You know, I am not usually up on current events or pop news. I catch bits and pieces of Good Morning, America occasionally between getting children up, moving, and ready for their day. The only reason I know anything else is because A got me a subscription to Us magazine for Christmas. I’m currently still reading April’s first issue.

Yet, I heard about the new fad diet to help brides get skinny for their Big Day. They have a feeding tube inserted through their nose and they carry around their 1000 calories of liquid nutrition for 10 days to lose weight.

Take a deep breath, and absorb that…

Believe me, I am totally against this type of reckless behavior. As a nurse, I can only imagine the detriment this could possibly be doing to multiple systems of the body (and quite frankly, I think the doctor who is willing to do this…ugh!). As a mother, I am irritated that our daughters are being taught, once again, that you cannot be beautiful unless you are pencil thin, with big boobs, and lots of junk in your trunk.

What the news media fails to mention, or remember, is that…

I thank God every single day for the feeding tube diet.

My son survives because of this “wacky” diet. Without that tube giving him the sustenance he needs (plus vitamins and minerals), he would not be walking this earth. He has to sleep in a special bed with the head raised to a specific height. He has to sleep with a plastic tube running from an IV type pump to his stomach. If he rolls over, it pulls on the tube causing pain. If he pulls the tube out…he could damage himself permanently. He receives every medication through his feeding tube. It has to be covered when he plays so that he doesn’t pull it out, and so that nothing foreign could get near it causing infection. He can’t ride many rides at theme parks, because the bar to hold him in would rub his tube. He can’t play like other kids, because he might pull the tube out.

Every pound he loses will take weeks or months for him to regain.

So, sure, it sounds like a great way to shed pounds fast (can you hear my eyes roll?).

Please, put some more stigma on my kid while you’re at it too.

Is this optimal for Jack, no.

Is this the way I pictured my life, no.

When we were faced with having Jack’s tube placed, I agonized. I researched. I cried. I begged God to miraculously touch my son and heal his brain so he could swallow. I sat with speech therapists and cried. I talked to other moms…and cried. And when I held my tiny, 13 pound, 8 month old son when he came back from surgery, I cried. I cried because I knew his life was saved. Even though that was the hardest decision I had ever made.

That was almost 5 years ago.

I thank God for the feeding tube diet, because every day I have to wake up at 4 AM to silence the beeping from that $^%&*&#(* pump, means that I have another day with Jack.

Today was Jack’s IEP.

We’re professionals at this, so we were prepared.

Basically, they (finally) came to terms with the fact that they are putting unrealistic goals on him, so we’re backing off. They also have decided that his medical issues are bigger issues than his learning disabilities, so we’re going to (finally) take that in to consideration.

They will be sending an occupational therapist to the house to evaluate him for assistive technology (finally) to see if he’s more appropriate for a keyed type computer, or something like an iPad. Either way, it’s a good thing. He still qualifies (easily) for speech. Her goals have changed too. Mostly because he’s not progressing as well as they had hoped, but that’s OK.

They would like him to enter the Medically Fragile Classroom at the start of next year. I’m not sure that’s at all appropriate and I said as much. They actually agree with me, but because they’re “with the District” they have to tell me what the District wants me to hear.

He did fairly well on his testing. Of course, motor skills are quite lacking, and fine motor is worse, but we’re plugging on. We’re going to work on having a picture schedule hanging somewhere for him, so that if there is a change in plans, we can show him by picture, rather than having him freak out over change. I’m not entirely sure that will work, but it’s worth a shot…

That’s it! I’m thrilled that they are (finally) joining the year 2011 and allowing us to discuss assistive technology. It makes no sense for it to be there for use, and them not to allow us to utilize it. It’s going to be a definite improvement over the current frustrations of having a kid with an essential tremor try to write his name and cut with scissors!

These days, most of the time I feel like I can’t catch my breath.

I have spent the better part of 4 years fighting with people about my son, his care, bills, whatever… in the name of advocacy.

However, I’m done. I’m done being ugly. That’s not who I am. I’m going to be a kinder, gentler Heather. I’m going to educate rather than being furious at the world. I’m seriously going to teach the world how to deal with my kid and other special needs kids without sounding like I’m preaching. People don’t want to be preached at, they want to be taught! Anyway, that’s another topic for another day…but it brings me to my point.

I feel pretty sure that we are quitting therapy. No more physical therapy. No more occupational therapy. No more. He will get what the school supplies (a preschool teacher and a speech therapist in my home).

Why? Why on earth would I do this?

Well, there are lots of reasons: 1. It’s going to put us in the poor house2. I am a registered nurse. Why can’t I do therapy with him at home? 3. I should not have to choose between allowing J to swim, or to take Jack to therapy. 4. Since we took our “summer break” Jack hasn’t been on antibiotics once (someone knock on wood, please!). Isn’t that quite telling for a kid with junky lungs?

