Cookbooks and joy kind of go together.

Dearest Readers, 

I'm long past overdue for a blog post, I know. Forgive me. There have just been too many words hovering in the edge of my fingertips with this move. I've painted the pages of my journal with them, but they're too incoherent to publish for the world. 

It's a hodgepodge of emotions. I'm barely getting used to the rhythm of this new life and soon I'll be moving again. I feel unprepared and as if I'm just floating in space--without roots and with little idea as to what tomorrow will look like. I'm also excited when I think about Spanish conversations and new perspectives on literature to listen to and new essays to write. But also terrified I'm going to fail. I keep studying Spanish as if that's the anchor that determines my success. 

I love the sheltering trees and the lovely people who have welcomed us warmly. I love my school and know I'll love orientation this week. I love our across the street neighbor and the fact that I was able to take an empty measuring cup to his house last night and return with one filled with sugar. I love that he kept his porch lights on for me as I promised to return bearing cookies. 

See? A hodgepodge. 

Tonight I was looking through my most beloved cookbook--The Mitford Cookbook. The Mitford books are my high school years--I strived to create Mitfird in our corner of Arizona everyday. 

The cookbook is peppered with notes--occasions when I made this, how I changed that, ways to improve it. Many talked of surgery.  "I made these the night before Benjamin's surgery..." "I took Mom a mini loaf in the hospital..." "Made on Mason's first day home!" 

Wow, those brought back a flood of memories. I baked because those summers were hard. I baked with my iPod plugged into my ears because I couldn't listen to how painful therapy was. I baked because I missed my mom so much it hurt. I baked because I was scared and sad. 

And my notes reminded me of the joy that we fought so hard for those summers. The night before Benjamin's surgery when we played games and ate brownies that were way too rich. That day in Mason's recovery when we shot a rocket into the air. When I got up early his first day home to make Cynthia's vanilla muffins...and then wrote about it in my book. 

Those surgery summers made up a large part of my childhood. And some people might say that's sad. But not me. Would I love to go back in time and change it so my brothers didn't have to hurt so much? So my parents didn't have to worry? Yes. A million times yes. But those summers taught me something so incredible. They taught me that joy is ALWAYS ALWAYS there. 

It just might take an old cookbook to find it. 

Your blogger, 

Claire

Making Church Safe for Special Needs Families

Dear Readers,

This blogpost has been floating around in my head since last Sunday, and every time I've thought of it the word "safe" has come along with it. With the word "safe", I've thought of this quote from Narnia:

“Safe?” said Mr. Beaver; “Who said anything about safe? ‘Course he isn’t safe. But he’s good. He’s the King, I tell you.” 

That has absolutely zero relevance to the rest of this post, but I love that quote. I love Aslan and all that he represents. But that's a post for another day...

Today I want to tell you a story.

Last Sunday I was enjoying my time in the sensory room for kids with special needs. We have Sunday School, games, snacks, and the occasional craft in that room. There's a lot of laughter and a lot of singing and a lot of smiles. The Special Ministries at our church is so welcoming; and although my brothers don't need to attend their classes, the fact that they were even offered was the biggest reason we chose to attend there. We loved that this church valued its members and families with special needs and went out of their way to make them welcome. Special Ministries is truly an amazing place. 

Sometimes the walk into the classroom isn't so amazing, though. I sometimes feel like special needs families experience life through a bubble, looking out on the world of civilians. It's hard when they have to step out of their bubble, because most of the civilians just don't understand. 

Last Sunday one of our dads (whose daughter is one of my favorite students) walked into the classroom with a sigh. He explained that his daughter had had a meltdown just feet from the door, but that they were working to get her in as soon as possible. I hesitated in my ball-throwing for a moment before stepping out after him. I didn't really have a game plan, I just thought I'd see if a different face could capture her interest enough to get her up off the ground. I felt the bubble pop as I walked toward this family, with their daughter laying on the ground with her shirt covering her face. 

She was unimpressed with my excitement over all the fun things we had planned in class that day. We got her up, and she bolted. Right into a family. I only looked at the woman she ran into for a split second before racing after her, but that split second was enough that the tears came hot in my eyes. If they fell they dried quickly, though, because I was running and reaching and trying to stop her from getting hit by a car as she rushed into the road. Her dad intercepted us and we formed a barrier around her as they tried to locate their car. The whole time, I could hear her mom behind us,  explaining, apologizing,"She has Autism". 

