Toughing it out

The past few months here have been pretty challenging. In fact, at times, life has seemed just plain overwhelming. Work-wise I taught 3 courses this semester (ack!) as well as maintained a full studio practice (and I even wrote an article for a real media outlet!). Brian completed the final and most difficult semester of his MBA program while continuing to work full-time. We tried to jointly manage the caring-for-a-family- full-time gig; and it feels like we have spent days upon days in doctor's and therapist's appointments, evaluations, school meetings and site visits, we've even consulted with a special needs advocate for the first time to try to help us with some challenges we're facing in finding the right educational placement for Simon next year (he needs to switch schools because his current school does not have a special education program past kindergarten. I'll have a full break-down over that one later...)

The kids have had a lot on their plates as well -- Olivia had her first science fair project, wrangled with fractions in GT math, and had more essays and tests and projects than she has ever had before. Simon has had his seventh birthday (omg!), 2 EEGs, countless appointments, and an unfortunate increase in seizures leading to lots of med changes (and some super heavy duty side effects -- weight loss, weight gain, hair loss, emotional instability, overwhelming tiredness and lethargy... you name it....) due to an overall worsening of his underlying epilepsy. After being away for six months, Tigger has even had some challenges adjusting to learning to work in our home with Simon in new and different ways.

Suffice it it say that by the time we made it to this weekend, we were feeling pretty done. Strung out. Overcooked. Stick a fork in it. Burnt toast.

And then this stuff happened...

My students rocked their final presentations and reminded me why I love being in the classroom with them.

Brian graduated with honors (and style!) and we were doubly blessed to celebrate his amazing accomplishment with many of the friends and family that have supported us along the way,

Olivia's hard work has been hugely paying off this year -- she won the T-shirt design contest for her school's fundraising walk (see awesome design above!), she won third place in the science fair, she won honorable mention in the Memorial Day "My American Hero" essay contest (by writing about a service dog trainer!) AND she found another four leaf clover (her 3rd this spring) just yesterday. She says she thinks her clovers mean that something amazing is going to happen to her -- I think it already has!

And Simon keeps showing us all what real strength is. Despite being on a ton of meds (including high dose valium), being hemiplegic, AND enduring near-constant seizures, he couldn't wait to get on the track and run with the kids for Olivia's school's fundraiser yesterday. Laughing and smiling and leading Tigger with him the entire time.

And finally, this happened -- Simon got too tired to run, and so his sister pushed him. For 10 joyful, laughing, FASTER! FASTER! laps around the track with her friends. 

And so today it occurs to me -- things get tough, and they might even get tougher. That's how life rolls sometimes. But, we rolled with it, and not only have we "toughed it out," we conquered it. Working, studying, teaching, learning, advocating, walking, running, and finally pushing on through to the finish line, because that is how we roll.

A Mother's Day Guest Post

Leading up to Mother's Day a good friend and great writer Rita Buettner, asked me to write a guest post for her Catholic Review blog. If you'd like to read it, you can find it here:

10 Things a Special Needs Mom Learned (the hard way)

I'd love your feedback! Happy Mother's Day to all the fantastic moms, especially mine. :-)

Spring Surprise

I was a little crabby when I woke up this morning. Overnight, we'd gotten several inches of snow that I was unprepared for. The schools were closed, but my work was not (I do live in my office) and I was worried about juggling the kids and the clients for the day. Plus, I had a big meeting scheduled for the afternoon that I had spent most of Sunday preparing for... only to find it was canceled (and I wasted a weekend day!). Grrrrr...

So, when our neighbors invited us to go sledding with them I almost turned them down. I was afraid I was going to miss an important call. I didn't want to not be there for a client on a Monday morning, it just seemed like bad business. I mulled it over as I sipped my (strong) coffee.

Maybe the caffeine cleared my head, because it didn't take long for me to remember what my daily intention is -- to be present. It is something I have to remind myself of constantly, because with each surge of progress we see I fear losing Simon, or losing this miraculous progress, more and more. It isn't an irrational fear, but something we have been warned of since surgery was ruled out. Fortunately, for now, the medicines are working and we have not yet exhausted our options, but (me being me) I think ahead. And I worry. And I make myself nuts and I miss out on the gift that is now, the miracle that I have been given. I don't know what the future will bring (no one does); but I do know how many parents of children with cognitive disabilities are praying for a miracle just like the one we've been given. The miracle of getting to know your child better. Even if it doesn't last forever, even if it only lasts for a moment.

Today, I had a moment. I could choose to be present for my kids on an unexpected snowy Monday morning. It was a gift, and I knew I should take it.

I'm so glad that I did.

