No longer was it the lazy parent Saturday routine.
No Sir-ee!
It was a 3 game a week-er deal! Plus practices!
And it was NOT easy! I mean...I'm sure that's a hefty load for any parent. But seriously...with a Seizure Boy in the mix...I think I have whiners rights!
But then I look at him. My big boy. So cute in his uniform that I just wanna run on the field to pinch his boot. Or give him a smoochie. Or stay glued to the dugout so we can cuddle against his will. And embarrass the heck outta him.
In those moments. The cute moments. It feels a little bit easier. Worth it.
Now that we've entered the Little League three games a week phase of life...it's different. Balancing everything I mean. Seizures have a way of always tipping the balance scale. Just when you feel like you've found your footing.
Blam!
Something shifts. And somehow it always seems to tip in the wrong direction. Although...in my head I know that's not true. Cause...we have days with less seizures and more smiles. I don't know. I suppose I'm easy to throw off balance. And not so easy on the regaining it end.
Which is why we were relieved when the season was finally over! And also why we said no to AllStars.
Emphatically. THREE times in fact.
It just felt like TOO much to juggle.
Seizures. Practices. Seizures. Four games a week. More seizures. Double headers even. And it's a travelling team. Only the bus is mommy and daddy.
So we said no. Felt guilty. Cause Toby loves baseball so much. But there are lines. Drawn into our life by seizures.
Toby's coach kept pestering us.
In fact, the last practice of the regular season he came over to the fence and was, like,
"So what's the deal?"
Jonathan and I were quiet for a second...so he went on...
"If it's rides...we can work out rides. That's not a problem!"
I had already determined (without telling hubs-ie) that if he asked us again. Face to face. I would just lay it out there for him. Why we couldn't. And what we would need to make it work. He already knew a little bit about Trevy. And our seizure saturated life. But that's another story altogether.
Anyway...
deep down I know a major part of the problem for us is how very private we are. I mean...I bought one-a those medical ID bracelets. But it's still in the desk. Blank. After Trevy's great escape I did take it out with good intentions. Only to pause...cause we're weaning meds. Which is really just a good excuse. The fact is...I'm not sure how comfy I am with the idea of a glaring note to the world that my son is different.
And besides we don't want to mooch help. You know...play the sick kid card.
But this is our reality. Seizures consume so much of our life. And by consume...I do mean take away. Reduce. Steal. Rob. Leave us with less to give. Of time. Energy. Money. Emotion. Everything.
And the fact of our reality is...we could use help. Help would help. Our super hero powers are running on low.
So we reluctantly said yes. To Help. Evidently the fourth time's the charm for the Foltzie Fam.
::smile::
Of course...skeptic me is waiting to see how the whole help thing pans out.
Meanwhile sappy me was really touched by the offer. Not by family. Or friends. But just a guy in the community. Who hardly knows us. But wants our kid to play ball. I mean...come on...makes you sappy too doesn't it?!
Anyway...we're on the last day of the first (of three) tourn-ie. And our boys are rockin' it!
Three and O.
Oh and I'm happy to report that the offer the help out has already panned out at least once.
Anyway...
it means a TROPHY! Toby's all tingles and nerves.
And it makes me proud of us. For accepting help. And that because we did...Toby gets to feel like a normal kid. An all american baseball kid.
Oh and I'm happy to report that the offer the help out has already panned out at least once.
It was so incredibly hard to let Tobes hop into Coach's car. With Coach's wife & kids. But not me.
I cried after we drove our separate ways.
That was really hard on my heart. Letting Toby go to a game without me. Even though I knew Jonathan would be up after work. I always told myself I would never miss anything important in my kids lives. But that was before seizures...
Ugh...
Seizures suck. Really really suck.
Anyway...
So if our boys win two outta the three games today...
it means a TROPHY! Toby's all tingles and nerves.
And it makes me proud of us. For accepting help. And that because we did...Toby gets to feel like a normal kid. An all american baseball kid.
It's nice you know. To feel like for once at least the seizures aren't stealing every single thing...
And that at least Toby gets a little slice of normal.
********
ps. these pictures were snapped during the one & only Saturday game of the regular season. Where we were able to be together...as a family. That was a happy day.