I could go on. I’m truly exhausted.

The benefits of therapy can be touted loud and clear–I understand that. Yet, I miss my son. I miss being the one playing with him. I want to show him things. I don’t want him to miss out on “normal” kid things because he’s at therapy all the time.

I’m whining now…I’ll stop.

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Updates: thank you all for your well wishes on our 4 years! That was very sweet and fun!

The YMCA debacle…continues. They had a man email me. Basically he said they were sorry, but their precious pool deck is more important than the safety and comfort of the children. I wrote back. I may post my letters here if I get brave.

Normally, Monday mornings are a zoo around here!

Get up, breakfast, everyone dressed, homeschool begins, and we’re out the door for Jack’s PT and OT.

And here I sit on the couch.

Jack is having some weirdness. He’s having a very difficult time functioning. He just can’t seem to make his body do what his brain is telling it.

So, he screams.

Blood curdling screams.

I’m talking screaming-like-someone’s-trying-to-steal-your-favorite-chocolate screaming– for awhile.

And by awhile, I’m not talking 5 minutes. I’m talking the time it takes to get diapers, Easter supplies, birthday gifts, socks, shoes, clothes, and sunscreen at Target.

Before you judge… This isn’t merely behavioral. We don’t often leave the house. Jack has been on medications for his weirdness for 14 months. He physically and mentally cannot control what goes on between his brain and his body.

It just about breaks my heart to admit that.

Our appointment in Tampa isn’t until August. The doctor here has been called 4 times since Thursday, and he hasn’t bothered to call back. You know, that’s how we roll here in the Savannah. “So what if your kid doesn’t sleep, screams constantly, and tries to hurt himself constantly? You’re not as important.”

Which depresses me.

My feelings against the Savannah medical community grow darker with each passing day.

After our Target foray, Sebi looked at me and proclaimed that watching Jack be like that was no fun!

I was torn between bursting in to tears and beating him to death.

This is what happens in our world.

Daily.

I’m alone.

No respite.

No help.

Nobody.

And I really don’t know how much more I can take alone.

(So, who wants to help find Sebi a new job? Hmmm? Anyone?)

[also, I don't mean to be a whiner. I'm tired, can't sleep and worry constantly. I'm just cranky.]

While happily (I was happy, Jack was miserably screaming) watching Janson swim the other night, the Case Manager calls. I was surprised because it was almost 6:30 at night. I answered, and she told me that all is well, and we should have a bed shortly! Well, that was indeed exciting news! Yesterday, Jack had back to back therapy appointments (note to self: NEVER EVER do this again. More about that later…). Sebi called the DME (durable medical equipment) company and they said they were ordering the bed but it would take 4-6 weeks! So, I guess in 4-6 weeks I “might” be able to look forward to a bed….or a full night of sleep (one could only hope…). So, Jack has speech and OT yesterday. We go from one, where they try to get him to eat (he spent an hour saying, “NO!” and he pushed a goldfish cracker around his tray to avoid having to do anything else. It was frustrating.), to speech, where he made an umbrella out of construction paper (which made him cry, because he HATES water, which means he HATES rain—it happened to rain yesterday, which was disaster in and of itself). We got home around 1145 and I was going to fix him lunch. He didn’t want to eat. He laid on the floor of the living room and started to kick the couch and scream. And cry. And bang his head on the wall. I tried to soothe him. I tried to hold him. I tried to reason with him. I took his temperature. I looked in his ears. I checked his oxygenation. I did everything I knew how to do…and he kept screaming. At 3:18, I had had enough. I handed him a bottle of Ranch dressing (I cleaned out my fridge trying to offer him everything else), and he drank it. Not much of it, but enough to make him happy. When he was done, he fell asleep. It was a long night…And, now, I get to give him a bath! OH HAPPY DAY!!!

We’ve had a day!

Let’s paint the pretty picture…first day back to school (not too much drama this morning–she was pretty good about it). First day back to therapy–Jack decided that he wasn’t feeling quite up to therapy today. He pitched a royal fit and refused to even look at Wendy the Wonderful. His legs are somehow worse than they’ve been in awhile. He fell on the treadmill and just trying to walk a straight line…several times. He fell with me 3 times just trying to get in the door!

Then….we had our neurologist appointment. It didn’t start out well. The receptionist stole my insurance card, and when I went to ask for it back she said, “I don’t have it!” I said, “yes you do, I see it right there!” She says, “that’s not yours!” So I grab it and say, “well, I’ll be doggone…my husband must have another wife!” I got my card back. So I went and sat down…a little bit later, a quite exasperated nurse calls us. She asks why we’re in the wrong office. I said, “nobody told me to go elsewhere!” The receptionist took that moment to speak up and announce that she told me where to go and I didn’t listen. I bit my tongue hard because I was about to tell her where she could go too!!! I know that isn’t nice, but I’ve totally had it!

