As we come up to that time of year again telling everyone what we are thankful for... for me everyday is about thanks!
I have gone a different way this year!! Over the last few years my life has changed so much, I have lost people that I cared about and gained new ones (old and new) that gave me a new meaning!! I am a true believer that people come in and out of your life for a reason the reason we may not ever know but they touch our hearts one way or another!! That brings me to August 7th 1999 a beautiful healthy baby boy was born 7lbs 7oz & 21 inches long! He was to be named Jonathon Michael (first name after dad and middle name after my dad!). His Dad and I were young new parents really no clue what life would have in store for us! Jonathon had the biggest set of blue eyes and when he looked at you they went right through you! As I sat in awe at this beautiful boy all I could think of was the great football player he would become or the next hockey star!! I couldn't wait for him to do all the things boys loved to do! Jonathon was close in age with his cousin and my visions of them wrestling on the lawn and riding bikes all over town you know all the great things boys will do!! All of this quickly changed when I heard those awful words "Epidermolysis Bullosa" what the eff was that???? What do you mean don't have anymore kids (I was already pregnant with my second)??? What do you mean he will not live until 5??? (You can see the birthday post about those feelings) What the hell did all this mean? Ok so we will just cure it they have cures for everything right simple? Hello why are you not answering me? Miss Connolly I'm sorry but there is NO CURE! Wh what do you mean? The only thing you can do is wrap him in bandages and keep him comfortable. After doing some research on EB and trying to put things into perspective and figuring out what all this meant for him...for us... I still had no idea what was in store for him! By this time I had already had a beautiful baby girl Ariana Marie 6lbs 14oz & 20 inches...who was EB free!! In 2006 a wonderful woman submitted a story about her hero who just happened to be Jonathon and the story was going to be in People Magazine!!! The interviewer came out and started asking us all sorts of questions about how we felt about EB!! It wasn't until this time that it had hit me all those emotions that I felt when he was born was never going to happen..he was never going to play football..he was never going to play hockey...he was never going to be a cop...or a firefighter..that's all Jonathon ever wanted to do was be a fireman he wanted to save people and make a difference in people's life! Do you know what it's like to know your child who you have so many hopes and dreams for and who had dreams of his own would not be able to do those things!!! It is one of the hardest pills to swallow in life as a mother!! After this interview we had so many more..Inside edition, our local news, other news stations from other countries and the news papers!!! By the end of it all our heads were spinning!!! But Jonathon had become a pro at talking about EB and what life was like for him and every time I would hear him talk about it I got all teary eyed! Life for him wasn't about EB it was about life and who was in it!! Now don't get me wrong we have always taught Jonathon that he is just like anyone else and can do ANYTHING he puts his mind too but in reality there are just somethings I know he will not be able to do. This year Jonathon got a incredible opportunity to speak at the State House in Boston about his EB. We said yes and started writing his speech! On Feb 29, 2012 I sat in the audience and listened to him read his speech to the crowd...as he read I was brought back to the day he was born when I had all these hopes and dreams and I realized that Jonathon had done all that I ever wanted and more!!! He had grown up to be a special kid who wants to get his story out and teach others about EB!! Dreams never go away they just change as we grow. This year Jonathon was also diagnosed with Aspergers along with his sister Ariana and as the challenges keep coming he does nothing but keep smiling!! So, as we all sit with our families and give thanks for having each other...I am thankful to have someone who has taught me that as life really is to short we should not be afraid to go for it!! Jonathon has taught me more over the last 13 years then anyone or anything!! Life through his eyes has no limits or boundaries!!! Take that minute to stop and look around and you may realize that what you have been missing all along is right in front of you!!! ❤
Tuesday, November 20, 2012
Sunday, November 11, 2012
Long over due update
WOW!!!! Has it been a long time since our last update! So, much has been happening and things have been so busy but I figure better late then never!
Jonathon: So, much is going on with him. Right before he went to camp this summer he had some neur-psyc testing done and needless to say did not come out how we expected. He has been diagnosed with Aspergers which was a total shock though it explains so much of the behaviors and actions. He also is mildly MR which I had a good feeling because his cognitive function has not gone up since his last testing 3 years ago. So, we have been working with so many people and honestly it becomes very over whelming at times. Then on top of all that we have the EB and that has been up and down. Pain seems to be the biggest thing for him at this time (on top of the usual stuff). Today when I was looking him over all his areas have blisters. I am pretty sure its because of the stress at school with all they bullying and now he is going to a whole new class because of everything that is going on. This class is a life skills class that teaches the things you need to be independent. I am trying to get him a appointment at Cincinnati. I think its time for him to have a scope but, I want it done by someone with experience. There are of course other things I want them to see him for so, we shall see what happens with that. I will be starting a fund raiser "Pennies for Jonathon" to help us get there and back. Also I think its time for him to have a wheel chair for the days he can not wear his sneakers. Now he is wearing them but he will limp and need to sit frequently so, I think this may help him and not put so, much pain that he doesn't need. Other than that he is doing well.
