Wednesday, May 16, 2018

Also True

The night after I wrote my last stormy post, Asher climbed into bed, in the mid-dark of the night, cuddled up as close as he possibly could, wrapped his arm around my neck, said, 'Hi Mommy. Mommy, hi.' in the incredibly sweet, sleepy way he has of saying it that makes my heart get all warm and melty soft, and fell asleep. In the morning he gave me a good, long hug as if to say, 'I was mad at you last night, and I know you were mad at me. But we're okay.'

My heart rebuked me. How could I have been in such a dark place last night?! Look at the joy I have at my fingertips! Look at this amazing life!

Today I was driving around with Damek and he turned the cd player on. Adam had popped in an old cd he had found, something I loved. A song came on I hadn't even remembered existed and it just hit so hard. It's called Family Man, by Andrew Peterson. If you want to listen to the whole thing, you can find it here . It's all about how becoming a family man is so different than the life he had thought he wanted. And how beautiful the differences are. One stanza I needed to listen to over and over. It says:

And everything I had to lose,
Came back a thousand times in you
You fill me up with love
Fill me up with love
And you help me stand
'Cause I am a family man

Gah! It's so true! That selfish girl inside me I've always battled with, she likes to rear her head sometimes. But the fact is, my life is so much richer because of all I've had to let go. And I have to tell her:

This was not my plan
It's so much better than

Tonight I took Asher to small group again. I didn't want to. I remembered how hard last week was and I remembered all the mistakes I made and how impatient and tired I was and how tired I was this week and I thought, 'Let's just not go there again.' But Asher looked at me with big tears welling up in his eyes after Adam and the big boys left. And he said to me, with his voice trembling, 'Go church? Go church, see Daddy?' And I knew, deep inside, that the reason I didn't want to go was because of my own stuff, not because it would be best for Asher, so I said, 'Sure, Buddy. We'll go to church.'

He was so happy he could not stop dancing for the first 10 minutes of getting there. He only lasted a few minutes into the kids' worship talk, he's been in school all day after all, but he wanted to stay. So, we went to the younger kids' room early and he happily colored until everyone else got there. The younger kids have a married couple who run their activities after the worship thought. Asher adopted the husband, sat right next to him, talked to him, showed him his artwork, and was happy as a clam. I stepped outside but hung around in case he got too tired to be a part of the program anymore but the one time I stepped in to check on him, he told me to 'Go Mommy!' and the leaders told me they loved him so much they were going to bring him home. I felt myself relaxing for the first time all night.

On the way home I was listening to an interview with a comedian I really like and she was talking about how her life has changed since getting married and having kids.

"I heard all these people talking about how making a commitment is so difficult because there are so many things you have to give up in order to get married. But that's really confusing to me because I have found that since getting married and having my kids, I have so much more than I had before. I feel like I have made it and that there is opportunity for even more, and I'm not talking about my career."

Bam! That's it!

The truth is that times of darkness will come on me and you, and we can express it but we don't have to hold onto it. And we can find the light again and we can realize what a gift we have been given.


Wednesday, May 9, 2018

Truth

There are times it is not easy to be on this journey. There are times when I would like to get off the train, take a hike into the woods, by myself. There are times when I can't find any Pollyanna-twist and the sun is not shining. 

There are times when I want to tell the truth about how I'm feeling and how hard things are but there are so few who get it. 

There are times when I have told people who hear my darkness and feel free to share the negativity they've been holding in and now feel they have permission to let out. They make my life sound like some horror movie from the 70's and I think, "Holy crap! Is THAT what you think?" And rather than getting to work through my own dark, I have to try to prove to them how much lighter it is than the darkness they're spewing.

There are times when I have told others who feel the need to MAKE me feel better without allowing me to work through the hard feelings I'm having. "Your life can't be that bad!" they seem to say, "I spent that time in college working with people with disabilities and I LOVED it!" And rather than being given permission to work through the hardness of life at the moment, I feel forced to fake the smile and the enthusiasm. 

But if the truth were told, there are times. 

