The Things That Come Up

We haven't really been a 'summer activities' kind of family. None of the boys seem too interested in team sports and, other than a few swimming lessons so the boys wouldn't panic in water, summer camp and VBS, we've found our own fun to do in the warm months.

This year Caedmon insisted he wanted to find a theater class to take. The insistence is usually what motivates me to find what one of my kids is looking for. He reminded me for two weeks, after I talked to his dad, while we were figuring out the budget and what we could afford, and when I forgot because of all the end of school busyness.

Because of his motivation, I finally got on line and actually registered him for a class. He was so very thrilled he went to school the next day, in the middle of May, and invited every one of his friends to come on the last day to see him in a play, in July. He wanted to know what part he would get, if he would have lines, if he would have a main role. I tried to help him see that since this was his very first time in theater, he may not get a main role but whatever he got we'd be so proud of him.

And then I had to build up the motivation to do what every parent of a kid with special needs has to do, be the advocate. The longer I sat on it, the more I dreaded contacting the person in charge of the class. I started to be sure that they were going to be upset that he had special needs, that they would see it as too much to deal with and would ask that we withdraw him. My anxiety, it seems, knows no bounds when it comes to worst case scenarios.

It took me a month to finally send the email. And really all I needed to explain was that he needed help at lunchtime so his dad or I would be coming in to help him at that time. The person at the theater couldn't have been kinder and replied quickly and enthusiastically that he would be welcomed and please let them know if he needs any other accommodations.

All the build-up now seems so ridiculous really. I think it comes from reading way too many stories where people were unkind or downright cruel to people with disabilities. But in my experience we have never run across that. People have always been kind, even just to smile and say 'hello' to my boys. Just another reminder that advocating can be hard but it is so worth it. I cannot wait to see Caedmon on stage for the first time and know that the people at the theater are aware and positive about him being there!

10 Years!

10 years ago tonight, I was lying all alone on a hospital bed. My husband had gone home to be with our oldest. My newly-born youngest was lying in a NICU in a different hospital 1/2 of a mile away. I was crying. My heart was hurting. I felt so very alone and so very guilty that my baby was in an incubator with no one to hold him, no familiar voices to hear, no homey feelings of anything of family.

When we had taken a tour of the hospital a month before, they had assured me that they had a closed-circuit television system for moms in my circumstances. They assured me that whenever I wanted to see my baby, I had only to turn on the tv and dial in a station that only I could see. It would be linked to a camera above my baby's bed and I would be able to watch him anytime.

So, through my tears, I turned the tv on, dialed in the station and . . . nothing . . . static. I called the nurse's station and explained the situation. They assured me a technician would come as soon as possible and get it all set up.

So I waited.

And waited.

And WAITED.

It took 2 hours. And when the technician came, he told me there was nothing he could do. The system was down.

I felt so desperate.

I called the nurse's station again, as I was told.

Could someone please come to transport me to the Children's Hospital? As soon as they can, I was told.

So I waited.

And waited.

And WAITED.

After an hour, I decided it was ridiculous. I got myself out of bed. And I walked the 1/2 mile, through the maze of halls and elevators and the tunnel linking the hospitals together, to go find my baby. I remember feeling like I was breaking out of a jail, wondering if anyone thought it was odd to see a woman in a hospital gown (covered by a robe, I wasn't completely insane) waddling along and if anyone would try to stop me. Nobody did.

I was in so much pain and I was so tired by the time I got to his bedside. And I was all kinds of emotional. But to be able to touch his hand, and look at him, and talk to him, that was all I needed. I sat there for a long, long time. Until my head started to droop and I knew I needed to get some rest.

I can't remember if anyone took me back to my room. I don't really remember anything else of that night. I know the next morning they came to say I was discharged. I remember being so relieved to see my husband and have him push me in a wheelchair down the long corridors. It was the hardest thing ever to kiss Caedmon goodbye, get in the car without him, and head home. Lying in bed with him tonight, hearing him tell me he loves me, getting one last hug from him before I left his room, it feels like a world away.

Happy birthday, kiddo. We have been through a lot, you and I. So thankful we get to be on this journey together. So thankful I can go in your room anytime I want and see your sweet face.