When I walked back up from their car, I looked around kind of stunned. There were probably five men working as "greeters" and traffic control in the area we had just raced through--yet none of them assisted. I have a feeling one or more of them asked what was wrong, hence the mom's constant explanations. 

But still.

If you saw a five year old running out into the road about to get hit by a car, would you wait to ask permission before running after it? 

No. You would run. You would want to protect that little one.

This student is my age and size, so it didn't make sense to the viewers that she was running. They stared and gasped and asked if everything was alright, but they didn't jump in and meet the need. Their stares and questions made it worse. 

This family needed someone to sprint after their daughter and hold her from running farther. There were five men standing around.

Yet it was left to an 18 year old in heels to make the attempt, and fail. 

If her dad hadn't of been there she would have gone farther.

The look on that woman's face that brought me to tears? There was no concern. It was anger. Her expression was that of hot red anger, the kind of anger someone giving you the finger on the freeway might display. 

This is so far from being okay. 

The special needs families aren't the ones who created the bubble--the civilians did. They pushed these families into their bubble by their lack of compassion, unwillingness to educate themselves, and their fear. 

I don't think they did it maliciously. No one standing around that Sunday understood what was going on--they weren't making a hate statement against Autism. The problem isn't the civilians themselves, it's the lack of education. 

I'm so heartbroken that my church offers this beautiful safe haven for these families, yet one step outside that door and they are met with ignorance and misunderstanding. 

Want to know how to make your church accessible to special needs families? Don't just create another bubble for them; educate the general populace of your church. Teach a class on disabilities and how to serve these members of our church, our world. Require everyone who becomes a member to spend one Sunday in the Special Ministries classroom. Make pamphlets with one sentence blurbs of information about the five most common disabilities in your church. Don't want to put that much energy into it? Get pamphlets from Joni and Friends. 

Maybe if these resources were in place, one of the greeters would have recognized this student from his one Sunday in the classroom and chased after her. Another might recall that one-sentence fact about Autism and realize he could help. 

And maybe we just need to wake up to the needs of people (with and without special needs) in general. Are we all so self-focused (even on our way to church), that we don't see the need right before our faces? Angry-eyed woman walked right into us--this dear student didn't have to go far to run into her. She was right behind me, with my butt in the air as I bent over and tried to get my friend off the ground. This student's whole family surrounded her, I honestly have no idea how angry-eyed missed it. 

When you go to church next Sunday, walk around with your eyes wide open. You don't even have to step inside the Special Ministries classroom or chase after a student to make a puncture in the bubble--just smile. Wave. Ask how they're doing. Life can be hard for these families, and many of them leave the church due to the lack of understanding and compassion. Please don't be one of the ones who sends them away. 

You can make it safe. Your Blogger,
Claire

Thank you, Therapists.

Dear Readers,

Not only is April the month of our birthday, it is also Occupational Therapy month! Of course I couldn’t let this event go unnoticed.

As the triplet sister to brothers with Cerebral Palsy, therapists have always been a part of my life. I have some amazing memories of therapists who made a big impact on little Claire as I struggled to understand my brothers’ disability and why I did not have it. My mom has amazing memories of occupational therapists showing her that the term Cerebral Palsy does not define her sons, and holding her hand through the months and years following their diagnosis.

Our first experience with therapy--a study on PT and premature infants!

This month gives me an opportunity to thank those women (both Occupational and Physical therapists) who have not just helped my brothers reach milestones, but have helped our family walk this unique journey.

Our first experience with Occupational Therapy was when we were two years old. When my mom talks about that OT, Susan, she says she helped Mom make it through those first couple of years. The below pictures were taken from my Mom’s scrapbook. 

"Mrs.Susan was Mommy's dearest friend in Chicago--even though we only
saw her at Occupational Therapy! She always talked Mommy through every stage
and she helped us make huge progress!" 

A good Occupational Therapist is one who:

       1.)  Encourages the little sibling to participate, as well. (even allows her to steal beads and stow them away in her diaper occasionally…or every week.)

