Tuesday, May 28, 2013

Deliberately Untitled

My friends, this will be the hardest post I've written here to date. 

Over the weekend, one of the families in our small preschool community entered into the unspeakable horror of losing a child.  I am somewhere between acquaintances and friends with this family, and my sorrow is unmeasurable.  It cannot for one moment compare with the grief that his family is experiencing, and will be experiencing, for the foreseeable future.

Lee and I think that we know what it is like for people who are experiencing pain when it comes to their children.  We know nothing.

Most of us know nothing. 

We told Drew, because one of the child's siblings is in his class, and he is friends with her.  We have not told him details, and we almost introduced to him in this conversation that some day during his life, it it likely that Connor will die and we will be the family people are reaching out to, offering help to, and sitting with and crying alongside.  I just couldn't do it.  He's not even seven.  We held off.  I hope it was the right decision.

Tomorrow, we will get up, and dressed, and go with the community to sit with the family as help them as they try to say good-bye to their baby.  I will cry.  I'm already well known for my crying, but it will be on a whole different plane.  I feel like my crying is a selfish thing.  What right do I have to be sad?  Week after week, I write here and make other people sad as an exercise in therapy - that in itself is an inherently selfish thing.  Me me me me me.  And then, I get the most wondrous, supportive messages from you all, and it makes me feel so much less alone, even surrounded by the millions of people we have here in Northern Virginia. 

So thank you for being my therapists, and listening, and asking when asking needs to be done.  Thanks for loving my sons when I write about them, and laughing at the funny things and holding my hands through the tough things. 

I am open to each of you, and if something happens, my hand is here to hold yours for as long as you need it. 

Friday, May 24, 2013

Good-byes run both ways

It's been a crazy couple of weeks.  I apologize for the lack of posting but life, and work, has been busy and at the end of the day I am not really able to string the words together to make it worthwhile for anyone to read.

Last Friday, we received a call that Connor is being moved to a different school next year.  Initially, and in an ongoing way, we are happy.  We have been at odds with his school for the last two years and are looking forward to a little more peace in his education.  But what I've learned in the last week is that it seems a few things have been going on behind the scenes that make me seethe.  It seems that the administration of his current school pushed this issue.  They don't appear to like that they have a section of their school dedicated to disabled children when there are so many able children who need the space.  Ugly stuff.  But on the other hand, I'm no fan of the administration there.  I look forward to establishing a relationship with the new principal.  But also, and most importantly, the schools and adminstrations are not supposed to make any decisions regarding school placement without parental or guardian involvement.  Which they did not do.  At all.  With anyone.

It's hard to know what line to walk on here.  As Connor's number one advocate, do I stand up and hold the adminstrations accountable for not abiding by the regulations, even though their circumventing it and placing him elsewhere actually looks to be the best outcome for Connor?  My friends/parents in the system are angry, and rightfully so.  I am angry that they flouted the regulations.  But I am angrier at the shitty, thoughtless approach to my son that his school has "bestowed" upon him. 

So that's a good-bye that won't be too hard.

Then, on the other side, there's our Megan.  When Connor was 8 months old, the Arlington PIE Program called to tell me that he had been reassigned to a new physical therapist and they were really excited because it was the person they had wanted all along.  I got a call soon after from this new woman, and we set up our first appointment.  When she arrived at our house, she plopped down on the floor with him, and started performing some stretches with him so she could learn how and where he worked so their time together would be better focused.  He'd been having some issues with constipation that had me incredibly stressed out, and about 5 minutes into the stretches, he started wiggling, then passing gas, and then, by the end of the 45 minute session, taking care of that business. 

She came into our home, and took something that was blocked up and helped us find a way around it.  In a real way, but also in a more esoteric, atmospheric way. 

We have not been the same since, and it absolutely breaks my heart that her family is moving away on an amazing adventure and we won't see her much any more.  Simultaneously, I am so excited for them.  We have been so fortunate to have her in our lives.  Not only Connor, but Lee, Drew, Tucker and me too.  She has loved my family unconditionally, and we love hers.  Let's put this another way:  my mother knits baby blankets for family members when new babies are on the way.  When I told her that Megan's first baby was on the way, her response was, "Find out what color she wants.  Megan gets a Wooby." 

She is family, and we will miss her.  And hopefully, we will go visit them all when the time is right for everyone! 

This good-bye is much, much harder.

Tuesday, May 07, 2013

EEG (Not Pronounced eeeeeeeg!)

I just got home from taking Connor to get recording electrodes glues to his scalp for a 24-hour EEG (Electroencephalagraphy) test.  It's been cloudy, drizzling, raining, and pouring intermittenly all day.  I'm down, partially from sleep and partially from doing something so outward and obvious in terms of testing Connor.  These days are harder as we have the immediate visual reminder of the testing materials on him that say "Your boy is not well."

Last night, for the second time in his life, we forgot to give him his medications before bed.  We've just changed his dosing times, and it takes a  lot to remember it sometimes in the craziness of dinner with the boys, and then playing and then, if we are lucky, an unrumpled bedtime routine.  Usually, we are pretty rumpled by the time the Wright brothers are in bed.

So we forgot.  At about 10, he started having a type of seizure we haven't seen in a very long time.  We talked about the fact that we hadn't seen that in a long time, but we did not remember at that time that we had neglected to give him his normal dose of anti-seizure medications. 

