On Monday we will be venturing to Children's Hospital to finally see the highly recommended Dr. Lightdale. She is pretty much the only orthopedic doctor around for kids that specializes in hands.
Connors left thumb is beginning to look more and more dislocated and it is even becoming stiff and hard to move. His right thumb is not nearly as bad.
We have seen four orthopedic doctors and they all say the same thing "we have no clue whats going on but he will most likely need some form of a surgery". We have gotten..."maybe there is no joint there", "he is too young to tell anything from x rays", "we need to wait until he is closer to school age". The list of excuses goes on and on.
I cant wait until Monday and truly pray we will finally get some answers as to what exactly is wrong with his thumbs.
Thursday, March 1, 2012
Monday, January 9, 2012
Lets JUMP for Joy....
Connor sure is.
At age 3 years and 9 months, Connor can now jump straight up.
He became determined to learn to jump while he was on winter break. Night and day he tried and tried and boom....by George, he got it.
At age 3 years and 9 months, Connor can now jump straight up.
He became determined to learn to jump while he was on winter break. Night and day he tried and tried and boom....by George, he got it.
Monday, January 2, 2012
Sunday, November 13, 2011
whats in a name....
EVERYTHING....
Listen very closely. CONNOR SAYS HIS NAME. You will hear the hard C a pause and NER. It sounds like K NER.
We are squealing like girls because we are so proud and Connor is acting crazy because well....hes 3 and thats just what three year olds do.
Listen very closely. CONNOR SAYS HIS NAME. You will hear the hard C a pause and NER. It sounds like K NER.
We are squealing like girls because we are so proud and Connor is acting crazy because well....hes 3 and thats just what three year olds do.
Sunday, October 16, 2011
Saturday, September 10, 2011
someone I love...
Someone I Love
By Lori HickmanSomeone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need unconditional love and support after I am gone - this frightens me to the core. Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life...
And still others don't understand what it is to be me.. they aren't living in my skin.
Monday, August 15, 2011
A bit sour yet oh so proud...
My little boy was just diagnosed with Spastic Cerebral Palsy and is now going to be tested for seizures. The doctor has already pretty much made the determination that what we are seeing in Connor is seizures, we just need to do the 72 hour EEG to make sure they are not harming him. I think she wants to make sure he is not an epileptic.
He has quite a few very spastic movements he does on a daily basis where he basically loses all control of his muscles and he just shakes. Its usually due to being excited. We always thought it was just him being adorable. Apparently there is a technical term for it (Which I cant for the life of me remember what it is) and it is also related to seizure like episodes.
Connor will be hooked up to an EEG machine for three full days later this week into the weekend. We will be monitoring his behavior via video as well.
As with a lot of other 3 year olds, Connor suffers from very bad night terrors. This is common for the age, according to the neurologist but we will be video taping his sleep sessions along with the EEG to make sure there is nothing else going on (seizures) while we are sleeping in the other room.
I am secretly hoping that the EEG comes out PERFECT. The doctor informed me that if she gets nothing (which in most cases with kids with developmental delays we might not because they don't happen frequently enough) he will just be monitored to make sure the seizures don't progress. If she does by chance see something, we shall go from there.
Connor doesn't seem to care much about whats happening. This is his life and he wouldn't have it any other way. Secretly, neither would I. :)
Someone decided that Eric and I would be the perfect parents for this very special child. I personally think it is a lesson. I have amazing patience now and have more sympathy for situations then I ever realized. You never know what life is going to bring you and you are most likely not prepared. You will learn more then you ever thought possible and this child will make you realize that different isn't always so bad. As he gets a little older, things are getting tougher as we start to notice more and more but that will never change who he is and I would be upset if it did. :)
He has quite a few very spastic movements he does on a daily basis where he basically loses all control of his muscles and he just shakes. Its usually due to being excited. We always thought it was just him being adorable. Apparently there is a technical term for it (Which I cant for the life of me remember what it is) and it is also related to seizure like episodes.
Connor will be hooked up to an EEG machine for three full days later this week into the weekend. We will be monitoring his behavior via video as well.
