If you've been following, I guess you're aware of where we've been and where we are, seizure-wise and development-wise...
But what about the emotional-wise progress?
It's not easy to see on one of those bad seizure days, because all that seems visible are obstacles on that particular day.
The seizures seem to make everything fuzzy and I tend to focus on the negatives...like the seizures never stopping...or the milestones we may never reach.
I feel stuck on these days. Trapped in an emotional standstill. And I can't see it.
That being the changes and progress that have occurred.
Exactly what has changed?
I have.
I have slowly....slowly started to incorporate these changes into my life. Instead of assuming Austin is "bubble boy," I've tried to make accommodations to suit his needs. I moved dangerous toys from his play area, so that I can let him play freely. I replaced them with soft, plush safer toys. I got him a shopping cart cover so that he could experience the joy that is grocery shopping (haha)! I pushed out the denial and got him a helmet so that he could walk safely. All these things I couldn't bear to do before because I didn't want to accept these changes. It took me months to make the first step towards progress. The first few months were filled with that desire to fix it and get it back the way it was. I guess about five months in, I realized that he was growing...and desperately needed me to grow with him. He was no longer just sitting in the floor trying to get up and move. He WAS moving. I was forced to get off the plateau I was on, and start climbing because he was going with or without me. I was hesitant because that meant picking up and moving on. I absolutely did not want to move on unless that meant "back to normal". We were supposed to wait for the seizures to stop before resuming our lives.
Somewhere along the way, I realized that my constant, obsessive desire to recapture what was stolen, was gradually shifting to the constant, obsessive desire to salvage...to damage control. That was pivotal. That meant I wasn't in complete denial anymore. In no way am I saying that I don't still hope to recapture everything...but, that realistic prospective changed the way I live. It gave me the freedom to be truly thankful for seeing him pick up a pea and put it in his mouth at 16 months old...instead of dwelling on it not coming sooner.
I look at Austin trying so hard to stay balanced enough to run. RUN. That is something that I could not have imagined a year ago. I see him shoveling pancakes in his mouth so quickly that I cannot keep them coming fast enough. I hear him squealing with delight as he makes his rounds in his playroom. Those moments are filled with pure joy only your child can bring you. And for a while I forget.
THAT is progress!
Besides seizures, what has remained the same?
The honest truth?
The hurt never ever goes away for a day.
It's always there, but on those wonderful days, it's kind of dormant. Sleeping just below the surface. On particularly bad days or even weeks, it will erupt. And erupt. And erupt.
But, afterwards I regroup, reevaluate, and dust myself off and put it back to sleep again. Those joyful, blinding moments put it to sleep again.
Life puts it to back to sleep.
And even though seizures are still very much apart of everyday...and that little reminder accompanies each and every one...
And I still obsess over progress and seizure freedom...
Life goes on.
A year of life has gone on.
A year of unsuspecting progress has been made.
I survived! We survived!
I'm not even close to being rock solid. There are still plenty of eruptions. Just not necessarily in a constant state as before.
And, I just happened to notice that life did not stand still for us (or me).
And we did not stand still waiting for life.
We've been going and progressing without my even knowing.
That one day at a time cliche really does make sense.
Something that I have to remind myself everyday. Looking too far ahead is daunting. Especially when every aspect of this disorder involves uncertainties.
And I'll be the first to admit I still don't live life they way I should. I'm a self-proclaimed homebody...
But, just like Austin, I'm taking baby steps to get there!
9 comments:
Reading your posts brings back so many memories. You sound SO much like me...down to every last detail. Except I think you have figured out the whole life aspect a lot quicker than I have. It wasn't until I was pregnant with Elsa that I realized that I needed to get moving on with life because once she was here, things were going to be a lot harder. I wanted Sophie to experience more while I had the time to focus on just her.
You are an amazing mom with a tremendous amount of love for Austin. Baby steps is all that we can ask for.
I have read your last three blogs, and I just want to tell you...From where I stand, YOU are one of the most down-to-earth parents I have ever met...ESPECIALLY at this point....You have come to terms with SO MUCH already...It does take a long time...But you are making AMAZING strides! I am so very proud of you!!! If you will promise me...Just keep doing just like you are doing....You are ABSOLUTELY on the right track to having a wonderful life with little Austin!!! Your words tonight have re-inspired THIS old, tired mom!!! Thank you SO MUCH for that!!!
