The Big "D" day

Well, the day is here and the roller coaster hit a huge high and low this morning. As many of you are aware, Austin was seeing a neuropsych to get tested for any learning disability or spectrum disorder. I have known for so long deep down in the mommy gut that something just isn't right about so many things when we talk about Austin and knowing the patterns from Henry, I just wanted a diagnosis finally. The school tested him about 2 years ago and said they found no suspicion of autism, that of course made me feel better and let me continue on thinking I was just paranoid and saw things differently since Henry was diagnosed. I had my meeting this morning and the Dr began going through his history from birth on and he began going over his testing results. Ok, average or above thinking with a low in math, no surprise here. Something with math that frighten my kids. Go figure. They are daddy's boys. Now to get to what I have been anticipating, with no surprise, AUSTIN HAS ASPERGERS!!!!! Wow, the Dr said it, he said "you do not look surprised", I said, I am not at all surprised with this finding. Finally an answer to it all. A sense of relief, it is finally put on paper in a report that I am not crazy with my thinking and that there is a real legit issue at hand. Finally, the hours of struggle with homework, mood swings, behavior issues, sensory meltdowns, attention issues, etc, all make sense!!!Happy I should be of course, I was right and it was finally proven. Well, this is the other part, I am saddened by this of course, I feel so upset and down while feeling relief all the same time. I know some will understand this. I now have 2, not just 1 son with Autism. Yes, there are so many great resources available and help in so many places, but I cannot help feeling like crap about this. I was watching a baseball game yesterday almost to the point of tears knowing my boys will never have that sense of normal. I know normal is non existent anymore, but some might know where I am coming from with this. I want to be that mom that relishes over perfect report cards, excitement over a double play, friendships with birthday parties, playing with friends at the park (not by self sitting on computer all day), less homework struggles, less struggles with everything involved with daily life in general. No,  I am that "other" mom, working overtime for the best in everything for them, battling homework every night like a war,  making plans around their moods, dealing with meltdowns of crying and yelling over a sound that isn't liked, etc. I know not much will change, but I will be able to get more help hopefully for him now. I can't help myself but to feel sorry for him though. He has not had an easy life as it is dealing with a chronic life threatening condition and now this to add to it. Maybe there is really something with his depressed moods and his feelings of life not being fair. He' s right, it isn't fair. I know there are big plans for them someday and I will always be there for him and the other two. I know God made them special for just who they are and that he will use the in a wonderful way. Now it's time to face reality and wipe the tears of pity and move on so I can advocate for them and provide the best for them no matter what the big "D" (diagnosis)is.

Where does the time go????

      Oh Henry, my sweet Henry. Where has the time gone? Sitting at your 6th grade graduation ceremony tonight just brought back so much emotion. I had to hold back the tears many times. The ceremony, you were so excited about the past week, put you into tears and upsetness. I am so sorry dear, you did not get any special awards like many of your friends. Some walked out with over 6 or more. I know you are so disapointed you didn't get any. I wish one day you will be able to see what I saw. I saw a little boy who couldn't talk, who bit himself and others, who needed so much therapy just to learn to speak and write with a pencil correctly. I saw a little boy who wasn't potty trained till 1st grade, who was in all special needs classes in the beginning years of school, who couldn't stand noises, lights, touch, or being hugged. I saw a boy who struggled every step of the way to communicate and to act like his peers. I your mom has seen the worse of times with you. Tonight, I saw all this along with the young man you are becoming. You have defied so many odds and look at you now. You have amazed all of us with your skills in areas you enjoy like technology, Boy Scouts especially. What ten year old goes away to Canada for over a week and has aspergers? You , my boy, you. You have earned 8 merit badges, not many can say that as a first year scout. You did learn to ride a 2 wheeler bike, you did learn to be more independent and even do the wash. Not many boys can do that at your age. We tried many things from karate, soccer, baseball, trumpet, you didn't stick with any of that. You will find you calling sometime. I know you will. I pray one day you will see all that you have accomplished instead of being sad because you didn't get any awards. I know it would have been nice to get something, but getting you to this point is more special than any piece of paper any of your friends got tonight. Don't get me wrong, I am happy for the kids that did get all the awards, but just seeing you be up there tonight is all the award I need.
      At some point through the ceremony, I did feel a little jealous. What do those parents do so different that I don't to help their kids get that accomplished? Sure I felt inadaquate to some extent. I guess I spent too much time getting you through rages of anger, therapy, extra drs appointments, etc. Just helping you to keep your grades up to where they are is plenty of accomplishment. You will understand one day that all the work you have been doing is grade level, mainstreamed, and you did great seeings you are still one of the youngest kids in your class. That is a big deal knowing some of the older kids that do not have your problems can't even do that well.  Well, Henry, I am so proud of you and I am ready to help you tackle thenext phase of your life, middle school. My prayer for you is that one day this will all make sense and that you will be proud of yourself as we are of you.

