When will I wake up from this....

Saturday before last, I went to the ER and I was told I had a "complex migraine," severe dehydration (still not used to Vegas heat, but carry water with me all the time now), and a severe flair up of my fibro. I was feeling a little funny on Friday afternoon, but I still pushed myself to go to work. As I was tripping over myself at work, even my co-workers noticed that I wasn't well. But still, I pushed forward. Saturday came and I couldn't even get up off the couch, my depth perception in my vision was off. I felt like I had one hand over an eye when I was trying to look at something, yet I had both my eyes open. Not only that, but my equilibrium was off. I had my son release my shift online (because we had online scheduling at Outback) saying that I was going to the emergency room. The hospital drugged me up and sent me home. The next day, I went to check too see what time I had to work, because yes, the glutton for punishment I am, I was going to go to work when I noticed that my schedule had been removed.

I sent an email to the bosses and told them what happened and that I had guessed that I was fired. The owner said that I could come back if I wanted. The other manager (who creates the schedules) wished me luck in whatever I decided to do. I wrote another email to the owner and told him some things that were going on with my schedule and didn't get an email back, so there went my job...Now I'm looking for a new job and have a wonderful prospect at Chili's, I just hope I get it.

As far as my little man, he neph said that it doesn't look that good and this Wednesday we are getting a kidney function test done to see exactly where the damage is. The thing I like about this neph is that this time they are going to sedate Little M! Yeah for that, but then I have to watch him for a couple of days afterwards since they need to cath him for that test. The time before last, when they cath'd him, I had to rush him to the hospital because he stopped peeing completely. That's when they put a cath to stay then he had surgery in his bladder and the docs put a tube coming out of his bladder it was collected in a urinary bag (suprapubic tube). That was a nightmare of a year!

It's so hard to keep thinking positively sometimes, but I force myself to. I do it, not for myself, but for my children.

We also had a fiasco the first day of Kindergarten with Little M because his pre-k teacher didn't let the K teacher know what is required for Meryck and I had to give her a crash course in it. However, what good did come out of it, was that I called the principal directly and told him what was going on. Next thing you know we had a 504 meeting planned within 2 days. What's even better is that we addressed both of my children and got both of them on a 504! See a silver lining in everything!

Things can get rough, but I will persevere! I will push forward, not matter how much pain I am in. I need to. My children (and now new puppies) are the driving force behind my persistence and determination....

Did I mention my desktop crashed??? Yeah, well, what can you do about that except get a new one. When that will be, who knows.



Stefanie

Not such good news....

So, today we went for an ultrasound for Meryck's kidney and bladder. Let me give you a little insight as to what I saw...
Here is an ultrasound picture of his kidney in April of this year:



Here I have tried my best to recreate the new damage on his kidney from the ultrasound taken yesterday. (The ultrasound images from yesterday are on films instead of cd's like the one that was taken in April, so I doctored it as best I could to show the difference.)



We await the doctors visit next week for him to see what our next steps are going to be.....


Stefanie

Here we go again...

Here I go again...feeling down. What's up with that?? I'm usually so upbeat and always a happy-go-lucky kind of gal. Maybe it has something to do with the fact that the school took the IEP off of Little K. That was a hard blow. He's so smart and although his autism is on the less severe side, it has taken a LOT (and I mean a lot) of work to get him where he is...will taking his IEP away slow down the progress?? They give him a donut to sit on and a band for his chair so he is comfortable (he has this thing about sitting on a hard floor, he just won't do it). They say they won't take it away, but without an IEP, how is the new teacher going to know he needs them, or how are they going to justify letting him have them. The good news about him is that they are going to suggest that he go in to a super advanced class for 3rd grade, but that's not until after next school year. He's so intelligent, it's almost sick. He is 3 points away from being considered a savant child (and I think he was just tired of testing when it was administered to him). His school counselor said she had never, in her 15 years of being a school counselor, worked with a child or known a child with an IQ as high as Little K's.

Maybe it also has to do with my little Meryck...an ultrasound is coming up on Tuesday and I am super nervous about it. The doctor's said that if his hydronephrosis stays the same or gets worse, then we may be looking at another surgery. He has these dark, yet red circles under his eyes, which also makes me very nervous because I know he doesn't have allergies. We are testing him for cancer. It's not uncommon in Prune Belly children, it's actually more prevalent. He's not drinking enough, even though I push fluids, he's not peeing enough, even though I constantly remind him too.

Then there's the teenager. I just don't know what to do with him...I love him so much, maybe a little too much... My DH says I'm too soft on him, but I know I'm not. I think he feels lost. We moved at the end of his Jr. year in high school, he doesn't have any real friends out here, he sits in his room all the time on the computer and I have to constantly remind him to do his chores. He's not eating well, I just feel in my bones something is up with him. This is the child I grew up with, the child that has taught me so much, my rock, my one constant. I want so badly for him to talk to me, and sometimes he does, but sometimes he shuts me out and it hurts. I know it is typical for teens to shut their parents out, I get that they think that parents' rules are lame, I remember being a teen myself, but I've always striven to be a better parent than my own parents. I want more for my children.