As with a lot of other 3 year olds, Connor suffers from very bad night terrors. This is common for the age, according to the neurologist but we will be video taping his sleep sessions along with the EEG to make sure there is nothing else going on (seizures) while we are sleeping in the other room.
I am secretly hoping that the EEG comes out PERFECT. The doctor informed me that if she gets nothing (which in most cases with kids with developmental delays we might not because they don't happen frequently enough) he will just be monitored to make sure the seizures don't progress. If she does by chance see something, we shall go from there.
Connor doesn't seem to care much about whats happening. This is his life and he wouldn't have it any other way. Secretly, neither would I. :)
Someone decided that Eric and I would be the perfect parents for this very special child. I personally think it is a lesson. I have amazing patience now and have more sympathy for situations then I ever realized. You never know what life is going to bring you and you are most likely not prepared. You will learn more then you ever thought possible and this child will make you realize that different isn't always so bad. As he gets a little older, things are getting tougher as we start to notice more and more but that will never change who he is and I would be upset if it did. :)
Friday, August 5, 2011
A new word...Thats progress
We have a new word....Purr (for the kitty cat that is). It sounds more like PUH but you get the idea.
Here is video number two. This is from the end of the second week on Nutriiveda.
Some new things Connor is doing-
He is associating words with emotions. He has NEVER done this before.
We went to the store today and Connor got a balloon. He was so excited. He told us later in the car-"PUH". and then made the sound of a cat purring. I asked he what he was talking about and he said "lala (Shirley the kitty cat) PUH". "Are you happy you got a balloon and are purring like Shirley when she is happy"? Connor-"YEA"!!
AWESOME!!!!
Here is video number two. This is from the end of the second week on Nutriiveda.
Some new things Connor is doing-
He is associating words with emotions. He has NEVER done this before.
We went to the store today and Connor got a balloon. He was so excited. He told us later in the car-"PUH". and then made the sound of a cat purring. I asked he what he was talking about and he said "lala (Shirley the kitty cat) PUH". "Are you happy you got a balloon and are purring like Shirley when she is happy"? Connor-"YEA"!!
AWESOME!!!!
Saturday, July 30, 2011
A first....
Connors first movie (in the theater)
Winnie the Pooh
Didnt think it would be such a hit but he keeps making bee sounds and signing more meaning he wants to see more of that honey pot. :)
Winnie the Pooh
Didnt think it would be such a hit but he keeps making bee sounds and signing more meaning he wants to see more of that honey pot. :)
Thursday, July 28, 2011
lets communicate...
We are on a mission to help the Con man become less frustrated with not only himself but us as well. I have started him on a product called Nutriiveda. It is an all natural food supplement used in adults for weight loss but proven in children to help improve speech. I have seen so many videos of children taking Nutriiveda (NV) and how much it has improved their speech and their lives that we just couldn't pass it up. I have not seen any videos of children with chromosome abnormalities or of children with other problems on top of speech issues but I am sure they are out there. I truly do not believe this will all of a sudden make Connor talk because as well all know, he has to learn to do that but I do feel that this will give him the confidence and ability to learn the words to help him communicate with us.
I am willing to try anything at this point. I am having a hard time understanding the grunts and crooked pointing and would love just one or two words to come out of that perfect little mouth of his.
He has been on NV for two weeks now. I will be taking a video of him later today or tomorrow and posting it here.
The video here is taken the night we started him on it.
I have noticed a major difference in the sounds he is making and found he is falling less which is awesome. He will go on and on and on for about 5 minutes now just babbling badabadladababa......
this is all brand new. :)
Here is video number one prior to NV
I am willing to try anything at this point. I am having a hard time understanding the grunts and crooked pointing and would love just one or two words to come out of that perfect little mouth of his.
He has been on NV for two weeks now. I will be taking a video of him later today or tomorrow and posting it here.
The video here is taken the night we started him on it.
I have noticed a major difference in the sounds he is making and found he is falling less which is awesome. He will go on and on and on for about 5 minutes now just babbling badabadladababa......
this is all brand new. :)
Here is video number one prior to NV
Thursday, January 27, 2011
Sunday, December 19, 2010
this is what you do....
when you are not feeling well enough to go out to your gym class to play with friends but don't want to stay inside all day. This is day three of what is supposed to be six days of rain.