There are times when I have had to chase my child down the street after he tries to "Go see Daddy" because Daddy is the ONLY one he wants and he is not afraid to tell me how much he does not like me. There are times when he starts to throw a major fit in the middle of the street. There are times when I have had to muscle him into our house because he will not calm down and will not choose to be safe. There are times when he throws valuable things down the stairs in his rage and I shut him in his room and we both sob on our own sides of the door. There are times when I ask God, "When is this supposed to get better?!" because I have been dealing with this new phase of absolute noncompliance and stubbornness and anger for months now and I feel done. There are times when he calms down enough to let me hold him and rock with him while he cries and cries for what seems like 10 hours straight. There are times when I cry and cry with him. There are times when I do not much like where my life is at and I can't see even a pinprick of light at the end of this seemingly never-ending tunnel. There are times when I feel envy climbing up my back like an invasive species. Envy for those whose kids are normal, who have no reason to see a doctor except for that sticker of approval, "This one's fine". Envy that there are people in the world who can plan spontaneous adventures with no thought of bathrooms or accessibility or timing or gear, all the gear. 

There are times when I feel guilty even posting this because what if that one expecting parent finds this post and decides it's all too much and they shouldn't have that baby. Oh, the pressure! To always be the advocate and the good mom and the one who has it all together! Well, tonight I do not. Tonight I am just willing to speak the truth of where I am and to cry some tears and to pray for the strength to get through one more day. 

Friday, March 9, 2018

Wrong Focus

Asher's state-required psyc eval and IQ test came in the mail a few days ago. Adam asked me if I wanted to hear what was in it. I said, 'Not today.' Because we know what's going to be in it. We know it's going to highlight how far away from typical he is. We know it will focus on all the quantifiable ways he is less than his normally developing peers. Less than. After all, that is what we specialize in in our quantifiable tests, exams, evaluations. Finding who is less than, who is weakest. Who needs extra. We know that people with qualified book learning watched our son and checked all the book-specified qualities and found him lacking. Sometimes finding the lacking, giving the extra can be really helpful. Sometimes those lacking reading or writing or math skills can make great improvements with a little or a lot extra. But sometimes the findings just glare at you, telling you that this is your child and there is no place for him because he will never be enough. He will never live up to the productivity level our society deems worthy.

I was thinking about this as I made Asher's lunch. I angrily shoved a bite into my mouth and popped the rest in the microwave, just as Asher came running around the corner, shouting, 'Mom! Mess! Big mess!' Which means one thing, Asher made a huge mess somewhere and is coming to humbly show me his work and apologize, though 9 times out of 10 lately he refuses to help clean it. I stormed down the hall after him, in a much worse mood because of my own thoughts, and prepared to really let him have it. I am so sick of cleaning up these massive avalanches he causes! And right when I opened my mouth to tell him how I feel about this mound of junk he's dumped all together, I choke on the bite of food in my mouth. And all I can do is cough and cough and cough, so hard I almost throw up because there is a piece lodged right at the opening of my windpipe.

Asher jumps into action. 'You okay, Mommy?!' he calls as he runs down the hall. I hear water turning on in the kitchen and seconds later he comes running back with a cup of water with a straw in it. He gently hands me the cup and starts patting my back as I gratefully drink it.

I look at this boy, with tears in my eyes, partially because I had just been coughing my lungs up but mostly because I just love him. Adam had shared with me the last line of the report, 'Asher is a the same level as a 3 or 4 year old.' They don't know. They don't know his amazing emotional intelligence, how can you quantify that? They don't know how many ways he enriches this house, all the times he causes every person to slow down and choose kindness. How can you make money off of that? They don't know the love that sparkles off of him, how he makes so many smile and cheer. There is no way to put that on a checklist.

I think the school I am in with Asher is one that teaches me how to say, 'Whatever!' to the world of checklists, productivity, bottom lines. There is so much more to people than the paycheck they earn, the grades they get, and the college they attend or don't. That kid! He drives me crazy some days. He makes huge messes. He brightens my day every morning with a hug, a kiss, and a 'Good MORNing, Mommy!' And he is so much, much more than a number on a paper.


Sunday, July 2, 2017

The Best

Our car is dead.

The one we bought when Caedmon was born. The cute, little, micro, minivan. The one with the bumpersticker on the back that my friend from high school had made especially for us when Asher was born. The one that has carried us on every family adventure over the last 8 years. The one we just said is getting a little tight as the boys are growing but if it could just hold out a few years more, just until we pay off the car loan on the other car . . .

Nope.

It's dead.

So, we put off stressing out about it over the Sabbath. About how to rearrange all the therapy appointments and how to get me to work and Asher to school on time when we need to get there only a few minutes apart but 20 miles away. About how to come through on the promise of Adam taking Damek on a special trip this year that he turns 12.