So we get back there and Jack is weighed and measured and all the bells and whistles blow—-oh he’s so small and skinny and his head hasn’t grown…all the stuff we already know! Dr P has hired a nurse practitioner, who is GREAT! She came in (he must have sent StoneFace the Resident back off to Emory) and talked to Jack and me and said she’d be back with Dr P. They both return and Jack is happily spinning the chair in circles. He’s been doing that since we walk in the door.

Dr P asks how the new meds are working. I tell him clearly not well…as evidenced by the incessant circles we’re making, and GOD forbid we stop him! Then, Dr P made the fatal mistake of asking about Jack and his hats. I told him that the hats have been like his skin forever! He said he didn’t see a hat the last time (and truth be told, he had the hat off when he examined Jack last time, Alissa had pictures). I didn’t know this at the time. I said, “I’m sure he had it on…he sleeps with it on, we go everywhere with a hat!” So we’re laughing and he says to make sure I buy lots in case we lose one—blah, blah, blah…then, he reaches over and takes the hat off of Jack. WHY????!!!! I don’t know…I am not responsible for the reaction. Yet I am. Jack turned, lunged, and began pummelling Dr P. When Dr P didn’t give the hat back, he bit him.

(At this point, I think I had an out of body experience. I was secretly praying that the Rapture happen. RIGHT THEN! Lord, Please, come get me! Then I kept thinking, OH Heather, please grab the baby! Reality struck me….) I grab Jack, and had no clue what to do—I grab the hat and put it back on him, and he’s sobbing, and sobbing….

We got a new prescription. And, we were told if it doesn’t work pretty darn quick, to call him, and he’ll change it over the phone—no need to have another appointment next month. He’ll see us in March. Hopefully, by then, his wounds will have healed.

So, now we’re home. And I am watching him sleep. He seems so good when he’s sleeping. He seems very normal. I feel like the bigger he gets, the less control I have. Dr P said that kids with cocaine have a real hard time with consequences—they lack the ability to understand. And it’s true. I know…and it’s becoming more and more obvious that Jack isn’t “normal”. He’s not developmentally on target at all. He still can’t sort shapes very well. It’s just too much…I don’t want to talk about that…AND–as if that wasn’t enough! First, Jack’s Durable Medical Equipment place (where his tubing supplies, and food comes from), called and said that we don’t have insurance. Which is crazy, right? Well they eventually found out we do have insurance, and, in fact, it’s the same insurance we had a week ago when they looked it up–it hasn’t changed in 11 years! However, because it’s the blessed beginning to a new year, we owe them $1003 before they will deliver his supplies. Never mind that he will die without them. Pony up the money and do it today. So, I am in a bad mood and I just want to cry.

Jack’s girlfriends at the dinner!

Jenny the Great, Jack, Wendy the Wonderful

Today was the first day of me being kicked out of therapy. OK, so I wasn’t kicked out. And, actually, I had a very nice conversation with Wendy and Jenny—and you all were right, they were just looking out for me. So I am in control of if I stay and watch, or go and do my Christmas shopping. Either way is fine. When I dropped him off, Wendy kissed me and said “See ya!” and took Jack and left. I felt so empty. My arms were empty. My car was empty. I went into the mall with NO children! I carried no diaper bags. I was completely and totally nauseated and I made Sebastian talk to me on the phone several times. There was a point where I almost–ALMOST–declared war on a Cinnabon, but I didn’t. Then there was the Hickory Farms booth…I have a special place in my heart for a cheese ball…but Wendy called. She called to tell me he was OK. I was almost sad. I kind of wanted him to need me somehow. But it was really good to know that he trusts them enough to no worry about me. Upon my return to therapy, I received so many slobbery kisses and hugs! It was oh so worth it! I told them next week I was staying. We need to do this slowly……for mom’s sake! Guess what else we did? Sebastian and I are exhausted. And we are desperately in need of some refreshing. So…we booked us a vacation!!!! We’re taking the kids and going to Disney for a week! We’re going for our Anniversary. Of course, with Jack, this is a logistical challenge, but Disney seems to be very accommodating for us so far! We’re not going to do the typical Disney hurry-let’s-get-to-the-next-ride thing…we can’t. So we’re going to take it easy, and do what we want and no worry for a week. No doctors. No therapy. No Big G. Nothing but being a family. Hmmm…imagine that!??Saturday was Sebi’s birthday. That night, we had our dinner with Birney and his “group”. It was really nice. I’ll post pictures here in a minute…the kids were adorable and Jack did fairly well. Janson won 2 door prizes, so she was happy! Birney said some really nice things about us…I don’t do well with nice. Nice makes me cry. That’s why I don’t wear makeup…My grandparents—Non, Mamaw and Pappy—yep, they’re ALL getting in the car and driving here this week! I would pay good money to ride in that car! We all tease Mamaw that her favorite thing to say is, “Go to He$$ Harold!” I’m sure it will be an adventure! They will be here to meet the Big G too…I can’t wait for that show-down! Mom and Dad come for the weekend and then they contingency moves South to Orlando for Thanksgiving.

