We are grateful to receive.....

I just had to post about Ariane's knitting. I can't knit.. but I LOVE knitted things. She made the boys the most amazing socks... I LOVE my woolie socks, but socks for little boys are impossible to find! There are actually two pair for Manny, but I think the blue ones are on him right now, as he's in the backyard with Steve. They're superwash wool even!

Steve got this awesome hat. I think my Dad needs one of these!


I'm getting a pair of absolutely gorgeous fingerless gloves (I saw one, but they're still being knitted.) I can't imagine how a mama with a full time job and two kids might have ran out of time to knit. I LOVE you Ariane.

Ok, and here's just some more fun video of the holidays, just for fun:

First, one of the boy's presents from Granny and Pops. Jake LOVES it. They also got them a large therapy ball (thank goodness, because ours got busted). Their gift to Steve and I was a membership to the Creative Discovery Museum. WHOOHOO! We actually used it yesterday and they had a blast.


And, NOWHERE else will do for Jake, not even his very very favorite places. I actually made the mistake of telling him where we were going a day in advance. Sheesh at the meltdowns! I won't do that again.


And lastly... Jake's latest food obsession. Don't you just love the way he says 'sushi sandwich'?


Ok, that's all for now. BTW. I truly appreciate all the friends who follow my blog and offer us support whenever we've had a rough time. Some of you call or write me every single time I post, and you just don't know how much that means to me. I don't know what we'd do without the people who are interested and involved on a day-to-day basis. So many friends and family members called, texted and FB'd on Christmas day (sorry that we were in the woods and couldn't reply, we love you all and heard everyone). Hope everyone has a great new years celebration.

Holiday Update

The "pressure cooker" of the holiday season is almost over. Again, its no secret that I'm a bit of a scrooge, but, since get-togethers that revolve almost 100% completely around gift exchange and blatant consumerism with less emphasis on simply being together and getting to know each other go very much against our ideals and beliefs, it can be grueling. However, I was very disappointed that we were unable to make it to Mamaw's get-together, especially since it was her first one without Papaw. Unfortunately, myself and both boys were very sick during that weekend, and I actually ended up at urgent care with a myriad of ailments the day we were supposed to be at Mamaw's. The boys healed quickly, and I am still on the mend, but we managed to have a beautiful holiday.

Santa came to visit one day early, on the morning of the 24th. The kids LOVED their train as you can see here:



A friend of mine, a grandmother herself, told me the other day, "You are a family now, make your own traditions that fit your lifestyle and beliefs, it doesn't always have to be the way 'grandma used to do it.'" She's enjoying seeing her own children and grandchildren begin their own traditions. I think she's a special lady for having this attitude. We have our own beliefs, but just like everyone else we just want to be with people who are accepting and respectful during this time. This was our second year at Kevin and Ariane's house for Christmas, and, since nobody threw up this time, it was awesome. Christmas day both families (we missed you Donovan!) spent communing with nature with a trip to High Falls State Park. Because of the copious amounts of rain that we have received lately, the waterfall was an awe inspiring experience. A stretch of river that is dangerous on a normal day (any waterplay in this area is strictly forbidden) was a death trap. Absolutely gorgeous and an experience I'll never forget.



Although Manny only slept a few hours each night, which made me tired and grumpy, I was so glad to spend those days with our friends. I think it will be this way for many many years to come (if they'll have us). Thanks for having us, Carithers Family.



The kids have had a great holiday. They have received some really really nice gifts. Both Steve's family and the Carithers understand and respect our "toy rules", knowing that its not just me being a horrible nasty "mommy dearest" in making these rules, but that its just us trying to do what is right and that its important to what we are trying to teach our children as well as their developmental needs.

After a couple of days to recuperate, my best friend in the whole world is, as I type, on her way here from St. Louis. We've been friends for 16 years and have been through hell and high water together. We usually get to see each other about twice per year, but due to well, life, its been almost a year and a half. I can't wait, and I'm about to jump out of my skin waiting for her to get here.

We'll probably do nothing but watch kiddies on new years eve, since a babysitter is out of the question, but Katy the door once they go to sleep! Happy New Year!

We Got a Santa Picture!

I'm actually very very happy with how today went, despite the unimaginable situation that we encountered. The visit to Santa was completely impromptu. I thought about sending this as a letter to the editor (thats why I mentioned neither boy's name), but I probably won't. No use stirring the pot in this weird little small town.

**************************************

This morning my 4 year old son came to me and said "Wanna go see Santa." This is a big deal to my family and I, because my son is autistic, and we're not always sure what is going on inside of his head. He talks and has a lot of words but he has a lot of trouble communicating his wants and feelings to us. I didn't even really know that he understood the concept of Santa, or that he could GO see him, even though we try to explain.

