Is it hard for you to leave them somewhere?

[shanunlee]

I am still not feeling all that great and actualy plan to cook tonight (haven't done that in MONTHS-other then just heating something up).

So, I dropped Julia off at choir and came home. I almost cried as I was driving away. :( With the traffic being so bad, it takes me an hour to get to choir. Now, my husband is about 5-10 minutes down the street from her (or I wouldn't have left her) so he can get to her if needed. I am just on edge since we have reached the time frame for her to have another sz AND she has been acting kind of odd all day.

Every week I leave her for an hour and a half at dance class and think little of it. It would take me about 10 minutes to get to her there if needed.

I asked my husband what my problem is and I think he nailed it. He said it was because she has had a sz at choir. I think that loss of control on my part has something to do with it as well. IF something happens, Jeff goes to her and I don't.

Do ya'll do this?

[apmom]

(((((((((Shannon)))))))

Yes, it is really, really hard. Even when I'm wishing I had a sitter, it's more so I could be a short distance away without her. I think part of it is homeschooling, we're very used to watching E-V-ER-Y little blip and blink.

I'm glad you did it, though. It's good for you, and good for Julia. Your dh is within a reasonable distance in case of a problem.

I hope you're making a dinner that you will enjoy too. :)

Holding your cyber hand, and holding my breath with you. Let us know how it goes. *forgetmenot

[shanunlee]

I hope you're making a dinner that you will enjoy too. :)

Holding your cyber hand, and holding my breath with you. Let us know how it goes. *forgetmenot


Thank, Anne. She is home now and I worried for nothing.
I am making our favorite dinner. It was originally a Justin Wilson recipe made with pork chops, but I prefer chicken breasts. I brown the chicken, make a roux and let it get REAL dark, season it up good and make a thick gravy. I pour the gravy over the chicken and then add sliced bell peppers and onions. Cook, baste, cook, baste, add sliced tomatos and cook some more. Make some rice to have with the gravy ;) and dinner is served. In my book, the bell peppers, onions and tomatos count as the fruit and veggie serving. That makes more room for the good stuff. :cool:

Wish I could share with you all. :D

[apmom]

In my book, the bell peppers, onions and tomatos count as the fruit and veggie serving. :D

I agree!!!

Onions and garlic are great for cholesterol, peppers have fiber and antioxidants, tomatoes are Vit C. Not that I've put thought into this ;)

Thanks for letting us know Shannon is home safe and sound. I was checking for this. Enjoy dinner! *heart

[Guitarmom]

The problem is you are a loving mother who has the imagination of all the "IFS"....they race through your mind!! SOmehow we think that IF ONLY I am there NOTHING can be fall my child and IF they it DOES< I will be there to care for her properly!!! WRONG....the day after my Sam was diagnosed God allowed my OTHER CHild, Anna to fall entering school and WHAM her head on the corner of the curb concussing herself...NOW< this was HIS Sign that SHOULD have told me, in a loud CLEAR VOICE.... no matter WHAT that neuro said in his NO life (no climbing, no swimming, no bathing alone, etc) I could NOT prevent harm by HOVERING......BUT did I LISTEN>...I was AT Anna's side and yet this STILL happened and SHE was not the one who had just been diagnosed.....a teacher even said as we tended to her "AT LEAST this was not Sam...." that did not go over well with Anna......


((((Shannon))))) this is SO normal to want to hold your breath as you leave them off, especially since you do home school her and do not leave her often and it is an hour away....it is SO hard!!!

I applaud you for DOING it.....We are almost at the 9 year point and it is STILL hard for me.....and the fact is, I have allowed him to do things and seizures HAVE occured. you know what? people have come through for us and he did ok? I have learned that I had to trust....it has been BONE ACHINGLY hard to do this. They have NOT done it MY way at all times. It has not always been smoothly done....but he was OK (fortunately!!!)

It depends on the seizure type of COURSE and how well the control is whether you can trust......

hang in there!

Ginny

[shanunlee]

Oh, thank you for the hugs and encouragement, Ginny. It is VERY hard for me to let go. So far the only sz I have not been with her for was the first one that happened in the Dr.'s office, but I came in the room in the middle of it and was there for her. She always wants Mama and it would make me sick to not be there for her.

I scare myself sometimes because I love my kids so much, perhaps too much. After Anna-Catherine died I became convinced that something was going to happen to another one. I guess it was because he was the "baby", but I was certain it would be Braeden and if he got a little fever I was terrified. I grieved HARD for a year, and then after I got through the initial due date and the first "Born to Heaven" date I slowly began to resurface.

Then our state gets hit with Hurricane Katrina and let me tell you, you cannot work with people who have been through such tragedy without it making a HUGE impact on you. Somehow or another I ended up "in charge" of the free store at my church and I through myself into it with a passion. My husband would come to pick me up in the evenings and force me to go home. I put in 3 weeks of 12 hour days. Whenever people would come to the office with a truckload of donations, I was called to greet them and decide where to put all the masses of stuff.