      2.)  Values the Mom’s input and reassures her that she is the one who knows her children the best. For a first-time mom living in a world of specialists, Mom needed that assurance that she was the most important figure in her children’s’ world. And the most informed.

Baby Benjamin working hard in OT

      

      We moved away, leaving Mom’s dear friend and the boys’ therapist behind. Little Claire was not impressed with the new therapists. They didn’t allow me to join in on Benjamin and Mason’s special “play” time. How was I to understand that they were working? I only knew that they got special time with fun, new toys and grown ups, and was heartbroken when I was repeatedly told “no”.

At our "goodbye" party with their first OT. Notice there are THREE
napkins? Little Claire got a cupcake, too :) 

 To any therapists out there: remember you aren’t just working with your patient; you are working within a family unit. As therapists, you have a platform to set the tone for how the sibling views this disability. Will they resent the special treatment their sib gets, or cherish time spent helping their sib achieve goals? That’s something to keep in mind the next time a whiny typical sibling sits in the hallway during your therapy session.

Eventually I grew to understand what Benjamin and Mason were doing in therapy and realized why I couldn’t take part in it. We moved yet again, and this time the move came with a new type of therapy entirely.

Hippotherapy.  I had fallen in love with horses when we did a hippotherapy summer program. The summer program was amazing, and I was a full participant. When Benjamin and Mason began doing hippotherapy every week, my mom arranged for me to ride one of the boys’ horses for a few minutes after their session was over. I was in heaven.

Tears well up as I write, this memory is still so close to my heart. Right around Christmas, the program director told me he had a special surprise for me. He was going to let me ride my very own horse for a whole therapy session.

Wow. Talk about including the sibling. He saw what joy riding the horses gave me, and despite the fact that I didn’t have special needs and wasn’t there for hippotherapy, blessed me with the gift of getting to ride one of his horses. That was a moment I will always remember, and always be thankful for.

    3.) A good therapist sees the potential in everyone, and helps them make their dreams come true.

This story leads me to present day. These years around therapists left a big impact on me. I have seen the life changing work therapists do for their patients and families, and because of that aspire to be an Occupational Therapist myself. I can only pray I will be able to leave a lasting impact on these precious kids and their families like these therapists have made on us.

Probably the most important attribute of a good therapist:

        

      4.) They don’t care that we are sometimes in sweats (and occasionally PJs) when they come to our house. Hehe

Not too long ago, Mason’s physical therapist was at our house. I had been feeling discouraged, and Mason voiced my concerns to his therapist. She looked at me and said,

“Claire, Occupational Therapy changes lives. You are going to change lives.”

Another moment I’ll never forget. Another therapist making a life changing impact on me.

What makes therapists special? The opportunity they have to make a difference every single moment of every single day. It might be a hug to a frightened mother, the offer to the sister to join in, the encouragement that you are able, whatever your abilities.

To all of you therapists out there, thank you. You really are changing the world—one life at a time. 

Needed to share...

Dear Readers,

I hope you have had a good week. :)

I have to get up on my soapbox for just a moment tonight, if you don't mind...:) 

I had a hair appointment today. I sat down beneath a dryer next to two girls who were also getting their hair done. As I read my book, I overheard parts of their *very loud* conversation. At one point one of the girls was talking about this guy she thinks is cute. The other girl's response was, "Eww no! He looks like a retard!" 

Needless to say, I was fuming. I continued to sit there, thinking of what to say to convince them that using that word is wrong. They continued to casually toss the word around, however, and so it just got to where I had to get up and walk away, before I yelled that they needed to shut up right that minute. Or something to that extent. 

The raging fire they sparked on has since calmed to a deep, deep sadness. Those girls could have been sitting next to a mother whose child was recently diagnosed with special needs. She would have walked out of that salon wounded, and with a vision of the future for her child that included peers bullying him. 

I know those girls aren't an isolated case--I know teenagers (and adults, too) use that word all.the.time. 

They can't imagine how hard it is for that mama to face an inaccessible world, any way, without their painful jests.

They can't imagine what it is like to be the one being called the "R" word. 

