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.

Craziness

     Since my last post a week ago, I have gained another head full of gray hair. The little one, SaraAn has caused most of it. Most people would say, what else can go wrong for you? I simply just laugh and say lots more could because it always does. SaraAn just had her stitches removed today that were put in on Saturday while getting the boys ready for a bball game and still preparing for Austin's bday party while on about an hour sleep. Her listening skills just were not working well when I kept repeating myself to leave the dog alone, well she will now have a scar on her face to prove the point that she should of listened. Back to ER two days after that, three bad bloody noses,I was  told to take her there. Of course while there it stopped, now off to ENT on Monday, not sure what they can do, but this was not the first time with this problem. Not half an hour after having the stitches out today, she starts bleeding again. Luckily it stopped quickly. As if that is not enough, Austin lost TWO teeth on the same days as her ER visits. What are the chances of that? Thankfully they did not bleed too much. Now tomorrow off to CHOP for Austin's big hemotology visit. Prayers it all goes well. My biggest concern is his weight, he has lost quite a bit since being on ADHD meds. What mega drama.
     On a good note, the kids made it through another year at school. They all did very well and I should be proud, especially of Henry. His first year almost completely mainstreamed, he got all A's and one B+ on his report card. That is a proud moment, seeings where we have come from with him. Now off to 5th grade. That is so unbelievable. Austin going to 2nd and SaraAn to 1st. Where did the years go? Kind of sad to see another chapter end. Summer, going to be crazy, but hopefully fun. New things in store especially for Austin. Going to overnight camp for the first time, all kids with bleeding disorders. I know he will be well taken care of, it's the same camp Henry goes to for the week for kids in the spectrum and Henry loves it.I bet I will be holding back tears that day. On a note about me for all those keeping track, I lost another 4.6 lbs and now I have lost a total of 17lbs. in just three weeks. I hope it continues for the sake of my knees that are really hurting a lot lately. I am hoping the more I lose the less pressure I will be putting on them and I will not be in so much pain. Prayers this week for good outcome for Austin at CHOP tomorrow, for SaraAn's appt at ENT on Monday, and for things to settle down a little especially in the medical sense for the kids. I realize having kids with needs was going to be a lot of work, but somedays I do fell my strength is running low. At the end of each day I just thank God I made it through another one and just ask for more strength for the next. Good night all.

Life and Death

       June 2, 2004, I gave birth to my middle son Austin. A beautiful 7 lb 12 oz. blue eyed joy. All that know my story also know his seven years have been very difficult and the story never sems to end. My little man I call him, deserves a medal for all the pain and anguish he has been through. The hours upon hours at dr's, specialists, and the pokes and prods on his body through the years. Enough for an adult to go crazy by now. Austin's spirit, his bright blue eyes and his contagious smile should be an inspiration to all. I feel he will be doing something huge in his adult life. All of this does come with a lot of strength as his mom. All the pain, appts with various doctors, and just the though of having a child with such needs as Austin does would drive most to the loony bin. Anybody watching him on the street riding his bike, playing baseball, or just running around would never think there is anything wrong. I, as his mom know that is so far from the truth. When getting his diagnosis at 9 months old as we were preparing him for surgery, many thoughts came through my mind. Do we need to "bubble" him, how we he do things like "normal" kids, can he do this or that? Well, as his mom, I feel we have done a great job by letting him live his life to the fullest and we plan on continuing that trend. Baseball, scouts, bikes, swimming, soccer? The possibilities are endless for him and I hope they will always continue to be. I of course make sure there is always that extra protection and I am sure there will be lots of tears as I send him to overnight camp for the first time this summer. Our next hurdle will be faced within the next few months as they begin testing him for high functioning autism like Henry has. He has been displaying lots of similiar behaviors just like Henry and I along with his doctor are concerned. Am I reading into things too far, is he mimicking Henry, I do not know, but I will find out. I am his biggest advocate and always will be. Will I be surprised if the results come back positive, no, but at least I will know how to handle things. I am however a little scared about the whole thing, but God will get me through this as he has gotten me through everything else.
   As we celebrate the day of another year for Austin, we as a family had a tough moment tonight. Our beloved guinea pig Patches died in my arms. The kids all took it very hard and Austin decided it was his worse birthday ever. Wow, that stinks to hear him say that. I know Patches will be replaced by another piggy, but I know it still will not replace Patches. She was well loved and will be missed. Well, off to do my wife duty, dishes, then go to bed to prepare myself for a busy day tomorrow. R.I.P. Patches 5/08-6/2/11

