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.]
You're not "just cranky." You have a completely valid reason to be *more* than just upset.
I love you guys. And I'm praying for help, respite and everything else you need.
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I just started following & cant wait to be apart of your journey!
& thank you for the encouraging comment on my post!
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Wow – what a way to start the day! I hope you find some answers soon about Jack! And thanks for stopping by my blog on ICLW – nice to meet you!
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And yet you shine your beautiful self onto others and give us words of encouragement and support. You are amazing. I would try to get Sebi a job here, but Wilmington has worse healthcare than Savannah. Sad, but true. What does he do? Send me an email. You never know who knows someone…or something.
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I don't know, Heather…if I had a problem and my doctor didn't call me back, I'd be looking for another doctor by the second time I had to call them. The best doctor I ever had (and the one with whom all others get compared to) was in NYC. Ironically, he was an orthopedic specialist to many famous atheletes in the NY area. I say that because despite that, he was NEVER too busy to call me back. I remember once, when I had just moved in with my friends who had a 9 year old at the time, I caught some weird bug that I had absolutely no defenses against and I woke up projectile vomiting on a Saturday night. Finally, about 6 AM Sunday morning, I could take it no more and I called my doctor. Of course, I got his service. By 6:30 or so, he had called me back and had phoned in a prescription to the pharmacy for me. To me, THAT is a great doctor. I wish you much better luck in Tampa.
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I truly hope you find some answers soon! You sound like a very strong and determined person! You and Jack are in my thoughts!
Thanks for stopping by my blog on ICLW – it was nice to meet you!
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Oh hon. I so wish you lived up here where we get funding for respite and everything like that. Or I at least wish I lived closer so I could come help you out.
Hugs and love sweetie.
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Many, many hugs to you.
ICLW
http://daega99-arewethereyet.blogspot.com/
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Ugh – what a day! I hope you find a solution soon – this has to be soooo overwhelming! Thanks for stopping by as well – nice to 'meet' you!
~ICLW
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I think that it's ok for you to cranky with everything you have going on. I don't have any words of wisdom but just wanted to let you know I was thinking about you!
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Oh Heather – that breaks my heart. I wish things were going better. Are there any support groups in your area? Maybe that would provide an outlet for you at least. Wish I could help more! Hang in there – you're a great Mom!
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I agree with musicow2 – you are not just cranky. You are exhausted, in just about every way. You have been slaying these dragons every step of the way, and your resources are tapped out. I don't know what it's like to go through your journey, but I do know the feeling of being tapped out. I wish I could help with finding a job for Sebi, but I'm on the other side of the planet. What I can do is pray. Pray that God renews your spirit, your mind, your strength, and your body. Love you sooooo much!
Sarah
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Okay. I'm mad at your doctor for you. That's ridiculous! I definitely wish that I could find a job for Sebi, but until then… I'll just pray. For all of you. Sending you hugs and warm wishes. I so hope you are able to find some respite… somewhere.
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Oh Heather…I think you are totally justified in how you feel. I just can't imagine. How can your dr not call you back? What a loser! Is there another dr you could find? I don't have any answers, but believe me, you will be in my prayers! Don't give up! ((HUGS))
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OMG you're so allowed to be MORE than cranky and irritable. I'm sure you've considered switching doctors? Or just showing up one their doorstep before they even open so they have to see you? I wish I had better suggestions. Hang in there…
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I agree with everyone else: you DON'T need to apologize for being "cranky" – you've got a hell of a lot on your plate with not a lot of support from the medical community.
Thinking about you all and sending love. <3
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No need to apologize for being cranky. You are allowed to be cranky… are you being honest? Then be cranky all you want.
Liddy from
No. 144: the unfair struggle (male-factor, speedskating, life)
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Thank you for sharing some ICLW love with me – I wanted to do the same and am glad now to be a new blog follower!
As others have said, you have every right to be cranky! Thinking about you and sending you good thoughts.
ICLW
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You're such a strong mommy. You do your best and I admire you for that! I mean, every parents have those days when their kids just don't behave, but your situation is completely different. No one should judge you. You're inspiring.
Life of an Artsy Mom
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((Hugs)) Wow. I think you are doing amazing especially when having to deal with uncooperative drs. I would cranky, too.
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Thanks for the comment. I hate the ignored by doctors game too. I hope things get better for your little guy.
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Oh wow- I can't imagine hwo difficult it must be to make such long trekks for care for your child. I don't blame you for feeling as you do. *hugs*
ICLW
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Do you believe in Xanax? It's kinda like saying to yourself "I do believe in Xanax, I do! I do!" This is my favorite part of giving up lactating. Xanax!
But if not, I am sending you the internet version of what I give anyone post birth – an e version of a homemade chicken pot pie.
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Um, I have a really hard time with screaming. I am not that patient a person. Do you believe in Xanax?
So if not, I'll send my next best thing – an e-version of a homemade chicken pot pie. Got the recipe from a Mormon but its really nice with beer.
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Hi, I'm a Savannah Mom, not sure how I found your blog but I've been reading for a few months. I hate that you are having such a difficult time with the local medical community. Doubt I can help, but I'd be happy to get together. I homeschool my 12yr old daughter so we have a fairly flexible schedule. Hope this doesn't seem creepy
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WOW, what a day! Hope everything works out well
~Stopping by for ICLW #78
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((HUGS))
Are all the kids docs in Savannah so nonchalant? We just moved here in October, so I really haven't experienced much in that area.
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Oh honey, you're not a whiner.
I have no helpful words. just wanted you to know I was here listening. And I love you.
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Heather, sometimes parenting sucks, doesn't it. I wish I could make things easier for you and for Jack. I understand special needs and I understand being an advocate for your child. I also so understand getting tired of it all.
Dawn Davenport
http://www.CreatingaFamily.org
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Ughh. I'm so sorry. You have every right to "whine" because you are going through so very much. You know, it is ironic, before I went through so many medical and issues with my DD#1 I didn't know how tough things could be. And now, when I hear other people (other moms specifically) complain about things would seem really EASY to me or that happen on a daily basis in our household and they only have to deal with on a monthly or less level, it just gets to me. I guess it is hard to understand or relate until you go through something big.
I'm sorry to hear the healthcare and services in Savannah are so meager. I've lived all over the US and it seems I am always running into crappy services, but overall I probably feel like the smaller towns/areas do suffer more than others. Such a shame because Savannah is such a cool town!! I've only visited a few times but I loved it.
Big big (((hugs)) to you.
You are doing a FABULOUS job. Just know that. And remember to breathe. (sometimes I forget to do that myself
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I can only imagine how lonely it feels. But you are not alone. Though all we can do here in the blogosphere is cheer you on, and sympathize, and send virtual hugs, we are here to listen, to bear witness, to say "no, you're not cranky or crazy. You are human. And you are doing such an amazing thing." *hug*
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Hi Heather, I only just found you on twitter, and just now today found your blog, so I don't know all of Jack's history.
But from reading this post, my initial reaction is to ask you if Jack has been tested for a corn allergy. My Blythe is extremely corn allergic, and when she is exposed, it wreaks havoc on her nervous system. Screams (a really painful scream), her body "seizes up" (but not a "true" seizure) she flexes and releases over and over, she loses the ability to communicate, and starts trying to hurt herself. This began when she was 4 months old. Now, at nearly 3, we're able to control her exposure enough that it rarely happens to that degree. Let me know if you'd like more information or resources to see if the symptoms are consistent with what Jack is experiencing.
And also? You don't have to apologize. This is your space!
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