They can't imagine what it is like to have to wake up every morning and fight the world's stigmas and preconceived notions about who you are just because you look a little different.

Because if they knew, they wouldn't say it. 

That word is not okay to use. You may say, "Why should someone take offense? I'm not talking about THEIR kid." 

But when you decide to use a word that has historically been used as a medical term for the disabled as an insult, you are insulting all people with disabilities. Even if you didn't mean it that way, I assure you--that is how it sounds.

Families who have kids with special needs have a lot on their plates. After a day of appointments and surgery scheduling and therapies, they don't need your verbal abuse to add to their load.

I'm not going to ask you to use a different word, because no one deserves to be talked about the way those girls were talking about that boy today. Don't just choose a different word--make the choice to lift others up, instead of tearing them down.

Your Blogger,

 Claire

Let's swap shoes.

Dear Teenagers,

 When I was little, I really struggled with making friends. Actually, I still struggle with making friends. But when I was little I would often get reduced to tears, asking my mom why I couldn't find good friends.

I know you've been there, too. People make careless comments that hurt. For some very sad reason, teenagers make a lot of careless comments.

For another reason unknown to me, teenagers like to make a lot of jokes about people with disabilities. My honest, totally ungrace-filled reaction is a combination of wanting to burst into tears and scream that person's head off.  I want to shove them in the shoes of someone with a disability so they realize it is not something to make jokes about. I want to force them to feel compassion.


Why do you feel the need to laugh about that kid walking down the hallway with a gait that might be different than yours?

Why do you make jokes about serious illnesses?

Why do you make careless Facebook statuses about disabilities?

And why do you "like" those Facebook statues that are belittling another person?

I don't understand. But I've tried to put myself in your shoes. Can I try to understand you, and then try to help you understand me? Okay.

I think you may laugh because you are uncomfortable. You don't know what to do with your classmate, and so you make a joke to cover the awkwardness.

Maybe you don't know the meaning of the word "epilepsy"...so you use it as a teasing nickname unaware of what it really means, and how it affects people's lives.

Maybe you've never known anyone with a special need before, and so when you make these comments  you aren't doing them out of malice, but purely out of a desire to be funny...just not realizing the entirety of your statements.

Or maybe you really are trying to be hurtful.

I just don't know.


Let me try to explain how I feel to you, because I'm sure you are thinking that I am a crazy over-sensitive girl at this point.

 If you're making a joke about disabilities, I'm pretty sure you don't have a disability yourself. So you can't possibly imagine what it is like to have one.
You can't imagine what it is like for a Deaf person to spend years in therapy learning to speak.

You can't imagine what it is like to learn your way around your world without your sight to guide you.

I know you can't imagine what it is like to be in a wheelchair all the time.

You don't know how it feels to go into an operation unsure if you will live through it.

Can you imagine going through these things, and then having to hear people make cruel jokes? I can't.


Look, I am a teenager, too. So I understand how it is to goof off with your friends and not even notice who's listening. I realize, too, that this probably accounts for 80% of the rude comments teenagers make about disabilities.


But there may be a mom whose child was recently diagnosed with a disability sitting right next to you as you laugh about that kid in your school. And you, in that one, careless moment, have confirmed all of the fears she has for her precious little child.

Our words have consequences.

I'm writing this post out of a deep pain in my heart from so many comments that have been made around me even just over the past six months.

Please think through your words before you post them to Facebook. Don't make a joke merely because you don't understand. Think about how it might look to someone who is walking that journey.


Thumper from the Disney movie Bambi gives the greatest advice ever..."If you can't say anything nice, don't say anything at all!"

Your Blogger,
 Claire










   
 

The little things

"But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us.  We are hard pressed on every side, but not crushed; perplexed, but not in despair;  persecuted,but not abandoned; struck down, but not destroyed." ~2 Corinthians 4:7-9 

I love this passage. Lately I've been struggling with, as Roger Arnett would say, the "great burden of grief that rests upon this world".  Coming right out of Benjamin's recovery and my mission trip to Argentina, I've had this 'great burden' on the forefront of my mind and heart. 

This world is a broken, bleeding mess. It's painful to be here, and everyone who resides on planet earth feels that pain at some point or other in their lives. 