All morning he asked. I couldn't believe it. I was skeptical, but I was taking my son to see Santa. I didn't even care about a picture, because we have never been able to get a professional portrait done of him. He simply can't sit still or understand most instructions and gets very anxious in any new situation. Minutes after Walnut Square Mall opened, I headed to Santa's headquarters with my son and his two year old brother. We only had to wait behind one family who was photographing their baby. It took a bit of time, so my son was impatient, and I was getting worried that he would melt down. My stomach was churning with anxiety hoping that this would be a good experience for him as he tried every opening to run to Santa and into another family's picture.

As soon as the family in front of us was finished I said "Its your turn!" and my son flapped his hands wildly and doubled over giggling in excitement. Almost at that same moment, a group of three ladies, all senior citizens, walked up to Santa's entrance. The one in front began banging on the table to get someone's attention, while I spoke to the lady in back. "Oh, please, we've been waiting a long time and my son is getting very impatient, we were here already." Then the ladies proceded to go stand by Santa for their picture. I exclaimed "I told him it was his turn, we were next!" Two of the ladies looked at me like I was a nutbag, while the one I has spoken directly to mouthed "I'm sorry." out of eyesight of the other two. My son burst into tears. He cried and cried while I tried to wait for the ladies to first have the picture made, for them to argue a while with the photographer, and for them to socialize with a friend who walked up.

When it was finally my son's turn, he ran up to Santa, put his head in Santa's lap and sobbed for a second, then pushed him away and ran to me saying "Go home?!" I took him to the car. I wanted to cry and I was very close to it. We were so close to this being a good experience.

While putting my sobbing son in the car and choking back tears, a tiny voice says "Go see Santa?" Really? After all of that, my son was asking again. Usually, once he has a bad experience at any place, he may never want to go back again, and his memory is VERY good. I asked him if he wanted to go back inside to see Santa. He said "Inside, see Santa!" Of course I loaded up two boys again, and not only did we get to see Santa, we got a picture with both boys.

Please be kind to others, and look around and take notice to what you are doing during this holiday season. Speak up if you notice one of your friends being unintentionally or intentionally rude. Never underestimate the importance of an event to a child, and never make assumptions about someone else's situation.

*********************************************

MRI appointment (aka, "This is the appointment that never ends.")

Once again I got up at 4:30 AM, got everything in the car, and picked up a soundly sleeping Manny (guaranteed to sleep through the night if he has an MRI appointment, and no other time), and put him in the car with his pajamas and a sippy of juice. Check in and waiting went well. Only the receptionist decided to bring up last month's visit. I didn't even respond to her, especially since she had just been rude to myself and a terrified looking couple with a 22 month old, also diagnosed with NF1, here for her first MRI.

Manny showed his propensity to tear out an IV line with his teeth once, then, after another was positioned and I was left to hold him down while he screamed hysterically, the nurse showed up and sheepishly told me that the wait would be anouother 45 minutes or so. Ugh. So.. thank the universe for babywearing and my Kinderpack because I scissored Manny between my legs long enough to hook up the carrier in the front carry, put him in, and that way not only could he not reach his IV with his hand, he also couldn't reach it with his teeth as long as I kept my arms in a "hug" position. About 1 minute of that and he was fast asleep. Whew. Once we were called in the doctor and nurses insisted that I put Manny down instead of sedating him while he was still in the carrier, like I suggested. So, he ripped out another line with his teeth, and once yet another IV line was put into his arm, he was finally sedated.

I had a great nap and he was brought back to me, all corpse-like and weird. He woke up pretty well and we went to lunch, then back to Dr. Aguilera's office (the hematologist/oncologist).

Great news! The tumors have not changed one single iota. They have not grown or changed, nor have any more appeared. She wants him back for another MRI in six months (instead of the four she'd suggested before). Hopefully, if that one is the same, we can go to MRIs ever year, instead of so often. This is the best news that we could have hoped for.

Next she sent me off to audiology to see if Manny would cooperate with an audiogram. We were unable to coordinate the hearing exam with the MRI this time, as Manny wouldnt' be able to be sedated long enough. The audiologist did a few tests that we couldn't really complete, as Manny was tired, but she did say that Manny has quite a bit of negative pressure in his ears, possibly due to congestion from a cold, but also possibly due to fluid buildup behind his eardrums. Manny often complains of ear pain and acts like he has an ear infection, though no infection is every found to be present. Its possible that he has fluid in his ears that could be causing an issue with his hearing, hence the speech delay. After speaking to the audiologist, we feel like this is an avenue that we definitely need to investigate.

I made it back home around 5:30. I'm tired but happy with today's appointment. I'm off to try to relax for a while.

