Friday, August 31, 2018

Cue the Balloons

I don't know if it's one person's job or whether it's some kind of magical, automated thing, but you know that moment after a huge victory? When people are cheering and balloons drop from the sky as if from heaven and everyone is smiling and laughing and existing in a sea of delighted chaos?

How fun would it be to be the person who makes that happen?

Who waits for the cue and releases celebration into the world.

Today was my middle son's last day of camp. It started 3 days into summer and ended 3 days before the new school year.

Camp, my friends, was a risk. Last year came with a lot of curveballs. A lot of failures. New diagnoses. New therapists. New medicines and supplements. LOTS of new grey hairs. And heading into the summer, my son hadn't had a lot of successes to tuck into his belt. It had been a very hard spring.

His therapist, however, had insisted he was ready for camp. That he could DO this. And not just do or survive it, but love it.

And friends?

Today, I am seizing that job that sounds oh-so-fun and releasing a storm of metaphorical balloons into our lives.

Today, he celebrated the last day of camp with a party. He brought in his own safe cake and special chips and lime juice so he could partake of the kona ice truck fun. He smiled. He laughed. He said goodbye at the door to his dad without screaming or panicking.

And when I picked him up three hours later, he ran into my arms and told me all about the party. He hugged his teacher goodbye and thanked her. And she told me he had been a delight. A DELIGHT. In fact, we had not one phone call home the whole summer. Not only did he survive, he thrived.

I handed him a little gift to celebrate - a pack of water balloons - and we talked the whole way home about how much fun he had had. About the friends he had made. And the beautiful women who had taught him and laughed with him and sang and danced with him. Who had helped him have success after success.

And later on, he filled every one of those balloons and had his own little party.




And it wasn't just camp. As a sweet little four year old, he joined the swim team again this season and worked up to racing. He earned ribbons. His amazing coaches pushed him and loved on him. He had the large majority of the team and not a few parents waiting at the end of the lane in his very first 25 meter freestyle race cheering their heads off to make sure he made it. He felt like he was a part of something bigger and it made him so very happy. We even made him a swim team corkboard just like his big brother and he is so very proud of it and can't wait to fill it with more next season. He loves for me to read him his little awards that his coaches wrote for him and we laugh together about how true they are.



Cue the balloons.

We fight hard for victories around here. They don't always come often and they don't ever come easy. But my beautiful boy who had one of the hardest years of his life had his best summer yet.

I am so stinking proud of him.

He has worked his little patootie off with his therapists. And he is ready and excited for school next week. Turns out his amazing teacher this summer will be his teacher this fall so his transition (and MAN are transitions rough for him) is almost nonexistent this Tuesday. Look at God, friends.

We don't know how this fall will go. We have a lot of hope that his successes will continue. We know there will be good days and really hard ones.

But today, as his mama, I get to be the one who releases the celebration. And what a joy it is!

Friday, July 6, 2018

Sanity Savers #2: The Routine Checklists

About a month ago, I wrote a very well-intentioned post about my intentions to write a series on some Sanity Savers around here. 

Then, you know, life. End of school. More appointments. Etc. 

I did manage to get that first one written about the visual timer but my hope is that now we are setting into a (so far) successful summer rhythm, I can finish the job I started.

In that spirit, here is entry two: the Routine Checklists.

When you have a bunch of kids and one of them has a LOT to keep track of, you need a way to make sure you don't forget any part of the routine. I am sure there are amazing apps or programs that can do it- but I am a visual person and I love paper and am addicted to my laminater- so I make lists. And display them prominently. 

It seems so silly and simple. But it honestly works for us.

I write a checklist with boxes to check, print it, laminate it and display it on the side of our refrigerator because the kitchen is most definitely the hub of our family activity.

Refrigerator 
My oldest son is 11 and has increasing levels of responsibility around here. We believe strongly in kids having a sense of ownership in their home and family - a deep sense that they are supposed to joyfully contribute to the functionality of the household. He will be ready for college when the time comes, we hope, because he has learned he has a role in keeping not just himself functioning, but his family, too. (And yes, he wants to go to college and he's working towards that. That is not just his crazy mom assuming that future for him.) 