That evening Adam was doing dishes in the kitchen and I was walking around the backyard picking up toys because we were expecting rain. I noticed a flash of purple off to the side of the yard, over behind the trampoline. I went to investigate and found violas blooming, in the middle of grass that gets mowed at least once a week. Violas! Purple violas! Adam's favorite flowers! So I called him out and walked him over there. And we sat for a while marveling at this perfect plant that somehow was blooming in our yard and we had never noticed it before and here it was, right at this moment tonight.

And I cried a little and said, 'That right there is because God loves us!'

And on Sabbath afternoon the topic inevitably came up as we were sitting and chatting with our friends. Because a car dying is a pretty big deal for a lot of us and everyone could commiserate with our situation. And one friend said, 'I want you to use my car.' Even though it would be an inconvenience for her. And another, and very new, friend said, 'We have a car sitting in our garage. You are welcome to use it. It has a cracked windshield, I'm sorry.'

And I said, 'Oh my word! I have driven with many cracked windshields! I can do it again! Thank you!'

And I cried a bit as we drove home. Because of friends. Because of unselfishness. Because of God's great love.

And then the friends showed up at our house this evening to drop off the vehicle and hand us the keys and instead of an old, dusty, cracked car, they parked their very newest, nicest family car in our driveway. And we said, 'Wait a minute! What about the car with the windshield?! That one is totally fine!' And they said something about how they forgot they had it scheduled to get the windshield replaced so they needed to keep that one and we could use this one.

And all night long I have been tearing up thinking about how they brought us their best. The BEST! And how proud I feel when I give a meager bit sometimes, the bottom of the barrel, some when I have plenty and it won't hurt. And I can't quite understand that kind of selflessness but I am trying so hard. And I know it is exactly what God gives all the time and He is giving us this amazing lesson wrapped up in these beautiful people who, honestly, don't know us that well but are willing to offer us the very best they can. And I want so much to BE that kind of person. Who will offer the best of myself no matter how hard it is.

Wednesday, April 26, 2017

Educational Fears

This morning was Asher's transition meeting for moving into Kindergarten. I was able to meet his general ed teacher, his special ed teacher, the special ed coordinator for his new school, his new speech therapist and his new occupational therapist. His current teacher and his current speech therapist were there as well.

I was terrified going in. Scared I would have to get firm and tell these professional educators that their plan was not going to work for my child, that they need to go back to the drawing board, that they didn't know my child and they needed to listen to me.

I shouldn't have feared.

In fact, I didn't even need to show up to the meeting.

Asher's current teacher, Alli, was the one to go on and on about how wonderful Asher is, what a great addition he is to any classroom, what a helper he is. 'In 13 years of teaching,' she said, 'I have never seen such a caring, sweet, loving boy. I don't know what I'm going to do without him!'

The team listened closely to my concerns that Asher be included as much as possible in the general classroom and be given as much interaction as possible with his typically developing peers. They took notes. They gave me their email addresses in case any questions came up during the summer break. They gave me a book to read to Asher with pictures of the school and descriptions of everything so it wouldn't be so scary and foreign to either of us next September. They gave me examples of how they foster a community environment where Asher will be part of the class, friends with his classmates, rather than just a body off to the side. They told me that they are always tweaking plans and are happy to try new things to see if Asher is able to step up to the challenge.

In other words, they were a prayer answered. Exactly the team I would want working for and with my boy. I am so excited to see how he develops as a person in the coming year. I am in awe of how God has put us right where we need to be for Asher to get this help.

I read and hear so many horror stories of parents going in to meetings at their schools and having to convince educators that their child is worthy of getting an education along with their peers. It always makes me nervous about going in for any meeting with a new school, a transition, as my kids get older. And yet, every time I have been pleasantly surprised at how wonderful the educators are, how easy to talk to, how apparent it is that we are on the same page. I'm not sure how I have gotten so lucky when I know so many others have not. I am just grateful for the positivity and determined to support any action that will make all schools be such welcoming places to all children.

One thing I have learned on this journey is how different every state, even every county is in medical care, educational supports, and assistance for people with disabilities. How can this be possible in a country as wealthy and successful as ours?! This should not be! This is why I support federal oversight. Leaving the growth and development of our children up to individual states is a horrible gamble at a time when our children need advocates to become incredible adults. I cannot sit on my comfortable chair and enjoy Asher's growth, knowing that so many in my own country are struggling because of poorly funded schools and ill-equipped teachers. Think about it next time you vote on a referendum or to place a person in political office. It truly matters!

