposely let myself receive those words and be encouraged.

I felt full. Full of blessing and happiness.

And truth be known, I could’ve bawled right then and there…. But, of course, I didn’t allow that to happen!

“Therefore encourage one another and build each other up, just as in fact you are doing.”  (1 Thessalonians 4:18)

Chatty

For those who don’t know, Chloe, my youngest is mostly nonverbal — meaning she doesn’t use spoken language to communicate usually. Instead, she uses sign language, gestures, a communication device, and any other means she comes up with to get her point across.

She’s brilliant. While you and I and the rest of my family easily form the words, create the sentences and spurt it effortlessly out of our mouths, Chloe has to create a way to communicate with the person she’s trying to reach. And she amazes me.

I told you last week about her bargaining for more pudding. Well, she continues to make strides in her communication. These strides come slowly usually since she’s so laid back — usually a good trait, but for her it sorta cheats her out of communication since she’d usually rather just do without than to put forth the effort.

But yesterday before school she made me smile with her communication efforts again. She ate breakfast very very slowly. She was sleepy and moved in slow motion all morning. The result — no time for pudding after breakfast. (What??!! You don’t give pudding as a breakfast dessert to your kids?? Poor things!)

When she asked for pudding after breakfast, I told her that no, there was no time for pudding. And instead of just accepting my answer or throwing something or any number of responses, she said, “Yes! Pudding!”

Oh. my. gosh. She’s arguing with me now! Classic! Am I the first mom of an 11-year-old girl who celebrated the fact that my daughter was arguing with me?

Then this morning … Hmmmmm. Just realizing all of this communication is centered around food — particularly pudding. Seems it’s quite the incentive currently!

This morning, I offered Chloe a pudding that I opened last night. Since it was open, I put it in the fridge overnight. Chloe isn’t accustomed to cold pudding so we discussed the temperature of the pudding while she gulped it down. When it was gone, she signed and vocalized, “More cold pudding.”

Yep, she just communicated a whole sentence, a very direct and specific request, included an adjective, and didn’t say please!!

I love it!

I love my girl!

How High??

I’ve said a million and one times that my girl would love to sit in the corner and play with baby toys all day everyday. She would also love to convince everyone that that is all she’s capable of.

Chloe is a smart little girl, and she’s amazing at fooling people — and she’s equally amazing at “reading” people.

How many times have I said that if you succeed at getting my girl’s heart, she’ll do anything for you? I’ve said it over and over and over. If Chloe knows you care about her and that you believe in her, then she’ll work for you and obey you. If Chloe doesn’t think you care about her … if she knows you don’t think she can do it, then I can promise you she won’t do whatever it is you have asked her to do. It’s how she ticks!

A great example of this is to compare last school year to this school year. Night and day! Last year, Chloe’s teachers were convinced that she knew nothing and was not capable of succeeding. They were convinced that she couldn’t read and couldn’t comprehend. They were convinced that Chloe did not belong in the general education classroom. And guess what? Chloe lived right up to their expectations. The result? A terrible year for everyone and a little girl who did exactly what her teachers expected of her, unfortunately.

Compare that to this year’s absolute opposite experience. The teachers and Chloe’s assistant are convinced that she knows it all. They are convinced that she can do and that she can read and that she can understand and that she can succeed. And they work hard at helping Chloe belong in the general education classroom. And guess what? Chloe is living right up to their expectations! This year miraculously (NOT!), Chloe is reading at grade level. Chloe is writing paragraphs. Chloe is succeeding. And the difference truly is the expectations and the heart of the staff of people working with her this year.

The moral of the story? We must be careful not to sell anyone short. We must always assume competency and act accordingly.

And just know that if you ever tell my little girl to jump, expect her to ask in her own way, “How high?”  And you can be sure that she will jump precisely according to your answer ….

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