I wish that weren't true, but it is. And so what can we do? There's no solution to the problem of pain. No matter how hard we work someone will always be crying, somewhere in the world. 

There is something we can do, though. 

We can love each other through the struggles. We can walk with one another through the hard times. There's nothing better to do, in my opinion. 

This surgery and recovery season there have been many dear ones who have supported us. Sent messages of encouragement during the six months of stress and fear prior to Benjamin's surgery...ate our dozens of cookies that spelled out 'joy' in our effort to keep our joy...brought meals...and called. Called. I have to say, out of everything people did this season, the one that made the biggest impact to me was the calls. Those friends who called during Benjamin's recovery and hospitalization were such gifts. One friend in particular called the day he came home from the hospital. This is one of the hardest days for me, personally, because although I'm over the moon thrilled that we are all together again, it's usually one of the most painful days for Benjamin/Mason. And that's hard. Really hard. 

So my friend called. And she got it. She knows what surgeries and recoveries are like, and so we were able to just talk about things I wouldn't be able to talk to any other friend about, and we laughed. And I walked in from that call feeling so refreshed. After just a phone call. It was a blessing. So thank you to those friends who called. 

(So if ever you have a friend who has surgery, or whose sibling has surgery, remember to reach out and make a phone call! )

But I'm kind of getting off track here...I was thinking about how we don't always support one another when we should. I wanted to tell that story to show you an example of someone trying to make the burden (going back to the great burden of grief here! ;)) lighter to carry. I think it is truly a beautiful thing when we consider the trials others could be going through, and so decide to lift them up instead of tearing them down. I think that is part of what makes the difference between us being perplexed, but not in despair... persecuted but not abandoned...struck down but not destroyed. 

It takes effort to do that, though. You have to make an effort to be conscientious to the people around you. I went on my mission trip to Argentina pretty raw, I know. Most of the trip was wonderful and refreshing, truly it was. But there were moments that were tough. I knew going into it that leaving the country with a group of high schoolers right after Benjamin's surgery might make for some difficult moments because, well, I'm  really really really sensitive after surgeries. And so some sarcastic quips had me in tears. Seriously. Jokes, teasing remarks that were funny to everyone else, made me cry. I know no one meant to be malicious. They couldn't have known that I was emotionally exhausted from six months of worry. But it did hurt. I'm sure that I, too, have been guilty of not paying attention to the emotions of others before. I think we all need to start making a big effort to do so. It would change the world. 

What else makes a difference, gives us hope to keep going despite the trials? 

^" Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." ~2 Corinthians 4:16-18

That's what gives us hope. What we see here--the pain, tears, sadness--this is temporary. So let's not lose heart. And let's try to encourage others to not lose heart, as well. 

Your Blogger,

 Claire

My thoughts

My brothers and I have all gotten the chance to speak to some of my uncle's ASU classes about disabilities. I spoke once on being the sibling, and the boys have continued to go back to the classroom even after Uncle Len was graduated. In these classes, the boys talk about their CP and share about their experiences (good and bad) in public school, to hopefully encourage these future educators and give them knowledge for when they have special needs students in the classroom. Oftentimes these students ask personal questions, some goofy, some serious. One that's often asked of them goes along the lines of "If you could get rid of your disability, would you?" 

I really don't like this question. It makes me angry because there is no possibility of ever getting rid of it in this life, and so why dwell on that fact? One of my all time favorite quotes is by Corrie ten Boom and it says "There are no what-ifs in God's Kingdom".  The boys have CP, there's no way to reverse that fact, let's move on and not focus on what could have been. 

Sitting in the back of the classroom, I hear that question and think about what a physical and emotional drain Cerebral Palsy is to my parents. And I think about my brothers' pain after surgeries. And I want to scream at the back of that head who asked the question "Well what do YOU think?!? YEAH we would get rid of it! DUH! Did you not just listen to all of their struggles in public school? USE YOUR BRAIN!" 

But that isn't how my brothers answer the question. They say no, they wouldn't change it, because it's helped shape them into who they are. 

What? That wasn't my answer. That's not what I'm thinking. Don't they see how stupid the question is? Aren't they as angry as I am? No? They aren't? hmm....

