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.

WELL.....

We make too much money.  I'm bitter.
ENOUGH SAID.

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!

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.

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/

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.

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 

(the fear of bubbles was beginning)

24 months

The last shot of Connor as "bubble boy"