Tuesday, December 14, 2010
Monday, December 13, 2010
Never thought I would say....
I sure hope we don't make too much money.
Yep, that's right. I am praying and hoping to not be overqualified for SSI for Connor.
We got the call today from the U.S Government. Connor has qualified for SSI services (thank goodness). Now we have to go to the SS office and turn in 7.5 months worth of pay stubs. I was told we would receive a letter after that letting us now either what Connor's income would be or if we were rejected due to income. I cant believe a child who is declared disabled by the government has to depend on weather or not his parents make too little or too much money.
The money will go to good use if our income is accepted. Connor will be able to continue with his current speech therapist even after he starts school next March. With out the extra income, we will lose Diane due to the fact that the state will no longer be paying it and we cant afford $130 an hour.
I am a bit relieved to know that he does qualify. It makes me feel more confident that he will get all he needs when he starts school.
I have never in my life worried so much over one person before. Oh, motherhood!
Yep, that's right. I am praying and hoping to not be overqualified for SSI for Connor.
We got the call today from the U.S Government. Connor has qualified for SSI services (thank goodness). Now we have to go to the SS office and turn in 7.5 months worth of pay stubs. I was told we would receive a letter after that letting us now either what Connor's income would be or if we were rejected due to income. I cant believe a child who is declared disabled by the government has to depend on weather or not his parents make too little or too much money.
The money will go to good use if our income is accepted. Connor will be able to continue with his current speech therapist even after he starts school next March. With out the extra income, we will lose Diane due to the fact that the state will no longer be paying it and we cant afford $130 an hour.
I am a bit relieved to know that he does qualify. It makes me feel more confident that he will get all he needs when he starts school.
I have never in my life worried so much over one person before. Oh, motherhood!
Sunday, November 21, 2010
30 days of waiting...
Apparently we have 30 days until we here if Con will get disability or not.
Our fingers are crossed but our hopes are not up.
Con had his mental eval through the state for SSI purposes on Friday. It was a long wait and Connor was such a perfect boy. He amazes me with his patience and listening skills.
Once we were in the office, I was asked what seemed like hundreds of questions regarding Connor's capabilities. Can he do this does he do that, blah, blah, blah. The doctor then brought out some pictures for Connor to identify. He got the first set RIGHT. I was so proud but nervous because we are trying to get something he deserves through the state and they are very unreasonable sometimes. He then brought out a picture with four fruits. All of which I know Con knows. He didn't even scan the page. He got them all wrong. I am not sure why he didn't even try. Then, out came this GIANT chart of colors. Connor has no clue what colors are what. He failed that one as well.
We were told that we should receive a letter from the state in 30 days. Not sure if this means we will have another test in 30 or our answer will be coming in 30. We shall see.
Did you know a 2 1/2 year old should be able to at least attempt to pour themselves a glass of tap water? INSANE. I had no clue when the doctor asked me if he could do that.
Our fingers are crossed but our hopes are not up.
Con had his mental eval through the state for SSI purposes on Friday. It was a long wait and Connor was such a perfect boy. He amazes me with his patience and listening skills.
Once we were in the office, I was asked what seemed like hundreds of questions regarding Connor's capabilities. Can he do this does he do that, blah, blah, blah. The doctor then brought out some pictures for Connor to identify. He got the first set RIGHT. I was so proud but nervous because we are trying to get something he deserves through the state and they are very unreasonable sometimes. He then brought out a picture with four fruits. All of which I know Con knows. He didn't even scan the page. He got them all wrong. I am not sure why he didn't even try. Then, out came this GIANT chart of colors. Connor has no clue what colors are what. He failed that one as well.
We were told that we should receive a letter from the state in 30 days. Not sure if this means we will have another test in 30 or our answer will be coming in 30. We shall see.
Did you know a 2 1/2 year old should be able to at least attempt to pour themselves a glass of tap water? INSANE. I had no clue when the doctor asked me if he could do that.
Thursday, November 11, 2010
Making a List and Checking it Twice...
With the holidays right around the corner, I must start my list of family members and friends to make sure everyone receives a holiday card.