Deep down in my heart, I agree with my brothers. Trials make you stronger, and because of CP I think we are closer knit as a family. We know what it's like to go through real stuff, and so we stick together. We would be completely different if CP wasn't a part of our lives. Life would be easier, there would be no surgeries to go through, sure, but we would have missed out on a lot. We would probably have never met many of our dear friends, I probably wouldn't have learned sign language or started volunteering, the boys may have never gotten involved in theater, and we probably would have never been home schooled. I think of this and I, too, begin to feel thankful for it and how it has impacted our lives.

My devotion today spoke to my heart on this issue and is, in fact, why I brought this story up. I'll give you an excerpt of the part that touched my heart: 

"Do not long for the absence of problems in your life. That is an unrealistic goal since in this world you will have trouble...Begin each day anticipating problems, asking Me to equip you for whatever difficulties you will encounter. The best equipping is my living Presence, My hand that never lets go of yours...Take a lighthearted view of trouble, seeing it as a challenge that you and I together can handle. Remember that I am on your side, and I have overcome the world." ~From Jesus Calling 

Especially during this season before surgery, the moments where I feel upset and frustrated with the problems in life are more than the moments I'm thankful for them. This devotion encouraged me, though, that even in the middle of the struggle, God is still right there, holding on to our hand. Even when we try to wiggle free of His grasp, complaining about our situation, He holds on and promises that someday things will be okay. What an immense blessing.

Thanks for listening. Your Blogger,

 Claire

Finding joy

Dear Readers,

  Ever since December, when Benjamin had hand surgery and we found out about the surgery this summer, the theme of our house has been "joy". We made cookies that spelled out the word, and every time we found ourselves feeling upset and not in a celebratory mood, we made more cookies. Haha okay, so we didn't bake EVERY time we felt upset. Just a lot of the time. :) 

But actually, for as long as I can remember, anytime I've felt upset, Mom has reminded me that joy is a choice. It's impossible to always feel joy. You have to make a conscious effort to do so. And although by nature I'm kind of a glass-half-full kind of person, it doesn't take much to steal my joy. Surgeries snatch it away in an instant. 

So this season we have all made an effort to find joy...

I've found that where thankfulness is, joy is, also. And so about once a month I've been writing down a list of things I'm thankful for in my journal, in an effort to find, and keep, that joy. This month I thought I'd share a few on here. :) 

The small things are really my favorite things. I'm fairly certain going to the grocery store with Mom and Cate has been on my list before, haha. But today my first thing is going to be...

1.) Having a birthday party. I didn't really want to have one, but my brothers did, and so we had one...and I am thankful that we did! I really enjoyed it and still laugh to think of it. It was a lot of  fun to dress up and see dear friends. 

2.) Seeing Berkeley listed on the 'My Family Found Me' page on Reece's Rainbow...she is one of my favorite little angels listed and seeing she had a family made my heart smile! 

3.) Going on a field trip to the Japanese friendship gardens on our actual birthday...it was actually a  very funny experience. We wanted to be at the hospital in time to have lunch with Dad, but on the way to the gardens we were talking on Mom's phone. Henceforth, we had no directions. Sooo I told Mom to turn when I saw a building that looked kind of like it could be the Japanese friendship gardens, and got us lost. Haha! We ended up getting to spend a good 45 minutes there before getting to the hospital, though, so that was good. :) I actually really loved getting to drive around trying to find it, hehe (I told you I loved the small things, remember? :)) And lunch with Dad was wonderful, too. 

4.) (this will be my last one since it is the fourth month of the year, after all...)

Getting to spend time with my sweet friend yesterday. One of the main reasons I dislike parties is because I feel as if I only get about five minutes with everyone. So although I loved getting to see her last Saturday at our party, it was even more of  a treat to get to spend the day catching up yesterday! Sweet friends make life so much more joyful, and yesterday was such a gift. 

What are four things that you are thankful for this month? 

"Those who sow in tears
    shall reap with shouts of joy!
 He who goes out weeping,
    bearing the seed for sowing,
shall come home with shouts of joy,
    bringing his sheaves with him." ~Psalm 126:5-6

I hope you have a joy-filled May. Your blogger,

 Claire