These past couple of weeks have proved to be very hard for our family recently. This last one in particular. When you become a parent it is weeks like these it makes you realize you have no idea what you were getting yourself into. Now as I am typing this I am finding it very hard to do so for several reasons. As most of you all know Nicole of course has been dealing w/ a chronic disease for almost a year now. I had no idea how much it was going to affect her mentally as well as physically. Lat year she missed so much of school that the problems that the girls were facing she did not have to deal w/. This year oh my gosh it hit her like a train. Girls can they be mean. There have been so many things going on and she has been telling me little things on and off and I have been listening but trying to let her deal w/ these problems on her own. There has been a boy who started just teasing her at the beginning of the year but now the teasing has progreassed to hitting and he even tore up a paor of her shoes. Now we have all gone through 5th grade and have all tried to prove our dominance in some sort. But on Thurs Nicole came home and finally told me that she just feels lost and that she feels as if she has no interest in school anymore. She is so angry. She is not the same person anymore. I just don't where to begin w/ all of this. She feels that her friends aren't the same anymore. And there have even been some comments made about her illness. Hasn't this girl been through enough? When talking to her teacher about this a comment was made that she thought that she did not think that Nicole was disliked. Is it because Nicole is tired of the stupid fights and does nto want to be a part of all of it? Is it because she does not fit in like that? And maybe I am stepping on toes here but I am so tired of all of this. I know that some of this cattiness happens and I expect it but I refuse for the bullying to happen.

Oh what a week. There have been so many things building up in my life right now. The anniversary of my sister's death is coming up, I have been dealing w/ some health issues myself, the normal things going on w/ Nicole & Danielle is showing some signs of struggling in school. There are so more on the list that for some reason I don't feel comfortable talking about. By Thursday I got frustrated w/ some things happening at work and I just lost it by the time I got home. There were tears and even yelling at Rick. I just could not wait for the week to end.So my mom called last night and wanted to know if I wanted to take the girls to a little festival that was going on here in town today. I just agreed thinking in my mind that I just wanted to crawl in a hole and hide from everyone and everything. SO we get up and go this morning. And what a surprise to see me enjoying myslef. And why? To see Nicole laugh as much as she did. I am sure by now that nost of you know that Nicole was diagonosed w/ Crohn's last Jan. Well she has been so sick to really be happy. This awful disease has consumed her little body. And then these nasty meds that she is on has turned her into a monster. You just never know what type of reaction you are going to get from this child. There are times that she will just break down in tears for no reason or she will scream at you, throw things, and slam her door. To see this child laugh and enjoy herself was the best thing that a mother can expirience. And I just hope that we will be able to see the old Nicole more often.

Is it just me or is my daughter improving?

Yes I know I just got done blogging about my youngest who has a form of Autism and her meltdowns. But wait there may be a light at the end of that tunnel. See when Danielle was first diagnosed she was also diagnosed with tactile defensiveness. She could not stand to be touched and she hated loud noises. One of my fears during school was the tornado drills and fire drills. I warn the staff at her school every year that she needs to be prepared before a drill. But later on I came to realize something,what if there was a real fire or real tornado? You cannot prepare her for that. So at one of the IEP meetings the subject of social stories came up. The idea about social stories is to talk to the person with Autism about certain things that could happen and how to handle them. So that day I go home and I discussed with Danielle about how she would handle this situation. J ust a couple of days ago I was dropping my oldest off back at the school we were confronted by the school social worker telling us that we missed all the excitement. Apparently there was a small fire in the lunch room and the alarms went off and the fire trucks came. I was told that Danielle was fine so I left it at that. I had forgotten all about it until I was putting Danielle to bed. But when I remembered I asked her how she did. Her reply was" Mom the alarms were so loud and so were the firetrucks but I just followed directions and things were okay." I could not believe what I was hearing. Normally when things get overwhelming Danielle likes to run away from the situation. But not this time. I continued with telling her how proud I was of her.This was a huge accomplishment. So even though I know there will be several meltdowns to conquer I can now be somewhat relieved that Danielle is thriving out in the world even when I am not around to help her. So for all those parents out there who have Autistic children you have to know that there is hope. With some help our children can live close to normal lives.

