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.
Thursday, April 28, 2011
Wednesday, April 13, 2011
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.
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.
Wednesday, April 6, 2011
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.
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.
Thursday, March 24, 2011
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.
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.
Wednesday, March 9, 2011
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.
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.
Thursday, February 24, 2011
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.
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.
Monday, February 21, 2011
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.
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