I have used shutterfly for some time now. We even have a share site through them for family who happen to live in different states. For Connor's first Mother's Day gift to his grandma's we created a collage and framed them. We also recently ordered Fall Cards for family and friends.
This year we will sending out holiday cards from shutterfly. They have so many designs to choose from it makes it fun to "window shop" for that perfect card. They have some beautiful Christmas cards to choose from and some wonderful New Year party invitations for those of us who might be throwing a get together to celebrate the new year.
I am thinking about getting my son's grandfathers a desk calendar for their home of office. They could then look at their beautiful grandson on a daily basis.
They offer wonderful prices on prints and I have never had a problem with the quality of the prints.
Shutterfly is a wonderful site and I cant wait to use them again for our cards this year.
For anyone interested in blogging about Shutterfly and receiving a set of holiday cards, please follow the link.
http://blog.shutterfly.com/5358/holiday2010-blog-submission-form/
I have used shutterfly for some time now. We even have a share site through them for family who happen to live in different states. For Connor's first Mother's Day gift to his grandma's we created a collage and framed them. We also recently ordered Fall Cards for family and friends.
This year we will sending out holiday cards from shutterfly. They have so many designs to choose from it makes it fun to "window shop" for that perfect card. They have some beautiful Christmas cards to choose from and some wonderful New Year party invitations for those of us who might be throwing a get together to celebrate the new year.
I am thinking about getting my son's grandfathers a desk calendar for their home of office. They could then look at their beautiful grandson on a daily basis.
They offer wonderful prices on prints and I have never had a problem with the quality of the prints.
Shutterfly is a wonderful site and I cant wait to use them again for our cards this year.
For anyone interested in blogging about Shutterfly and receiving a set of holiday cards, please follow the link.
http://blog.shutterfly.com/5358/holiday2010-blog-submission-form/
Thursday, November 4, 2010
Laying out the truth
So, I have become accustomed to candy coating most of what is currently going on in my life. I do this for several reasons: 1. It makes me feel better about my situation 2. Most people have no clue what it is I am talking about when I try and explain things 3. I am sick of getting the same response over and over again 4. I am tired of feeling sorry for myself and my family.
I cant candy coat things forever. It has finally gotten to me. I knew it would at some point. I was warned that keeping most of my feelings in would eventually lead me to bust and it has. My head is spinning. I am moody and to be quite honest, a bit depressed.
I almost never curse and every other word running through my head is fuck, fuck fuck.
My son is the light of my life. He is my soul. I love him more than life itself and would jump in front of bullets for him. He is what makes me want to get up in the morning. He is the reason I candy coat everything.
Who knew that when you gave birth to this little thing that appears so very perfect to you, so much could go wrong? Who knew that when you found out exactly what was wrong, it would make you feel worse and make you cry more than you ever had in your whole entire life? Who knew that 1 1/2 years after finding out your son was missing a piece of a chromosome and about 86 genes, you would still feel like shit every day and still sit crying?
I would never trade him for the world but it is getting harder and harder to mask my emotions for him so, I decided to write them all down in hopes that I might get a little relief for awhile.
I wish more people understood Connor's deletion, including myself, his doctors and people around us. I am sick and tired of people telling me "oh, I am sure he will catch up", or "well, he looks great". Yes, thank you for that but that makes me feel worse. He is not catching up and yes, I already know he looks great because he is the greatest and most handsome human being around but, he is not great. Poor guy has a tough life and never complains. I complain for him because I have NEVER had to do half the stuff he has to do and I never will have to. That is not fair.
It's not fair to wake up your son almost every day from a sound sleep to go to a three hour therapy session. It is not fair to watch your son fall OVER AND OVER again hitting his head crying in pain because he has horrible balance. It is not fair to have to strap your son into these god awful braces every night preventing him from moving his little legs to get comfortable. It's not fair that I sit here crying to the point that I cant see. It's not fair that my son is labeled as retarded and everyone else around me has these "normal" little children that can run and talk and play with toys without having to be told how to use the toy every single time. WHY? It's really not fair. What did I do?