Small victories

   They say Rome was not built in a day, well neither was my weight or my sons fear of a baseball. The past day has brought two proud moments as a mom and for myself. Austin began bball season this year with an attitude that "I cannot do this, I am going to quit." This all stemmed from hit being hit by a ball early on in the season. Coach promised him that if he ever even brushed him again there would be ice cream involved as a way of saying sorry. As his mom, knowing that any injury cannot be treated lightly, I had to hold my ground and keep making him go and try hard to keep him practicing. Last night made it all worth it, every whine and cringe moment. I along with his coaches tried hard the past couple weeks just to work on his confidence and  get him comfortable just with the ball coming near him. Something clicked in him the past couple games and the whining turned into when is our next game, I cannot wait to play. Last night when I told him to start getting ready he very quickly got himself dressed and was ready to go. Wow, this is great.
   I had to drop the boys off and head to another field with SaraAn because I help coach her team, so I had to go with her. Upon returning, I was quickly approached and asked if I would have a problem with Austin catching. CATCHING? The ball coming right towards him? I was not too sure, but seeing his face and the excitement he had, I could not say no, as long as he was protected, which he was and always is. I asked the coach how he did when I was gone, and I had to almost wipe a tear when he told me that he hit the first time and got out later when running to second, but the next bat he hit a DOUBLE, wow, are you sure we are talking about Austin, not Henry, who plays on the same team. They assured me they were talking about Austin and told me how excited he was when he hit that far. I was excited for him and felt a litttle dissapointed that I was not there to see it. At least his grandma and aunt were there though.I did see him hit a third time and he had a great hit, but got out on first. I was a very proud mom last night and I feel that these little things to some people are HUGE to me and all that know his story I am sure know why.
  On now to my proud moment tonight. As my last post, I shared about my goals on weight loss and my new journey on weight watchers. I followed my points and learned a lot this week about portion control and self control. There were many tempting moments, but I had to remember why I was doing this and that the cravings will one day not feel so strong. I also kept myself busier than usual by trying the more advanced Zumba class at the gym to just doing things around the house to keep my mind off food. For instance, this would be a typical need a snack time, but since I am here writning, I do not feel hungry at all. At the meeting tonight they talked about excuses and what is the core behind them. I know what mine are and a lot do stem from my past, but I am willing to go past that and make this change. I have lived my whole life with my father in my face telling me I am an embarrasment and will never amount to nothing Well guess what, he was wrong and I am beginning to see that more each day. It has taken me a long time even though I have no relationship with him, to just let it go, and I feel that is what I need to do  if I am going to succeed in this journey. Well, anyway, I am closing this blog 8 POUNDS LIGHTER tonight. I feel very good about this and I hope all my hard work will pay off in the end, but for now those baby steps towards a new me.