We had evacuees come for a meal and some bath products, and then they would come back the next day to WORK in the serving line. I worked with a girl who had been wading through the water with her grandmother who had surgery 2 weeks prior (she still had bandages on and was walking through that nasty water with her wound exposed!). This girl held her entire family together until they got out and then she fell apart. She couldn't speak, and if you barely touched her on the back it would literally hurt her cause she was so tense. The most memorable was a man and some college boys who drove all the way from California. He was a big real estate agent who had been watching the news clips of New Orleans when he was overcome with the need to do something. He took up a donation (a HUGE one) and brought his college age son and friends with him to teach them a thing or two about ministering to others. He arrived at our back door asking, "What do you need? I am going shopping". What do I need? Let me give you a list. Deodorant, pillows, Bras, Panties and socks!!!!!!!! My teenage son came to help one night. Certain items were kept behind a partition so people wouldn't go crazy and grab it all up at once. It broke my heart to watch a teenage girl ask my son for tampons without even seeming embarassed. She was so needy that it didn't even occur to her to be embarassed!

I have NO IDEA where all that came from. It was on my heart for some reason, so there it is. One of the Red Cross counselors (they were tending to us volunteers as well....it was a seriously emotional thing) told me that "years from now you will be standing in this gym watching a basketball game, and suddenly your mind will be flooded with memories of when the meal line was over here, and the counseling table was over there....." I guess he was right. Perhaps somebody here needed a word? I don't know.

Anyway, after all that ended (we had to close up "shop" to make room for a nursing home to set up temporarily during Rita!!!!!) I tried to get back into some kind of normal life. We started school in October 2005 and the next couple of months went rather smoothly.

WHAM! Seizure in January 2006. My Daddy had Epilepsy since he was 17, so I shouldn't have been taken off guard as much as I was....but I was! Then Daddy was dx with cancer last September, gone by May, my oldest graduates and is off to college.

No wonder I am sick right now. Just how much can a person take???

Oh my gosh! What a big whiney baby I am! :(
I felt the need to tell ya'll what I have been through the past few years.

I really think that it is a great testimony to how much God loves us and will hold us up when we cannot do for ourselves.

As to what kind of seizures Julia has and whether I can trust others.....if you are still reading this giant novel I wrote....there really isn't anything anybody could do anyway. The big thing is being there for her when she regains consciousness.

Julia's seizures are CP that generalize so quickly that there is not time to "prepare". She just stiffens up and falls. The silver lining for me is that they are short (usually less than a minute) with mild post ictal effects. What scares me most is her hitting her head on the way down. She has been lucky so far.

I think I need to just go cry for a while now. Thank you to anybody who has been hanging in there reading this. It has been cathartic for me to write it.
Too tired to check for spelling errors and typos.

[mjcolenc]

I know what you mean. It was hard for me to let my son go back to an AWANA meeting at church because that is where he had his first Tonic-Clonic.

By the way, it was a breeze to read what you wrote, and I applaud you for what you did.

[LIZARD]

Wow...I talked with my mom for an hour yesterday, and we were talking about this. She said when I went off to college, even though I hadn't had that many (GM) szs (we didn't know what my SPs were until I was out of the house), she said she didn't get a decent night's sleep for months after I left! I had no idea. :( I s'pose I should have expected it, and I'll let y'all in on a secret: we kids really do think our parents fuss over us too much, usually because we can't appreciate the seriousness of the situation as well as Mom's unique emotional connection. ;) She said she's so glad that I insisted on going off to school because it forced her to see me as a competent adult and not the helpless "sick" child she had always seen when she looked at me. I know she has a hard time with this, but for me, the best "seizure scenario" is at home in bed with hubby nearby (no kids :eek: ), followed closely by being alone in the house. In fact, a few years ago, when I had a sz, I realized Drew was at ESY, Caren was at her friend's house, and hubby was at work, and I was relieved to know I was by myself. I got cleaned up, changed into my jams, crawled into bed, called hubby, and went to sleep. He came home and took over, and no one had to be put through anything. I know y'all think that's twisted, but as an adult, I think it's a common way of thinking, even when our families "know the drill."

LIZARD :)

[crickets mom]

I get the not wanting to leave them thing. Even though ds hasnt had any tcs his atonics and absence happen frequently during the day. He came home yesterday with a field trip permission slip for the same day his sister has her appointment to get her 1 year shots. So I talked to my husband and he's going to take off work so he can go. Then I emailed the teacher and told her that ds could go only if my husband could chaperone. Its not that I dont trust her but with 16 other kids to watch I know it would be impossible to watch ds closely enough.

[suzyq63]

Yes, it can still be hard even after 10 years; but it does get a little easier as time goes by and especially if the seizures are pretty well controlled. Alison is 10 1/2 and has only ever had partial seizures, so we do have it easier. I expect that I would have a lot more difficulty if we were deaing with TCs.

Even though we may not be able to control everything, because we spend so much time with our children we are able to pick up on subtle things that no one else would notice. That makes it hard to leave someone else in charge.