Cyndi
When people hear you have a son with seizures and disabilities, the question that follows is usually "how do you do it?". And this is exactly how. I've told you it will get better, and this is what I mean. As hard as it is, you learn to live and grow with it, while still hoping and praying to end the seizures and move on. You're not accepting the "disease" but accepting that life progresses and you need to change with it. Congratulations on getting there "so quickly".
hugs
Elaine -I honestly don't know how you have done it. I've always been scared that having another baby might interfere with my ability to care for Austin and the strength to keep searching for him. But, you never stopped fighting for Sophie for a minute, all the while welcoming Elsa and soon to be another Baby Coleman. Absolutely inspiring!
Cyndi -Thanks! I'm slowly getting to a healthy spot. Still a MAJOR internal struggle...but there's progress here! I just didn't realize how far I'd come until recently. Reflecting back has certainly shown me I've unknowingly grown a little! :-)
Jen -It's amazing how differently I feel after that nasty funk I was in a couple of weeks ago. I desperately needed something to pull from to keep me going. Since his seizures are always going up and down, I do too. But, I can't deny the fact that I have made progress towards getting on with my life. And you're absolutely right about accepting the disease vs accepting the changes of life.
Austin and you have been on a journey of a lifetime and it continues day by day.
I remember you once poking fun at blog writing back in the REC days and now look at you! I think you have a way of expressing yourself that is both beautiful and resourceful!
You will and have helped people!!
Your writing and sharing of both the good and the bad (difficult) is such a gift to others!
For me, it's nice to hear that I'm not the only one clinging to "a day at a time" for whatever the situation of emotion!
It's always nice to know that through it all you have people who love and support you!
You are helping in so many ways and for so many people and their children!
All I can think of to say is thanks for sharing and please don't stop!
Love ya!
e.
I have been reading your blog for awhile but have never commented before. This post inspired me and reminded me that sometimes we need to just follow our children's lead, even if it isn't the "plan" we envisioned for them.
And I think you may have just talked me into getting her a helmet. Also, I had not paid attention to Austin's meds before. I think Maddie may have had a similar effect from Vigabatrin. The single spasms which make her fall greatly intensified as we went up. I am glad (weird thing to say about seizures....) that someone else has seen it so I don't feel so crazy saying it.
Sorry for the delay in comment, I'm trying to get caught up on all my followed blogs.
You did some tremendous writing over the last few blogs you did. Really a spectacular summary of your life, how it has evolved with him. It's something that I can absolutely understand better after reading your words.
I still don't know if you ever found a cause, I had been meaning to ask but had not yet. It wasn't mentioned in the overviews at the sides or bottom of the page. Have you ever come close to getting any reasons for his epilepsy?
Sorry if that is something I should know already, but I am trying to focalize my IS world, so to speak, does that make sense?
Liz -Don't feel crazy! Vigabatrin was terrible for his dropping seizures! We'd never seen anything like that before. It started immediately. And the intensity went right back down as soon as we weaned. The only good thing I have to say about our experience is that the clusters were nearly non-existent. And they started back up when we weaned. Oh, and the vig is THE reason we had to get a helmet. We couldn't let him go alone AT ALL. It was heart-breaking to say the least.
Ken -Makes perfect sense. We have a suspected diagnosis of multifocal cortical dysplasia. I haven't posted much about it because it's only suspected. There's nothing indicated on the MRI, and the only way they would know for sure is from a biopsy of the brain tissue (only to be done in the event surgery is performed). It was extremely confusing. Austin's development (although delayed) tends to support a one-sided focus. The initial FDG PET shows that being right-sided. His left-handedness supports a "left-sided" focus. The other PET (FMZ) still showed right-sided abnormalities with left-sided issues as well. That is what put a halt to our seeking surgical intervention for the moment. It's most likely bilateral.
Hi Holli! Thanks for taking the time to comment on my blog! Your right all we can really do is keep on putting one foot in front of the other, because like you said on your blog, life won't stand still for us. I hate that no one really "gets it" as far as what all of us mother's have to go through and complain about their perfectly fine children. As I said to someone the other day who was complaining-"oh yeah like having to healthy children who walk and talk is sooooo terrible!" They just don't get it and it's sad that they won't unless it happens to them. Sad but true. I too really don't know what to say, since we are still in the grieving period too. I hate that all the hopes and dreams we had for our children might never be true, it stinks. But I will definately continue to pray for you and Austin that things one day hopefully will get easier!
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