Battle of the Bulge

      The Battle of the Bulge I will call it, has been a battle ever since I was about 5. I was always active, playing sports, walking, etc., but it was never enough. They say stress and low self esteem are not good for weight problems, and boy do I have all of that. As I was growing up, stress was non stop. Between moving all the time, parent problems, and the constant teasing I went throuigh my whole life, it is no wonder I am what they call in todays standards morbidly obese. Wow, that should be an eye opener in the first place, but something has held me back to change it. I do not think I am lazy which is of course a huge misconception, that fat people are lazy. I am very active on a regular basis and feel that is good, but the scale will not budge. Food, well, I guess in my down times and lonely periods, it is my friend. I do have friends, but still feel very lonely a lot of times. I sit most nights by myself when the kids go to bed and that is my hardest time of day. I need to find an outlet for that time especially. There are things I like to do such as scrapbook and read, but most days I just want to relax and watch TV, but then here comes the food.
    I love to watch shows like The Biggest Loser, Heavy, and others that have weight as the core of the program. I love to listen to the suggestions that are made and I look at the people on these shows and think I can make these changes, but what is holding me back? I do not know. Maybe lack of self esteem, maybe just the not knowing what people would think, maybe the whole thing that I do not deserve this one thing for me and that is to be happy about myself.  It boils down to the fact that I am not happy being my weight and for the sake of my own health and for the sake of my three kids who depend on me for so much, I need to make a change. My parents had very early onset of heart disease, battled diabetes, high cholesterol, and just plain did not take care of themselves. I do not want to be my mother in two more years at the age of 36 and having a heart attack. I remember that day very clearly and all the responsibility I had to bear because she was limited in many activities afterwards such as driving, lifting, etc. I would never want to put my kids through that.
    The kids alone are enough of an excuse to where I should want to lose the weight, the added stress of our everyday life with the kids would make anybody struggle with some things. The excuses need to end here and now, and they are going to. Talking with some friends last night, one was talking about weight watchers and that she was going to a meeting right after karate. I asked about it and went home and decided since Shawn was home I was going to check it out. I was hooked and here I am now beginning my new journey. I feel the fact of the accountablilty in front of people, the visible rewards, plus someone else doing it also is what I need to maybe just succeed in this mission for a better life. I want to be around for many years to relish in the moments of my kids lives and see how all the work I am putting in now and the rewards I hope will someday come from all of it. I also want to grow old with Shawn and let him enjoy seeing a new me for the first time ever. I want to experience the joy he had when he lost over 100 pounds. Here it is my friends, my life changing moment. Updates I am sure will come. On to a new me.

To do or not to do?

    This is my question for the day that I already made the decision on, but wonder if it was the right one.The question on whether to medicate a child or not  for behavior is one that has been asked a million times over by parents lately. We grapple with this decision for many reasons, will they have side effects, will they be too tired, will they work overall and help the child? I grappled with these same questions over and over again in many situations. The decision in Henry's case was fairly an easy one and what a difference it did make. He could finally get through a day with fewer difficulties. Now his med count stands at three, one for ADHD and his attention, one for the Tourettes tics, and now one to help with his overall mood which has been suggested as depression. This might sound like a lot, but he receives regular check ups and is monitored closely to make sure they are doing what they are supposed to. I truly believe they are helping him in a lot of ways.
    My issue at hand is with Austin. As of kindergarten last year, he was the model student, well behaved, listened and followed directions, etc. His teacher this year in 1st grade did not have the same opinion after the first couple months went by with constant behavior struggles at school and home. What happened, I ask myself every day. Did I screw something else up? Is it genetic that I have to mess up all my kids in so many ways? Was something different going on at home the school asked me? Maybe it is just middle child syndrome or he just needs more attention, I am baffled by the change. Well, now what to do about it.  After many talks with his teacher and doctor it was decided that yes ADHD does run in families and now looking back Shawn probably had it when he was younger and seeings that Henry already had the diagnosis, it was a high probability that another child was stricken with ADHD.
      Can anything else be wrong with my poor babies? Talk about feeling like a screw up. Now we need to play by a whole other set of rules for discipline, homework battles, routine. Even though we already dealt with it, things just needed to be treated on a child to child basis. No set of rules works for all. Medication was decided on for a trial run right before Christmas, with his teacher and doctor supporting me, here we embarked on another roller coaster ride. Well, a difference was noted and still is. His behavior and attention in general did improve, but at a cost. Now we struggle with the fact that Austin cannot swallow pills and his med only comes in that form. I pour it in his drink at breakfast and hope he finishes it. Shawn is a little more abrupt and makes him swallow it whole while he cries till it goes down. Am I a softie or is he playing me everyday? He has opened up recently to a family member who did Not even like the idea of him being on meds and told her that the medicine makes him feel sick. He has mentioned that to me also, guess that is why he has lost over 10 pounds since being on it. My stocky boy thinned out a lot, even though he looks great losing that much is not good. Now after two days of not taking the medicine, he was unbearable and miserable today. His attitude was just terrible and he was so negative about himself, which is another story within itself. Off to the doctor on Thursday to make some decisions, either a med change, no meds at all, or something else. Not sure what is going to be best. I hate to see my kids suffer in any way, but which kind of suffereing is better then the other. It is another battle that I will fight to see my almost seven year old flourish in life. He has overcome so many obstacles already and will have many more to face as he ages with his bleeding issues, but I will be there through it all with him, even if it takes a couple of tears along the way and an extra bottle of excedrin migraine to see me through.