Hey!So I am having another day…. Jack got up at 2 AM, and stayed up. Imagine the good mood he (and I) was in when we got to therapy at 9:30?! Well, we got to therapy and he did fairly well. He attempted to finger-paint (but he discovered that paint is wet and then decided not to), and he did pretty good with his walking/gross motor skills. Well, when we were almost through, Wendy brought me a book and a Starbucks gift card. She said that next week she wants me to drop him off and go spend my 2 hours doing nothing. So, here’s the issue:a) do they think I am there too much? And what is too much when you are trying to do the best you can for your child? I want to see what they are doing, so I can do it when I get home. Am I doing something wrong/inhibiting his therapy?ORb) are they just really being nice to me? I am much better at being defensive…not so good with people being nice. Nice makes me cry—and not just the Crocodile Tears cry; I’m talking the UGLY cry. I’m very emotional—I think it also has to do with this Katie Beckett/Medicaid paperwork. It’s very painful to get through. They want to know how his birth went… My first draft said, “how would I know?” My second draft said, ” I wasn’t privy to that information until he was 3 months old.” My latest draft says, “__________” because I quit. I’m thinking that maybe, should I get more than 3 hours of sleep, I might have a better chance of success here, though. Sebi is in Tampa for a conference, so it’s just me and the kiddos. I’m counting the days until Thanksgiving….I can’t wait for a break from school/therapy…and the chance to eat junk without wondering what the neighbors would think. I’m pretty sure my next door neighbor thinks I’ve lost my mind. The other afternoon, I polished off a bag of popcorn and then a bag of Doritos. Washed it down with a coke. Then, I felt sick the rest of the day. More later…

This is my second time writing this. Jack decided to play with the computer when I went for a cup of coffee…So, here we are in September….school is off with a bang. She loves her teacher. But more than that, she loves riding the bus! The first day she rode…it was a glorious morning. She was happy and bouncy—very helpful! We walked down the block to the bus stop. We wait. And wait…and wait some more. Finally, the bus shows up. The big yellow doors open and Janson hops on. I am waving and blowing kisses—when the bus driver comes down the step. She HUGS me and says that she wants my phone number in the morning, and not to worry “cause she’s gonna take care a- my bay-bay.” Then she introduces herself by name—you’ll never guess it—her name is Ms. Lovewine! I prayed the whole way home.The boy in the blue cast is doing fine. He’s hating the cast, but what can you do? He’s not eating well. He’s sort of on hunger strike. The only thing he wants to eat is potatoes. And sour cream. The birthdays were this weekend as well. What a zoo! The kids had a blast. We rented one of those bouncy things and they bounced themselves silly! Janson got swimming lessons (which she LOVES—she says swimming is better than soccer or basketball, so I think she’s found her sport)…so she also received a towel that looks like a hippo, goggles, swim suits, and a bag to carry it all in. Jack got lots of cars (since that’s his latest thing) and he got a car to ride in for when we get J at the bus. They had a really good time…and even though Jack was allowed to eat cake…he didn’t like it! As a super special surprise, Wendy the Wonderful showed up to the party! I was so excited. So was Jack! So…then there was the Big G saga. She came on Friday, and was very upset over Jack breaking his arm. First she asked if he did it on purpose (because lots of 2 year olds intentionally break their arms), and then she asked if I was actually watching him when it happened. She went on to insinuate that I just let him run wild and hope he doesn’t hurt himself. THEN, before I could be mean to her, she said she wanted to know if I called the neurologist because she thinks it’s time to medicate him. I didn’t know what to say. I mean, this lady works for the state, so I am sort of freaking out. When she finally vacated my house, I cried. I an not about to medicate him. I told Wendy all about it and she made me feel lots better. And she said if she tries anything, that she and Jenny will help me out. I have tried so hard to do everything I can to help this kid out. I have tried to be the best mom…I’ve done everything the doctors have suggested. I’ve read everything I can get my hands on. And, quite frankly, I am exhausted. I think that’s it for now. Janson goes to the dentist again today, and both of them go to the doctor for their birthday check ups tomorrow. Will let you know how it all goes.