Challenges

        Challenges, they say life is full of them. I completely agree, but in my case I feel the challenges are more numerous. I know Ihave not wrtten in a while, but I feel I needed to get bcak on track to help myself cope with all that has been going on. Amazing how much can happen in just a few short months. I am ready for either a redo of this year or a complete new year to start. This year so far, I began with pnemonia, lost time at work, got behind on bills, lost my car, some degree of marriage difficulties due to finances, crazy time with college due to horrible teacher, Henry drama all the way across the board, and Austin drama to top the cake. I also have gained back all the weight I lost last year and have gained tons more grey hair. Just think, the year is not even half over yet. Almost afraid of what is in store for the rest.
         I try hard to tell myself along with many of you, that I am a good mom. My kids are fed everyday, they are clean, they do have manners on the most part especially to others, they are active, and smart in their own ways. I keep up with their scouts, softball/baseball, friends, meetings,homework, appointments, and everything in between. That is a full time job within itself then ad in school, 2 part time jobs, and all the house responsibilities. I feel that I do the job of at least 3 people most days. No wonder my eyes shut everynight before my head hits the pillow.
       Amazing to me is that how can I do all that and still feel like a failure to my kids. After the night I just had with Austin and his definant ways, I struggle with my thoughts of what I am doing so wrong where my kids do not respect me or anything I say. I feel all I do is yell and scream the second they walk in the door to the second they go to bed.I do not want to be that kind of parent. That is how I was raised and I see the damage it has caused and I feel it is a direct issue with my problems now. I cannot change how I was raised, but I can change how I raise my kids. Going through all I have been through with Henry this past couple months just makes so much mean so little. We came so far and now I feel we have gone back even further. Are his mental health issues a reflection of me as his mom? I try to convince myself no, but it is hard not to think that way. Is Austin acting out because I don't discipline the proper way? To some degree probably, but I cannot seem to find the right fit for him to discipline or to reward. He gets so bored so quick and it is so hard to find something that will work for all of them.Do I blame SaraAn for not wanting to come home? Absolutely not, I wouldn't want to come home to all this either. Poor kid, I feel she is suffering in her own little way. If it wasn't for helping coach her softball, I probably would have no time to spend with her. Will she grow up with resentment towards them or will it help her to be better understanding? Who knows.
         As you can tell, feeling a little discouraged about things lately. I know they say being a mom is the hardest job anyone can do and I am up for the challenge as I have the strength from God and tons of praying friends and support from all of you out there that take the time to read these posts. Without all that, I don't know where I would be right now.I pray that in the end all of this will just be a memory and when they are all grown up it will pay off when they are something big in society making for themselves.I know they will all have to work a little harder to get that success, but if they take after their mom in one way, I hope it is that they keep going with all the fight in them that I know they have. If they do that, they will turn out wonderful.   My ranting is done for the night.