Changes

      Since my last post so much has happened for the good, I hope. Three weeks ago, I went away for a 72 hour "walk" as it was called and left seeing my life in a whole new perspective. I left on a Thursday night full of anxiety and stress because I was leaving the kids, no phones allowed, and no clocks or watches to be seen. What??? After being there it all made so much sense. I was there to fully put my heart and mind into focus and see where God leads me. I had an experience I will never regret and I feel better about so many things in my life. There are so many things I cannot describe about my journey, but I will say it was life changing and I feel God really did work in me and I pray it will continue always.
    Now that Shawn and I experienced this together, I feel that our relationship has been able to grow in so many ways. We have been able to see things in a whole new light and realize together that God will take care of us no matter what. I more than ever that I am able to handle all the stuff that is put before me as long as He is my priority. I know so much of this sounds silly to some of you, but only through God am I here today through all the struggles I have had to even talk about these things. I truly believe most in my situation would be on some sort of drugs, depressed, or would of just given up by now. I now see that my faith in God though it not be as strong as it should be some days, has been the key to getting me through without the drugs and other outlets. Yes somedays, I do get frustrated, but who wouldn't in my shoes. These are pretty hard shoes to fill considering all the junk I deal with on a regular basis on top of the regular stuff.
     Shawn and I do have our struggles, but we have come to accept them as is and will be dealing with things very differently from now on and will be leaning on eachother more than ever. Statistically speaking we should of given up a long time ago, but we have managed to make it this far despite all the numbers. That could only be the work of God I tell you. I look at my own battles, childhood problems, weight issues, low self esteem, financial struggles, and the mountain of tissues over my kids and their own battles, somedays their battle to just survive. I have seen the brink of death in everyone of my children and I am telling you from wrapped cords at birth, to bleeding issues and surgery, to the little one not breathing at birth on machines and then another scare when she was two and was struggling to breath when she was very ill. I know most will see my kids today and think nothing could be wrong, but most know that is not the case. God does have a plan for all of this even though some days I do not see it yet, but here is where my patience level needs to increase.
     Anyhow, Shawn and I attended our "fourth day" program yesterday and we got to see so many of our new friends from our "walk". We both feel so blessed that we had this experience and that we are now part of a new community of people here to serve God and lead others to Him. What a gift. I have opened my heart to seeing so many opportunities to serve now and I hope and pray that my life will finally begin to make sense.

Control

     As most of you know I am a control freak to an extent that I am having a lot of anxiety about leaving for the next three days. Who can care for my babies as well as I do if they are sick, if one gets hurt especially Austin, who can cheer them on at their games this weekend, homework, etc? I know Shawn is a great loving father as he is a husband, but I still have issues with him taking full reign of the house and kids, why, I do not know. I felt the same way last year when I left to go away for a weekend for the first time since SaraAn was born. Everything worked out just fine so I should not worry, but I do.
    I am leaving tonight for a spritiual "walk" as you can call it, not many details given except that just bring comfy clothes and leave phone, watch, and all worries behind. WHAT??? My phone, worries, my lifeline even if it is just to check in and make sure all is fine. Shawn went on this journey in the fall and he cannot wait for me to get back in hopes this will calm a lot of my fears and become closer to God in an extraordinary way. I will leave here tonight with some panic thinking I am forgetting something even though I have made myself a check list and have been marking off everything as I do it today in hopes to make the ride a little smoother for Shawn for getting the kids to school, picking them up, their activites, and Austin's FIRST sleepover birthday party tomorrow night. I made it so easy for him, laid everything out, labeled everything, put things in envelopes, washed all bball uniforms for games, etc. Hopefully I can calm my fears and be able to enjoy this time away and get everything out of it I am led to receive.
     Well, my checklist is not getting done if I am here blogging so I will be back on Sunday night and will share my experiences. Please God take away all my anxiety about being away and keep my babies safe and well the next three days till my return.