Meltdowns

Oh what a night. This week was the start of the new school year. Of course as for any parent it is always hectic. I on the other hand had some extra things to deal with. First of all since Nicole has Crohn's I had to go in and take care of some extra things at the school to make sure her medical needs are met while she is there. And with Danielle the beginning of the school year is always so hard on her. We always go in before school starts to meet the new teacher and have her get acclimated to the new classroom. So the first day goes well. But now tonight is a different story. I am already dealing with some medical issues with Nicole.I found out last week that she is iron deficient and they want to put her back on oral iron. Talk about frustrating. We have been down this road already and it did not work. She needs infusions again. The poor girl could not stay awake on the way home from school yesterday. And this morning I spent 30 min. trying to wake her and when she got out into the living room she fell asleep again. Then I get the girls home and Danielle is completely overwhelmed. She has a meltdown while she is in the tub.Rick and I spent about 30 min. just trying to get her calmed down long enough to wash. And then she would not get out of the tub because she thought we were mad at her. I can't not wait for this week to be over with. I prepare myself for this every school year but I am never ready for any of her major meltdowns. We seem to hear the same stuff from her. About how we are bad parents and how mean we are. I am physically and emotionally exhausted. The problem is that Danielle has learned to hold everything in while she is at school and is so overwhelmed by the time that she gets home that she can no longer control her actions. And at that point I have to remind myself that she cannot help it. Am I a bad mom for getting frustrated? We have plans in place for her on how she can cope with this but nothing for us. The only thing I can do is cry afterwards and pull myself back together when she is around again. So it is now all over and I just wait for the next one to happen and hope we can pull her through it again.

Okay so I am really upset. My oldest has been going through a rough summer. A girl in our neighborhood has been harassing her for the last couple of weeks. Now this same girl used to make fun of my youngest and I put a stop to it. We first started having a problem with her when she would come over to our house telling Nicole that her mom and sister left her alone and she did not have anything to eat. So Nicole was sneaking into our house and bringing her food. Well I felt bad for the girl but if she was really left alone I did not want to be involved in any way so I put a stop tp all of this. So now she goes down to another girl's house just down the street from us. Well Nicole goes down there to play also. When the mom is not around this girl continues to pick on her until Nicole comes home crying. I finally called this mom and she tried to assure me that none of that was going on. So just yesterday Nicole gets this email from another girl that lives nearby saying that she can no longer talk to Nicole because this girl giving Nicole problems told her the real truth of what is going on. So anyways I finally got ahold of this mom and she first apologized but preceded to lecture me on why my girls should not be on the Internet. Some nerve. Nicole has an email address through gmail. Now it took me awhile to let her have it but I monitor her and this is the first time she has ever had a problem. And why lecture me when this lady's daughter was over at the other girl's house when this email was sent and had something to do with it? And these girls are only 9 and 10 and they are already starting to go through this? So what next? I have been told by both moms that they tend to let their kids try to work out their problems with their friends and that I was butting in too much. I tried to let them work it out but when my daughter is being harassed that is when I draw the line. What is wrong with parents these days? I am far from perfect and I am not saying my girls are perfect. I know Nicole can be mean sometimes. But if I ever found out that she was harassing anyone that would be it for her. When we moved into this neighborhood 11 years ago it was not too bad. Now I can't wait to get out of here. I know that my girls have to learn to deal with things. But come on. Now I know why kids are being treated for depression at an early age. In a way I do feel bad for this girl because I feel she has been abandoned in some way. But that is no reason for her actions outside of the home.So I know I am going on and thanks for anyone who is reading this for listening. I would like other parents thoughts on this. Am I wrong for thinking this way. And what is so wrong for being overprotective of my kids?

I am not even sure what to think at this point.A great amount of relief is what I feel at this point. So I go to the doctor today. The only one that I have seen for the last month that I can truly say that I trust. And as she is looking at theses reports from Radiology she is telling us that none of them make sense. She excuses herself and is gone for like 30 min. When she returns she explains to us that she went to Radiology herself to look at the films and go over them with a Radiologist. It turns out whoever read them was wrong. Not to mention the nurse who gave me the results I was told should have never told me what she did. I was told she gave me results that were never okay ed by the doctor not to mention she failed to tell me they also found a cyst on my leg and that I needed to follow up with that. Well I can handle that. Talk about a scare. So I can take a deep breath and go on with my life. I definitely will take this a learning experience in many ways that is for sure.

