IMG-9604This is Grace’s communication book from school. She’s had a lot of “not great” days this year. I’m glad the school tells us, but it’s hard to see. First, it makes me sad. I want her to do well. I want her to pay attention, learn, be part of the action. I want her to succeed. I want her to not cause her teachers more stress than she should.

Then I wonder what I can do about it.   She could get a “not great” related to seizures, tiredness, or unwillingness to participate.

Seizure control continues to evade us. (I don’t expect total seizure control – I expect minimal disruption from seizures). She went through a period where she was having some really hard seizures. That period seems to have passed.   But we still have some med changes to get through.   I’ve been putting off the med changes because I just don’t feel like she’s ready.  At times I feel guilty about that.  I don’t want to have her on more meds than she needs, but every time we change her meds it messes up her equilibrium. Sometimes it’s easier to stay with what you know than to take a risk that things will be worse. That’s especially true when things feel hectic.

If seizures aren’t bad enough seizures make you tired. But she’s also tired on days when she isn’t having a lot of seizures. This weekend I woke her up at 9 am. I’m 100% certain she would have kept sleeping but she had to play baseball. Is she just tired because she’s 11? Is she tired because her brain activity isn’t allowing her to rest well? Is she tired from meds? Is she tired from stress? Is she just bored? Is it something else? I don’t know.

And then there’s the whole thing about her being unwilling to participate. So then I wonder if what she’s doing is not interesting to her? Is she bored? How do we spark her energy? How much imagination does she have? There are times I delight in her attitude – it means she has spunk! “Not great” days don’t really bring out that delight.

I can’t incentivize her. I can’t punish her. I can pep talk her all I want but all she does then is look me in the eye or lean her cheek toward me to rest her head on mine.

So I’m stuck. The “not greats” tell me something but the rest of the picture is incredibly vague.

In the midst of not knowing I have to stick to what I do know. Something will become clear, but in Grace’s time, not mine. I can’t be scared to push – she needs that. I know her team is working hard. I continue to thank them and try to signal I hear what they are telling me. I update them on all things Grace I can think of.  And finally, I just have to believe that this will pass. The good and great can come again.

Joy

Advertisements

“I didn’t know Grace had a brother” I heard a teacher say as the four of us walked past inDSC00327 the hallway at school. Today was Meet the Teacher day. In my opinion, it’s madness – in an hour and a half, every kid in the building is technically supposed to find their room, meet their teacher, put away their supplies, and then be ready. You have exactly 2 minutes with each teacher to ask questions while they are trying to take care of everyone else there and for me, the whole thing just lacks personality. Graham was anxious, not sure of what was going on. Grace kept yawning. Kevin and I ran around trying to unload the four bags of supplies necessary in the places where we thought they should be.

Anyhow – that’s a blog for another day!

So, back to the teacher’s comment about Graham… it was really the tone of which it was said that caught me. I heard it as “Wow, Grace has a brother.” It’s not the first time I’ve heard the tone. It happens more than you might think. My impression is that a lot of people think maybe we are a bit crazy to have had a second child when Grace is so Grace.

I choose to think of it this way. Graham wasn’t an accident we had him on purpose. We waited to have him until we felt like Grace was stable so that we’d be able to be there for him like we wanted to.   We had him because our family didn’t feel complete – we’d always talked about having two kids.   Some days I think of Graham as a visible sign of our faith and optimism.

That’s not to say we weren’t scared when we had him.  But we wanted him. We took a risk on him.

He’s stretched our parenting in different ways. He teaches us things that are quite frankly amazing and humbling.

I’m looking forward to finding out what school is like on the normal side of parenting. Even though Grace has been there I just have to imagine it will be different.

So this year, this one year Grace and Graham will be in the same school building. I’m anxious to see what this will be like for both of them. What will it mean for Grace to have a little brother in the building? And what will it mean for Graham to be Grace’s little brother?

We shall see!

Joy

 

IMG_6440When people ask me how Grace is doing a lot of times I respond by talking about how grateful I am that she’s been out of the hospital this summer. Facebook has been reminding me everyday lately about Grace’s surgery, a trip to the ICU, and all the complications of last summer. I have to take a minute to say that I’m crazy grateful for how far she has come in the last year.   Our girl – the one with spunk- has fully returned!   Having the mitrofanoff has made it much easier to care for her- allowing us a flexibility I never even really dreamed possible.   We can be spontaneous with less planning!