Double Digits???

      Double digits, something to celebrate. I am quickly reminded that Henry will approach this monumentous milestone this year,in August. Shaking my head in disbelief, where did all that time go? Sitting at his IEP meeting this morning planning for the FIFTH grade, I was reminded how far we have come with him. This is true, from a non verbal, head banging, biting preschooler to a nine year old in all regular education classes maintaining all A's and B's. The concern of course as we move along the years is the peer pressure and the social problems that come along with his diagnosis. As his mom, I of course want nothing but the best for him and as I signed those papers today as I have been for the past seven years now, I have to almost hold back a tear or two just thinking about what the future holds for him and I am a little scared knowing how mean kids can be and how Henry will shut down and lose it if he feels he is being treated unfairly.
      I am hoping with the help of his therapist at home and his help at school he will learn to deal with the bad things in life. I feel getting him involved in the things we have has been a big help for him socially, but is it enough? I remember what it felt like to be the kid always getting picked on (yes, that was me), and trust me it does not feel too good. I would never want my child to go through that kind of pain. I guess I should worry if it happens, but being the kind of mom that does worry a little, I am going to enjoy all the great things even more because I do appreciate them more. As Henry is busy with scouts and really getting into baseball, I am going to be his biggest cheerleader and keep encouraging him to do his best no matter what others think.As I pray every night I will try not to worry so much about the things that are not in my control because I know God does have it all under control. Some days I do not like all the testing he gives us, but I have made it through another day and that matters a lot.

Wiggle,wiggle

        Finally, after much anticipation, Austin lost his first tooth. I know this is no big deal, right? With Austin it is. Trying to be excited about this monumentous milestone for a kid his age all I could think about is there any bleeding. I know a little blood is expected, but how much is enough and when should I be concerned.A tropper he is and when it first fell out he did not even realize it fell out until he noticed the blood in his mouth, we cleaned him up and he still wanted to go to school so he could ask the nurse for the pirate treasure box for his tooth. She of course gave him one and looked at me a little nervous incase it began to bleed again.
Why you may be asking is this such a big deal, why I answer is that if you don't know Austin has hemophilia and Von Willebrands disease, both blood clotting disorders.
        Austin, a fairly routine pregnancy unlike Henry, was born by csection ( he was stuck) , on June 2, 2004. A picture of health and beauty he was. Sent home in three days without a concern in sight. By three months he began having bad sinus infections, they would never end. Countless antibiotics, green snotty noses, fevers, and non stop vomiting due to such congestion, would it ever end. This went on and on for months. At the time, I worked in a day care and Austin was with me in the infant room. His poor teachers, thankfully they understood there was nothing more I could do and we would just have to deal with it. By eight months or so, the dr's were beginning to get a little concerned so they sent us to CHOP to an ENT. There it was quickly discovered that Austin was a sick little boy. His tonsils and adnoids were very enlarged and they wanted to take them out ASAP. This was the only solution for him to get any relief even though this surgery was unheard of for such a little baby. WOW!! Surgery, on our baby. We were reassured over and over that it was OK and we would have the best from CHOP on his case. Luckily at the time, CHOP Voorhees center was right around the corner and I could get Austin there when he had an appt. Off now for preop bloodwork.
        By the end of the afternoon of his bloodwork, a phone call that will shape the rest of our childs future. Surgery could not be done, you are scheduled at CHOP oncology/hemotology office Monday morning STAT. Too many problems found in his bloodwork was the explanation. Oncology? Cancer? No something must be wrong, words could not describe my feelings and how was I going to get through the weekend not knowing what was going on. Monday morning came and here we were with Austin at CHOP meeting a whole team of dr's, nurses, etc. who would be getting to the bottom of Austin's case. Dr. Travis is who we first met (now retired) , she told us there were concerns about his white cell count due to the amount of infections and that they were going to test him for cancer, but his clotting times were not right either. Many questions about family history were asked at this point and I had to act dumb, because I really had no clue. At that, now was the wait of a lifetime after they took blood form me, Shawn, and more from Austin. It had to get sent out to get to the bottom of so many questions.
          The phonecall came, thank God no c word, but many other questions lingered about his clotting times. His bloodwork showed he has a dual diagnosis of hemophilia A and 2N Von willebrands. WHAT?? Down to it, his blood does not clot right and two diferent things are causing it to be that way. It must run in the family they told me. Afterwards finding out that it did and now I am left to deal with it. Now surgery really could not be done until hours of tests are done for them to find the right treatment, different medications put through an iv and his blood drawn at different intervals. We would be sitting there for hours like the chemotherapy kids, playing games, and trying to stay focused and positive, all while I was very far along with SaraAn's pregnancy, and with Henry along. Thank goodness for the childlife team at CHOP who were all a big help to occupy.
           Now with the proper medication figured out, now to go through when it is needed and to learn to deal with his diagnosis. I could of never imagined what it was like those first few months dealing with home health care, helmets to protect his head incase he fell, the pain of the sticks if he was hurt, and just the simple fact of trying to let him be a kid and telling him to be more careful all at the same time. Only God's strength could get us through, as it did to this point. since all this Austin has under gone two surgeries, more problems with other things, and now simply trying to let him be a "normal" little boy, who is so rough and tough. More on Austin to come later, but as I finish this now, I am quickly reminded by him to not worry, it will all be OK. If only as he grows up, he realizes, that is the best attitude and that we all need to be reminded of that sometimes.

