-
Trying to stay positive...
- Mar 20, 2010 at 12:50 AM
- By
- Comments (8) Total Views (302) Everyone can see this journal post.
It doesn't seem like "staying positive" should be such a daunting task, but it is! It drains me.
Tuesday night Elijah had the SMALLEST little seizure. It was over so fast, I barely registered that it was happening. I even have room for a tiny bit of doubt that it WAS, in fact, a seizure...
So, here I am, having spent 3 days doing nothing but stare at him waiting for SOME comformation that either the seizures are back and it's time to sound the alarms and act... Or that he is fine and I can relax.
It's like standing on the edge of a very very scary cliff...
When Elijah finished his first round of steroids, (which were life-threatening because of the extreme hypertension and swelling adn immune system shut down he experienced), his seizures were gone. He had his second birthday seizure-free!! And being new to this world, and naive, we thought he was cured. We thought he would re-learn all that the seizures had stolen from him and we would move on with our lives as originally planned. We were told that if the seizures stayed away for 4 months, we would know that it had worked, adn they probably wouldn't come back. So, you guessed it: 3 months, 3 weeks and 4 days after his last injection I was feeding him breakfast, and I saw the TINIEST little head drop. It was such a nothing event, after his 300 seizures a day that slammed him to the ground over and over, that he was having before the treatment... But I KNEW. I knew that "seizure-face" SO well by then. My heart dropped into my stomache.
My husband and everyone convinced me that I was seeing things. No one else saw anything amiss. I even started to believe I had imagined it... But 4 days later, on my parent's back porch, Elijah's arms jerked out, and his head dropped in that characteristic salam seizure 4 times in a row.
My parents saw it. My aunt saw it. They all just looked at me like they were scared I would break... I scooped him up in my arms and held him so tight, but it was like trying to hold onto sand. He was gone in his "seizure-fog" again. The next day we were at the hospital starting the steroids again.
Only 3 weeks after that steroid treatment the same thing happened. I saw a tiny tiny head drop, but I saw 3 in a row, so there was no room for doubt.
That's when we switched hospitals and spent a year trying every medication out there before going forward with brain surgeries 1 and 2, (at which point the seizures were near constant and his life was in danger again)...
During the 9 months that followed, we again naively thought he was cured! We thought they took out the "bad brain" so the seizures couldn't come back, at least not the same seizures!! We were overjoyed and it was 9 months of absolute BLISS.
Then one day I was holding him in time out, while he tried to bite and kick me. I was a few inches from his face trying to get him to make eye contact so I could talk him down, and for just a brief second his eyes slid out of focus. His head nodded just a fraction. i let go of him like I had been burned. The shock was like nothing else. I called Matt at work sobbing and described it to him. And he refused to believe me. said that I must be wrong. he probably just looked down and I thought it was a seizure...
but, again, 3 days later, in Canada at my brother's wedding all of us saw him have a batch of his classic, brain damaging, progressive, eventually life-threatening seizures...
It happened again after the naturopath got his seizures to stop for another 9 months. I saw it first, my husband was in denial, and then there was no denying it.
That's WHY Elijah's seizures, even though they are so small, are SO scary. They get more and more frequent and bigger and bigger until they are everything. Every waking moment.
...And here we are. 9 weeks post-op form brain surgery #4 and I've seen one TINY head nod. One that I NEVER would have noticed if I hadn't been inches from his face, smiling at him and looking RIGHT in his eyes when it happened.
My husband, who cried when I told him, has now retreated into complete denial, and refuses, AGAIN, to believe what I saw... Not that I blame him. I have doubts myself. maybe I'm just SO traumatized and scared, knowing what it might mean if they come back again. Knowing how low we are on treatment options. Maybe I saw something that wasn't there. I've never been wrong before, but that doesn't mean I'm right now, right?
Or maybe it was a seizure, but they wont progress after this last brain surgery. Maybe he will have a couple every now and then, and that will be it. Maybe that was just one last hoorah for his seizures, and now they are gone for good....
But damn. I am having a HARD time staying positive right now. I'm telling everyone in the world that he is great. He is fine. I am fine. We'll be fine, (read: F.I.N.E. F'd-up. Insane, Neurotic, and Emotional)...
But the truth is that I'm terrified. my neck is so stiff and tense it just burns all the time.
I LOVE having Elijah back! I can't STAND the thought of losing him to his seizures again. Not this quickly. Not EVER. We are having SO much fun! He is always giggling about something! He is LEARNING again! I can't describe how amazing things have been with the seizure gone these last two months.
I need to find a way to stay positive and to BELIEVE that they aren't coming back... And I need to figure out how I will survive the blow if they do...
The waiting is killing me... But if they are back, I don't ever want to know. I just want to freeze time. Stay at the park we were at today. Laughing on the swing forever and ever and ever...
Comments:
My hearts breaks for you. Prayers always for all of you.
My heart breaks for you..I have never had to deal with seizures but I do know how horrible it feels to watch your child suffer from something you pretty much have no control over. I have a daughter that was just diagnosed with her 3rd brain tumor in 7 years...It is scary every time we think we have Finlay beaten the fight with cancer it seems a new one shows up on her scans. My thoughts and prayers are with you and your family
I'm sorry. I will be saying a prayer for you all.
im so sorry, i wish little kids did not have to go through all this stuff
Update please?? Hoping you have not seen anything else..
~thinking of y'all~
Already a member? Click here to log in
Oh Elyssa. I have tears in my eyes reading this. Sending you BIG HUGS and PRAYERS and POSITIVE THOUGHTS..
- peasntatersmom
Message Friend Invite