I know there are so many other parents out there that have special needs children that have much harder lives than mine. My heart goes out to all of them. I'm told all the time how strong I am, but really, am I? Many people tell me what a great mother I am, but why is it that I always feel like I could be better? Some people tell me they admire me, but why? Because I do what I have to do for my children and family? Wouldn't any other mother do the same? What is there to admire about that?

In trying to get out of this funk, I've decided to list a few things my kids have taught me and some things I am grateful for, so let's see what I can come up with...

1. My kids have taught me patience, and a lot of it. I used to pray for patience, but I don't do that anymore. Why you ask? Because every time I've prayed for patience, I get a lesson from God in patience. Now I ask for assistance in getting through a situation instead.

2. I have become a stronger woman. I stand up for my children and am their voice when they cannot be. I educate myself so that I know almost as much as the doctors so they cannot walk all over me or use my children. It is because of my children I am strong and it is for my children I am strong.

3. Perseverance. When I feel the options have run out, I am always looking to find more options even if I have to think "outside the box." I plow through the things that must be done, regardless of sleep, food intake, migraine, headache, loneliness...nothing matters but reaching the goal, whatever it may be for that day.

4. Humility. There are times when I need help, emotional, physical, mental...When I had my hysterectomy in 2005, I could not work for 3 months, my job laid me off and I had 3 kids to support by myself. Not to mention it was near Christmas. I went to churches for food for my children, had a now ex-friend move in with me so the children could be cared for (long story not worth getting into as to why she is an ex-friend). I made sure my children were cared for by just about any means I could.

5. Faith. Through this all so far, my faith is unwaivering. I do not ask "Why me?" I know why me...and this is why for any of us that have special needs children - You never will know true joy unless you know sorrow and you never know sorrow unless you know true joy. I know with all my heart that He will provide, no matter how hard times have been or will get. Hard times will not end for me, but I know He will be with me every step of the way.

6. Love. I love my children. My children love me. Just as my husband's job has to come first because he is military, so my children come first for me. They have to. Without their love, I would be lost. I am a mother, a true mother in all sense of the word. Being a mother is what I do best, what I am meant to be. Caring for my children is my life, sometimes to my own health's detriment.

7. I am grateful that God has loaned me my children. I pray every day that they will outlive me and they will grow up to be wonderful, caring men.

8. I am grateful my children picked me to be their mom. They must have known I would take good care of them, or God would've had them pick someone else.

9. I am grateful for a simple smile on my children's face.

10. I am grateful that Meryck hasn't had to have any surgeries in a little over a year.

11. I have learned to cherish every moment with my children. Not just because Meryck is sick, but also because I look at my teenager and wonder where the time went.

12. I have learned that it's the little things that make them happy. I took them to the store the other day to pick out a paint for their rooms and Little K picked the color for the little ones' rooms. It is a beautiful blue. I won't forget the smile on his face when I thanked him today for picking such a beautiful color.

13. Teaching an autistic child to tie his shoe is not an easy task.

14. I learned how to wash Little K's hair so it doesn't hurt his head (he is sensory sensitive and a basic wash bothers him).

15. I'm thankful I try to give my children as normal a life as possible. I do not use their special needs as a crutch, nor do I allow them to use it as a crutch either.

16. I've learned that being a mother involves a lot of teaching. Teaching how to take a shower without help, how to pick up a mess without making more of a mess, how to wash their faces properly, how to brush their teeth, how to look be optimistic.

17. I've learned how to speak a whole different English. I taught myself to speak positively, in other words, I don't ask them to stop unwanted behavior, I tell them to behave properly.

18. I've learned to practice what I preach. I use manners so my children will do the same naturally. I do not curse in front of the children because I don't want them to curse more as adults.

19. I've learned not to make promises unless I can deliver.

20. I've learned to point out more things my children do right instead of only seeing what they do wrong.

21. I've learned to look at the bright side of everything. There is always a silver lining, sometimes you just have to look harder than others.

I could continue, but I feel a little better and I really want to go spend some time with my teenager. I have a gut feeling he needs me, so I'm off. Thank you for anyone reading this rant of mine. My upset cannot shadow my children's needs...Things will get better....one day...

Stefanie

Quote of the day:

"Whatever you give a woman, she will make greater. If you give her sperm, she'll give you a baby. If you give her a house, she'll give you a home. If you give her groceries, she'll give you a meal. If you give her a smile, she'll give you her heart. She multiplies and enlarges what is given to her. So, if you give her any crap, be ready to receive a ton of shit."

(I'm not sure who the author of this quote is...but it surely holds true in my household!)

Stefanie