Boys, washington, and waffles

       Last Saturday found me with the two boys on a  full bus heading to Washington D.C. with the cub scouts. I was really out numbered, I had both boys by myself while all the other boys had one on one with a parent or had more then one person with them. I was feeling a little anxious. Me with two boys both with ADHD, one with Aspergers and the other one with  all his problems and ready to lose a tooth so I had to come prepared with his meds just incase of any injury or problem on the trip. WOW!! seems like a lot to just go on a trip to a place I along with them have never been before. Nervousness about the day kept my brain crazy the whole ride down.
      When there we set our plans for the day, a lot of walking, we were then on our own to do what we wanted till 4:30. For Henry we started at the Air and Space museum, a long walk to begin, Austin whining the whole time that his legs hurt, what did I get myself into? Once inside he of course was fine and got involved in some activities. since there was soo much we wanted to do we were on a time limit and it come quick, Henry impressed some of the workers with this knowledge on certain subjects and his knowledge of some spacecraft and planes. Imagine that.
    Now after another walk we came to the Natural history museum where the boys let the world know they know their anatomy while looking at the neanderthal and primordial people and statues. I ended up with a very red face and quickly had to redirect them to another part of the museum. I am glad they know the proper words for parts of the body, but did not need them to loudly acknowledge their brillance on the subject. Only my boys. Now it was a little after lunch and we wanted to go see Fords Theater and find the Subway restaurant that was on the map across the street.
  Another long walk found us in front of Fords Theater, this made Henry happy. Could not find the Subway. The boys however found across the way Lincoln's Waffle House. If anybody knows my boys they will know they LOVE waffles, so guess where we had to go for lunch. The place was a little crammed, but the boys faces said it all they loved their waffles and it made them both very happy and ready for another journey.
   Another long walk took us to Washington Monument, they were amazed by its height and we then proceeded to keep walking and find ourselves at the Vietnam Vet memorial that was requested by the boys menah(grandmom) to visit for pop pop's sake. They were a little confused why it was there, but they looked intently at it and the names and kept asking a lot of questions. Now right around the corner we saw Lincoln Memorial and the boys kept pushing me to go all the way up the steps, I kept looking and was not thrilled to do so, but Henry grabbed my hand and said "mommy I will help you", how could I say no to that gesture. I made it, impressed with myself that I did not collapse yet or my feet did not fall off. Down the steps we went and now off to the White House.
    Now the boys were showing signs of fatigue and I was getting pretty tired, but they wanted to keep on and go the extra couple of blocks to the White House. We were able to just see it from across the street, just enough to make Henry happy that he saw it. Now approaching 4:00 we started to head back so we could use the potty and get ready for the trip home. On the ride home there was a lot of excitement at first then tired finally hit most of the kids and adults except for Henry. Henry's brain was so overloaded by the days events that he could not settle down despite much effort on my part for the sake of others. He had sooo much to talk about and soo many things in his head and he needed to get it all out. I felt pretty sorry for the kids and adults trying hard to rest on the way home, even though there was nothing I could do about it.
  Finally home, the boys went to bed quickly, I was exhausted in a good way. At the end of it all felt pretty good about myself because I did it despite all the anxiety at the beginning. What a good day, my boys, Washington, and waffles.