It is now after midnight and I cannot sleep. I just got back from the store about 30 min. ago. I get my groceries every two weeks and decided that after I got the gorls to bed that I would go ahead and do that tonight. So I take my time and when I get home both of my girls meet at the door. They bothh say that they cannot get to sleep. And my youngest has a sleeping disorder. Therfore she takes medicine for this and now usually has no problem going to sleep. Now when my kids were babies my mom would always say "Don't ever be nervous around them because they can feel it and will be nervous also." So now do you suppose they feel how nervous I am now? Can they feel something going on? So 30 min later they are slowing trying to creep back into bed but yet not asleep. And I myself am slowly getting tired. As I am sitting here I just remembered I forgot the one thing my husband asked me to get while I was at the store. I have been scatterd brain like that for the last few days. Including locking all of us out of the house. So now that I have gotten that out of my system and am starting to wear out I think I will retire for the night and pray for the best tomorrow.

It has been awhile since I have posted something. Not sure why. The girls have been great. Been sticking close to home this summer. Just trying to pay off Nicole's medical bills. So mostly we have been going to the pool or the movies. Nicole has been doing great. The last doctor's appt. was fine. I hate taking her in to get her shot every two weeks though. She says it burns. She says it burns going in. She climbs right up there to get it done,takes a deep usually breath and usually some tears. After it is all over with she climbs back down and she is fine. We normally stop by the staff's favorite place Sweet Indulgence for some cookies to bring to them. But I was preoccupied today and forgot. See I have not been feeling well myself for the last three weeks.It started out the 1st week of July. I went in to Conv. Care for what I thought was a UTI. Turned out to be a pretty bad Kidney Infection. Was put on an antibiotic but was still having some pain after I was done taking it. My primary dr. is in maternity leave so I went in to see another dr. They had me give another urine sample which was negative and so she ordered an xray and ultrasound of my kidneys and pelvis. The same day when I got home the pain was so intense that I called to see if the results were in. They were but all were negative. The dr. told me to go into the ER. Which I did. There they ruled out almost everything possible. I was told that it was probably my Endomietriosis that had returned. Now ywo years ago I had a partial Hysterectomy to that. A year ago the dr. went in because I was having pain again but did not see anything. Anyways Iwas given a shot for the pain and was told to f/u with my Ob/Gyn dr. Could not get in with her but got in with a PA who was awful. She did a pelvic and said she did not find anything. She wanted me to get a GI consult. Well I was so emotional that I walked out in tears. When I calmed down I called the dr. that I originally had seen and she told me that she would like to see me again and made an appt with my actual Ob/Gyn dr. for 7/29. When I saw this dr. she ordered a CT scan of my pelvis and abdomen. I just got the results back this week and am devastated. They found some sort of mass on my ovaries and all of the symptoms that I am having are relative to Ovarian Cancer. After all that we have been through this year could this be? After losing my sister to Cancer almost 4 years ago could this be happening to me now? Is this a nightmare? I just want to pinch myself and wake up from this terrible dream. I called my Ob/Gyn nurse and explained the situation and the moved the appt up to tomorrow and I had some additional lab work that is supposed to also check for signs of this cancer. I am so on edge. Of course. I have not told my girls. Not sure I will even tell them for awhile. The day I came home from the hospital when my sister died my oldest hid from me. That was her buddy. And just waiting to hear what it going on. I know there is something there. I know I have to go through something. So what did I do today? Took my girls out and had a blast. We laughed and played. We had not had fun like that in so long. How's my husband doing? He is sicker than a dog. And my mom don't ask. After losing one daughter to Cancer what do you expect? My brother won't even talk about it. Even my sister's husband is taking it hard.But no matter what it is I am going to take it head on. Hopefully I will have the same strength my sister had.

End of school year

So the end of the school year is winding down and I have to say it has been eventful. I just went to Danielle's IEP meeting and it went very well. She has been going to speech since last year for communication and social skills, and she has been seeing an inclusion facilator on a regular basis along with the social worker. The Speech Therapist has decided that she will just see Danielle on an as needed basis next year. Danielle has met all of the expectation this year. There are going to be some changes though. Simce there is quite a transition from 2nd to 3rd grade Danielle will have some adjustments when it comes to testing since she struggles with articulation and she will be allowed extra time to complete all work since she gets distracted easliy and struggles with perfection. She will also get to use graphic organizers for ISAT testing and will be taken out of the room. They thought she might do well testing with Nicole sonce Nicole gets extra time on ISAT testing due to her illness and frequent use of the bathroom. Daniell's social skills have improved tremendously. I used to be known as Nicole's mom and that has changed completely.Danielle has some fears about next year but we tell her to just take one day at a time and we will get to each day as it gets here. As for Nicole she is right where she needs to be. She was ahead in everything but due to her illness she is now right on target. I will be working with both of them this summer. God has been good to us this school year and we have oversome so many obstacles.I am so proud of my girls.