A New Week

My attitude has greatly improved after a weekend with friends and family. Especially yesterday at the market. So many family members and friends have shown up to the Market to visit, even on cold rainy days like yesterday, knowing how important it is to me. I can't believe the support that I've gotten from everybody in this endeavor. Its been hard work, and honestly, I'm looking forward to the end, but I still have next Sunday and the 2 day holiday market the first weekend in December, and even more family have promised to attend and show support, so I'm looking forward to that. The management must like me too, because I was the 'featured seller' in the Market bulletin, and my bags were featured on a "This 'n That" segment Friday at noon on Channel 9!

Manny's MRI is rescheduled for 3 weeks from now. Thursday his OT from BCW came by, and, giving the fact that I still hadn't stopped crying from my mental breakdown on Wednesday, I completely forgot, and Manny was asleep when she showed up, making for a miserable OT appointment. I explained, and promised to be more prepared during the next session. Manny is still attending the pre-school 2 days per week and is doing really well. The teachers seem happy to have him, and he doesn't cry and plays well when he is there.

Jake is doing wonderfully, both in school and at home. We had another meeting last week to discuss him getting occupational therapy at school. The OT denied him saying that the sort of OT that he needs (deep pressure, sensory, balance, etc) isn't the kind of therapy that she's comfortable giving saying "You know how people are these days, they might not understand seeing me roll a child in a run and giving them deep pressure." Ugh, so... you aren't comfortable doing your job. I will continue to do what I can to meet his needs in that respect at home, and more than likely we will pay out-of-pocket again this summer to go see Cindy at Tips.

I'm off to start a new week. I'm hoping that the Thanksgiving shopping rush includes my store this year. I was desperately hoping for a couple of hours of childcare for Manny this morning, but Mamaw just returned from a 2 week stay at my Aunt's house. She seems to be doing well, but sounded tired yesterday when I spoke to her so I didn't ask. My goal today, even with Manny's help, is to do inventory and get my shop in order for the upcoming (*hopefully*) shopping rush, finish some orders that have become a bit late, ship everything that needs shipping, take pictures, and put up listings. In other words, I need to get rid of this sinking feeling that I'm falling further and further behind. Off to get started!

The MRI appointment that wasn't

I got everything packed and ready for our trip last night. Steve took today off of work so that he could get Jake on and off the bus and spend time with him this afternoon. The MRI appointment was at 8 with registration at 7 AM, along with the hearing test, blood panel and then a follow up visit with Dr. Agulera (hemi/onc) at 3 PM. We were in it for the long haul today.

I woke up at 4:30 this morning, got dressed, then changed a sleeping Manny's diaper and was in the car by 5 AM. I arrived at the hospital shortly before 7 and went to registration. During registration, while I filled out the mound of paperwork, Manny began fussing and got out his sippy. He had two sips, and I was right there... letting him, when the receptionist said, "If he's a sedate he can't have that." Oh yeah, I thought, and took it away. She sent me across the hall, and informed the receptionist at MRI that he'd drank fluids. They sent us home, because his appointment could not be moved up one hour, they were too full. The nurse from MRI who informed me giggled and shrugged and said, at least three times "Well, at least you'll never forget again." "Like I said before, you won't forget again." I get it, lady, you're sending me home as punishment for not following hospital orders. I was sobbing, and had been since the first receptionist chastised me and asked me "Didn't they tell you? It says here that they talked to your husband yesterday, did he not tell you no fluids after 6 AM?" YES, everybody fucking told me... I'm an idiot. I get it. This is the first time I'v broken down during any doctor's appointment. I cried all the way home, and I'm still upset. I hate this.

Maybe contributing to my "bad attitude" is the fact that Manny never sleeps. On a typical night, he goes to bed just fine, around 8:30 or so. He's no trouble at all to put to sleep. He regularly wakes up around midnight or 1 AM and is awake until 4 or 5 AM. Sometimes he's just awake, sometimes he cries the whole time. We've tried a zillion different methods, he's been checked for ear issues, reflux, and a host of other things. I get a lot of advice on this, and all that makes me sure of is.. we're doing that wrong too. I haven't had a night of this that I didn't end up breaking down for at least a couple of hours in the middle of the night. Steve and I tag-team dealing with him every night. After many nights of this he will usually sleep for a couple of nights all night, making us think.. really? is it over? Then he goes back to no-sleep. The nights that he does sleep, I wake up constantly, wondering if he's OK.. because if he's not awake, then is he breathing? If he sleeps late or naps during the day, I have work to do, or Jake to care for, or something. Sometimes Steve's parents actually ASK to take him during the night, so that we can rest. I'm grateful, I really am. I think the last night at her house wore her down a lot though.