Thursday, April 20, 2017

To Surgery Or Not To Surgery

Every year Caedmon goes in to check all his functions. They check to see if he has lost anything from the previous year. They check to see if everything is healthy. They check for reflux. They check to see if things are working as they should. They check to see if he is happy with his current state of things.

Everything looks great! Everything is healthy and looking as it should.

This year we had to bring up the fact that Caedmon has experienced more issues between catheterizing. He takes medicine to try to tighten up the sphincter muscles. We wondered if his dosage needed to be increased. 'No,' the doctor assured us.

Our only option right now would be an irreversible surgery that would involve taking gristle off a muscle and wrapping it around the sphincter, making the sphincter more difficult to get through to cath, which would make it probable that he would want/need another surgery that would put a port through his belly button into his bladder, which could increase the likelihood of infections and also could affect the health of his bladder and kidneys.

So, choose your kid's adventure: possible occasional embarrassment/maintain health/no surgery or surgery/possibly decline in health/more chance of not standing out in a crowd in the wrong way.

I hate the irreversible decisions. I hate that there aren't any better options for him right now.

I love that he is so healthy. I love that he hasn't seemed phased by it all yet.

I want him to be able to accept what he has. I want all my kids to be able to accept what they have. I want me to be able to accept what I have. It's not really different. It's just different issues we are all trying to work through.

You are an amazing work of art, son. So you tinkle a little when you laugh or when you run or when you're nervous. You know what? A lot of people do that who have average, normally functioning bodies. You are not alone.

We think we are going to hold off on this decision and let Caedmon make it when he is older. We are so grateful for the option to wait. We are grateful that he is healthy and strong. We are grateful that in this one area we do not need to make a spur of the moment decision.

We are slowly walking in the path of 'being thankful in all circumstances' 1 Thessalonians 5:18. Some circumstances are easier to be thankful for than others.


Thursday, February 16, 2017

Oh! SINUSES!

Caedmon and I got sick.

A head cold.

Normally not a big deal, always thankful for a cold over a stomach flu. This one seemed to hold on for days and days and days. Stuffy noses, tired eyes, achy bodies, interrupted sleep. I rarely take medicine but actually broke down and begged Adam to bring some Sudafed home.

Glory! Hallelujah! I could sleep!

Caedmon seemed to be getting better too. There were less dirty tissues to search for around his bed in the mornings. He seemed to be sleeping better. He had more energy. We sent him back to school.

Then he started complaining about headaches. Oh dear Lord! As every parent of a child with hydrocephalus and a shunt understands, as soon as you hear the words, 'Mommy, my head hurts!' your stomach tightens and you start going through the mental list of shunt malfunction. Usually Caedmon gets headaches when he's coming down with a virus, not finishing up one, so it couldn't be that.

Oh no!

We've had this shunt since he was two months old, he just turned 8. He's due. I know some people who have had 10 or 20 shunt revisions in short life spans. The luck is turning!

We sent him to school. It seemed like the headaches were going away. I stopped by his school to take care of his needs, he looked miserable. He couldn't focus, couldn't sit still. 'My head hurts, Mom!'

I popped him in the car, called work to tell them I wouldn't be in, called Adam for the neuro's number he has saved in his phone (yeah, I need to change that), brought Caedmon home to rest while we waited to hear from neuro. As I was trying to make him comfortable, he looked at me with tears in his eyes and asked, 'Mom, am I dying?'

Sucker punch to the gut.

I assured him that we would figure out what was going on and take care of it and he would be better soon.

I then had a brilliant thought that you probably already had in reading this: I needed Sudafed every day of the last 6 days, I never gave Caedmon any kind of decongestant. Ah ha!

It's been two solid days of giving him regular decongestant and this afternoon he finally said, 'Hey! My head doesn't hurt anymore!'

Okay. We can breathe again. Breathe into that knot in our stomachs. Let all the tension out of our necks. Allow God to give us that peace we've been pushing away.

Every time we go through this circus we learn a few more things, find more solid footing for the next time, learn a little more about Caedmon's body and how it operates and what it needs. By the time he's 40, we should be really, really good at this.