Care

Something that is becoming painfully obvious to me as the years go by is that as the years go by I am more and more tired. Parenting kids with special needs takes energy. At first there is a natural energy that comes with having a new baby, then an older baby, and a toddler and the regular + a little more activity that comes with parenting that age group. But then your child hits the school years, and instead of your child becoming more and more independent and less and less in need of you, there is the same amount of energy needed, sometimes more depending on the mobility of your child and how much they have grown, to continue to give them the cares they need.

And you know what this means? It means that there is more and more of a reason for you to take care of yourself. To have hobbies and activities away from your children that can feed you and energize you.

It also means that it is harder and harder to get away because it takes more and more energy to get yourself out to do something.

I remember noticing the mothers of older children when I would take my babies to medical appointments. I would note how tired they looked, how it seemed like they needed a haircut or a change of clothes or a long walk. I wanted to know what made them look so tired and why it was that they didn't seem to take care of themselves.

Now I get it.

I don't think it's inevitable. Not every parent I've met fits into the category I observed what seems like so long ago. And maybe those parents didn't either, I just saw them on a bad day. But the point is, I feel now like they appeared to me back then.

And I don't like it.

I want to care about myself. I want to have a bounce in my step and a goal I'm working toward and a life outside of my kids and work.

It is not selfish, it is healthy.

I have to tell myself that because 1) it's true and 2) our society has some pretty messed up ideas of what makes a good parent and 3) we buy in to too many lies about what constitutes a happy family.

A new day has just started as I'm typing these words. So silly to wait for New Year's Day to decide to change things for yourself. So I am deciding for today to do something that gives me joy, even if it's putting on a song I like and dancing in the kitchen. And I will, for today, do something good for my body, like 10 push-ups and 10 lunges. And I will, just for today, take intentional time to focus on God and His wisdom and power. And I will connect with one adult, even if it's just a text telling them how important they are to me. And I will be thankful for all I have, just for today.

Transitions

After a lot of thought, research, time spent in various DCD (Developmental and Cognitive Delays) classrooms across our district as a substitute teacher and substitute para, meetings with Asher's team at his school, seeing his general ed class time dwindle to a measly 30 minutes a day, with an hour of special classes, no recess time with his peers, shortage of staff, and behavioral issues emerging, Adam and I made the difficult decision to home school Asher. He will join our church school for lunch times and recess times, field trips, music classes and art classes as well as getting involved with local homeschooling groups and GiGi's Playhouse.

Thursday was his first day at home. I brought him to our church school for lunch and recess. He picked a seat next to Caedmon. I gave them space and sat at the end of the table. Watching him from a distance as he looked around and took in this unfamiliar position with familiar kids and a familiar setting, was joy for me. I didn't realize until that moment how much pent up tension I had been holding in every time I sent him to school.

Between lunch and recess, all the kids in the school have chores to do, ranging from vacuuming to watering plants, getting the mail to taking out the trash. One of the second graders asked Asher if he would like to help him with his chore, emptying class trash cans into a larger trash can. 'Sure!' Asher said. They each picked up a trash can and Asher followed him to see what to do next. A few minutes later they were back, Asher was beaming, no adults had to follow him or check up on him, he was able to be independent and autonomous! Outside of home, that was really a first for him. He then helped pick up paper and pencils off the floor and stack chairs so another team could vacuum the classroom. It was awesome to watch him dive right in to whatever was asked of him.

Outside, he played! He felt comfortable enough to ask for a ball! Having gone to recess with him several times, I can say with confidence that he never once got to play with a ball at his public school. This is because there are limited balls and by the time his class would get out for recess at the same time another grade was out, all the balls would be taken. And I never really saw him play. He would just wander around the playground until it was time to go in.

It just was right. It was the right place for him to be.

And my time subbing has not been a waste. The reason I didn't home school him before was I felt a total lack of confidence that I would do a good job. That he would not get everything he needs. But after observing what is done in the center based classrooms, I know I can do a great job and work with exactly what he needs. And the opportunity for him to be a part of a school community, really a school family, who will embrace him, accept him, include him, is priceless!

I am so excited for this journey to start!

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.

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. 

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.