Ariana: She has been OK. She also is Autistic with NOS and SPD. Her "fits" have been happening a lot more lately and we are back to the same talk that she was saying before. Things were going so well and under control but I think with her hormones raging at the nice age of 12 that is not helping. Some of the things I am learning for Jonathon I have been putting in place for her. Other than all this she is good.
Ellie: Finally just had her allergy testing done. Guess what??? She has no allergies. HAHA for some reason I really don't believe that. During the test she was screaming and moving so, much. I may have to have it redone. One thing that is concerning is she is gaining weight and more than what it should be so, she will be having her thyroid checked to see if anything is going on. We have been controlling her intake of calories and stuff . She is very active but still gaining the weight so, hopefully we can get some answers!! She started preschool this year and loves it.
Me: Just had surgery on Friday for my carpal tunnel and ulnar nerve. My fibromyalgia is in a bad flare because of all that has been going on!! My arthritis is also not helping stuff but, what can you do! I started school in September for medical coding. I am doing it online since I can not commit to a set time with the kids. I probably get more calls from them because of something going on, than I talk to family!! Trying to get things in place for thanksgiving and stressing out for Christmas. Since I have been laid off I have fallen behind on everything and spend every bit of my unemployment trying to catch up so, have no idea what Christmas is going to be like this year. The kids go through so, much and take things so well for all that they have to go through it makes me sad to know the one thing they look forward to besides a birthday may be crap this year!! Ugh can not think about it just makes me cry. Thank you for reading and following us. Jonathon has a facebook page the name is www.facebook.com/jonathonaebwarrior so, please go follow him and get his updates.
Jonathon: So, much is going on with him. Right before he went to camp this summer he had some neur-psyc testing done and needless to say did not come out how we expected. He has been diagnosed with Aspergers which was a total shock though it explains so much of the behaviors and actions. He also is mildly MR which I had a good feeling because his cognitive function has not gone up since his last testing 3 years ago. So, we have been working with so many people and honestly it becomes very over whelming at times. Then on top of all that we have the EB and that has been up and down. Pain seems to be the biggest thing for him at this time (on top of the usual stuff). Today when I was looking him over all his areas have blisters. I am pretty sure its because of the stress at school with all they bullying and now he is going to a whole new class because of everything that is going on. This class is a life skills class that teaches the things you need to be independent. I am trying to get him a appointment at Cincinnati. I think its time for him to have a scope but, I want it done by someone with experience. There are of course other things I want them to see him for so, we shall see what happens with that. I will be starting a fund raiser "Pennies for Jonathon" to help us get there and back. Also I think its time for him to have a wheel chair for the days he can not wear his sneakers. Now he is wearing them but he will limp and need to sit frequently so, I think this may help him and not put so, much pain that he doesn't need. Other than that he is doing well.
Ariana: She has been OK. She also is Autistic with NOS and SPD. Her "fits" have been happening a lot more lately and we are back to the same talk that she was saying before. Things were going so well and under control but I think with her hormones raging at the nice age of 12 that is not helping. Some of the things I am learning for Jonathon I have been putting in place for her. Other than all this she is good.
Ellie: Finally just had her allergy testing done. Guess what??? She has no allergies. HAHA for some reason I really don't believe that. During the test she was screaming and moving so, much. I may have to have it redone. One thing that is concerning is she is gaining weight and more than what it should be so, she will be having her thyroid checked to see if anything is going on. We have been controlling her intake of calories and stuff . She is very active but still gaining the weight so, hopefully we can get some answers!! She started preschool this year and loves it.
Me: Just had surgery on Friday for my carpal tunnel and ulnar nerve. My fibromyalgia is in a bad flare because of all that has been going on!! My arthritis is also not helping stuff but, what can you do! I started school in September for medical coding. I am doing it online since I can not commit to a set time with the kids. I probably get more calls from them because of something going on, than I talk to family!! Trying to get things in place for thanksgiving and stressing out for Christmas. Since I have been laid off I have fallen behind on everything and spend every bit of my unemployment trying to catch up so, have no idea what Christmas is going to be like this year. The kids go through so, much and take things so well for all that they have to go through it makes me sad to know the one thing they look forward to besides a birthday may be crap this year!! Ugh can not think about it just makes me cry. Thank you for reading and following us. Jonathon has a facebook page the name is www.facebook.com/jonathonaebwarrior so, please go follow him and get his updates.
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