At midnight, he was making some more noise, fine really, but noisy. And Lee said, "Did you give him his meds?" and all at once we realized we were 5 hours late dosing him.  Pushing him without realizing it into a bad night.  I went and got his meds and get them into him, and then he drifted back out and had a pretty peaceful rest-of-the-night.  It took me an hour, though, to recover from feeling that I'd really let him down.

The only other time something like this has happened, we didn't realize until we were preparing his breakfast the next day and adding his medications in.  So this time, we didn't forget-forget...he did at some point get the dose.

Anyway, now his head is all swaddled in gauze and we are to track any activity we want the doctors to review specifically once this 24 hour period is over.  Tucker is most interested in seeing what it all looks like.  I will let him see when I have the pleasure of removing everything from his head tomorrow.  Until then, the top half of him is essentially in lockdown - no one touches him unless his head catches fire.  Which it won't.  And in the meantime, I'm hanging a sign on his door to his room that says, "Have I had my nighttime meds?"

Just so we can be sure. 

To recap on other things...

So far I am not doing so well with the exercising. I'm hoping to really set a schedule tomorrow and stick to it. It's hard, as it turns out, especially when it's raining nonstop!

Also, it's hard not to eat Goldfish, or chocolate dipped granola bars for breakfast. They are just so HANDY when I am running out the door!

However, today is a big day because one of my IS Mama friends is having a baby today. I know that she and her husband are handling a lot of emotions today. I know that they are thrilled and excited to meet their new baby. I know they are scared and nervous that something could happen to her as happened to their Wonder Boy who is so much like Connor. So for them, I write this:

In early 2006, we found out we were expecting another child and set about making sure we tested everything we could test, and did everything we could do to make sure this baby did not have the fight that Connor does.  I spent an inordinate amount of time being utterly certain that everything was going to be absolutely fine.  Then, three days before he was scheduled to be delivered, little Drew started knocking at the door to come out, so we headed over to the hospital as soon as Aunt Erin could get to our house.  I lured her with, "We need you to come take care of Connor so we can go to the hospital and I know it's 6:00 am but I have COFFEE!"  (It totally worked.)  It was a quick move through registration and prep to the operating room.  When you are having medically required C-sections, it can go quickly if there's no line.  There was no line that day.  And I remained in my obnoxiously-certain-of-everything-being-fine state until we went into the OR, and they started hooking me up to machines.  Lee, all scrubbed in, was sitting on a stool next to me, and chatting with my doctor, asking if he could watch.  She agreed but informed him that if he passed out, he would be dragged aside and left on the floor.  He was fine with that.  He turned back to me, and I must have looked terrified.  He said, "What's wrong?" and I said, choking on tears gone unshed for 9 months, "I'm really scared." 

"I know.  Me too."

My wonderful OB popped her capped head over the sterile drape and said, "Everything okay up here?"  I wept and said yes, just a little nervous, etc...downplaying where I really was.  "Colleen," she said, a little sternly, "I can't deliver this baby until you stop crying.  Because I can't make the incision with your stomach jumping all over from erratic breathing from crying." 

My doctor is awesome.  It totally settled me out, got me back in the  moment I needed to be in, which was to welcome my second son to the outside.  I pulled myself together.  Drew was delivered.  After a little bit, Lee and Drew headed off to the nursery and the rest of my delivery was completed. 

And he was fine.  Today, he's smart, charismatic, funny, and most of all, kindhearted and friendly. Having him helped me learn to balance my fears over the future I cannot totally control with the unabated joy of having a family.  Having a family was a lifelong goal of mine.  What I didn't realize when I was young that while you can have that goal, you cannot control anything once they get here.

I can't wait for my friends' little baby to bring them some peace today too. 

Wednesday, May 01, 2013

Let's Get Physical...

Every few years, Lee and I pretend to be responsible parents and go have physicals performed.  Our most recent one was about 2 weeks ago. And now here I am, with a call from my general practitioner's office telling me that I have to start regularly exercising.


I know that I need to. I know that I want to. But the parts of my body that actually NEED the exercise...my heart, my lungs, my abdonimal muscles, my all the other muscles...they are all like, No, babe, sit down! Have a snack! You're still in fantastic shape...

They are like the serpent in the Garden of Eden. Except they are offering me Goldfish crackers and beer instead of an apple.

So. New rules that I am going to apply to my daily life:
1. No more chocolate dipped granola bars for breakfast.
2. No more Goldfish crackers unless I have exercised that day already. (*dispensation for co-op days when I always bring Goldfish. But if I snack on them there I must run after co-op.)
3. I will recommit to running at least one mile 5 days a week. If I run through the neighborhood, around Drew's school, and back to the house, that's 1.5 miles.
4. I will do some kind of strength training 5 days a week.
5. I will quit my gym. I don't go. It's a waste.

Five's a good start. These will hopefully help me get stronger.  I could use some upper body strength.  All that carrying Connor is HARD.  He's heavy, as you may remember!

I'll try to be honest about it too.  I'm guessing my first run is coming tomorrow morning, when I (GROSS!!!!) set my alarm and get up at 6 to accomplish this run.  Stay tuned. And send encouragement.  I am going to need it!