ChChChChanges

       As I sit here finishing the last of my preparations to get the kids ready for school tomorrow, I sit and think about the summer. The summer began slow and ended so fast. I am glad it is over. Many things took place this summer, a lot of good. Austin went away for sleep over camp local and then 6 hours away in NY for kids with bleeding disorders. His first time away overnight in a camp environment. That is a lot of anxiety for any mom. Henry experienced his beloved autism camp again, cub scout camp, and summer school to keep his skills up for the fifth grade. \SaraAn also enjoyed some day camping expereince and ended the summer getting her swimmers badge at the pool. what a proud girl, she worked so hard for that. We ended the summer last week with the little ones and I in VT and Henry with Shawn for a couple days in the big truck out in Michigan and Indiana, he enjoyed the sights.
       This summer has also brought a lot of changes as in my title. The kids all had their birthdays, they made it another year and boy did I notice a lot of maturity especially in Henry and SaraAn. I realize more and more I do not have "babies" anymore, my "baby" is now six and entering 1st. grade tomorrow. Where did that time go? I think the hardest one I had to get over is Henry, he turned the big "10" and will be a 5th. grader tomorrow. That is a lot to take in especially knowing all we have been through with him over the years. I am so glad to see him maturing into such a sweet big boy. There are still a lot of issues on a regular basis, but we can cope so much better with them. My MIL had such a hard time at his bday party because there were girls there, in turn he went to one of their parties yesterday. Not going to mention one of the subjects brought up from that party, very funny though,especially coming form Henry's mouth. Austin struggled a lot this summer if he was not constantly engaged in some activity. He has been the source of a lot of grey hair lately. Met his teacher and had the big talk with the nurse the other day so that they are prepared to handle his bleeding issues. I think his teacher seemed a little overwhelmed. Just a little hard this year because he is going to a new school. I pray they are ready to handle him.
        As for the kids, I myself had a big change this week also. I am a college student once again. I began classes last week, and boy things have changed since my first time around 16 years ago.Everything is on the computer.  No more writing notebooks full of notes everyday. A huge realization came over me during my first class, children really DO kill braincells. It is going to be a lot of work on my part to get through this. I know I can do it, I can be a lot stubborn (did I say that), I guess I know where SaraAn gets it from. Anyway, hopefully that stubborness will pay off and help me get through this class. This whole thing has caused a lot of anxiety which needs a lot of prayer.
       I have been excited about the kids going back to school for a couple of weeks now, nothing better then the new backpack, sneakers, and clothes. I put the kids to bed tonight and prayed with them for a good year, new friends, and an open mind to learning new things. I know as any parent, my kids are smart and can do anything they put their minds to. They do however have to work a little harder sometimes to get the upper advantage. I feel I do my part to help them in everyway possible to be successful, now I am giving them over to their new teachers for the school year. I am sure I will shed my tears tomorrow as I walk away happy all at the same time. Austin and SaraAn are as happy as can be about going back as expected, Henry on the other hand is not, he is very worried about being bullied by the same boys that gave him problems last year and sent us into crisis mode with the school in the spring. Phone calls everyday from the school psychologist. I do worry about it, more so because I was bullied in school also and I do know how he feels, but Henry has a very hard time letting things go and ignoring. I want him to be successful this year as always, but I am already worried about his state of mind. I also know 5th grade is not an easy year in general. I will be praying for him extra hard tonight as I hope some of you that read this will also.
     I am calling it the night, worked this weekend, had very little sleep today and need to prepare my mind for tomorrow morning. Changes all around, some good, some not so. Prayers and thoughts to all the kids beginning a new chapter tomorrw or this week in school and to all the parents as they wipe tears of joy  for strength to see them off to a new year. Till next time friends, good night.