Connor deserves SSI. He needs these benefits and/or the money to help us pay for the medical bills. I want to spit on the social security office. You have proof he is missing vital genes to live a normal life with out assistance and you still are making him go through test after test? Fuck you. He flunked your speech test, why do you need to make him go though a mental evaluation? You have the proof that the doctor labeled him as retarded (something that makes me cringe every day). Why do you need to make us go through a test to see what degree of mental retardation he is at? Don't you know that this bothers us and it's not fair? What else are you going to make this poor boy go through to possibly get the money and benefits he deserves?
I am sick and tired of my husband telling me everything will be ok. I am sure it will when I am done feeling guilty and horrible inside but you, my love, are not the person who takes him to these appointments, you are not the one who goes to every therapy session. You don't have to wake up your son to take him to PT, OT or speech. You for some reason have a fear of driving and make me, your wife, wake up and take you to work every day. When the hell do I get a fucking day off?
I cant do this anymore. I cant sit here and tell myself everything is ok. I don't want Connor in special education. I don't want Connor to wear braces. I want Connor to talk, to run, to not fall, to have a normal brain, to not see hundreds of doctors and I want those 86 genes that he is missing back. I want to know why this bothers me so much and why it bothers me when people tell me it is ok. It's not ok. You don't have to do this everyday and you don't have to feel the guilt of knowing this is not fair. You don't have to look at your son who never complains and wish that he knew another type of life.
It is not fair.
I am sorry for the rant and I am even more sorry for my profanity. I will be keeping this post up only for a few days until I feel better. The goal of this post is to help ME. The more I read it out loud the better I will feel.
I cant candy coat things forever. It has finally gotten to me. I knew it would at some point. I was warned that keeping most of my feelings in would eventually lead me to bust and it has. My head is spinning. I am moody and to be quite honest, a bit depressed.
I almost never curse and every other word running through my head is fuck, fuck fuck.
My son is the light of my life. He is my soul. I love him more than life itself and would jump in front of bullets for him. He is what makes me want to get up in the morning. He is the reason I candy coat everything.
Who knew that when you gave birth to this little thing that appears so very perfect to you, so much could go wrong? Who knew that when you found out exactly what was wrong, it would make you feel worse and make you cry more than you ever had in your whole entire life? Who knew that 1 1/2 years after finding out your son was missing a piece of a chromosome and about 86 genes, you would still feel like shit every day and still sit crying?
I would never trade him for the world but it is getting harder and harder to mask my emotions for him so, I decided to write them all down in hopes that I might get a little relief for awhile.
I wish more people understood Connor's deletion, including myself, his doctors and people around us. I am sick and tired of people telling me "oh, I am sure he will catch up", or "well, he looks great". Yes, thank you for that but that makes me feel worse. He is not catching up and yes, I already know he looks great because he is the greatest and most handsome human being around but, he is not great. Poor guy has a tough life and never complains. I complain for him because I have NEVER had to do half the stuff he has to do and I never will have to. That is not fair.
It's not fair to wake up your son almost every day from a sound sleep to go to a three hour therapy session. It is not fair to watch your son fall OVER AND OVER again hitting his head crying in pain because he has horrible balance. It is not fair to have to strap your son into these god awful braces every night preventing him from moving his little legs to get comfortable. It's not fair that I sit here crying to the point that I cant see. It's not fair that my son is labeled as retarded and everyone else around me has these "normal" little children that can run and talk and play with toys without having to be told how to use the toy every single time. WHY? It's really not fair. What did I do?
Connor deserves SSI. He needs these benefits and/or the money to help us pay for the medical bills. I want to spit on the social security office. You have proof he is missing vital genes to live a normal life with out assistance and you still are making him go through test after test? Fuck you. He flunked your speech test, why do you need to make him go though a mental evaluation? You have the proof that the doctor labeled him as retarded (something that makes me cringe every day). Why do you need to make us go through a test to see what degree of mental retardation he is at? Don't you know that this bothers us and it's not fair? What else are you going to make this poor boy go through to possibly get the money and benefits he deserves?
I am sick and tired of my husband telling me everything will be ok. I am sure it will when I am done feeling guilty and horrible inside but you, my love, are not the person who takes him to these appointments, you are not the one who goes to every therapy session. You don't have to wake up your son to take him to PT, OT or speech. You for some reason have a fear of driving and make me, your wife, wake up and take you to work every day. When the hell do I get a fucking day off?