This is his morning list (and he has a separate evening list) and he can handle it:



My middle son needs a number of things to happen in the first hour of his awake time in the day to give him the best shot at a successful morning. And yes, his list includes chores, too. Giving kids responsibility is a positive thing and for my incredibly independent four year-old, it is a way for us to give him trust, independence and a positive sense of accomplishment. 

Here's his list:



I also just enjoy having a to-do list that I can erase and start over each day. Saves paper and again, I know I could do this on a phone, but I LOVE using markers to make those satisfying check marks. Call me a nerd. I embrace it. 

Looks like this:


Does this save my sanity? Yep. Saves the time of wondering if I have done everything I needed to do for my boys in the morning. Gives them a clear expectation of what needs to happen before they leave the house for school or camp. Do we tweak the lists in different seasons? Of course! Does the laminater get used all the time? Happily! 

It's a simple system but it works for us. 

What kind of system could help YOU stay on top of that morning routine?

Friday, June 8, 2018

The Full Time Job

At some point this spring, I remember a moment when my husband looked me dead in the eye and told me "you have a full time job right now, you know that?"

He wasn't referring to motherhood.

He was referring to advocacy.

To the hours upon hours of research and phone calls and office visits and emails and texts and thoughts and strategies and desperate prayers that go into trying to find answers for a special needs child.

And as my son sleeps upstairs right now, I have spent the entirety of his naptime, yet again, on the phone fighting with doctors. Cursing insurance companies and how little they give a rip about kids like mine. Trying not to lose hope that someone, anyone might be able to actually help us.

I am just trying to get him from one day to the next knowing that there is no hotline to call when your child is destroying his room. When he's been screaming for five hours straight. Again. When your husband can't even go to work because you have more than one child and your other kids need to be parented while the other child needs one-on-one parenting every waking hour. And the other kids need not just to be supervised but reassured of your love, that this will get better somehow. To be given quiet and peace and fun opportunities that the other child simple cannot handle.

Friends, the life of a special needs parent is completely exhausting. We can't just "call a babysitter" and take a break. Self care? Really? The next person who tells me to take care of myself needs to offer to figure out a way to watch my son so I can actually do it. So my husband can actually do it. Right now the only way we can is after he's in bed at night. And by 8 pm, WE HAVE NOTHING LEFT TO CARE FOR. Really, it's just bedtime. But oh wait...there is the house to clean and the laundry to do and the bills to pay because nothing else can get done during the day.

Friends, I don't write this to ask for sympathy or advice or answers. I am literally turning over every stone I can imagine to get answers and help and I have fellow warrior mamas cheering me on. Our mental health system is deeply broken. Our insurance system is deeply broken. I honestly don't know if we'll ever find the right answers but I also can't stop fighting.

I am writing this because there is probably a parent in your life who is drowning. Who spends all day, every day searching, praying, pleading for answers and help and ending the day exhausted and alone again. And, most likely, consumed by guilt for what they can't give their other children.

Can you help? Can you drop off a meal for them? Can you take the other kids somewhere fun? Or figure out a way to watch their struggling child, even if it means it might be incredibly unpleasant and risky for you?

I had literally no idea how hard parenting could be until I had a child who didn't fit the "norms." I had no idea how all-consuming it could be, the strain it could put on a marriage, the ways it could reduce you to hopeless despair. I wish I had done more for my friends who were IN IT before I was but I just didn't know what or how to do it and I didn't fully understand how exhausted they were.

Friends, will you take a risk this week and ask a mom who is crying in her car what you can do to help? Or just surprise that dad who is totally overwhelmed with his favorite treat to eat once those kids are finally in bed?

This is a deeply lonely struggle, and every little reminder that someone sees, cares and isn't judging us is an extra heartbeat for our day.