Mega Mountains

   As I sit and realize I should be sleeping right now all I want to do is just vent. The past few weeks have been a struggle for me, craziness at work, extra hours to try to help finances a little since gas keeps climbing and the kids are always hungry, messes all around the house, and never ending problems with the kiddos. As I look back a little more then 10 years ago, I think nothing could of prepared me for the ongoing problems with the kids. I love them so much and always have put their needs in front of mine, but I am telling you some days are hard to manage without feeling like a good cry. If I could just add up the ever mounting hours spent in dr's and specialists, therapists , and the ever exhausting hours at Childrens Hospital of Philadelphia, I know it is all worth it for the sake of my babies. I have put so much of me aside from nowadays sleep, going to the gym, to just reading a book or watching the tv in hopes that my children will grow and be without their issues. I know that their issues will never be "cured", but at the same time I have done everything in my being to help them with all areas of their lives. Somedays though I still feel like I have failed them and myself.  I suppose some people will look at this as a pity me party , but I am doing this so others may feel that they are not alone in the battle to help their children achieve their highest goals.
     Henry, the oldest with aspergers, tourettes, and adhd has been our problem child lately. Some figure it is early stages of puberty, others think there is more to it. Back to therapy for him so he can help control his anger and now today hearing the word bi polar brought tears to my eyes. Could it be, it does make a lot of sense since there is a very high probable family history. We are going to try the medication route with a lot of support from his school and a new therapist. I hate as his mother to see him so anguished and so angry all the time over the stupidest things, but this is where his aspergers comes into plasy that he cannot process things the way normal kids do. WOW!! A double wammy it seems. New meds beginning tomorrow with a likely chance of seeing some difference within the next couple weeks.
      My little warrior,( they call her in karate) SaraAn will be spending some of the day at the hospital tomorrow for some more gi studies. Vomiting episodes have hit all time high 3-4 per week for over 4 weeks now. She is already on so much medication to control her asthma, reflux,and allergies. I have that mothers intiution that something is just not right for this to be going on this long. Seems endless and I am not even done. This is the little one that has fought for her life since the day she was born. I thought her near three week stay in the NICU at birth was one of the scariest moments of our lives, who would of ever thought it did not end there. I will further write about her at another time.
    To top the cake Austin who has hemophilia and another blood clotting disorder is ready to lose 4 teeth. Oh, please do not bleed. The meds are ready if any problems, but I am a nervous wreck. I am checking his teeth everyday to see how wiggly they are. He tells me "mom, just stop already". Maybe he is right, the insightfullness of a 6 year old. Try to convince me everything will be alright. Thanks to my little group of hemophilia friends who said it should not be that bad.
   As my ramblings come to an end and sleepiness is catching up to me, I needed to get this all out for some reason or another. I have been told over and over that God will not give me more then I can handle, some days I just want to laugh at that statement, but as I look at the whole picture I know with a lot of prayer it will all work out in the end. This is just another test of strength for me and I have NEVER been a failure to my children and do not plan on starting now. Updates to come. Thanks for reading.