I am daring to take a trip in a couple of weeks to celebrate our 25th anniversary. It's a 10 hour drive; and I'm hoping and praying that everything goes smoothly while I'm gone. My mother will be staying with the kids while we're gone. It still makes me a little nervous to go and that's why I preferred to stay within driving distance of home.

Hope you are feeling better today.

Paula

[CasaDe]

Leave them?

Who, me?? :eek:

[nick's mom]

i have to admit i have more trouble with this than i thought. the main time i'm not with him is when he's at church or when he does something with a sibling or his dad. i know dh will be careful (maybe too careful) and the sibs are pretty good too, it more church, in youth group, that i worry. the kids are all so much bigger than he is (even our 5th graders!) and they sure get wild. nick is pretty sedate and tends to sit in a recliner and watch the madness, but i worry he'll jump in one day. he's all boy but his body is so fragile. sigh.

[jennifermichael]

I'm feeling the same. Yesterday before Lily became ill, she rode the bus for the first time. She was too afraid to ride it to school, so I met her after school and showed her which bus to get on. She ran to it, got on and the bus drove away. My mom and I sobbed as we drove to try to beat the bus to the bus stop to pick her up. What nerds we are - but I do worry. She's not stayed over at a friend's yet - but I can see that is coming up in this new neighborhood. It's wonderful, but it's also very hard on a mommy's heart - especially when we have reasons to be worried about them.

Sending lots of hugs to everyone here.

Jen

[linniec]

Shannon,

Everyone else has said what I would....but so much better.

----You know, stirring roux is good for what ails you, isn't it?

Linnie
"beyond a wholesome discipline, be gentle with yourself" -Desiderata

[clinn3]

(((((((((((Shannon))))))))))) You have been though so much, thank you for sharing your story with us. You are amazingly strong! I think it is completely normal to feel the way you feel and it is great that you can recognize it.

I feel the very same way, I hate to leave her!

[shanunlee]

Thanks everybody! Dinner was great (if I must say so ;) ) and Linnie, I stirred that darn roux a LONG time.

Happy 25th, Paula. I hope you have a lovely trip with your hubby!!! *heart

Jen, that is so sweet....and a little funny.

MJ, no applauds needed. Everybody had to do their part, you know. Where have you been? You haven't been posting much lately.

Hey Lizard, thanks for posting on what the child's point of view may be. Too bad, she is getting over-protective mommy anyway! :)

And yes, I am feeling better. I had myself a good cry and then got over it. What else can you do???:confused:

[LIZARD]

Hey Lizard, thanks for posting on what the child's point of view may be. Too bad, she is getting over-protective mommy anyway! :)

Just so you're warned. ;) Just don't come crying to me if she tells you off for it! :D ;)

(((((((((((HUGS))))))))))))),

LIZARD :)

[CJ'sMom]

I totally get the not wanting to leave them, too. I can't leave Connor with my in-laws, because I don't have confidence in their ability to handle the situation. Other than dh, ds, and dd...my mom and dad are my biggest backups. I have two friends who will do it...but it scares them to death. And they don't sleep well when they are "in charge" because his nighttime seizures are so quiet, and subtle.

((((Shannon)))) It's hard to do it, but you've got to take care of yourself, so that you will be up to taking care of others. I have slowly learned to let some things slide...rather than make myself nuts.

Hope today is better.

[playful_ponderer]

:eek: I second Pam's words!

LOL.
seriously, your feelings are quite typical.

I actually had a much easier time leaving Robert BEFORE he had status episodes...that's a bit harder to leave in the hands of others :rolleyes:

At this point with his seizure type and frequency--he doesn't stay alone.
But we do have extended family he can go hang out with if dh and I have plans. But we aren't ever both TOO far away at the same time.

It's really a tough walk. We always aim for him to have more independence but it just isn't always a reality.

peace~

[daughterhasE]

I really feel like the school is on board now and they are almost as competent as me. So leaving her at school isn't hard. I do worry about her on PI days, but for the most part, I feel she is well cared for there and they have Diastat and a phone just like I do. ;)

But I do worry about playdates, birthday parties, church stuff. I go on all her field trips now that Joe is in school all day. We do home study for CCD so I won't have to go through the E thing one more place. The school stuff alone can be exhausting!

Oh and soccer....well, I DON'T leave her there. I stay there and watch every practice and every game so I am not good with that either! LOL. It has actually allowed her to have that one place to just be a girl who plays soccer and not the kid with E. The coach only knows she can't head the ball for "medical reasons" and I'm sure he sees the tremor... He also witnessed a bad migraine attack that sent us home from practice very early once..

Generally, it IS harder leaving Sophie than the boys. I worry about seizures happening wherever it is that she is...But I try to just plan, like telling a birthday party mom about her E and give them my cell and hang out at home until it is over..that kind of thing. I want her to be able to do it all and not feel smothered. But like Cindy said, sometimes we have to stay nearby and keep a closer watch. :)

Come to think about it, I worry about leaving Joe with his asthma sometimes, too.

I tend towards over-protective and I remind myself often that it is my job to give them wings (and sometimes a push!).