I cant do this anymore. I cant sit here and tell myself everything is ok. I don't want Connor in special education. I don't want Connor to wear braces. I want Connor to talk, to run, to not fall, to have a normal brain, to not see hundreds of doctors and I want those 86 genes that he is missing back. I want to know why this bothers me so much and why it bothers me when people tell me it is ok. It's not ok. You don't have to do this everyday and you don't have to feel the guilt of knowing this is not fair. You don't have to look at your son who never complains and wish that he knew another type of life.
It is not fair.
I am sorry for the rant and I am even more sorry for my profanity. I will be keeping this post up only for a few days until I feel better. The goal of this post is to help ME. The more I read it out loud the better I will feel.
Monday, October 25, 2010
Bubble Boy...
When I found out that Connor had a chromosome deletion we had many ups and downs. We were told more than once that he had a brain disorder and he would possibly not live a full life. We were told he would have heart problems and several other disorders that were so overwhelming to think about at the time (and to be honest still are). Connor saw so many specialists (still does) that first year it was almost hard to keep track of our appointments.
After several months of tests we found out he does not have a brain disorder (thank God) but does have an underdeveloped brain and missing gray matter that to all of his doctors does look exactly the same as some very serious diseases. I cant tell you how lucky I feel to know that Connor is somewhat a miracle. He has so much going on but all in all it could be worse. I personally know a few people who's children do have this particular disease and I know they would trade places with me in a heart beat. I don't care if my child's brain is missing vital information and I don't care that my son has "special needs". I HAVE my son. Who can ask for more. It pains me to think of all the parents that lose their children. They are supposed to watch us pass. It should not be the other way around. I do more research then needed and have become sort of an advocate for children with Chromosome Deletions. I wish it was more widely understood.
As rare as Connor's condition is and as confusing as it is too his doctors and to us, there are other children and parents out there even more confused.
I do notice as Connor gets older that it is affecting him more and he has many more challenges than he did a year ago which just prepares us for more doctors and more therapies. His life is our life lesson. He has taught me patience, strength and structure.
He is by far my soul mate and my hero. Not to mention our little miracle.
When we were told that he had a chromosome deletion and began all testing and brain scans, Eric and I were very confused. I became picture crazy because I didn't know at the time weather or not it was a fatal condition, a normal condition, rare or what have you. I started documenting everything and to this day still do. Each day is a different day and the most special day with Connor.
I took a photo of Connor in a bubble bath starting at the age of four months when I took him out of his bath sling. Connor was not able to sit up properly on his own (for more than a few minutes) until over a year so laying in the tub was normal for us and the happiest times for Connor. He still prefers to lay in the tub to this day. At around 23ish months he became very afraid of bubble baths so I had to stop shooting my "bubble boy" shots at the age of two.
I am now in the process of editing them to black and white, finding proper frames, blowing them up and displaying my beautiful son in my apartment.
I have so many shots of Connor that it is hard to believe that I still have a workable index finger. I cant believe it hasn't fallen off yet. But, until they find other kids with the exact deletion as him and until I can go somewhere and say Connor has blah blah blah and someone is able to respond oh, my cousin has that too, I will treat each day like it is a special day.
4 months
8 months
13 months
16 months
20 months 
24 months
After several months of tests we found out he does not have a brain disorder (thank God) but does have an underdeveloped brain and missing gray matter that to all of his doctors does look exactly the same as some very serious diseases. I cant tell you how lucky I feel to know that Connor is somewhat a miracle. He has so much going on but all in all it could be worse. I personally know a few people who's children do have this particular disease and I know they would trade places with me in a heart beat. I don't care if my child's brain is missing vital information and I don't care that my son has "special needs". I HAVE my son. Who can ask for more. It pains me to think of all the parents that lose their children. They are supposed to watch us pass. It should not be the other way around. I do more research then needed and have become sort of an advocate for children with Chromosome Deletions. I wish it was more widely understood.
As rare as Connor's condition is and as confusing as it is too his doctors and to us, there are other children and parents out there even more confused.