Thinking of my sister on Mother's Day

It is Mother's day and I spent yesterday with my mom , husband and girls, and with my brother-in-law and my sister's little girl. It will be four years in October since my sister has passed and Kayli is looking more and more like her every day. We went out for lunch and to the park to fly kites and it was so nice just to see the thrre girls together playing and not having to think about anything else at this point. A couple of years ago there would have been tears and thoughts of what are we going to do without my sister and believe me we still go through that. Me especially since my oldest has been sick recently and my sister has always been my rock to get me through everything. I know it will be hard for kayli today as she will be going to the cemetery to bring her mom flowers and you have to wonder how a 6 year old handles all of this. But she just does. After all she was just 2 when her mom passed away. I remember all of times that my sister was sick and several trips to doctors and Kayli tagging along with us. And how Kayli would not go very far from her mother. I remember Chelle's last week with us. It was right before Halloween and we dresses Kayli up in her costume and took her up and down the hallways there in the hospital and how she had her picture taken with Chelle. Or how we can drive by the hospital where she passed away and Kayli can tell you all about it and what she was last wearing. It is so much for a little girl to take in. But she is so strong and doing so well now. And I thought we would have to remind her about her mom but she remembers so much. She will definitely be a reminder everyday of my sister who left this world at such an early age but accomplished so much before she did.

Now Danielle is much different. When I found out I was pregnant with her I cried. After Nicole was born Rick and had decided that we were not going to have another child until she was five. I did not know how we were going to be able to afford it. And then I cried because I felt guilty. Once I got used to the idea of having another child things were okay. At around 5 months I started to have back pain and nothing worked so I was put on pain meds for it. The following morning my husband woke up to me having a seizure. To make a long story short the med I was taking lowers the threshold for having seizures if you have a history of it. Which we found out later I do. Anyways after Danielle was born she was the total opposite of Nicole. She was a very calm baby. She started sleeping through the night when she was 2 weeks old, she never wanted to be held, she was scared of deep voices, and stiffened to touch a lot. As she got older we found out that Danielle had Asperger's which is a form of Autism. Danielle has been a challenge but a pleasure for us. She struggles in daily living skills and social skills but is very intelligent and surprises us every day. She is in 2nd grade this year and right now she is reading between the 7 and 8th grade reading level. She does struggle with articulation skills as well and that is something that the school is working on as well for next year. Danielle has taught me patience and she herself has learned to cope. When she asks if there is something wrong with her we tell her that everyone struggles with something in their life and whatever area they struggle in they just have to work harder at. But there is nothing wrong with her.

I thought since it was close to Mother's day it would be perfect to describe my two girls and how it all begin. Rick and I were married in May of 97 and I found out I was pregnant in July. We knew right away we wanted to have kids and yes I was a young mother. I was the first of my siblings to have kids and get married. My pregnancy went well for the most part even thought I gained lots of weight. I should have known she was going to be a handful from the start. She was always moving. The night I went into labor my sister and my mom were with me most of the time. I will always remember my sister dragging me around the block to get my labor going. Labor lasted for about 14 hours. But hard labor was really only about 2. Upon delivery she was screaming . Actually she was born in the hospital where I worked and the following morning I got a call from one of the nurses that I worked with in the nursery shesaid "Girl you are going to have your hands full." "We have been holding her all morning because she will not stop crying." She even cried all the way out of the hospital and all the way home. And you could never put her down. She always wanted to be held. Nicole has been always ahead developmentally. The day she was born she was holding her head up. At three months she was dedicated and I remember my aunt Mary Ann saying that day look at how well she responds to her name. At 4 months she was sitting up. At 10 months Rick and I were putting her between us and having her walk back and forth and that is when she took her first step. At 11 months she had two setbacks. She was put in the hospital for Rotovirus and another stomach virus. The doctors cannot say whether or not that has to do with what is going on now. And starting preschool was not an issue except for she did know how to relate to kids for awhile because she was at home with me for so long. but once she was there for awhile she was quite the social bug. She has always excelled in school and has a lot of friends. And she is quite the mother of not just her sister but of her cousins. She is always settling arguments and trying to be bossy. She can be the sweetest person but boy she can be quite the spitfire at times.