When we got to the sledding hill it was covered with kids. They were sledding, building forts, and having snowball fights all over the place. Olivia immediately ran off with friends to sled and do belly flops. Simon and I went up and down the hills several times in his little purple sled. Once the novelty of sledding wore off, Simon turned his attention to the kids playing in the snow. In another amazing surge of progress (if that is even the right thing to call these miracles), he was super interested in the other children. He went over and introduced himself to everyone he could find. He gave out loads of high-fives, and participated in multiple snowball fights.

Here was Simon being "present." With us there in that moment. Something I have prayed for without ever really believing it would happen. Today, I was able to just be with him. As I stood back and watched him go, just being a kid, gratitude swelled in my chest. Happy tears and snowflakes stuck to my lashes.

I was present. I was there for that moment, which really is the greatest gift of all.

A picture worth a thousand words

"Mommy, take a picture of me!"

Big smile, looking right at the camera, using appropriate pronouns, self aware.

There aren't words to cover all the amazing changes we have seen in Simon. The meds appear to be working (we have another EEG soon to check progress), and there are momentous tiny miracles every day.

I know I haven't blogged in a while, but big things are on the horizon and I want to share. Tigger is coming home, more medical tests and med changes, more educational plans to create.

This photo, this moment, seems like a good place to pause and then begin anew.

E to the E to the GEEE!

This weekend Simon had another EEG. It was our second one, though the last one was just a few months ago. Because of the results of that first EEG and the subsequent diagnosis of ESES; frequent, repeated EEGs and other fun tests (like MRIs, blood draws, and neuropsych evaluations) have become a regular part of our "new normal."

Simon wasn't at all happy about having his head filled with glue, tape, probes and wires but he tolerated it SO much better this time around. There were some significant things we did to prepare that I think helped.

1. We obtained a few of the leads in advance and using tiny hair clips we played with them and practiced wearing them for the past 2 weeks. Using them in this way took some of the "scary" out. We also visited the room the study is held in and just hung out for a little while under non-threatening circumstances. I think knowing where we were going and what was being used helped Simon feel more comfortable.

2. We started talking about the EEG days before it happened and I got Simon to help me prepare for it. The day of, we discussed the "Doctor Sleepover" and Simon helped pack his lovies and chose his PJ's and snacks.

3. We added in some fun distractions and rewards to focus on when the going got tough. I bought several tiny toys from the dollar bin to pull out when he got too stressed. I loaded his iPad with a few fun new apps to play during the procedure. Finally, I got a video with his very favorite characters (teletubbies!) to work for -- we played it as soon as he was all wrapped and ready to go.

Though they are a necessity, tests like this are very stressful for a little kid (heck, they sometimes drive this momma to drink...), so I've been actively seeking ways to make them less traumatic for Simon. Therefore, to help him cope, I've enlisted the help of a behavioral psychologist that specializes in kids with needs like ours. I've also applied my own creativity to the problem as best I can and am continuing to look for ways to make things better.

I'm pleased to say the effort has made an enormous difference. Our last EEG involved a lot of screaming, crying, and kicking (not to mention what Simon did!). Though, I can't say Simon enjoyed the process, this time around he was a LOT more comfortable and we were able to work through the rough patches without having to put anyone in a headlock. Now that's progress!

All wrapped up and ready to go! Simon enjoyed popcorn and a new teletubbies video as a reward for being as cooperative as possible while getting connected to the EEG.

Unfortunately, the results aren't quite what we had been hoping for. Though it is improved, his EEG is still very abnormal and filled with subclinical seizure activity -- looking for all the world like silly string streaming through his subconsciousness. I noticed it right away (I did a fair amount of peeking at the screen during the test, I am getting pretty good at this neurology stuff...) but his actual neuro confirmed my "diagnosis" today at our follow-up appointment.

For now, this means that the current medicines we have been trying aren't enough. Because surgery isn't an option, more medicines have to be tried. They have already increased the meds he is on (and which he isn't tolerating particularly well -- he is tired, irritable, and vomiting at least a couple times a day), and we will do another blood draw next week to see where he is with those. In the meantime, our quadrant of neurologists will confer to see what other medicines we should try next.

I'm worried about what more drugs will do to Simon (I am also worried about his resistance to the drugs since it is already an issue...), but I am also trying to focus on the positive. Since we have uncovered the ESES and have started to treat it we have seen global improvements in Simon's awareness -- especially his eye contact and use of language. Every day he does something that surprises me -- whether it is using a pronoun correctly, asking a new question, or building with duplo blocks (for the first time EVER!) and pretenting to be a giraffe -- our days are a mixture of worry and miracles. Though they make strange bedfellows, I am learning to adapt to it. It used to be that my go-to phrase where many things Simon were concerned was "It is what it is." Now, I find that "Carpe Diem" is a more frequent and fitting mantra.

I think I am going to need a new necklace...

Carpe Diem necklace on Etsy...xmas present to self?