Thursday, April 16, 2009

Ramblings from home

I am listening to Ta'ayush as he/she? chirps from her cage. The laundry is still going, Austen is reading Plato's Republic (for co-op next week) and Cody is filling out forms for his 1st job at Flying L Water-Park. Yay Cody! Rumor has it that this kind man is hiring Cody with the understanding that Cody will be leaving for a week in May and a week in July. This gentleman is also willing to accomodate Cody's soccer schedule when needed. What more can Cody ask for? Brian and Angee are getting ready for Prom. It is Angee's senior year..and Brian's one and only Prom. (He skipped the one at TAMS last year..he and Angee were speaking at a dental conference that weekend). There you have it. A summary of last weeks highlights. Now the not-so-exciting details.
It is the week following both the Passover and Easter. We were pretty busy last week preparing for and enjoying family/friends for both occasions.

Here are some plants I purchased...they are Austen's "National
Youth Gathering" fundraising plants. The ELCA holds a national youth gathering every 4 years. This summer it will be in New Orleans..with the theme being "Jesus, Justice (compassionate justice) and Jazz". I hope that at a time in our culture when many confuse vengance with justice, some youth will become more aware of what compassionate justice can look like. The kids will spend each day with study, worship, service (New Orleans still needs a LOT of help) and music..like really good jazz. So..these plants..both on my porch (above) and my deck (below) are my contribution to this trip. I hope I don't kill the plants too soon!

We did have one unexpected surprise on Easter morning. It was
the beginning of Austen and the Case of the Mysterious Rash. Austen woke up with his eyes swollen, face and neck red. We assumed he had gotten into poison something or other. There are 180 acres in this sub-division..and he had been playing in all 180 acres the day before. We gave him some Benadryl, covered him in Calamine..and with all the sympathy in the world..asked him to straighten the living room while the rest of us left for church. He grinned and said, "Oohhh.."
The rest of the day was pretty routine. Guests came, we had confetti wars, eater egg hunt (and I found a snake!), kids played in the river..and Austen ran around covered in calamine. The family simply refered to him as "the phantom"..like "Phantom of the Opera". That evening he seemed to be getting worse. Aunt Sandy thinks he has eaten something...but what? We go through his diet for the past few days.."did you eat the 'mortar' at Passover? The cranberry Sauce?" "No.", he replies, "Aunt Barbara told me everything that had berries."(austen is extremely allergic to berries) . We give him more Benadryl and have him soak in an oatmeal bath.
The next day he wakes up worse! We decide it must be some fried apple pies he ate. After all..you never know what they put in those things..there must have been some berries. The doctor concurs. Austen receives a shot, prescription allergy stuff, etc. We decide since Austen is not contagious he can go to the water-park with the rest of the co-op kids.Yes..the same water-park Cody is at today. Mistake. By evening, Austen is miserable!
We keep him home Tuesday. He gets worse. We return to doctor yesterday..not a clue! She is concerned..we up Austen's steroids, and they send him to the lab for blood work...and then it happens. Austen has a seizure.
It has been almost 2 years since Austen has had a seizure. He has been off of anti-convulsants for 4 months now..he has been daring to dream of possibilities in these past 4 months ..pilot license, drivers-license, etc.. possibilities that he would only whisper of before. Maybe he can be a missionary pilot? An airforce chaplain?
Austen seizes with the needle in his arm. We all realize how disappointing this will be for him..as the nurse takes the needle out of his arm (while he is still out), a single tear falls down her face. Austen awakes..a tear falls down his face. They look at eachother and she gives him a hug. "It's okay..baby", she says."I'm so sorry." It is understood that she is not apologizing for needle in arm..she means the dreams, the hopes, etc. Right then and there my heart melts..it is one of those "outside heart" moments that my friend Carol just wrote about in her blog at mySA.com. Here is a link. http://blogs.mysanantonio.com/weblogs/visit_the_can/2009/04/scattered-hearts.html
In the past Austen's triggers have always been needles, lights and lack of sleep. Now we know those triggers are still there. We go back to the doctor tomorrow to see what happens next. In the meantime they continue giving him meds to ease the discomfort of this ever-spreading rash and contact his nurologist about the seizure. Austen is in much better spirits today..and says, "Well I can still run a cyber-cafe..or be president" (grin). My mommy heart is full of pride for the resilience and humor of this precious child. My youngest son..who is (gasp) almost 15 now?
I continue working at the Club. We seem to have an extra amount of angry/hurting kids this Spring. I try to feed them, play with them, listen to them (and their families) and just be there. We are in the midst of developing a mentoring program. Hopefully we will have this in full swing by summer..so we can have one adult(volunteer or staff) consistently developing healthy relationships with 4-5 Club kids over the course of a year. As a staff team, we have decided that this (meaningful relationships) is the best gift we can give these kids for the long-run. So..if anyone is interested in donating 2 hours a week for a year....let me know:)
All for now.

7 comments:

Sardine Mama said...

Austen is an amazing young man. And you're an amazing mom.

Dawn said...

Oh, hi, I just got here from the comments over at Sardines in a Can... and my heart jumped into my throat when I read the word 'seizure'. My son has epilepsy and I can't even really continue right now cuz of all the feelings your post stirred up in me. ((HUGS)) for you and ((HUGS)) for your son.

Gosh, I'm just so sorry...

grillledcheesechic said...

Dawn..glad you posted. We used to think the advantage of Austen being diagnosed with epilepsy young in life is that he had years to figure out how to create a fullfilling lifestyle for himself. I think we had this unexpected glimmer that things would be different..that he could take bigger risks..and then it was gone. Austen put it best himself. I don't mind the limitations..I just need to know what they are. Otherwise? My life is like a yo-yo..and I don't know what direction to dream...and yes..Austen IS a dreamer. ((Hugs)) for you and your son as well.

Dawn said...

Yes, I understand. My son is 7 and he was diagnosed at 4. The meds affected him so terribly. Right now his seizures are controlled by doing low carb. I know what he means about dreams. My son isn't quite old enough for that sort of awareness but I am. I remember telling my SIL, when things were at their worst, that I didn't even know I had dreams for my son's future (I thought I wanted him to be happy, only) until the possibilities were cut to almost nil. And then we began worrying who would take care of him when we were gone. And we go through our days normally but you can't ever really let yourself relax, can you? Cuz you never know when they - the seizures- might come back.

Bless your son't heart. Such a burden for him to carry. Have you seen any more seizures since the needle incident?

grillledcheesechic said...

Nope. No seizures since...3 years ago, he was having almost 6 a day..then? nothing. Thankyou for asking.
Austen's spirts are back on the rebound. He is spending tomorow repelling! You know the saying; "better a broken arm than a broken heart." He's scaring me to death!:)

grillledcheesechic said...

Let me rephrase that..nothing..until the needle incident, that is.

Dawn said...

Well, then, you're an inspiration to me as a mom, letting hom go repelling. Good for both of you. ((hugs)) and prayers that this seizure was a one-time thing and doesn't mean a 'relapse'.

It seems you live near San Antonio. Perhaps our paths will cross one day and you'd be so kind as to let our sons be introduced.

Peace,
Dawn