I do notice as Connor gets older that it is affecting him more and he has many more challenges than he did a year ago which just prepares us for more doctors and more therapies. His life is our life lesson. He has taught me patience, strength and structure.
He is by far my soul mate and my hero. Not to mention our little miracle.
When we were told that he had a chromosome deletion and began all testing and brain scans, Eric and I were very confused. I became picture crazy because I didn't know at the time weather or not it was a fatal condition, a normal condition, rare or what have you. I started documenting everything and to this day still do. Each day is a different day and the most special day with Connor.
I took a photo of Connor in a bubble bath starting at the age of four months when I took him out of his bath sling. Connor was not able to sit up properly on his own (for more than a few minutes) until over a year so laying in the tub was normal for us and the happiest times for Connor. He still prefers to lay in the tub to this day. At around 23ish months he became very afraid of bubble baths so I had to stop shooting my "bubble boy" shots at the age of two.
I am now in the process of editing them to black and white, finding proper frames, blowing them up and displaying my beautiful son in my apartment.
I have so many shots of Connor that it is hard to believe that I still have a workable index finger. I cant believe it hasn't fallen off yet. But, until they find other kids with the exact deletion as him and until I can go somewhere and say Connor has blah blah blah and someone is able to respond oh, my cousin has that too, I will treat each day like it is a special day.
4 months
8 months
13 months
16 months
20 months (the fear of bubbles was beginning)
24 monthsThe last shot of Connor as "bubble boy"
Sunday, October 3, 2010
a list of ten
10 things that have changed since I have been married and/or had a child...
1. I have no time to cut my hair which used to be maintained short on a regular basis.
2. The only people that call me on a regular basis anymore are my parents and telemarketers.
3. When my parents call, they don't want to know how I am, they want to know how Connor is.
4. I never get invited out with friends. When I say never, I honestly mean NEVER.
5. I am pretty sure I don't have "real" friends anymore.
6. Connor and Eric are my life.
7. I gained 50 some odd pounds
8. I lost 20 of those pounds
9. My patience level has improved profoundly.
10. I miss going out.
1. I have no time to cut my hair which used to be maintained short on a regular basis.
2. The only people that call me on a regular basis anymore are my parents and telemarketers.
3. When my parents call, they don't want to know how I am, they want to know how Connor is.
4. I never get invited out with friends. When I say never, I honestly mean NEVER.
5. I am pretty sure I don't have "real" friends anymore.
6. Connor and Eric are my life.
7. I gained 50 some odd pounds
8. I lost 20 of those pounds
9. My patience level has improved profoundly.
10. I miss going out.
Saturday, September 18, 2010
Lets take a trip....
To our local fire house.
We took Connor to the fire station recently because he has shown a major obsession with trucks and sirens lately. Every time I fire truck or emergency vehicle drive by with their sirens and lights on Connor cries when they are gone and signs for more. Sadly he does not quite get the concept yet that they are on their way to save lives and can not stop for him.
The tour was amazing. They showed us EVERYTHING. The ambulance, fire trucks (inside and out), all of their emergency equipment, the tower where they dry their hoses, living quarters, kitchen and locker room.
Connor was scared at first. I don't think he realized how big the trucks actually were. But, within ten minutes you would have thought the kid lived their. The firemen were so kind. We all got stickers and Connor got quite a few goodies and memories to take home with him. He now waves every time a fire truck drives by.
We cant wait to take him again.
We took Connor to the fire station recently because he has shown a major obsession with trucks and sirens lately. Every time I fire truck or emergency vehicle drive by with their sirens and lights on Connor cries when they are gone and signs for more. Sadly he does not quite get the concept yet that they are on their way to save lives and can not stop for him.
The tour was amazing. They showed us EVERYTHING. The ambulance, fire trucks (inside and out), all of their emergency equipment, the tower where they dry their hoses, living quarters, kitchen and locker room.
Connor was scared at first. I don't think he realized how big the trucks actually were. But, within ten minutes you would have thought the kid lived their. The firemen were so kind. We all got stickers and Connor got quite a few goodies and memories to take home with him. He now waves every time a fire truck drives by.
We cant wait to take him again.
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