Even though she’s been out of the hospital this summer she’s never really settled.   We are constantly tweaking things or watching something. As of this writing, one of the things I feel like we are chasing is the noise that Grace has been making. Our normally quiet girl has taken to being very noisy. Sometimes I think she’s just “talking”. Other times it seems to be a sign of distress. We’ve been trying to figure out why this is. The school year rapidly approaching adds a bit of pressure as even after doctor visits, x-rays, changes in meds, even a dentist check, we still don’t know what is causing her discomfort. We snuggle her at home when she gets to sounding distressed and that calms her. I can’t see that working at school in the same way. I have fears of her being ushered out of classrooms because she’s interrupting others learning. Next week she will be in her last year of elementary school. I’m increasingly aware that opportunities for integration will only become fewer and I want her to soak up every last drop this coming year.

Yesterday I was at Hy-Vee picking up Pedialyte. It had been decided that we needed to give her stomach a break and see if that would perhaps bring her more comfort. I left work 10 minutes earlier than I regularly do and found myself standing in front of several kinds of Pedialyte. Most had prebiotics. I have no idea what prebiotics are and didn’t have time to do any googling. (Grace is not allowed probiotics because of her port so my hunch was that prebiotics maybe shouldn’t be in her wheelhouse either.) So anyhow I found a bottle that didn’t say the word prebiotics on it and went to check out. Luckily there was someone at the express checkout and no line because I was pushing my time. I had to be to daycare to get Graham (who doesn’t always want to leave right away) and be home for Grace’s nurse to be able to go home. Anyhow, I found myself in the express line face to face with this very young looking man and to my horror, I start hearing the music playing in the store and my eyes tear up.

It was Miley Cyrus…It’s the Climb. The part I began listening in on goes like this…

“There’s always gonna be another mountain
I’m always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I’m gonna have to lose
Ain’t about how fast I get there
Ain’t about what’s waiting on the other side
It’s the climb”

So anyhow I start tearing up.   The chasing the noise to no avail. The weight of the past year. The fear. The constantly trying to get caught up. The advocating. The defending her. The unknown.

It all takes a toll. A really real one.

So much about Grace feels like an uphill battle. I wish sometimes it weren’t a battle just a slow and steady climb. But the battle sometimes is a war within ourselves trying to decide the right thing to do. Sometimes the battle is getting what we think she needs. Sometimes it’s about deciding what fights to fight and which ones to let go.

We want Grace to keep growing and learning and getting stronger. That’s the wanting to make the mountain move. She’s got crazy tough epilepsy that affects so much. Growing Grace is slow, long work that requires much perseverance and so much patience.   More perseverance and patience than I have some days.

We don’t know what’s on the other side for Grace. We are taking this one day at a time. That journey – that’s the climb if the song holds true.

So I realized it was a bit much – me getting all teary eyed in a store. I tried to put it in perspective. The tears receded. I was doing what I could for that day. I’d been on the phone with three of her doctors’ primary nurses. I’d been with Grace when she had a hard seizure that morning before I left her. I’d taken her to speech therapy. I’d given her meds, cathed her, dressed her, kissed her cheek, and handed her toys. I’d held her hand. And now I was going to give her Pedialyte and report to the doctor the next day.

I walked out of the store and away from the song.  I was, however, grateful that I had heard it play. Somehow it encouraged me to keep going.

Joy

IMG_6048Graham fell on Saturday on a metal slide that he loves.  When he got back up there was a pretty good gash on his chin.  Enough that we knew he needed stitches. Graham did not want to go to the doctor.  I almost laughed out loud when Kevin tried to comfort him by telling Graham that “Mommy and I are really good at emergency rooms.”

When we arrived and saw the triage nurse I was amazed how fast it went.   After birthdate, address, etc. it went like this:

Nurse: What happened?   Me: He fell on a slide. We think he might need stitches.

Nurse: Any medications?   Me: No

Nurse: Any allergies?   Me: No

Nurse: Is he generally healthy?   Me: Yes

And once they had his blood pressure, oxygen, etc. They took us back to a room.