The Firecracker

      My Firecracker, my little girl SaraAn. Loud,full of excitement and surprise. As I watched her be rolled into surgery today and the nurse told me she would be OK, many thoughts came to my mind. I knew she would do great, just a simple procedure, but she was still being put under and having a tube placed into her throat, and she would have to monitored afterwards. Any parent, I would think would be a little anxious, maybe a little teary eyed as I was this morning.  She woke up easily, some pain as expected, and was ready to take on the world right away without looking back. That is my girl, she came out that way, and I thank God she is this way, even though her stubborness drives me crazy sometime. Without that fight in her, she would not be alive today.
       Tomorrow, my girl will be 6, how can that be? I remember so clearly her infancy when I would sit and nurse her and just sit in awe of the fact that she was alive and doing so well with her head full of dark hair and her blue eyes. SaraAn was not a planned child, Austin was going to be it for us, but I guess God had other plans. Shawn was convinced well before I was that I was pregnant. No way, I would say, we have a baby and it just did not seem possible. Well, Shawn went to walmart one day, picked up a test and told me to take it because he knew it would be positive. I remember him laughing over the KFC we had for dinner that night when I came out crying because he was right. His mom did not believe it right away, but was thrilled when the shock wore off. How were we going to raise another baby? Henry was at the height of his diagnosis and Austin was beginning to get sick on a regular basis and I was working full time. Wow!!
       Well, off to the Dr., who I owe Henry's life to and she helped with Austin's delivery also. She was a little concerned of course since I had two csections one just less than a year ago. This ended up being my best of three pregnancies, thank goodness for small miracles. Not realizing all my strength would need to focus on her first weeks of life. July 8th. was the day set for my csection, a couple of weeks early so I did not have any rupture of the uterus going into full labor due to Austin csection just 13 months before. Was assured she was developed and ready for the world. Good delivery then as she was being taken to nursery, Shawn noticed something was not right about her color, he was right. She was then rushed into NICU where she was touch and go for a couple weeks. That was a horrible time, thank God for my friend who came in from Pa at the time to stay with me and help with the boys and take me back and forth to the hospital. I had to see her everyday. I would pump every three hours just so I knew she was getting a part of me, I watched my milk be poured into tubes into her nose for her nourishment. I could not even hold her for almost a week. Thankfully, she rallied after being hooked up to tubes everywhere and she came home attached to nothing. After that I left my job and decided along witht he dr' she should not be in childcare for a while.
     Well, you think that was scare enough, she defied the odds again at 2 1/2. She was now in daycare where I worked, she began getting bouts of pnemonia regularly, with meds and nebulizers she would come out of it and be OK for short periods of time then get it again. Feb 2008, she was taken to the dr and put on antibiotics, steroids, and nebs again. This time she did not get better. Shawn was home with ther one day after being on the meds for two days in hopes she would be better. She was not getting better, she was tinged blue to the lips and now was lethargic, and was struggling for air. Rushed right to dr without calling, her pulse ox which should be over 95, was only 79. She could not breathe, panic set in, right to hospital and put on a breathing mask with a bag on it. Knowing what that is, I was scared. She was really sick, double pnemonia and severe RSV, a respiratry virus that could kill little ones. After six days in hospital she came home, now with many dr's visits to figure out what was going on. Asthma was decided. Medication after medicaton. Hopefully, she could outgrow this.
    Now, SaraAn is on 5 or more meds a day to control asthma, reflux (another story), and some constipation problems from the meds. What a life for just six short years. It does amaze me how I guess she was meant to be here. She has had to fight a heck of a battle to make it this far. Thankfully, with God on ours and her side, the battles will keep being won. She is the strongest girl I have ever met and even though she drives me crazy with all that fight, I have to remember without it, she would of never made her first day. I hope and pray she uses that God given fight ability to good use one day and that she will never let her guard down. Hopefully, as she grows some of these ailments will lessen or go away, but in the meantime she lives life to the fullest and she loves it.  The firecracker, all that energy, excitement,and amazement of all the colors. Happy 6th Birthday, baby girl.

Letting Go!

