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LOVE DOES NOT COUNT CHROMOSOMES~


                            FACE BOOK STATUS THIS A.M.
                     JODY'S ANNUAL F/B --SOAP BOX RANT

I usually keep my status upbeat and cheery, but I have to pull out the soap box for just a moment to vent this morning. This is long, (so you may not have time to invest in reading this.) Most of you know our precious Eddie Jett. He has 1p36 deletion syndrome, which is extremely rare, and has challenged that little guy from the day he was brought into this world.

I'm so proud of Skylar and Jeremy for their unwavering support, care and love for him, not to mention Tari Jo Blankenship, and the rest of his helpers in his special needs class at Southside. What has baffled me this morning is the fact that Skylar has had to take several days this week, dragging him around to Psychiatrist, and Dr.s verifying that he is truly disabled for the Social Security Administration. (Mind you, this amazing, precious kiddo will more than likely never be able to live on his own, and need support from family members, which is fine...we love him and he will forever be innocent, in a sense, of the things that jade us in this world.)

Skylar had to literally run around after him, trying to keep him contained, as, at her first appt., she was rudely told, "you guys can go have a seat now 'please'." as Eddie Jett innocently played near their broken down weight scales. Skylar looked at the snotty receptionist and said, "he does not understand the concept of, "have a SEAT." Clueless Dr.s held up pictures (turtles, etc.) asking him, "what is this?? What is this?? Can you tell me??" Can you stack these blocks into a tower?" and so on and so forth.

Eddie Jett loves turtles, he would probably try to hug one if it was put in front of him but certainly cannot verbalize the term for the little shelled creatures, or understand that it might snap his little fingers if he tried to kiss it. Eddie Jett loves blocks, but cannot build a "tower" as his dexterity skills are affected greatly by his syndrome, (he took his first steps at the age of three.) Most six year olds are in first grade, speaking,reading,dressing themselves, playing T-ball, etc., where Eddie Jett is celebrating his milestones one wobbly step at a time.

Just yesterday, Skylar called me in joyful tears, shrieking and telling me that she asked Eddie what DVD he wanted to watch, and he (mocking his little sister Maddy, who always says this) said in his precious way, "mmm, I dun know!!" I screamed so loud on the phone, so excited about his little phrase, that anyone would have thought I won Publisher's Clearing House Sweepstakes!!

We usually know what Eddie Jett wants, as our family knows Eddie's special body language,(he has approximately three or four words that he puts his spin on, but it's heartbreaking when he is sick, has a headache, or really wants something, and he cannot specifically tell us. To see him cry, and just point to his head if something scares him or he's not feeling well is gut wrenching.

My point to this long rant is; there are so many who take advantage of our social security system, welfare, etc. So much abuse of government funds by people who just breeze through the system, but I have time and time again listened to Skylar as she tells of the red tape, form after form after form she has to fill out in triplicate, and phone call, after phone call she makes that doesn't get returned. And when it does she's transferred to someone who is clueless as to Eddie's condition, and frankly most don't seem to care. I am more than upset by the way

Skylar and Eddie Jett had to jump through hoops, just so his condition could be verified AGAIN. They made her feel as though she and her sweetest boy were on trial. Skylar is the most incredible mother with two other precious children to care for as well. I'm so proud of how she handles all the responsibility, and loves on those kiddos everyday. (She just called me, and is in the middle of making them pancakes ---and not the microwave version

I"m upset that Skylar had to sit, as a mother, and put up with the indignity of Dr.'s and staff basically rubbing it in her face that Eddie Jett truly has severe issues to deal with, physically and mentally. All they had to do is order, AGAIN, previous records of the countless hospital, and specialist's visits, Shriner visits, therapy visits, and school records (which, they ALREADY have on file.)

I guess they may have assumed that Eddie Jett magically re-grew the tips of his 1p36 Chromosome since they last checked! Parents of these precious children have so much on their plate, so much to deal with each and every minute of every day. There's never even an hour to just be in Zen mode. Bureaucracy is the last thing they should have to deal with.

In conclusion, the receptionist that looked down her nose at Skylar and Eddie Jett, as he toddled around her office (feeling trapped in the room, as he always does at Dr.'s offices) with Sky hot on his trail as usual, telling them they NEEDED TO HAVE A SEAT, was certainly lucky Ga-Ga was not there! I may have just pulled her up out of hers! (Did I just say that?...yep I did.)

Thinking of the families that have special angels this morning, and saying a prayer for you all. May the system be kind to you, and may you get moments of peace. Deep breaths~

Much love and many blessings,

Jody


This little guy is my most special Dude!! <3

Ga-Ga and Eddie Jett~



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