Oh Henry, my Henry

      As Henry is watching the NASA channel waiting for Discovery to launch, I quickly think that most kids his age right now are playing video games, playing at friends houses, or just hanging out, but here is my 9 and a half year old listening to every word and watching every detail of this exciting event. Space and NASA is his obsession right now. Over the years his obsessions have changed depending on what in his mind sticks out. When I say obsession I mean obsession, from details about the subject most adults would not know to just reading about it ,to channeling every bit of energy into finding out more about the obsessive topic. As you might have figured out by now, Henry has aspergers.
     Our first child, many dreams, hopes, everything planned for the blessed event. What a roller coaster ride of a pregnancy with him from conception to the last second in the womb. Still, a roller coaster rides everyday. Carrying him was such a feat within itself, many hospital trips (dehydration), many days of illness,major surgery at 34 weeks to remove the bad gallbladder (scarred for life), 40 staples later, 2 drain tubes in stomach, and uncertainty of everything, from due date to even his life. Due date hit, induction, then excitment. The moment finally arrived. All this quickly turned to fear when heart rate dropped and now emergency csection and complete knock out due to blood pressure so high. I wake up later to find out the bad news, cord wrapped around neck and under arms so tight it was cutting off his oxygen. Miracle he was alive, now in NICU and future uncertain. Happy Birthday Henry, Aug. 11,2001.
      Home after three days, great news, uncertainty about his future scares us a lot. First year without a hitch, EVERY milestone hit on time. PHEW!!!! Within 2nd year, SMACK!! Right in the face. By three years old, PT,OT, speech and behavior therapy revolving door in our home. Henry did not fit the "perfect" mold. Such depression, we would be hours trying to settle a smart little one who could not speak, hold him tight with every temper tantrum so he did not bang his head on the wall or floor, learn sign language so we could help him find his "voice". Special education, IEP's, one on one aides, Wow, so overwhelming especially for a first born now entering school right after his third birthday. The ups and down over the years have been plenty, from potty problems to finding the right activities, to decreasing all the help, mainstreaming in school to just every decision that has been made for the better of this wonderful life.
    This week brought a lot of  the past as Henry had a full blown meltdown at school where he tried injuring himself and his anger could not be controlled. Horror strories told to me regularly about kids like him going through this next stage of his life, beginning stages of puberty? Kind of scary. As we have had our share of problems with Henry over the years, I feel a little discouraged thinking the worse might still be coming down the road as he is in regular education more, peer pressures, lack of friendships, and his overall awarkness about things. Will kids be cruel to him, of course that  is expected. Daily strength needing another boost to properly help him handle all things to come.
    Less then a minute to TAKEOFF!!! His excitement rises, his throat noises( Tourettes tic for him) increases due to excitement. 3-2-1 we have Liftoff, feels like life in all its ups and down everyday. As we prepare ourselves to get Henry through the next phase of childhood I have a feeling our knees will be buning regularly as we continue to pray possibly for a cure for all the kids in the beginning stages of autism to just the everyday dealings with our Henry.

Where to begin?

 I have been inspired by a fellow friend who has her own blog to try this out,more so to have an outlet (as if I have nothing better to do), but for myself and for others who might feel like I do somedays. Most days I end my day/night (get them confused due to working graveyard) feeling just plain BLAH!! Leave it to just being tired, stressed, or just confused with life. I try each day to find the positives with life, but a lot of negative gets in the way. I know most people look at me and hear my story especially about my three wonderful children and wonder why I have not had myself committed.  I have to keep it into perspective that there is a reason why God gave me such responsibility to handle the needs of three very different "special" children. I have also been blessed with a wonderful husband and daddy for over 11 years now to fight the battle with me even though we do have our differences with a lot of things. A lot of marriages would of ended by now if in our shoes most days. As I experiment with this new way of journaling as I will call it, I am listening to my little fighter SaraAn laughing, who is the most tempermental little one I think I have ever come across as she plays with her friend Rudy our dog. while laughing she begins a coughing spell that brings me to one of my hardest parts of the day and that is telling her she needs a breathing treatment before bed so she is not up all night. After this I am quickly reminded why my life is exhausting sometimes.