   Letting go is hard, sometimes it can be harder or easier depending on what you are letting go of. I sit here in the quiet tonight and think there are many things I have let go of in my life and there are many things I would like to let go of like some behaviors and attitudes. Some of those are not as easy as letting go of an old baby item of throwing away or an unused toy etc. The reason of this blog tonight is my feelings towards letting go of my kids. Yes, I am over protective, as any mom in my situation should be, there is always the fear of the unknown and things that could happen if I am not there. I have had to work very hard towards letting go a little when it came for instance sending Austin to school for the first time. That was a nerve racking day for me, even though I knew I was only a phone call away. One day when he was in school I knew I was going to be gone out of the area all day and I was a nervous wreck. What if something happens, what if he falls, what if he cuts himself? How anxiety producing, overprotective or controlling? Maybe a little bit of both. Tomorrow he will be beginning a full week at Hawk Mountain for Cub Scout day camp, he will leave early morning and not return till close to dinner time. I am NOT going, he has been up there one day before, but not for as long without me and I know from experience he will be doing a lot of things that might be new for him and could cause injury.
    What is an overprotective, controlling mother to do? Well first pray, real hard for Austin's safety and enjoyment. We have been pretty good about not bubble wrapping him since his diagnosis. Second, have trust in the person who will be looking after him this week and I do. I put my complete faith in him and I know he will look out for Austin. Third, just think positive that all will be fine, even though I know I will be thinking of him constantly until he lands back home safe and sound. Once I get him through this week, I really will be going crazy because I know he will be attending Dragonfly Forest  next week where he will spend 6 days and 5 nights away from home, his first time ever away from home to this capacity. I know Dragonfly will be all kids with bleeding disorders that week and I know they are fully staffed medically with dr's and nurses, but I will NOT be there. I know at the end of the day, I am so happy my children get to have these experiences and I am so glad sometimes to see them just go away for the day or week, but I am still that overprotective, controlling mother and I still have a hard time letting go.

Fathers Day

     Fathers Day, a day to celebrate our fathers. Yes, my children showed their love through gifts to their daddy this morning, and I had a small something for him, but did not see him before he left due to the extreme lack of sleep from working this weekend. I could not of asked for a greater daddy for my children, he might be a little tougher then me sometimes, but I am known to have a soft spot. Even though Shawn may not make every game, practice, dr's appointment, etc., he is still there for the kids. He is a great supporter, his work pays the bills to provide them with all they need. May not be all they want, but they have their needs met and then some. Some days it is hard with him being gone so much, but I know he is doing what it takes to show his love to me by letting me only work part time and focus full time on the never ending needs of the kids.
    Not only do my kids have a great daddy, I lucked out and gained a great father in law. He also worked and still works hard to provide and care for his family. He just loves his grandbabies. Our three are my in laws only three grandkids, and boy are they spoiled by poppop, the kids just love him to pieces and love to help him with all his outside work. I hope my boys learn the value of hard work by watching their daddy and poppop. I also have two grandfathers whom I consider one of them to have been my father in every sense of the word, unfortunately due to family crap, that relationship has become a very sad story and one that hurts me everyday due to selfishness of others.
     As I have read all day of my friends lifting up their fathers and calling them daddy, I am brought to tears sometimes because I do have a living father, just one who never acted like one. Unfortunately, for his sake he has 9 grandchildren he can never see due to his past behavior. All by choice of course. I also have a mother , but because of my father can not have a relationship with her three daughters or any of her grandchildren. Kind of sad if you think about it. My sons therapist tells me all the time, even though I have blocked out all the old junk, my father still plays a part in my life and it shows by how I am raising my kids. I swore I would never let my kids feel the way he made me feel, and the way he still makes me feel somedays. I hear his bad voices in my head a lot especially if I feel fat one day or I screwed up someting. Amazing that I still feel crappy sometimes even though he is no longer in  my life. This all was very hard for Shawn to understand, but he has gotten better as so I. Maybe I have just buried it all so I can just move on, but it does come out sometimes especially on days like this. I am always in the healing process, it does help that I have other men in my life whom have taken over the role, and I thank God for that everyday. All in all, I know I always have a Father(God), whom I can lean on to get my through it all everyday.
    Happy Fathers Day to all the great dads out there, especially my hubby and his dad and my grandfathers. And to my friend in NJ whom even though did not know me till later in life has become a great dad figure to me and a wondreful grandpa to the kids.