The nurse chatted with Graham despite his reluctance to talk back. Graham whispered a few answers in my ear and then asked me for my phone so he could show the nurse a picture of the horse he rode earlier on the carousel.  From there he proceeded to other pictures – the donut he ate for breakfast, the ice cream he had after his dance recital…I was slightly embarrassed that there were no pictures of healthy food for Graham to show the nurse, but he doesn’t ask to take pictures of fruit!

Anyhow the nurse left and it was just the two of us.  Graham glued to my side – still not talking out loud.  He warmed up when I pointed out a picture in the room.  A hot air balloon made out of several different stickers.  We took turns picking out shapes and pointing them out to each other.  I was so grateful for that picture – I thought quickly about how I don’t really notice the artwork when I’m there with Grace.

The staff seemed charmed by Graham.  Everyone was very kind.  There was no rushing him.  The pace and atmosphere were wholly different from times in the ER with Grace.

In the end, we came home with bath toys.  A saline bottle they’d used to clean his chin before they put in the stitches.  A syringe that they’d used to give him medicine to make him relaxed before they put in the stitches.  No one’s ever offered Grace medical equipment for a bath toy.

We also came home with a boy with five stitches in his chin for the next five days.

I write about it here because the difference between answering all of those questions from the triage nurse with no instead of yes was really pointed out to me.  I don’t think of Grace as unhealthy.  I don’t think of Graham as healthy.  They are just my kids.  I hate for either of them to be in ER.  But I’m thankful it’s there for both of them.  I’m thankful that the ER is able to ramp up for Grace or look at pictures on a cell phone to calm an anxious Graham.

Joy

S4300599Last week at this time Kevin, Grace, Graham, and I were just home from a family camp that serves special needs families. As part of the programming, the mom’s were all pulled together for some focused time.  In that time there was a comment made about the club of special needs motherhood.  Some of the women in that group joined voluntarily by adopting a child or children with special needs – others like me never anticipated being in the club; we were voluntold.

I’ve thought a lot about the club over the last week. I didn’t find it right away when Grace was diagnosed.  I caught glimpses of it when Grace was hospitalized on the epilepsy unit and we’d meet people and talk about epilepsy and seizures in this really frank way.  When Grace was little I felt much more held together by the professionals who assisted her through early access then I did by any kind of special needs community.  I think the intimacy of those professionals being in your home is part of that.

I’ve since discovered that when I wasn’t looking the club seems to have formed around me.  This is heartbreaking and such a relief.

I grieve a little when a new mom joins the club. It’s not like there is a membership card – but a new diagnosis that grants you entry. This is a not an easy journey. And even with the club, it can be lonely.

What I’ve learned from being in the club is that there is a lot of ability in disability. Ability looks different in different people – there is no standard.  Even though I knew some disabilities were invisible I didn’t think about it much.  I do now.  I’ve learned to never compare – the same thing in two kids can look very different.  I’ve learned to reserve my judgment – you just never know what someone else is dealing with.  I’ve learned the power of empathy.  I’m reminded of the importance of laughter.  I’ve learned how to live in a continuous cycle of grief.  I’ve learned that to encourage sometimes all you have to do is smile.  Sometimes you send a text.  Sometimes you bring a meal. Sometimes you just listen to someone explain why they are angry – and you don’t tell them they shouldn’t be.  I’ve learned that you don’t have to agree with someone on everything to be a support – it’s not an everything or nothing kind of thing. I’ve been reminded of the importance of celebrating what should be celebrated and not glossing over it because it doesn’t seem big enough to celebrate.  I’ve learned what it means to wait.  I’ve learned that what you say and how you say it really does count.  I’ve learned what it means to be vulnerable. I’ve learned about optimism even when it seems crazy to be optimistic.

I’ve learned that you need both. You need people outside and inside the “club” in life if at all possible.  In some ways, it’s harder to add the people outside the club to your life because you are in the club to begin with.

And to sum it up I’d say the hardest part of being in the club is that there is a certain amount of uncertainty you just have to be ok with.  If you aren’t its hard to enjoy the good stuff.

I’m grateful the club found me.  I can’t imagine doing it alone.  Sharing life is such an important part of living it.

Joy