Its wearing on my sanity, laying there with him... feeling him get still, then holding my breath, literally. Is he asleep? Surely he is, he's been up since midnight. Oh gosh, I have to pee/cough/move my foot because its asleep, but I won't. I'll be still... ten whole minutes.. Nope, he's still awake, and I have to get Jake ready for school in 45 minutes. Oh God, make it stop.

Sometimes I have horrible thoughts after night after night of this. I honestly feel sometimes like I've done something WRONG by having children. I should have known. I've never been a happy person by myself, but when I met Steve, it was like the light finally shined into my life. Nothing could go wrong. But now, not only have I created a miserable partner, watching me be unable to bring myself up out of whatever is wrong with me, but I've created two children who seem also to spend most of their time being miserable. I should have known I wasn't capable of dealing with this, and I should have made better decisions. I feel like I've created some sort of black hole and that I should have stayed alone. I don't feel right asking anyone to care for my kids because I can't stand the run-down of how miserable they made the caregiver. I can't even understand why Granny and Pops even want to deal with them. I know they love them, but they have the option to love them from a distance, and thats gotta be too hard to pass up. A comment was made about what hell I put my parents through as a teenager in regards to the trouble I'm having dealing with my own emotions. Does that mean that it "serves me right" that I have disabled children because I was a bad kid? Have I not done anything good enough EVER just to deserve to hear Manny say "Mama."?

I guess whining doesn't really help anything. I was hoping to get everything over with today, and get whatever news it would be. Good news? Will any future appointments with Manny ever be "good news?" I'm afraid that they'll be either "nothing has changed" or "the tumors are growing." Staying the same being the "good news". I'll reschedule all of the appointments, and try this again, and yeah... I won't EVER forget not to give Manny fluids before any of the dozens and dozens of MRIs that he is certian to get in the future.

OT evaluation, and "The Bug"

Manny's evaluation with the Occupational Therapist from Babies Can't wait was Thursday. S.H. stayed for about 30 minutes and asked a few questions about Manny. Honestly, I haven't been impressed with BCW this time around. Its been over a month since his arena evaluation, and now we're set up with an O.T for once every other week.. and she doesn't seem flexible at all with her schedule since she only comes to Dalton about one day every two weeks. In fact, what we really need is a SPEECH therapist, since his speech is the most delayed. Children of Manny's age should have a vocabulary of over 500 words and should be speaking in short sentences. Manny, still, only has a couple of partial words. I jumped the gun when he started saying "car" and made the video. He has not said that word since that day. I suppose I am going to have to start pushing the issue and get him private speech therapy, whether paid for by the State (which we are entitled to) or paid for out of pocket.

I am enrolling Manny in the preschool at the church just a mile from here. It is the same school where we tried to send Jake a couple of years ago and it didn't work out (through absolutely no fault of their own). Even though his birthday is one week past the deadline, I found out from a friend who works there (thanks Holly) that there are only three boys in the two-year-old class, and two teachers. The director said they'd be glad to have him. He will be attending 2 mornings per week for just about 3 hours. It will be great for him to be around typically developing children of his age. I really hope it works out. My stomach churns with every endeavor like this, since I've never had good luck with.. well... anything concerning being a parent.

This Friday evening the Carithers family was supposed to come up for a visit, spend the weekend, go trick-or-treating, put the kids to bed, party like adults Halloween night, go leaf-looking and whatever else we could get outselves into. Friday morning I awoke with a bit of a scratchy throat, but Steve got Jake off to school and I dealt with the five poodles that were dropped off at 6:30 AM. By 7:45 AM I was curled up in a ball sweating and shivering with fever and in pain from head to toe. Yup.. the FLU! I tried to finish the poodles with Manny tied to my back but simply couldn't do it. The school called to let us know that Jake was passed out in the floor, also with a fever. Steve took Manny with him to pick up Jake while I fell asleep in Manny's room (for some reason). He returned and told me the amazing news that Pops was coming to the rescue. Get this, even though Steve's mom was out of town, Pops showed up and snatched Manny for the entire day. I don't really know what would have happened otherwise. Steve's work-day was too demanding for a day off.

So... the entire weekend of fun was called off and I am finally on the road to recovery after a couple of rough days. Jake is off-and-on feeling better, Manny is just now getting the flu, and Steve is... well, we're crossing our fingers for him. He took care of me and waited on me hand and foot all weekend. I hope I don't have to return the favor to him under the same circumstances. I'd rather be nice to a well husband. I don't know what I'd do without the amazing men in my life.

Another work-week starts tomorrow. The Parents.com was supposed to come out "end of October".. and I haven't heard anything. I'm getting worried. Its Ok, though, I have a lot of stock and sick kids to take care of. Work can wait.


(Below) "Flu-stock 2009"