7 comments:
Great Pictures! I am so proud of Toby. He is so cute and grown up looking! I am also proud of you and Jonathan for letting Toby do that. It is always hard to let someone help but you also dont want to deny others from blessing you!
love ya!
C
Two things really leap out at me as I read this blog. The first was this:
Seizures consume so much of our life. And by consume...I do mean take away. Reduce. Steal. Rob. Leave us with less to give. Of time. Energy. Money. Emotion. Everything.
It's such a great way to phrase the way 'IT' works in our lives. I have a hard time explaining it, but that part about LEAVING US WITH LESS TO GIVE is great sentence.
The other thing was the fact that you bought the ID bracelet and have not put it on yet.
Um...DITTO.
We haven't had the courage to do it yet ourselves either. It just sits in a drawer.
To put it on him. I dunno...it's an admission we aren't ready to accept yet.
Nice pics.
OK...Here's the deal...I know it is hard to accept the help, but if it is offered and YOU are comfortable with the people, do it....Even BEFORE the seizures...When Colby was ONLY non-ambulatory, non-verbal, incontinent and severely mentally delayed...I accepted help offered by a few close friends (and close family, of course)...I KNOW how hard it is for others to take them off in their cars...I was THE SAME WAY until Shawn-Michael was five and in kindergarten...His life really took off at that point, and I either had to "buck up" or he was going to really lose out...So I did...But ONLY with a very select few...Accept these safe and comfortable offers...It will become easier, and you won't feel as guilty...And Toby will become more and more used to it....In fact, it will probably make him feel more grown-up to go off with Coach or whatever! I PROMISE you...It WILL be OK....
And the "playing the sick child card"? Hopefully, Trevy will NOT be a sick child much longer....But don't be afraid to catch some breaks through your boy! It makes some people feel really food to do something special for someone who might need (AND appreciate) a little extra help or attention....
I LOVED this post...It took me back to the struggles when my boys were so much younger...I was right there!!! It is DEFINITELY a balancing act....And you are doing a BRILLIANT job already! I PROMISE!!! Just keep doing what you are doing...
Love you!
Cyndi
Ken and Danielle- I am going to yell at you both. PUT ON THE BRACELET!!! What if something happened to you, while Trevy/Bennett was in your care. What if you became incapacitated and couldn't communicate his health needs. It is vital emergency personnel know his history. Not just the seizures, but the current meds too. Stop worrying about what others will think and DO IT. It could save his life. I don't mean to be dramatic, but it's true. I should also point out that Medic-Alert (who Austin's bracelet is through) markets them as ID bracelets for lost kids also. And I'll be honest, I don't think anyone ever commented to me about Austin's or asked what it was for.
D- I am glad you took the help and are giving Toby his chance to be a "noraml kid".
So glad that you accepted the help offered and allowed Toby to keep playing baseball!
Love all the pictures....and oh my the curls!!! I know, I know, he's always had them, but I really want to run my fingers through Trevy's hair...lol
Great photos. I especially loved the one where the boys are lined up sitting on the bench and Toby is just smiling...you caught him in the moment and he wasn't posing, he was just happy.
And, coming from an ex-softballaholic...I'm so glad the 4th time was a charm. Playing ball was my first love!! ;-)
I'm sure it makes your already stressful life all the more hectic sometimes, but I'll bet it gives you a nice distraction every once in a while too!
Go, Captain Slugger!
you said it best: seizures suck!
But, i'm glad you gave in & let Toby play. To give him an outlet of something that he loves to do (& it sounds like he is awesome at it!!). We too are so stubborn about accepting help. We are both (more me) just worn down to nubs lately though..especially with the lack of sleep.
we also try to keep connor as "normal" looking as possible too. I still haven't even ordered the medic alert bracelet! I will I will(Don't get me Jen!!)!!! But, we just got Connor's new adaptive stroller, and I almost cried when I saw it..it screamed "LOOK AT MY CHILD WITH SPECIAL NEEDS!!" I was almost in tears when I showed it to James. It looks like a wheelchair, and it kills me..even more than my aching back kills me.
I loved this post and i loved the pics even more!!
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